Congratulations! Your Child Is Strange Advice From A Random Stranger Based On Anecdotal Evidence This book is dedicated to my father, who taught me how to live a life worth living by example. Thank you Dad. Table of Contents Introduction 1 What Do I Do? 6 What Is Autism/Asperger’s Syndrome/PDD-NOS? 12 What Causes It? 18 How Does An Autistic Person Think? 23 What Causes The Problems? 33 What Causes Stress? 45 How Do You Deal With Stress? 72 So How Does This All Come Together? 90 How Do We Handle Problematic Behaviors? 104 What About Socializing? 128 What About Stimming? 137 What About Treatment Programs? 145 What About Medication? 159 Should I Tell My Child He Is Autistic? 165 What Does The Future Hold? 170 Where do we go from Here? 174 Epilogue 178 Page |1 Introduction In my opinion, every nonfiction book needs an introduction to explain why the book was written, what the book is about, how to use it, and other important information that the reader needs to know. Since this is not a fiction book, it seems that an introduction is called for. This introduction is also an opportunity for me, the author, to ramble on about things which I want to ramble about. If you want to skip the introduction, and get strait into the meat of this book then flip over to the next chapter. But if you are interested in hearing me talk about myself then read ahead. It isn’t integral to the rest of the book, but it may provide some useful insight into where the information in this book is coming from. To make a very long story short, I am not normal. I was not born normal, I did not develop normally, and barring some act of God, I will probably remain weird for the rest of my life. I started talking late. I didn’t act like a normal child. I rocked back and forth, I avoided other people, and so forth. When I was 3, my parents took me to the doctors concerned that there was something going on. The doctors did a physical examination and determined that there was nothing horribly wrong with me physically other than being skinny and short. I was just developing slower than most children. They told my parents that there was nothing they could do, and they should just wait for me to catch up. I suppose in retrospect, that was the closest diagnosis I could get to autism (commonly referred to as a developmental delay) at the time. The simple truth is that if I was born today I would be labeled as autistic before I reached 2 years old. I never received any special medical label, and lived my life wondering why I was so strange. Believe me when I tell you that it wasn’t hard to notice that I didn’t fit in with the other people around me. It wasn’t hard to notice that some things which came easy to normal people were always very difficult for me, and vice versa. It wasn’t hard to notice that no matter how hard I tried I could never fit in, nor live up to people’s expectations. I was always assumed to just be obstinate, lazy, crazy, or any one of a dozen other derogatory terms, applied by those around me. I was always the strange kid in school, and as such was treated very poorly by the majority of my peers. My home life wasn’t all too great either. My mother made it an important part of her parenting technique to punish me for anything and everything that she considered to be a problem, regardless if I could to anything about it. I can honestly tell you that my childhood was a thoroughly unpleasant time. Eventually I grew older, graduated from high school, and went to college. I learned to avoid the people who made me miserable, and just spend my time alone on the computer. To be honest, I think this is what saved my sanity. Over the years I figured out for myself what did and didn’t work. I figured out how to deal with my short comings, and how to take advantage of my strengths. I figured out the most effective ways to deal with people, and how to keep Page |2 myself from being a nervous wreck. I basically figured out how to make the most out of my life given what information I had available. When I was 21 years old and in my senior year of college, I watched a show about Isaac Newton on Nova. After recognizing some similarities between me and him I decided to look him up on Wikipedia and find out more. A few clicks later, after reading about his unique (and oddly familiar) personality, I wound up on the Wikipedia page for Asperger’s Syndrome. As I read the page it was a somewhat surreal experience to say the least. It was like somebody had followed me around all my life and decided to condense my life story down into a single article. To say I was dumbstruck would be an understatement. I don’t think I can describe in words what it is like to finally know why I was so different. The best I could possibly convey is that it is an amazing sense of relief, and understanding to know that I am not just some random freak who isn’t right in the head. At the same time it answered so many questions, explained so many things, and put my entire life into a perspective that for the first time actually made sense. It was probably the most important discovery of my life. Since that discovery, I finished college with my degree in mechanical engineering. I then got a job, moved out, and now live independently. I can’t say my life is 100% perfect, I still have some problems. But my life today is better than it ever was when I was younger. I have learned so much about myself, who I am, and how to make the best of it. Today I am happy and content with my situation. And while I cannot say that I have all the answers to all problems, I do know that I have found my own answers which have allowed me to get to where I am. In my quest to learn more, I have picked up every single book I could find about Asperger’s syndrome or autism. I have read books written by doctors, parents, and other autistic people. I have also read thousands of articles about the condition, everything from medical information to parenting techniques for autistic children. Perhaps most importantly, I found an online message board where people like me could log on and talk to one another. Simply being able to have a conversation, and get to know other people like me, was a very rewarding experience. All my life, I have never been able to really understand normal people. But when I logged on to the website I found out that while in there, I was normal. For those who are interested, the forum is called WrongPlanet. You can link to it here: http://www.wrongplanet.net/forums.html This forum also has a section where parents of autistic children can come and post their questions, ideas, and anything else they would like to say. While I was browsing the forum I happened to see some mother post a question about why her son was acting so strangely. Since I act the same way, and know why I do so, I was able to explain it to her from her son’s perspective. She thanked me and it helped both her and her son. Since it felt nice to help her out I decided to visit the parenting section more often and give out advice when I thought I had Page |3 something useful to contribute. Also, I would be lying if I said that giving advice didn’t help me personally. In a way, helping out these parents and children is the best therapy I could get for dealing with my own childhood. Over time I wound up giving a couple thousand pages worth of advice, and several of the parents suggested that I should write a book. At first I didn’t really like the idea of writing a book. My problem is simply a matter of trying to provide adequate information. How can I possibly provide relevant advice with a book where I know nothing about the reader? But, as fortune would have it, I recently lost my job since my company didn’t have enough work to go around. So, that left me with a large amount of free time on my hands and I needed something to do. As I thought about writing a book, I realized that while I cannot answer every question, I may be able to help clarify some common misconceptions and help parents to better understand their children. The worst case scenario would be that I accomplish something productive with my time instead of waiting on my fruitless job search to turn up anything. The second (and perhaps the more important) reason I am writing this is very simple. I want to make it very clear that just because your child is strange doesn’t mean they have to suffer and live a hopeless and unfulfilling life. Your child can learn to be happy with their lives. Despite what the over emotional and ratings driven media tells you, having autism is not some horrible life stealing, soul crushing disease. But as I look back on my life I can come to one very simple conclusion. The reason I was so miserable and depressed as a child had nothing to do with the fact that I was autistic. It was caused by the way other people treated me. If people had just taken the time to help me out and work with me instead of punishing me for being different I wouldn’t have been so depressed. So that is why I am writing this book. I just want to make sure that no child has to go through what I went through as a child. I am not saying that this book will solve all your problems and make everything wonderful. But at least it may help you understand things a bit better. So, I think that explains why I am writing this book, the next item on the list is what this book is about. This book, if I had to summarize it as much as possible, is simply explaining what autism really is, and what that means for raising an autistic child from an autistic person’s perspective. I have read several books written by psychologists and parents about how to deal with an autistic child. These books may be written with the best of intentions, and they often have good advice. But the problem I have is that they are not always correct at explaining what is really going on. The authors don’t know what it is like to be autistic, and the things they write reflect that. I can’t blame them for not understanding; it’s not possible for them to know. For the sake of comparison, it would be like a male writing a book about what pregnancy. The male may do a lot of research and try to get as much information as possible; but he would never get the full picture about what it feels like to be pregnant. So, with this book I am going to try and Page |4 explain things from the perspective of somebody who has been there, done that, and figured out the hard way what works and what doesn’t. As for other important information you probably need to know, there are a few things worth mentioning. For starters, I would consider myself to be a Christian, but perhaps not in the strictest sense. I don’t believe in taking parables and metaphors and interpreting them literally despite all evidence to the contrary. I also don’t think we should take cultural obligations from a 4000 year old tribe and apply them unquestioningly. But despite those disagreements, I still believe in the intent of the religion. Specifically, I believe that within every human being there is a base human nature which causes us to be less than perfect. We all want to lie, cheat, steal, abuse the system, take advantage of people, shirk our responsibilities, and put our own desires above those of others. Nobody wants to be patient, or develop perseverance. We all want to get what we want, when we want it. This is not something that you need to teach to your child, nor anything you can remove from them. It isn’t due to autism, and it isn’t a sign that you’re a bad parent, or that they are a bad child. It is merely a sign that they are human. But despite our self centered nature, it is important that we develop our virtues and learn to overcome our harmful natural instincts. This is not just for autistic people, or children, it is for everybody, parents included. It isn’t something that you just achieve one day. It is a lifelong process to develop the virtues of patience, kindness, self control, and respect for your fellow man. It requires that you put forth a continual effort each and every day in order to grow. I also believe in the importance of forgiving others when they fail to control their base instincts. It is everybody’s responsibility to help those who are struggling. And we should help them, not by punishing them and making them suffer for the faults they are born with, but by working cooperatively with them in order to help them overcome their difficulties. My advice is all based on this premise, and you will clearly see these ideas over the course of the book. If you disagree with me then that is fine. I can’t force you to believe what I do, and the point of this book isn’t to convert anybody. But just be aware that if you dislike the ideas of developing virtues, and treating others with respect and compassion, then you should stop reading now. I will readily admit that I am a hypocrite. I can speak all I want about patience and forgiveness, yet I myself still get impatient and have trouble forgiving those who have wronged me. But perfection is not what is important; what is important is that you try despite the struggles, and help others around you when they struggle too. I should also point out that I am not the only person who grew up weird without receiving a label for it. While Temple Grandin is a nice person, she is not the only adult who is autistic. There are hundreds of thousands of adults who grew up never receiving any label other then weird. Prior to the mid 1990’s the only diagnoses handed out were for people with severe and obvious disabilities. If you talked before age 5, or showed any sign of intelligence Page |5 you were basically disqualified from getting a diagnosis of autism. There, of course, was also the social stigma attached to having your child diagnosed with autism. That meant even obvious cases often went without a diagnosis because the only thing a diagnosis provided was blame for the parents, stigma for the child, and no services whatsoever. Autism in previous generations was much more prevalent then the recorded 1 in 10,000; it’s just that most autistic people never got diagnosed. So don’t think that I am a rare and unusual person who is uniquely able to write this book. I just happen to be the one with a lot of free time because I am unemployed. If you want to get the perspective of other autistic adults then I encourage you to go visit the Wrong Planet forums and talk with the rest of them. And lastly, the final important thing I need to mention before this book gets started is that I am not (nor have I ever been) infallible. The advice here is written with the best of intentions, but it will not be 100% correct and helpful in every single situation that ever exists. This advice is all written based on my perspective, and as such may not hold true for somebody who doesn’t operate the same way I do. I am a male, so some of the advice in here may not work for women. Some people will struggle in areas that I do not, and as such my advice may not be useful in that area. Yet others may be able to do things and handle things that I cannot. So, I encourage you to read the chapters and think about it for yourself to see whether or not the advice is applicable to your situation. If you have a serious question, and you would like input from more than one person (always a wise idea) then it is probably a good idea to consult with other people such as the other parents or autistic people on Wrong Planet or any other of a dozen websites. You could also look for local support groups in your area, or read other books. While I am happy that you are taking the time to read my advice, asking more than one person is never a bad thing. Page |6 What Do I Do? If you are reading this book then you are probably looking for answers to a couple thousand questions. Many parents wind up getting a diagnosis from the school, or read about the condition online and then get their child diagnosed. But they are left thinking, “Great, we have a label, what do we do about it?” They wonder what they should do, what they shouldn’t do, what therapies to get, what schools to put their children in, how to handle the behavioral problem, what they should expect, and so forth. This book was written for parents in this position. I cannot guarantee that all your questions will be answered the way you want them to. But I can guarantee that I will try to provide answers to the most popular questions in a way which you will hopefully understand. This book is designed to take you from drowning in a sea of questions to providing you with a firm foundation which you can start from. This book won’t solve all your problems in 5 easy steps; but it will provide you with the information that you need to move forward in an effective manner. The first, and most important, step in making the best future for you and your child is to start off by remaining calm so you can deal with life effectively. If you remain calm, do some learning, and pick a path forward based on sound reasoning, then your child can grow up and become the best person he can be. If you act rashly based on your emotions then you are likely to make the situation worse. Unfortunately many parents get a label, become frightened, and then enter parental panic mode thus allowing their emotions to start making the decisions. In their minds they view autism as though it is a ticking time bomb that is about to destroy their child’s life. They feel as though somebody has kidnapped their child, and like any good parent they start to panic. I mean, who wouldn’t panic if their child got kidnapped? This causes the parents to do one of two things. They might begin fighting back and try to ‘defeat autism’, ‘overcome autism’, ‘cure autism’, and my favorite ‘save their child’. The other option is that they might become depressed, saddened, and just give up all hope. Both of these actions are driven by fear, and neither one of these is good options. It has been said that fear is an acronym which stands for False Evidence Appearing Real. This is definitely true. When parents enter into panic mode they begin to believe things which aren’t true because they aren’t calm enough to rationally think things through. Parents are told by society (and some ‘support’ groups) that since their child is autistic they will have a horrible, depressing, worthless life. And since parents are blinded by fear, they believe this. Parents then get together, hold rallies, and make emotional speeches like, “I love my child, but I hate autism.” Followed shortly by, “I am going to fight autism everyday and never give up.” If you want examples of this then just Google ‘autism’ and you will find many parents, websites, and advocacy groups proclaiming this message. Page |7 This causes panicked parents to think that autism is some horrible sickness which is afflicting their otherwise normal and healthy child. For example, you can take a normal child, and add on something like cancer. If you then cure the child of their cancer, they go back to being a normal, healthy child. This idea is commonly used with autism, leading the parents to believe that their child is normal and healthy underneath, but the autism is some illness which prevents them from being the person that they are supposed to be. As such, parents will try lots of different diets, therapies, treatments, programs, and spend ridiculous sums of money trying to cure their child of autism. The problem is that this notion of autism being some curable disease is not true. Autism is not some disease which covers, suppresses, or takes over the child; it is something which is intertwined with who they are. Just like being male or female makes up a part of who you are, being autistic is a part of who they are. It is like mixing in coloring dye into a jug of water. You cannot separate the autism out; it is an integral part of who that person is. You cannot cure an autistic child of being autistic any more then you can cure a man of being male, or a women of being female. So when you try to ‘cure’ your autistic child using therapies, diets, and all that other stuff, then you are inevitably going to fail. This may not be what you want to hear, but your autistic child is autistic and will remain autistic until he dies. I am not saying you should do nothing, nor am I saying that your child can never improve and grow as a person. There are many things that both you and your child can do to deal with his difficulties and help him live a better life. I am merely saying that no matter what you do, he is and always will be himself. And part of himself is his autism. I have seen many parents out there refuse to accept this, and they have suffered because of it. For example, let’s consider a typical couple with an autistic child. They have known from birth that their child wasn’t normal. Their son didn’t act normally, didn’t respond normally, and was different in many ways. Some people in their family told them things like, “Don’t worry too much, different kids grow at different rates. Just be patient.” But as time went on their child didn’t develop normally and they became worried. Since they were concerned about their child they decided to get some help from a child behavioral expert. After going through the diagnosing process they were told that their child is autistic. When the couple finds out that their child is autistic they then begin to panic and start looking for any treatments, cures, or solutions possible. They talk to a dozen different doctors which recommend a dozen different treatments. Since they are panicked and desperate they sign their child up for everything. They start by enrolling their child in 40 hours per week of ABA therapy. In addition to that they also sign their child up for speech therapy, occupational therapy, physical therapy, and hyperbaric oxygen therapy. They have weekly appointments with a psychologist, psychiatrist, Page |8 psychotherapist, neurologist, and neuropathy expert. They spend themselves tens of thousands of dollars into debt because they are driven by fear and desperate to save their child. The parents also attempt to help their child by forcing them to act less autistic, and more normal. They discourage their children from rocking back and forth, lining up their toys, or flapping their arms with the intention of making the stand out less. They try to sabotage their child’s interests by forbidding them from collecting things, watching certain shows, playing certain games, reading books, etc. This is all done in an attempt to ‘broaden their horizons’, and ‘get them to think about something else besides their interests’. The parents will try to force their children to be more social by signing them up for things like team sports, and other social groups despite the child’s dislike of social gatherings. They will also sign the child up for therapies which supposedly make them ‘indistinguishable from their peers’. The sad result is that this doesn’t turn out well. After years of therapy the couple is ridiculous amounts of money in debt. They are arguing about finances, how to pay the bills, what to do next, and it is tearing their marriage apart. For all that money and effort, their child is still just as autistic as the day they started the therapy and hasn’t become normal yet. In fact the child’s behavior has gotten worse because he is being overwhelmed by all the therapies, and is never given an opportunity to be alone, relax, and just be himself. The parents are becoming depressed and even more desperate as they are trying to solve their child’s ever worsening behavior. They keep hearing how important early intervention is, and getting help in the critical window. And as the child grows older the parents are left feeling as though they are running out of time to solve this problem and save their child. This causes them to be stressed out, panicked, nervous wrecks who are still fighting autism with the hopes that one day they might cure their child. If this idea is adopted long term then it doesn’t bode well for the child’s development or emotional well being. When parents try to force the child to act less autistic then it usually makes things worse. You can certainly teach the child to act normal, and pretend to be somebody that they aren’t; but you cannot change who they are and how they think. And when your child has to constantly put forth effort and pretend to be somebody that they aren’t it just leads to anxiety, exhaustion, and it isn’t sustainable long term. It also puts the child under more stress which, as I will discuss later, is the absolutely last thing you want to do to your autistic child. To properly explain this, I think an analogy might be in order. Imagine if you were expecting a child and you wanted to have a girl. When your child is born you discover that he is a boy. Unhappy with this unwanted twist, you try to force your son to act more like a girl. You name him Jenifer, and you buy him nothing but frilly pink dresses. For his birthday you buy him pretty princess pony dolls, and a doll house. You forbid him from watching sports, playing sports, hanging out with other guys, playing army, or doing other typical male things. Instead Page |9 you sign him up for things like girl’s scouts, and other such events. Do you think your son would feel happy acting like a girl? Do you think he would ever fit in with the other girls? Do you think he would be happy that you prevent him from acting true to his nature and instead force him to be somebody he isn’t? Do you think he will develop any self confidence if you constantly tell him that who he is isn’t good enough and needs to be changed? Don’t misunderstand me; it isn’t as though being a girl is a bad thing. I am also not saying that your child is perfect and has nothing to work on. The very fact that your child is human means that he will have problems and struggles in his life that will require some work in order to deal with. He will need to learn how to interact with normal people, and he will also need to learn how to function effectively in this world. Nor am I saying that you are a bad parent for wanting to help your child when you see him struggling. There is nothing wrong with trying to help your child and I applaud your motivation to do so. What I am saying is that failure to act normal is not a problem in and of itself; it is just part of who your child is. You can’t force somebody to be something they aren’t and expect it to turn out better for everybody. You need to accept the autism and understand that while your child may be a bit strange, and have some difficulties, trying to make him normal at any cost is a bad idea. You need to focus on helping your child lead a more productive, independent, and enjoyable life; not making them normal so they can blend in with everybody else. The second route, which parents can take, is to become depressed, saddened, and hopeless. They feel sorry for their child, and they are saddened by all the challenges that the child will have to go through. They grieve for the loss of all their expectations and ideas which will probably never come to pass. I can’t say that I blame you; finding out that your child is autistic is probably a shock for most parents, and can be very unnerving. But just because your child is strange doesn’t mean that his life, or your life, has to be horrible. Your child can have an enjoyable life, and while he may not do the same things as a normal person, his life is still worth living and living well. This book tends to focus on some of the problems associated with autism, and may give you a false impression that autism is all doom and gloom. The fact is that autism doesn’t have to be doom and gloom if handled right, and that is hopefully what this book will help you do. So, please, don’t be pessimistic and saddened that your child is autistic. If you wake up every morning worrying about your child, and fretting over his future, then that isn’t going to help anybody. All it will do is cause you to become more stressed out which will just make you more miserable. Autism is not a terminal illness. You don’t have to panic every day and pray for a miracle. Your child is definitely going to be strange, and things will probably be different then what you were expecting, but they don’t have to be worse. You will lead a much more enjoyable life if you learn to not stress out over every detail and worry constantly. You can’t predict the future, nor can you change the past. All you can do P a g e | 10 is make the most of what is currently happening, so I encourage you to do that. Enjoy your child for all the good things in his life, and help him with his difficulties. And remember to not be discouraged or depressed when life has its challenges. Instead, get to know more about the unique child that you call your own, and relax a bit. You may not have been expecting an autistic child, but he really isn’t that bad once you get to know him. So, this brings us back to the original question of, “What do I do?” Well, as I just stated, becoming afraid, panicked, and depressed aren’t good options. That just causes stress for you, your child, and everybody involved. The best option for you is to accept that your child has autism, and then help him to become the best autistic person he can be. And part of accepting autism is realizing that abnormality is not automatically a bad thing. I will be the first to admit that there are some problems associated with autism that need to be addressed. But simply being a bit strange isn’t a bad thing; it is just part of who your child is. If you want to make the best life possible for your child, and have some peace in your household, then you will need to accept these peculiarities as part of who your child is and accept him, warts and all. Your child will probably not want to do the things that normal people want to do. They may want to stay inside and play computer games all day instead of going out and playing with friends. They probably won’t want to engage in irrelevant conversations for the sake of socializing. They may not want to do anything with their peers after school or play on any team sports. They may not want to go out on dates, attend the prom, or engage in romantic relations. They may not be interested in the typical topics like sports, make up, or celebrity gossip. Instead they will probably be interested in all sorts of unusual and atypical things. They may just want to be left alone, act strange, and not interact with the world very much and I am here to tell you that is not a bad thing. I myself don’t go out and socialize much. I play a game of D+D maybe 2 or 3 times a month and that’s all the socializing I do in person. I have never dated and, for the foreseeable future, I am unlikely to start doing so any time soon. My preferred activities are simply staying home and browsing the internet for things like military history, economic analysis, or applied physics. Rather than going out to a party, I would rather stay home and play computer games. And I can assure you that I am happy with that. I am not lonely, despondent, or saddened by my lack of adventure or overly complicated relationships. Simply put, I am happy being who I am and I don’t need, nor want, anybody to try and fix me when I am not broken. If you want to help your child become the best person he can be then you will need to accept this and let him be who he is. The next step towards helping your child is getting a good understanding of what is really going on. I would suggest you start by finishing this book as I have attempted to explain things in a way which makes sense. I know that life may be busy for you, and you may not want to spend time reading or researching. But I still recommend that you set aside a few hours in P a g e | 11 the next week to finish this book. Learning information that will help your child and your family is a very good investment of your time that will pay off huge returns in the long run. After all, if you don’t know what is really going on then you aren’t going to be able to handle things effectively. So it is important that you get to understand your child before you go about trying to change things. Change isn’t always a bad thing, but random change that isn’t well thought through only serves to make the situation more complicated and often times problematic. So, for the next few chapters I am going to explain some things about autism. Hopefully this will help you to better understand what autism is, how your child thinks, and why they act the way they do. While reading this, I encourage you to stop every now and then and think about how this relates to your child. Does this explain any confusion you may have, and does it affect your child? Some of it may fit your child perfectly; some may not match at all. Even the best written book cannot properly explain everything by itself, so you are going to have to do the other half of the work and figure out how the information given here relates to your individual child. P a g e | 12 What Is Autism/Asperger’s Syndrome/PDD-NOS? Allow me to start this chapter by saying that I don’t like the labels associated with autism. The reason I dislike labels isn’t some moral thing where I am opposed to preconceived notions and judging people. On the contrary, I find labels generally helpful when it comes to most medical things. After all, if we couldn’t label somebody as being type 1 diabetic then it would be really hard to coordinate treatments. The reason I am opposed to the labels about autism is that they are horribly vague, and incredibly unhelpful at explaining what the problem is, or what to do about it. Saying that somebody is autistic is like saying “my car won’t go forward.” The problem could be any one of a thousand things from a blocked air intake, to a stuck brake, to a broken driveshaft, to running out of gasoline. It is impossible to fix a car with such unspecific information, and the same problem applies to giving children help when doctors label them with these vague terms. Two children, both with the label of autism, may have completely different personalities, areas of strengths, and problems. Likewise, one child may be given a diagnosis of autism, high functioning autism, asperger’s syndrome, PDD-NOS, autism spectrum disorder, semantic pragmatic disorder, non-verbal learning disorder, generalized anxiety with social awkwardness, or any one of a dozen other labels depending on which doctor you take him to. As such, trying to give any advice based solely on the label is an exercise in futility. The problem is that psychologists have written a very vague and broad definition for what autism is. And over the years, they have expanded what qualifies for that diagnosis significantly. The term today (especially with the introduction of PDD-NOS) is used to describe any and all abnormal development, from not making eye contact consistently, to severe social withdraw and self injury, to being a bit clumsy and missing out on social cues. Now I am not saying that children with the label of autism don’t need any additional help, what I am saying is that trying to determine what help would benefit them based solely on the label is rather unproductive. Too many parents come on to the forums and ask the question, “Is my child autistic?” And the only response I can give is that the name doesn’t really matter. When we become too concerned with stuffing people into the correct little box then we lose all sight of the fact that human beings are far too complex, and far to unique to ever be stuffed into a little check box saying ‘autism’ or ‘asperger’s syndrome’ or anything else. These labels may prove useful for forcing schools and other institutions to recognize that the child has difficulties and get them to help out. But it doesn’t do any good to focus solely on the label and forget that your child is a unique individual who needs to be handled on an individual basis. P a g e | 13 Neurology Of The Condition In order to give any specific advice, I need to break down what autism really is, and how that affects the person. The first thing to mention is that autism is not a result of poor parenting, nor a result of the child just being naughty. It is a result of abnormal neurology. Basically, the brain doesn’t work the way that it does in a normal person. This causes the person to have a different skill set, and think in a different way. What this means for the child depends on what areas of the brain are affected, and how they are affected. Obviously the human brain is far too complicated and multi-faceted to be properly described in this chapter, but if we try to look at things in very simple terms, it may help to understand what is going on. If all this neurology stuff isn’t your thing, then just skip ahead 2 pages. Otherwise, let’s take a look at the different parts of the brain: In the front of your head, just behind your brow, is the portion of the brain called the Prefrontal Cortex. It is involved in "executive functions", such as working memory, decision- making, planning and judgment. If this area of the brain doesn’t work well, then the person may have difficulty with things such as figuring out what to do next. Asking the person an open ended question like, “what do you want to do today” may often confuse them because there is too many options to consider. It may take them a very long time to come to a decision because they have to overanalyze everything in order for it to make any sense. This may not sound like too much of a problem, but when you take 3 hours to come to a conclusion about what seat you want to sit in, it can be problematic. People who overanalyze every situation can live with a good bit of stress because the person has imagined 100 different things that could go wrong for every possible situation. This might also cause the person to have problems with analyzing situations, considering all options, predicting outcomes, and deciding on a good long term course of action. Children with this difficulty often work better when on a schedule that lays out what to do in advance so they can just stick to the schedule rather than planning things out for themselves. Another part of the brain often associated with autism is the amygdala. It is hard to adequately describe what this part of the brain does, but the simplest description is that it handles the processing of emotions, particularly fear. If this area is over stimulated (which is most often the case in autism) then the person will be much more easily startled, and will often have a much higher stress and anxiety level than normal. This often leads to feeling overwhelmed and exhausted routinely and is very common in autistic people. There are several parts of the brain, such as the Broca’s region and Geschwind's territory, which process speech and language. If these areas aren’t developed properly then the person will have hard time learning to talk and communicate normally. Where the problem occurs changes how the speech is affected. The person may have a fine vocabulary and know many different words, but they have difficulty with things like intonation and inflection. P a g e | 14 Another person may have difficulty translating ideas into words. And another person may know how to use words, but struggle with things like putting words into their proper context in order to effectively explain something. It is impossible to pinpoint one specific area of the brain that handles all communication, but I think you get the idea that when the brain wiring is off, it can cause communication difficulties. At the base of your brain is an area called the cerebellum. It sits just above your brain stem and is responsible for the task of motor coordination. Basically, whenever you think about moving forward, this is the part of your brain that manages the dozens of muscles in your legs to actually accomplish that goal. If this area isn’t wired very well then it will result in poor motor coordination, poor handwriting, and general clumsiness. This can also cause a condition called hypotonia, commonly known as low muscle tone, or loose joints. At the back of your brain is an area called the fusiform gyrus. This is involved in the recognition of other people’s faces, as well as reading facial expressions. When this area doesn’t work well it becomes difficult for the person to recognize who other people are by the way they look, and often causes them to miss out on facial expressions. This is commonly referred to as face blindness. It isn’t as though the person is blind and can’t see faces, it is just that the brain’s built in facial recognition software isn’t working. At the center of the brain is an area called the hippocampus which is partially responsible for handling long term memories. If this part of the brain doesn’t work normally then the person may have a very difficult time remembering new things. This is often times referred to as a learning disability and can result in the person not remembering how to do things even if they are shown repeatedly. There could also be a problem with the brain being able to control what memories do and do not form effectively. While the person may easily remember dates and times, they may struggle with remembering basic things such as how to prepare food. This is somewhat complicated by the distinction between procedural memory and rote memory, but the point I am trying to get across is that abnormal neurology can affect the ability to remember things effectively. On the right side of your brain is a large area called the right parietal lobe. This area is involved in the processing of mathematics, and visual special recognition. It allows you to find your way around, or to picture objects in your head and see how they work. People who have brain damage in this area have a very poor sense of direction and have a very difficult time understanding mathematics, often described as having dyscalculia. There are also portions of the brain which handle the processing of sensory input such as sight, sounds, touch, etc. If these are not developed properly, then the person may be hyposensitive, or hypersensitive. For example, I routinely cut myself and don’t notice it until I see the blood dripping from the wound. So I most likely have a hypoactive sense of touch. But P a g e | 15 I also have a hyperactive sense of sight and hearing as bright lights and loud sounds bother me much more than they would bother a normal person. The problem could also be caused not by any one specific region, but by something else like different parts of the brain not synchronizing normally. Studies of autistic people have shown that the various parts of an autistic person’s brains don’t fire in the same sequence as a normal person. So while the individual parts may be working fine, the difficulty could be caused by the individual parts not working together like they normally would. The problems could also be a result of abnormal neuron formation, abnormal neuron connections, or any one of hundreds of different things. It is also important to point out that this neurological abnormality does not always result in a difficulty. While some people have memory problems and learning disabilities, others have amazing memories and are capable of remembering vast amounts of information. And while some people may have problems with mathematics and be diagnoses with dyscalculia, other people may have an amazing ability to understand mathematics. Likewise, just as some people may have a very hard time with words; other people may have unusually high skills with words and begin reading at a very early age (often referred to as hyperlexia). Perhaps the greatest evidence of these gifts can be seen be looking at great scientist. It is impossible to officially diagnose people like Albert Einstein, or Isaac Newton, but any objective look at their lives will show that they had a very unusually way of thinking, and if they were born today would probably qualify for a diagnosis of autism, or something similar. There are many other parts of the brain that handle many other activities. What I just listed is only a small aspect of what the brain does, and it certainly doesn’t properly explain the enormous complexity of the brain. But from the limited information I have given, you can see that when the brain doesn’t function normally, it causes the person to act differently, and this difference is often diagnosed as autism. Since there is an infinite amount of ways the brain neurology can differ from normal, there is an infinite amount of possible presentation. On top of that everybody has their own personality. Even identical twins, which are programmed the same way by their genetics, will develop completely different personalities. So it isn’t as though everything can be explained simply by looking at structures in the brain. And as the person grows up and matures they learn to compensate for their problems by taking advantage of their strengths, thus changing their abilities, thinking pattern, and skill set over time. This results in the term autism being used to describe many different people with different traits. Labeling The Neurology Sometimes these traits will group together in recognizable patterns, which can lead to a variety of diagnosis. For example, there are some people who start talking on time and have P a g e | 16 normal speech acquisition; but they have problems with their ability to understand mathematics. When given an IQ test, they will do better on the verbal section than the performance section. This is typical of people diagnosed with AS (Asperger’s Syndrome) or NVLD (Non-Verbal Learning Disorder). Other people may start talking late, yet have an impressive ability with understanding mathematics. When given an IQ test, they will do better on the performance section than the verbal section. This is typical of people diagnosed with HFA (High Functioning Autism) or SPD (Semantic Pragmatic Disorder). However, the problem is that there is no clean dividing line. There are some people who are equally good with both words and math. Likewise, somebody who possesses many traits of HFA may possess a few traits of AS, and vice versa. Trying to separate people into groups of HFA vs. AS is like trying to divide people into groups of tall vs. short. It is obvious when a person is really tall, or really short. But when a person is average height, you can’t group them without setting up an arbitrary height as the dividing line. Likewise, trying to separate out autism vs. HFA vs. AS vs. NVLD vs. SPD vs. eccentric behavior quickly becomes a silly process of arbitrary definitions and fuzzy lines. For example, consider a child who has a very impressive memory, amazing math skills, and a passion for learning about dinosaurs. This same child is also fairly clumsy, and while he is interested in making friends and being social, he has no idea how to do it properly and often invades other people’s personal spaces. He has very little concept about how to properly interact with other people. Instead of playing games and having the give and take of conversation this child will monologue for hours about dinosaurs. Another child may have difficulties with learning new things, and be diagnosed with a learning disability. This child has no obvious physical problems and walks and talks normally. He has very little interest in interacting with other people, but not because he is misanthropic; he just doesn’t consider other people as interesting as being alone in his corner lining up his toys. Yet another person may have an average intelligence, but be delayed with communication and have a very difficult time with properly explaining things. He may struggle to form sentences and express thoughts even though he is mentally just as capable as any normal person. He may also stutter and have problems with anxiety leading him to have social withdraw, even though he is otherwise perfectly capable of socializing. All three of these people could get a diagnosis of an autism spectrum disorder, despite being very different people. So, what is the main point I am trying to get across with this chapter? It is simply that when dealing with your child you need to deal with them based on who they are and what individual struggles they are dealing with. Don’t worry about the label or the terminology. You could easily spend days trying to figure out which label fits your child best, only to find out that none of the labels fit him perfectly. So instead of worrying about the P a g e | 17 specific label, just find out about your child and work from there. For the sake of convenience, I am going to refer to people with abnormal neurology in this book as ‘autistic’. If you prefer you can substitute the term ASD, or AS, or whatever in your head whenever you see the word autism or autistic. The exact word really doesn’t matter. P a g e | 18 What Causes It? Inevitably one of the first questions that gets asked when a child seems unusual is, “What causes it?” I am not exactly a fan of trying to determine the cause, because it often results in blame and anger. I think it is better to just accept what is and move forward, but unfortunately most people have a nagging desire to find out. So I figure I might as well make a chapter about it and clear up some confusion. I cannot cover all possible theories and ideas about what causes autism because there are several thousand claims out there. Instead I am just going to go over the most common ideas and try to provide general information. The term Autism was first coined in the 1940s. Originally Autism, or any abnormal behavior, was thought to be a result of the child reacting to life. The theory, at the time, was that everybody was born with the same set of abilities; and people who didn’t act normal only acted that way because of something that had happened to them. The theory for autism was that the child wasn’t taught how to be social by the parents, and was thus unable to learn the basics of social interaction. This caused the child not to learn from other people which led to the mental retardation. Today, we know this to be false. Autism is not caused by poor parenting; it is caused by a neurological abnormality. But the question then becomes, “What causes the neurological abnormality?” Suspected Causes The simple answer is that anything which can cause the brain to develop abnormally can cause autism. Most of the studies done today indicate that the majority of autism diagnoses are caused by genetics. In other words it is caused by the genes you are born with, not what happens to you. Evidence of this can be seen in studies of identical twins. When one identical twin is diagnosed with autism, there is about a 90% chance that the other identical twin is also diagnosed with autism. So, either the condition is based on the genetic code, or the genetic code predisposes the child to developing the condition as a result of some environmental trigger 90% of the time. Also it is important to note that fraternal twins (different DNA, but same womb) only share a diagnosis of autism about 20% of the time, which is consistent with non twin siblings. So, it is unlikely to be caused by something in the womb. The exact percentages vary based on the study, but the genetic link is obvious in all studies done. An example of the condition’s heritability can be seen by looking at engineers. Though some don’t like to admit it, many engineers have at least a mild case of autism. Think of the stereotypical engineer, perhaps the character Dilbert. You’ll realize that having poor social skills, poor coordination, an excessive memory, and a fascination with learning about obscure pieces of information is a description that both an engineer and an autistic person can share. P a g e | 19 Often times, the child’s autism is just the traits they receive from their engineering family that are supercharged to the point of being diagnosis worthy. There is also evidence to back this up. Surveys done by Simon Baron-Cohen, and other prominent researchers, have shown that engineers are much more likely to give birth to autistic children then the general population. Also, places where engineers and other high tech fields gather, such as Silicon Valley, report a much higher rate of autism then the national average. Of course autism can be caused by things other than engineering genes gone overboard. Even the best figures on a heritability study only explain about 90% of the diagnoses. So what causes autism in the other 10% of cases? Mostly these remaining 10% of cases are caused by disease, metabolic disorder, toxins, or brain damage. For example, one known cause of autism is mitochondrial disease which affects the body’s ability to process sugars. This results in the body (brain included) not being able to function properly. This results in mental retardation, and other neurological problems which often times gets diagnosed as autism. Autism could also be the result of any number of other medical conditions which inhibit the brains ability to function properly. For example, there is an auto-immune condition known as celiac disease, which develops around age 1 to 2. This causes the body to mistake gluten (a food product found in breads and pastas) as a threat and attack it with the immune system. This results in the gastrointestinal system being caught in the cross fire and suffering damage. Although uncommon, if the condition is severe enough it can do significant damage to the intestines and prevent the body from absorbing the nutrients that it needs. The body, now lacking nutrients, will be unable to maintain the brain and give it the resources needed to repair damages and mature effectively. This can result in neurological problems. If you have ever browsed the internet about autism for any significant period of time you are likely to find at least one story where a child was developing normally then suddenly started acting autistic. After the parents put the child on a gluten free diet (the treatment for celiac disease), he miraculously recovered. These stories of sudden onset autism, followed by a miraculous recovery are often the result of some underlying physical problem which causes the brain to not function properly. Once the problem is resolved, the child goes back to operating normally. Autism can also result from things which affect the child’s brain while it is still developing in the womb. Studies have shown that when the mother is exposed to certain chemicals during pregnancy, it increases the likelihood of autism. Among these are pesticides, valproic acid, mercury and others. However, I should point out that eating fish in small amounts during pregnancy is incredibly unlikely to cause autism, so you don’t need to feel guilty about that tuna sandwich. There is also some evidence to show that drinking alcohol during pregnancy increases the chance of autism, however no conclusive studies have been done on that correlation yet. P a g e | 20 Studies have also found a link between autism and the mother fighting off a serious illness such as rubella when pregnant. The theory is that the rubella causes an auto immune disorder which affects the baby’s brain. And, of course, if a young child acquires a serious illness, it can also damage their brain and result in the diagnosis of autism. Obviously most cases of the flu are not going to result in permanent brain damage, but some diseases can cross the blood brain barrier, and do significant damage. Lastly autism might simply be caused by direct damage to the brain either by concussion, hemorrhaging, hypoxia, or premature birth. Studies have shown a correlation between low birth weight, premature birth, hypoxia during child birth, and autism. Now this is simply a correlation, and should not be taken as a proven cause. But I think it is a rational assumption that damaging the brain when the child is young can lead to autism. After all, autism is nothing more than the name given to unexplained brain abnormalities. Common Autism Myths A common trait amongst humans is that we like to blame somebody or something when something doesn’t go our way. A prime example of this is elected officials getting blamed for natural disasters. I know several people who blame President Bush for causing hurricane Katrina and all the devastation that resulted. I don’t think he was a 100% perfect president, but I am pretty sure he didn’t create the storm. The problem is that when people get upset about something they will blame anything and everything they can because having a scapegoat makes them feel better. In that same way, there are many ‘theories’ about what causes autism that are not based on any information, but merely coincidental timing and panicked parents looking for somebody to blame. This has led to many false claims of what causes autism, and I feel it is important to clarify common misconceptions. For starters, let me say this very clearly so there is no misunderstanding: Vaccines do not cause autism. There has been many studies trying to find a link between autism and vaccines, and all but one of them has found absolutely no correlation whatsoever. The only study to ever find a correlation between autism and vaccines was shown to have used flawed methodology, and an extremely small sample size. It was later retracted by its author and the medical journal which published it. Furthermore, the doctor who ran the study was paid by the parents who were suing the government for vaccine damage. So he had a financial incentive to find a link. The doctor has since been discredited and has lost his medical license. So when I tell you that there is absolutely no viable evidence supporting an autism and vaccine link, I am not speaking in hyperbole. The theory has been entirely and completely debunked, and I wish people would stop putting their child’s life at risk by not immunizing them. P a g e | 21 The second thing that does not cause autism is heavy metals, specifically mercury. Now I should clarify this point. When the mother is exposed to a sizable amount (more than just a few tuna sandwiches) of mercury during pregnancy there is a chance the child can be born with neurological problems. But autism is not caused by the child being exposed to mercury after they are born. If your 1 year old child starts acting in an autistic manner, then it isn’t because he drank some mercury when you weren’t looking. While exposure to mercury does cause neurological problems, it also causes a red rash, loss of hair, vomiting, and shedding of skin. So, if your child is sloughing off skin and vomiting, then you are well within reason to suspect mercury poisoning. But if your child is just being autistic, it is probably not because he was exposed to mercury. And the last thing to mention is that autism is not caused by your child watching too much TV, or playing too many computer games. Computer games can definitely teach your child pattern recognition skills, and get them to spend less time with others (which are considered autistic traits), but they will not turn your child autistic. Likewise, drinking soft drinks, eating junk food, not getting enough exercise, and other typically unhealthy things will not cause autism. They probably aren’t good for your health, but you shouldn’t give any credence to the crackpot health fanatics who claim that autism is due to eating potato chips. Lessons To Learn So, what is the important lesson to take away from this? For starters, vaccinate your children before we have another wide spread epidemic which kills thousands of people. Secondly, don’t fall for any of the crazy cures out there. There will be many people who are willing to take advantage of you, and offer you some experimental, unscientific snake oil which they claim may cure autism. In the vast majority of cases, the autism is genetic so you can’t cure it without rewriting the body’s genetic code. And if the autism is caused by some environmental factor, buying some 50 dollar miracle pill over the internet is not going to fix it. I can guarantee you that if you spend all your time looking for some cure, then you are just going to get frustrated. When you think about how much better life would be if you could just cure your child then you only give yourself an unrealistic future and then become depressed when you can’t make it happen. Instead, just accept that what is done is done, and move forward. Yes, your child will have challenges, and they will probably need some extra help; but that doesn’t mean you and your child can’t enjoy life if you just focus on where you are and where you are going. Focus on helping your child with their struggles, and help them to grow. If you do that than your child will have a much better life, and you will have a much happier household. Having an autistic child isn’t the end of the world unless you let it be. Just P a g e | 22 accept reality for what it is, and don’t hold on to some unrealistic expectation of making your child normal thus allowing it to ruin your life. Perhaps an analogy would help. If you lost a foot, you could spend the next few years trying to find some miracle cure to grow your foot back. You could hold on to the idea that if only you had your foot back, you could play sports and be happy again. You could go from doctor to doctor trying to find out some way to repair the damage. And if you look hard enough you will probably find some quack that is willing to charge you a great deal of money to sprinkle some talcum powder on the wound and give you false hope. But ultimately your foot will still be gone. Your other option would be to simply accept the obvious and admit your foot isn’t coming back. You could then get a prosthetic which allows you to walk around. While you wouldn’t be able to play sports very well, you could still have a fine life, and find other activities you enjoy which don’t require the use of a foot. Now which one of those options sounds better to you? Would you like to be depressed for years about lost dreams or would you like to accept reality and make the most of it. I hope you would choose the second option. It is the same way with autism. Just learn to accept that things will be different then you envisioned, but not necessarily worse. Your child may not be normal, and will probably not grow up exactly as you have envisioned. But if you accept that your child is strange, and give them help accordingly then they will be able to still have a good life. And I think that is definitely preferable to chasing after lost dreams and overlooking your child’s unique potential in the process. P a g e | 23 How Does An Autistic Person Think? One of the most common questions that gets asked (and rightfully so) is “How does an autistic person think?” Unfortunately this question is very hard to answer for a multitude or reasons. For starters, in order to answer that question a person would have to spend some time being autistic, then some time being normal, and then compare how the two are different. Unfortunately there is no feasible way to accomplish that. It is very hard to compare how your thought process differs from somebody else when you have no reference for comparison. This is also difficult because words seldom do a good job of describing thought processes. I am familiar with most English words, and so far I haven’t found any which accurately and concisely describe how I think. However, that being said, I am willing to give it a shot. I cannot guarantee that this will make perfect sense, or that it will be 100% accurate of every autistic person; but it should help to explain things for you. Thinking Differently Perhaps the first thing to mention when describing my thought process is that it doesn’t happen in grammatically correct English sentences. My understanding is that most people have an internal voice which is how they think about things. It is almost like a monologue which you use as your primary means of thinking. I have an internal voice too; it’s how I figure out what to say, and how to say it. But it isn’t my primary means of processing information, and it isn’t very easy to use. From what I have read, this seems to be more common amongst people who had a speech delay as a child. So then the obvious question is “How do you process information?” In my thought process, I have a large amount of what I am going to call notions. Every single object, action, emotion, place, or piece of information is stored in my head as a distinct notion. These notions come in many shapes and forms. Some of them (especially the nouns) are stored as pictures. Some of them such as actions or emotions are more abstract. They don’t have any exact, or definable form to them, but they are definitely distinct notions. For example, the word ‘running’ has multiple notions in my head based on how it is meant. If the term running is used like, “He is running a race”, then the corresponding notion in my head is the idea of moving swiftly on two legs (four legs would be a gallop), spending most of the time off the ground (but not moving as fast as possible, since that would be sprinting). I can also visualize somebody running along, so that notion is stored visually as well as abstractly. If the word running is used to mean operating as in, “The machine is running”, then I have an abstract notion of a machine operating with no accompanying pictures or words. If the term running is used like, “The tear is running” then I have a picture of something ripping, which is an entirely visual notion. For normal people, the word running seems to mean all these things at once, but with less detail (I P a g e | 24 don’t understand how that works). For me, each possible meaning is distinct and not related to the others, which is partially why I find words so annoying. One word can mean many different things based on context, or one idea could be communicated with a dozen different words. When I think about something, a bunch of little notions come together and that’s how I arrive at a completed idea. All of the notions are interconnected to each other in a way that makes sense to me. But there isn’t any clear order to the notions, nor any linear structure to them. It isn’t as though one notion comes before the others; it is more like all the notions occur together as one big ball. For the sake of an analogy, it is almost like the individual notions are like individual twigs that form the bird’s nest of a complete idea. It isn’t as though one twig is more important or more central then any of the others. This thinking style of having multiple smaller notions build together to form one larger idea is sometimes referred to as ‘detail thinking’. And to be honest, this is a decently accurate term. After all, my thoughts are made up of thousand of smaller details, and it is hard to come up with a better way to explain it. However, I would discourage parents from reading too much into this and believing everything that they hear regarding detail thinking. Some books out there will claim that since autistic people have detail thinking they are completely unable to see things from a wider perspective. This detail thinking is also given as the reason why autistic people have difficulty with generalizing information. This is true to some extent, as it can be difficult to extrapolate information when it is in this format. However, the idea that an autistic person can never see things from a different perspective, nor extrapolate information and generalize, is completely false. I can extrapolate and generalize; I just do it differently than somebody using the typical ‘top down’ method of a normal person. The biggest problem I have with this method of thinking is when I have to translate it into words. To give an analogy, using words is like using a second language for me. When you hear a foreign language, the first thing you do is translate it into something that makes sense to you. For example, if somebody says, “Donde esta el bano?” you have to figure out what that means. So, you translate the words into English and figure out that it means, “Where is the bathroom?” From that you make your response in English, and think ‘It is the second door on the right.’ Then you have to take that thought and translate it into Spanish, where it comes out as, “Es la segunda puerta a la derecha.” It isn’t as though you can’t communicate in Spanish; it just isn’t your primary method of thinking. You have to do your thinking in English first, and then translate the results. For me, using words is the same way. I can communicate with words, but they aren’t how I process information. For example, if somebody asked me, “How was your trip?”, I would think about the drive to the airport and the route that I took. I would think about the names of the roads, and see a map of the route as a picture in my head. I would think about the time that I left the house, and what snack I had on route. I would have several pictures of the place where I P a g e | 25 parked my car in my head. I would think about the line going through security. I would think about staring out the window watching the planes take off. I would think about where I sat on the plane, and what snack was served. I would remember how the pretzel snack tasty salty, and so forth and so on. All these small little bits of information would clump together into a ball, and be labeled in my brain as ‘the trip from there to here’. The problem is that this makes it somewhat difficult to answer the question, “How was your trip?” For example, what information does the other person want to know? They probably aren’t interested in the route that I took, or the snack that I had, but what information are they interested in? In order to answer the question I have to take this ‘notion cloud’ containing thousands of notions and reduce it down to only a dozen or so relevant ideas. And when I figure out what information they want to know, the problem then becomes converting all the pictures, sounds, and abstract notions, into English. For example, where do I start? What piece of information should I talk about first, what piece of information would be second? And once I figure out what I need to communicate, and in what order I need to communicate it, the problem then becomes matching up the notions with the proper words. Each notion in my head has a couple dozen words associated with it. For example, the notion of going someplace can be represented by the words: going to, journeying, traveling, moving, relocating, changing locations, and so forth. Which one of these words I wind up using depends on the other words in the sentence, and the meaning I am trying to convey. Once I have picked out the words to use, I then have to put those words into grammatically correct sentences which is a whole other challenge in itself. To give the best analogy I can, putting these sentence together is like solving a jig saw puzzle; and when you can’t put the puzzle together correctly, then you don’t get any words out. Basically, it takes me a lot of work to communicate things effectively, more so than the average person has to put in. I can assure you that I didn’t just sit down and type this all out. Each sentence in this book has been written and rewritten about 3 or 4 times before it made any sense. And then as the paragraphs formed I had to change the order of the sentences, change the tense of some sentences, add some sentence, and delete others. Of course editing your work is part of the writing process whether your autistic or not; but I suspect that I take a lot more time than an average person to convert the thoughts in my head into understandable and usable English. So, all that to say: If your child seems to be having some difficulty explaining things to you, please do try to be patient and considerate. It isn’t easy to translate this all into English, and trying to rush the process doesn’t help make it happen any faster. As the child grows older and gets more practice with translating their thoughts into words then they will be able to do it faster and easier. One major thing I should point out is that the child will only become better at things that he practices. For example, if your child tells you all about the game he was playing on his game boy then that helps him to learn the skills of P a g e | 26 conveying factual information to somebody else. However it doesn’t help him learn the skills like how to be persuasive, or how to get information from somebody else, or how to discuss non factual (abstract) information. If you want your son to learn how to be convincing and persuasive with his speech then he needs to practice that. If you want your son to be effective at talking about abstract notions like feelings, then he needs to practice that. Less Subconscious Processing The second major difference between an autistic person and a normal person is what the brain will and will not do automatically. I suspect that this is caused by the part of the brain which usually handles the function not working normally. Let’s look at an example: When a normal person looks at somebody else whom they know, they automatically know who that person is. This happens because their brain subconsciously processes the person’s face, using its own built in facial recognition software, and spits out a match. For somebody like me, who is face blind, this doesn’t happen. When I look at a person’s face I don’t automatically know who it is, even if I have known them my entire life. So what I have to do is consciously figure out who it is, mostly by process of elimination. When there are a limited number of possible matches, it isn’t hard. For example, if I am at my parent’s house and a tall, balding, middle aged man with white hair walks up, I know it is my father. But when I am out at a public location and somebody waves at me it is much harder to figure out who it is. In those situations I wave back, then stand there trying to figure out who it is that I am waving at. My thinking is something like this: I can see this guy has short brown hair, he is about 5’10”, about mid 20s, and athletic build. I know it’s not person A because the hair is too short, it’s not person B because he is too skinny, it’s not person C because he is too tall, etc. Eventually I arrive at a match and figure out who it is, or I just give up. It isn’t as though I absolutely cannot recognize people by their faces; it’s just that I have to do it consciously whereas a normal person does it subconsciously without ever thinking about it. Over time I have gotten more practiced at this, and I can now recognize people much faster than when I was younger. It isn’t as though I have gained a normal person’s talent for automatically recognizing faces. I have just done it manually so much that it has become routine for me. Practicing repeatedly until proficiency in this way is often referred to as the skill becoming second nature. This can be seen in reading facial expressions also. For normal people, reading and understanding facial expressions happens subconsciously. For an autistic person, this usually does not come automatically. So instead of just knowing how a somebody else feels when they give you a certain look, an autistic person has to take some time to look at the face, see what position the eyebrows, lips, etc. are in and then compare that to a list of possible matches. This P a g e | 27 is how an autistic person learns to recognize facial expressions. Again, it isn’t as though an autistic person cannot learn, it’s just that they will have to do it manually as they don’t have the automatic ability to do it. Over time they can become more practiced at manually reading facial expressions, and learn to do it faster and easier. This, of course, applies to more than just recognizing and reading faces. Normal people usually automatically know things like: what is a good topic for conversation, how far away should they be standing from the other person, which facial expression to use when trying to communicate something, whether or not the other person is being sarcastic vs. sincere, and so forth. Normal people don’t need to sit there and spend time thinking about which topic would be appropriate in the situation; they just tend to automatically know these things without ever spending time to consider it. An autistic person on the other hand doesn’t automatically know these things. The only way they will know which topics of conversation is appropriate is by spending time thinking about it and figuring it out manually, the same way a normal person would have to manually do math. This can also apply to things not related to social interaction. For example, a normal child will probably learn how to do chores, prepare a meal, play a game, or something like that by observing another person do it. This is because a normal person has a subconscious ability to observe, and learn. Young children will soak up information and learn on a subconscious level without even realizing it. An autistic child may not be able to learn how to do a task via observation as quickly as a normal person would. They may need to see the task done many more times before they understand how to do it themselves, and even then they may need basic step by step instructions on how to figure something out. This is not to say that autistic people can’t learn. They are just less likely to learn information subconsciously by merely being around it. They are more likely to learn information by consciously studying and interpreting what they see and hear, the same way a normal person would study for a math test. To help you understand what I am talking about, consider how the human brain processes information. Information comes into the brain via the senses, and is then processed to scrub out the unnecessary information. For example, when you look at a table, you don’t look at every single wood fiber and the direction of the wood grain. You just see a table. Your eyes can clearly see the grain in the wood, the roughness of the surface, and many other details about that table. But when you are just walking into a room, you don’t bother to pay attention to that information because it doesn’t matter. Your brain just scrubs out unnecessary information like that so it doesn’t waste time processing irrelevant minutia. In this way, your brain may scrub out 90% of the information that it takes in. What information gets past this initial scrubbing is then processed subconsciously by your brain. For example most normal people will walk into a room and instinctually know what people are doing, what is the topic of conversation, what is going in the situation, etc. They know this information because their P a g e | 28 brain has subconsciously done all the work and provided them with an answer. And again your subconscious processes 90% of the information that gets past the initial scrubbing. This means that 90% of the information is lost, 9% of it is handled automatically, and only 1% of what your senses bring in actually makes it to your conscious thought process. Comparatively, consider an autistic person. In his case, perhaps only 80% of the information that comes into his brain gets scrubbed out. And only 80% of what gets past the scrubbing is processed subconsciously. Thus 80% of the information is lost, 16% of it is handled automatically, and 4% of what their senses bring in makes it to an autistic person’s conscious thought process. While dropping from 90% to 80% isn’t that big of a drop, it can result in the autistic person having to process four times as more information in a given situation than a normal person would. Of course I must confess that I just made up those numbers to give an example. The exact percentages will vary from person to person, based on both the situation, and task at hand. But the overall idea is that your child has to process much more information consciously than a normal person does due to their brains not doing the task automatically for them. Since every child is different, I can’t give you a list of things that your child will automatically understand like any normal child vs. what he will need to learn manually. Some people do fine on the self help skills but struggle on the social front. Some may do fine with personal space, but not know what topics to pick for conversation. It really depends on the individual. But one thing I can point out is that just because your child can’t automatically do the things a normal person can do, that doesn’t mean they can’t learn to do them manually by conscious thought process. It is just going to be harder for them to do, and it is going to take more effort on their part. Hopefully that clears up some confusion about what an autistic person is capable of. Very often you may find articles which claim, “autistic children can’t read facial expressions”, but then you notice that your child can pick up on certain expressions. It isn’t as though the child absolutely cannot pick up that information; it’s just that he has to do it manually, on a conscious level, as opposed to it being automatically done for him by his subconscious like a normal person. This is also why you may notice a discrepancy between autistic people as they grow older. People often look at an adult who can read facial expressions, or understand social cues and think, “this person can’t be autistic.” In reality the adult is just as autistic as any child who misses out on social cues. The only difference is that the adult has had a few decades to pick up and learn all the things which normal people automatically know in their youth. This can also create problems where normal people and autistic people don’t understand each other, and have difficulty explaining things in a way that the other person can understand. For example, if a normal person sees other people engaged in a conversation, they will observe things like how the people are standing, their body posture, what the environment P a g e | 29 is like, etc. Their subconscious then takes this information and processes it to determine if this is an open conversation, or a private one. Two coworkers standing around the coffee pot laughing is probably an open conversation. You can easily enter in to the conversation and socialize with them. Conversely, if you see two people sitting at a booth in a restaurant, talking to each other, then you would conclude that is a closed conversation. And as such, would not try to sit down and talk with them. But the odd thing is that you don’t have to actually think about that in order to know it. You don’t have to sit there and rationally and consider all the variables. You don’t have to guess whether or not they are on a date, or if they want company, it is just somehow obvious to you. Normal people tend to know these sorts of things automatically by subconscious analysis rather than rational thought. This often creates problems when normal people try to explain things to autistic people because they often leave out key information without realizing it. Normal people have a bothersome tendency to assume that everybody thinks like they do, and as such fail to properly explain things in a way that makes sense on a rational level. So when your autistic child asks you things like, “Why don’t you go talk to that person over there?” You may answer them by saying, “That person is busy and doesn’t want to be interrupted.” While this is indeed a true answer, it fails to explain how you know the other person doesn’t want to be interrupted. To you it may be obvious based on the way he is sitting and the body posture he is using. But to the autistic person he is just a guy sitting at a desk. They have no method of determining whether this person approachable or not. So while you may consider “That person is busy and doesn’t want to be interrupted” as a viable answer, the autistic person doesn’t understand it and gets confused as to how he is supposed to know that information. While the child may learn how to do this eventually if given enough time, you can speed up the process of him learning by fully explaining things which come automatically to you. Intense Focus The third area where autistic people tend to differ from normal people is what I am going to refer to as ‘having a one track mind’. Again, like all things in this chapter, I am only speaking from personal experience, so your child may not think the same way. But, based on what I have observed, this style of thinking seems to be fairly common amongst autistic people. Many autistic people tend to focus on one thing very intently, and not notice anything else. For example, when they are playing with their toys you can call them, and then call them again, and they probably won’t respond. You then go over to them, and talk louder (often times startling the child) before they respond. If you ask them, “Why didn’t you answer me when I called?” the response you will often get is, “You didn’t call me.” P a g e | 30 In these situations, your child is not lying to you; he really didn’t hear you call him, even if it was audible to everybody else. This tends to occur when the child is focusing on something in particular. Whatever he is focusing on has his attention to such an extent that all other sensory information is much softer then it would be otherwise. As with most things, an analogy would probably help to explain this. Imagine if I took a small wrist watch and set the alarm to beep at a random time. I then set it down, and asked you to sit on the couch next to the watch and let me know when it beeped. If you sat there in silence with your eyes closed listening for a beep, then you would easily be able to hear the watch when it went off. It isn’t a very loud beep, but you would still hear it in the silence. Now imagine if I did the same thing; but this time, instead of you sitting on a nearby couch in silence, you were two rooms away watching an action movie full of loud explosions and fast paced music. When the watch beeped you probably wouldn’t hear it. It isn’t as though the watch is any quieter; it’s just that you’re so focused on the movie that you didn’t hear the small beep in the background. This is sort of what happens when an autistic person is focused on something. They lose track of what is going on around them, including things like other people, external sounds, and even internal signals like hunger, or the need to use the restroom. There have been several occasions where I have sat down in the morning to do something on the computer, only to finish 14 hours later and realize that I haven’t eaten yet that day. Luckily I have enough control of my bladder that I don’t wet myself when that happens. So, if your child happens to seem far away, or non responsive, it isn’t because they are ignoring you, they simply don’t hear or see you unless you talk really loudly or get their attention in some other way. Lack Of Emotional Awareness The fourth area where autistic people tend to differ from normal people is in their ability to properly identify their own mental state. As odd as this may sound, autistic people often times have difficulty recognizing whether they are happy, sad, angry, or overwhelmed. I am not sure why this happens, and of course the standard disclaimer is that not all autistic people are like this. But I do know that it happens fairly often. The best way I can put this is that the gauges aren’t working properly. For example, it is like having a car where the dashboard instruments are broken. You can rev the engine, get going along the road, but all the dials are still at zero. That doesn’t mean your car isn’t moving, it just means you can’t tell that by looking at the dials in the dashboard. In the same way an autistic person might get angry but not know it. They would have a shorter fuse, talk louder, and be more defensive, but they wouldn’t know that they were angry. This often creates the problem of not being able to get a good handle on one’s own emotions. Whereas a normal person tends to know they are getting angry and take steps to P a g e | 31 avoid the problem, an autistic person may not react appropriately because they don’t get the warning signs. Likewise, it is very easy for an autistic person to get stressed out and then have a major problem without recognizing the warning signs of increasing stress levels along the way. To extend the car analogy, it is very easy to accidently over-rev the engine and get it into the red zone when you have no working tachometer to tell you what the current RPMs are. So, if your child seems to be stressed out, or overwhelmed, he may not know what is going on. He probably knows that he doesn’t feel right, and he probably knows that he is having troubles, but he may have difficulty figuring out what the problem is and what is causing it. So if your kid seems to be getting angry and short with you, it probably isn’t because he is trying to be disrespectful. More likely he is just angry at something but doesn’t know it and he is just taking his feelings out on whoever is near. The good news is that this gets better as the child grows older. With some practice you get to notice the signs of different emotions, what they feel like, and how to deal with them. Theory Of Mind The last difference to talk about in this chapter is the idea of ‘Theory of Mind’. This is two different topics that often get lumped together due to a false understanding of what is really going on. So I am going to try to separate them and talk about both. The first meaning of ‘Theory of Mind’ is used to indicate that the child understands that other people perceive the world differently than they do. Since that is a complicated definition, I shall try to explain it a bit better. When a child is young, they believe that everybody around them knows the same information, and thinks the same way they do. Around age 3 to 4, most normal children begin to understand that other people perceive the world and know things differently than they do. This is an important step towards learning about perception and understanding what other people do and do not know. However, most autistic children at age 3 to 4 still haven’t grasped this concept yet. It takes them longer to learn it. The exact age that this concept is learned depends on the child, but it is usually later than normal. This is often why autistic children start to lie or hide things later than normal. They don’t understand that other people don’t know what they know, and can thus be fooled. The second way this ‘Theory of Mind’ is used is to indicate that autistic people don’t understand how normal people think. This is often paired with the idea that autistic people lack empathy. Now before I go further, I should clarify some terms quickly. Sympathy is when one person cares for another person, and has compassion for them. Empathy is the ability to determine what another person is thinking without direct information. Empathy and sympathy are not synonymous. So when you hear the phrase that autistic people lack empathy, that only means that they have a hard time understanding how normal people think; it doesn’t mean that they are cold or uncaring. And I have to agree with much of the literature out there. P a g e | 32 When it comes to normal people, I really have a hard time understanding how you people think. You all seem very strange to me. I can understand the thought process of other autistic people just fine, it’s the normal people who confuse me. However, I think it is important to point out that this is not the fault of the autistic person for failing to understand other people, but a fault of all humans for failing to understand those who are different from them. Ask yourself this: does your autistic child confuse you? Does his thought process seem strange and mysterious? Does he do things you wouldn’t do, and you have no idea why? If you answered yes to those questions, it clearly indicates that you do not understand how your child thinks. To put that another way, you don’t have empathy (not to be confused with sympathy) for your child. The problem isn’t a lack of skills on your part, or the child’s part; it is just a simple fact of human nature that we have difficulty understanding those around us who think differently than we do. The only reason this ‘lack of empathy’ is blamed on the autistic child is because normal people out number him by a large margin. Everybody seems strange and confusing to the child because they are different from him. If autistic people made up the majority of the population then the label of lacking empathy would be applied to the minority of non autistic people. Common Misconceptions Now that I have covered some of the common differences between autistic people and normal people, I think I should also clarify some misconceptions and point out the ways in which we are the same. For starters, autistic people do indeed have a sense of humor. It may not be the same as yours, and as such your child may not laugh at your jokes. But I can assure you, he does have things which he thinks are funny. I should also clarify that autistic people do indeed have emotions. If anybody ever tells you that your child doesn’t have emotions, or is in anyway soulless or emotionless, then feel free to punch them in the face. You have my full backing in doing so. It is also important to point out that autistic people do have an imagination. It is common for people to look at outward appearances, take things out of context, and make false assumptions, leading them to underestimate what an autistic person can do. For example, a psychologist will look at a child who is sitting in a corner rocking back and forth and say, “O look! He isn’t playing pretend with the other children; he must not have an imagination.” I can assure you that idea is quite false. What do you think the child’s mind is doing while he is rocking back and forth in the corner? He is in his own head imagining worlds that you can’t understand, for which no words can explain. His imagination isn’t lacking, not by a long shot. You just can’t see it. P a g e | 33 What Causes The Problems? Now that we have covered some of the ways that an autistic person thinks differently than a normal person you are probably left with an important question. You are likely thinking something like, “Ok, so that explains some things, but it doesn’t explain why my child is so grumpy all the time, or so resistant to change. What causes him to act out so much? Why does he have meltdowns in school? Why can’t he be calm when we go out in public? Why is he always so anxious? Why does he stop responding?” Before I go too far in depth to answer that, I must point out that some problems are caused simply by the child being a child. It often amazes me when parents come on to the forums and say things like, “My child was caught stealing a sibling’s toy; why do autistic kids do this?” or “My autistic child doesn’t want to do his chores.” I hate to sound unhelpful, but all children are like that because they are born immature. Some parents have a tendency to blame all of the child’s unwanted behaviors on autism and autism only. Keep in mind that your autistic child is still a child, and as such will act like a child, immaturity and all. Of course typical childhood behavior doesn’t explain all the problems you may be having. Typical children don’t have meltdowns, aren’t resistant to change, and generally don’t freak out in public. These problems are more commonly associated with autistic children, which cause people to think that autism is the source of the problems. The reality is that it autism itself does not causes the problem. The source of these problems is stress, and your child’s reaction to that stress. To put this as bluntly as I can; autistic children are no more temperamental, aggressive, confrontation, or oppositional than any normal child. The only reason that autistic people act more problematically is because they are under much more stress than a normal child is under. If you would take any normal person, and put them under as much stress as an autistic person, then they too would act just as poorly. Being stressed out, overwhelmed, and overworked is the cause of most of your child’s difficulties. If you can reduce the amount of stress and difficulty your child has to deal with, then you can alleviate and mitigate most of the problems. Let’s see if I can explain this in a way which makes some sense. The world usually isn’t a very nice place for autistic people. The lights are too bright, sounds are too loud, clothes are too itchy, things like perfume and smoke make you gag, and that’s just talking about sensory problems. Just ask anybody who has had a migraine or a hangover and they will tell you that the sensitivity to light and sounds isn’t fun. Younger autistic children or those with more difficulties often times get stressed out due to their inability to do relatively simple tasks. Have you ever tried to thread a very small needle by hand in poor lighting? It is hard isn’t it? After a couple tries you would probably get frustrated and annoyed with the task. Try having the same P a g e | 34 difficulty with things like talking. Trust me when I say that your child’s difficulty with communicating is more of a problem for him than for you. Added onto to that is problems imposed due to being surrounded by people. While you may not see other people as a source of stress, an autistic person usually does. People are unpredictable, and very random, which raises uncertainty and causes stress. Other people (especially young children) also tend to be loud and chaotic which only causes more problems with loud noises. There are also societal pressures that cause anxiety and stress. People often expect autistic children to do more than they are capable of doing. This only leads to failure, more frustration, and more stress. Stress can also be caused by deviation in routines, problems coping to changing circumstances, or any one of a hundred different things. I will discuss these in more depth in the next chapter but what I want to make clear is that your child is probably more stressed out by life then you are. The Results Of Stress So, how does this stress affect your child? As the child becomes stressed out they become anxious, overwhelmed, and begin to react defensively. ‘Defensive reactions’, as I like to call them, are emotional responses to the stress which aren’t very well thought out and generally don’t help. Unfortunately, children are not born knowing how to handle stress effectively. As a result they tend to take the easiest route and react emotionally to their problems which results in problematic defensive reactions. Usually a child does not intentionally chose a strategy which they know will be harmful, they just aren’t aware of, or aren’t capable of using, a better coping strategy. This is why your child starts acting in a problematic way when they get stressed out. You may be wondering what possible defensive reactions there are, and why they cause the problems that they do. So next up, I am going to discuss possible defensive reactions your child might have, how to spot them, and why your child is acting that way. Keep in mind that how your child responds can depend on a lot of things. In some situations he may be avoidant, in other situations he may try to fight back; sometimes your child may use 2 different tactics at once. So it pays to be familiar with more than one possible presentation. 1. Shutting down This defensive reaction is the one that I used most often. Basically, I couldn’t avoid the problem so I just shut down, and tried to block out the world as much as possible. This, of course, made it somewhat difficult to have a conversation with me when I was stressed out as I seldom responded. The signs of this are pretty easy to recognize. If your child isn’t responding P a g e | 35 to you, or seems ‘out of it’ whenever you try talking to them, then your child is likely not all together there. The most common response you will get to a question is “um”, or “uh.” If you press for an answer you might get “I don’t know.” This is generally one of the better defensive reactions that your child can have as it is better than lashing out. However it does present some problems when you are trying to get your catatonic child to work on their homework. 2. Avoidance This defensive reaction is a fairly common one, and is mostly used by children who are often faced with being in difficult circumstances which stress them out. The child will try to avoid the stressful situation by whatever means possible. They will hide under their beds, or be mysteriously missing when it comes time to do homework, or go to that social outing you are dragging them to. They will also come up with reasons why they can’t do whatever thing is stressing them out. For example, they can’t do homework because they have to use the bathroom, or because they forgot something in their room which they need to take care of. They may not be able to do math because their pencils aren’t all the same length, or any one of a hundred different diversions. They may also repeatedly try to change the conversation whenever an unpleasant or stress inducing topic comes up. For example: Parent: Ok, time to sit down and do your math homework. Child: Funny word math, did you know it stems from the root word mathematics. It is also sometimes referred to as arithmetic or computation. Parent: Yes, I know math is a funny word. Can we get started on the homework now? Child: Hey, did I tell you about what Billy said at school today? This avoidance may also cause your son to act silly or immature. If he can turn things into a joke and avoid the issue at hand then that is a lot easier than dealing with the situation. As such, your child may act up, or be the ‘class clown’ because it draws attention away from whatever he is being stressed out over. It’s much easier to make distracting funny faces during homework time then try to work on homework when it stresses you out. 3. Controlling The fact is that when you suddenly get thrown into an unfamiliar situation, and can’t figure out what is going on, you tend to get anxious, or panicky. When things suddenly start going off your child’s plan (which is not necessarily the same as your plan) your child can’t predict what is going to happen next, and that causes stress. Thus, your child may attempt to control the situation when he gets stressed out. He may start becoming inflexible, or stubborn, P a g e | 36 because he is trying to limit the uncertainty, and thus stress, he is dealing with. It is important to realize that while the child’s controlling behavior may not work well, he isn’t intentionally trying to make things worse. Your child is not being controlling because he is trying to be annoying or problematic; he is simply trying to make things predictable. Since this is a fairly common stress inducing situation I will be elaborating on it further in the next chapter. 4. Defiance Some times when your child gets stressed out they tend to become defiant. This is often times confused with the ‘controlling’ defensive reaction, but it has different motives. When your child is trying to control the situation he generally isn’t trying to be rude or offensive. He is just trying to make sure things happen in a predictable manner. Conversely when your child is being defiant, he is indeed trying to be offensive. As I described earlier, when your child gets stressed out they become defensive. And as the saying goes the best defense is a good offense. When your child goes on the offensive, that’s because he perceives himself as being under an attack (which is an easy conclusion to come to when your stressed out), and he is just trying to knock back his opponent (who usually isn’t trying to attack him). When your child gets like this he is likely to disagree with everything that you say. You could be making an entirely rational point about how his actions are only going to cause him harm, but he isn’t listening. He isn’t being belligerent because he hates you, or is angry. He just feels as though he is backed into a corner and he is only trying to defend himself. As such, he is going to disagree with you, yell at you, say mean things, or just be an all around jerk until you leave him alone. 5. Anger Anger is a possible defensive reaction your child may have if he feels that one person, or group of people, is intentionally causing the problems he is facing. For example, if your child is stressed out over homework, he may feel angry at the teacher for assigning it, or you for making him do it. He may feel angry at his siblings when he has to clean up the house because he feels the mess is caused by his siblings and not him. He may feel angry at the parent for enforcing what he sees as arbitrary and unnecessary rules. Basically, he feels that the world is not fair, and that he is getting the short end of the stick. This can lead to the child feeling harassed, persecuted, or even somewhat paranoid. This problem is often amplified if he is being bullied by his classmates, or authority figures. This anger can lead to resentment, passive aggressiveness, and even direct aggressiveness if the child has problems with impulse control. This also tends to cause the child to be distrustful of authority figures as they are usually what he perceives as the source of his problems. P a g e | 37 This reaction, if left unchecked, can result in a vicious cycle of anger. If the child does something that the parent perceives as wrong, they punish the child. The child then feels as though he is being punished unfairly, either because the rules were not clear, not explained, or some other extenuating circumstances were in place. This results in the child feeling angry towards the parent for punishing them unfairly. Since they are angry with the parent they then act disrespectful or rude, and are less likely to listen to what the parent has to say. This results in the child breaking another rule (often times just to annoy the parent) which results in them being punished again. They then get angrier at the parent and the problem just repeats itself and gets worse until the parent and the child are bitter enemies. 6. Physically lashing out This is perhaps one of the more troublesome defense reactions for the parent to deal with. The idea behind this is fairly simple. Your child gets stressed out and the stress makes him defensive. This triggers the fight or flight response, which leads to the ‘fight’ actions. I am not trying to excuse or justify your child’s actions of lashing out, as obviously they are not desirable nor acceptable. But I think it is important to know what causes them. The good news about this type of defensive reaction is that it is usually not the first thing your child does when he is slightly nervous. Usually the child will try to be avoidant or controlling first. But as the child gets more and more and more stressed out, the primal instincts tend to take over and the fight response becomes a more likely option. For example let’s look at the following scenario: Parent (nicely): Time to do homework Child (avoidant): I don’t want to do homework Parent (forceful): Look, I know you don’t want to do it, but you have to. Child (more avoidant): Can’t we do it later? I am really busy doing something now. Parent (threatening): Sit down and get started on your homework or else you aren’t going to be playing on the computer tomorrow. Child (defiant): Fine! I don’t want to play on the computer anyway! Parent (angry): Look, this isn’t a negotiation! Just sit down and do your homework! Child (Lashing out): I HATE YOU! *starts kicking chairs* Obviously not every scenario works out exactly like this one. Sometimes your child may become defiant or even lash out with less provocation. Often times your child doesn’t go from avoidant to lashing out in 30 seconds. This transition may occur over a longer period where your child just gets more and more stressed out until the only option they see left is to lash out. P a g e | 38 7. Self Blame Sometimes when your child gets stressed out, he will blame himself. This is somewhat similar to the anger reaction in that he blames somebody for life’s problems. But instead of blaming somebody else, he blames himself. This generally leads to statements like, “I can never do anything right” or other such things indicative of a low self esteem. This causes fewer problems for the parent than the anger reaction, but it is usually much worse for the child. And to be honest, I can’t exactly blame the child. When he sees that other people around him are able to easily do things, and handle situations he can’t, it only serves to reinforce his opinion that he can’t do anything right, so why should he bother. If your child has this reaction to stress, then you’re going to have to help him with his self esteem issues. 8. No defensive reaction at all Now, at first, this may not seem like a bad thing. After all, who wants to have a child who is controlling, defiant, or paranoid? But the problem is that when your child never develops any method to deal with the stress, the stress quickly overwhelms him. Every single little thing that goes wrong seems like the end of the world. Whenever life gives him the short end of the stick, he just gives up and assumes it is hopeless. If you’re lucky your child will just become a hermit who is afraid to go outside, or try anything new. If you’re unlucky then this just leads to a string of near constant meltdowns where your child does nothing but cry about how horrible the world is. The Six Stages Of Stress As your child becomes more stressed out, he becomes more defensive. This results in the defensive reactions becoming increasingly pronounced, and more problematic. Once the stress reaches a critical level, you get what is perhaps the most obvious result of the child’s stress, a meltdown. It also goes by other names like tantrums, freak outs, shut downs, panic attacks, or ‘episodes’. Despite external appearances, a meltdown really isn’t an on/off thing, but more so the far extreme of being stressed out, anxious, and overwhelmed. While these meltdowns may seem unpredictable, I can guarantee you that they don’t occur at random. If you learn to spot the warning signs of stress, you can usually see them coming. In an attempt to properly explain this and show how stress affects autistic people I have made this lovely chart. It shows how an autistic person goes from being fine, to being in a meltdown, and all the various stages in between. It isn’t perfect, but I think it helps to explain what is going on in an understandable way. P a g e | 39 1. Calm and This stage is your happy, idealistic mood. I.E. what both you and the child relaxed want. At this stage your child is best able to perform, learn, and to grow. The more time your child spends calm and relaxed, the better for everybody involved. This should be your target when trying to help your child. 2. Slightly At this stage your child is slightly defensive, but has no problems thinking stressed or acting. You may see some minor defensive reactions here, such as avoidance; but they usually aren’t very problematic. It isn’t unusual for the child to be slightly stressed all day long, especially in school or other uncomfortable environments. 3. Moderately At this stage your child becomes more defensive, and you start having stressed, some noticeable (but usually not major) problems due to defensive slightly reactions. Your child can think rationally and they are in full control of overwhelmed their actions; so you can still reason with your child when he gets like this. However, at this stage, your child will start to have some difficulty processing information. If you have ever tried to deal with too many things at once then you know that feeling overwhelmed tends to make you think a bit slower, and get confused easier. So there may be a delay between what you say and a response from the child. For example: you tell your child to do something, and he just sits there with a blank look on his face for a few seconds. Many parents falsely assume that this is a sign the child is not listening, or is choosing to ignore the parent. In reality, it may simply be that the child is trying to figure out what is going on. You might need to repeat yourself (calmly and patiently) more than once when your child is stressed out. This is also the time when you (or more preferably your child) should start taking actions to avoid the situation, or try some calming techniques (deep breaths). I know from personal experience that I can tell when my brain is starting to slow down. That is my cue to take a break, and go walk around for a bit to clear my mind. If you take actions to avoid being overwhelmed at this phase, then it doesn't go any further. It takes a few years of practice before your child is able to reliably recognize the signs on his own and take actions to avoid the problems, but you can help with this. I will talk about dealing with stress effectively, in detail, later in this book. P a g e | 40 4. Very At this stage your child is very defensive; instincts start kicking in more stressed, heavily here, and the child’s defensive response becomes even more moderately pronounced. The child still has control over their actions at this point, but overwhelmed it is becoming increasingly difficult for them to think rationally and clearly due to being too overwhelmed. As such, trying to have a rational discussion and reason with the child is difficult at best. Your child may still be able to think, but not very well, and not very quickly. At this point, it is best to get your child out of the overwhelming situation, and then deal with them once they have calmed down. It may not work perfectly the first few times, but as your child matures he should be better able control his emotions, and pull back before he gets too overwhelmed. 5. Extremely At this stage your child operates mainly on instinct. This is when the child’s stressed, very defensive reactions become major problems. Depending on your child’s overwhelmed defensive reaction they may have an angry outburst and yell at you, saying things they don’t mean. They may physically push you away and be very aggressive. Or your child may just curl up into a ball on the floor and be unresponsive. They are still conscious enough to be aware of their surroundings, so if you say something, they can hear it and probably understand it. However, it is impossible to reason with your child at this point. They aren't thinking clearly enough to contemplate the various outcomes of their actions and decide how to act based on that. All you can really do is speak calmly to them and try to diffuse some of their stress thus hopefully calming them down. Your best bet in these situations is to already have a contingency plan set up that your child knows about and has agreed to. For example, you have an agreement with your son that if he is feeling overwhelmed he should go to his room, turn down the lights, and play on his Wii. So the next time your child is on the verge of a meltdown, you would tell him to go to his room and play on his Wii, and that should work. And while I hope I don’t need to say this, threatening your child when he is like this will only make him more overwhelmed, which just makes things worse. 6. Full blown At this stage your child loses their ability to think entirely, and acts purely meltdown on instinct alone. This is basically when your child goes into a panic attack. Your child may attempt to run away from you (despite it being a dangerous thing to do) because their heart is pounding and the adrenaline in their system is just telling them to run (flight response). Your child might P a g e | 41 collapse into tears and cry uncontrollably (My most common reaction). Or, your child may fly into a rage and attack anything and everything, including themselves, random strangers, furniture, or anything nearby (fight response). Your child's body just does whatever it wants and your child is along for the ride. At this point, there is no way for the autistic person to stop by themselves, any more than a person having a panic attack can just calm down and get over it. It doesn't matter what you say, or what rewards/punishments you have set up. The child is effectively unconscious; they can’t control what’s going on once they get this overloaded. All you can do is let nature takes its course, and wait for the meltdown to end. There are, of course, shades in between. It isn't as though your child only has 6 steps between fine and meltdown. It is a continuous transition, not a sudden jump up or down from moderately stressed to very stressed. So your child at any given time may be at a 2, or a 3.7, or a 5.6, or anywhere in between. Sometimes the trip from being fine and dandy to full blown meltdown can be quick, especially if the autistic person is in a very stress inducing situation. For example, if you corner your child, and then yell at him about how he messed something up, that will stress him out pretty quickly. Other times, the progression from fine to meltdown could be a long protracted process that occurs over several days as the person’s stress level goes up and up. Eventually the last straw happens and you wind up with a meltdown. Often times the trigger for the meltdown is relatively minor, such as taking a different route home from school. In those cases what you are really seeing is the last straw that sent your son (who was already very stressed out) over the edge. Whatever the case, the idea I am trying to express here is that the more stress your child is under, the more problems are going to arise, and the more likely you are to set off a meltdown. At this time I must point out that your child dislikes meltdowns more than you do. Many parents believe that their child’s meltdowns are behavioral problems that need to be solved with punishment, and this simply isn’t the case. I can tell you from personal experience that it is rather disturbing to lose control of your body and do things you don’t want to do for which you have no control over. It is basically the equivalent of having a panic attack or a seizure. Once the meltdown gets started the autistic person can’t really do anything and is just along for the ride. And just as panic attacks and seizures are unpleasant, so are meltdowns. Punishing your child for his meltdowns would be like giving a ticket to somebody buried under an avalanche for ‘disturbing the peace’. It may be true that the guy buried under the avalanche caused the avalanche. But I guarantee you he isn’t doing it on purpose, and he doesn’t need the ticket to motivate him into avoiding more avalanches. The person has more than enough P a g e | 42 motivation to avoid avalanches if possible without the added insult of the ticket. What he needs is help in learning how to avoid the avalanches, not punishment when he gets hit by one. Perhaps I should give you an example from my own life to show you how this all happens. When I was young (3rd grade), I was getting ready for school in the morning. I was already anxious because I didn't like school; I was often treated poorly by my classmates. If I had to give it a number value, based on the above list, I would say that I started the morning around 2.5. So I go to my drawer and start to get dressed, only to find out that I don't have a matching pair of socks. Now this is a very stupid thing to get upset about; but the problem is that I didn't want to wear mismatching socks. If my classmates saw that they would insult me and call me stupid for not being able to match my socks. This thought raised my stress up to level 3 or so. I then began searching all around my room for a matching pair of socks. After a few minutes my mother was annoyed that I was taking so long to get ready; so she started yelling at me to hurry up. Now I was stuck. If I couldn't find matching socks my classmates would insult me, but if I kept looking my mother would get mad at me. As I stood there for about 30 seconds, trying to figure out what to do, my mother got angry at me. After all, she just told me to hurry up and all I was doing was standing there with a blank look on my face. So she comes over, yells at me some more, and threatens to hit me if I don't hurry up. This of course makes me more stressed and we get to level 4 on the stress-o- meter. At this point I was getting too stressed out and I was starting to shut down. I tried to explain what was going on to my mother but it didn't come out well. I stammered a bit, and all I could get out was, “I can't find socks.” At this point my mother was very annoyed with me; so she dragged me over to my dresser, got out 2 random socks, and handed them to me. This didn't help much as I don't like being forcibly dragged around. It also didn't solve my problem of not having matching socks. So we get to a level 5 or so. I start shutting down even more and begin losing major functions, such as speech. I tried explaining it to her again, but this time I wasn't even able to get words out. All I was able to get out was a few grunts under my breath and just stand there highly overwhelmed and unable to figure out what to do, what to say, or anything else. So my mother, who is now very annoyed at me for just standing there grunting when we are behind schedule, starts yelling at me. And that’s when I went into full meltdown mode. I have no idea what she said, but my guess is that it was something threatening because I could definitely tell that she was yelling. So I ran out of the room, got to the bathroom, locked the door, and sobbed uncontrollably for about an hour or so. Hopefully this helps you to understand what sort of situations result in the problems you are experiencing. Whatever causes the problems and subsequent meltdown, the stress is always the leading factor. If you can recognize the signs, and deal with the stress using effective coping strategies before things get out of hand, then you can save yourself a lot of headaches. P a g e | 43 Long Term Effects Of Stress The last problem with your child being stressed out is perhaps the most troublesome. While a defiant, avoidant, or angry child who has meltdowns is indeed problematic, it isn’t the worst result of stress. The worst thing that can happen for your child, when dealing with stress, is for them to ignore the stress and keep pushing themselves far past what they are capable of. If your child does this then they are setting themselves up for nervous breakdown, potentially costing several years of their life. I know many autistic people who, like me, grew up before there was any label available to explain why we struggled with things which people take for granted. Whenever we struggled, and got stressed out, we were told to quit be lazy, and work just like everybody else. I was routinely told, “Life isn’t fair, stop complaining, act like a man and deal with it.” Since our peers around us seemed to be doing just fine, and everybody called us lazy, we believed that the constant struggles we faced and effort we had to put in to merely get through the day were typical. As a result there are many autistic people who have pushed themselves far beyond what they are capable of handling. They have pushed themselves day after day after day, operating mainly on adrenaline, battling exhaustion and constant stress, just to struggle through another day of school or another day of work. While the human body and mind is capable of pushing itself beyond its normal capabilities for a short period of time in order to deal with emergencies, this is not sustainable long term. Prolonged and repeated use of emergency reserves merely to get through the day takes its toll. I know of autistic people who were gifted students, getting A’s in school, acting normal, blending in, and fulfilling everybody’s expectations. I know of autistic people who moved out on their own, got jobs, lived by themselves, and tried to blend in the rest of society. These autistic people had been told by their parents, peers, media, and everybody around them that unless they act just like everybody else, work 40 hours per week, and get straight A’s, they’re worthless. And so people like me dug into their reserves and put forth more effort than they should have, getting more stressed out, more exhausted, and more run down every day. Because of that, many autistic adults out there will tell you a tale of how they pushed themselves too hard for too long until eventually their bodies and minds gave out and they just fell apart, resulting in a nervous breakdown. The people who were seemingly doing fine in life where really only hanging on by just a thread. All it took was for some small problem to crop up, either more hours at work, less free time, relationship problems, etc. When you are so stressed out from pushing yourself for so long, that small little snare can unravel your entire life. People who were previously living independently, and holding down jobs can have a nervous breakdown and wind up getting institutionalized. P a g e | 44 People look at this autistic person and all they can see is somebody, who was functioning fine, suddenly deteriorate to the point of being unable to even take care of themselves. It isn’t uncommon for people to say, “He is reverting and becoming more autistic.” Some doctors will say that it is a sign of psychosis and recommend anti-psychotic drugs (which usually make the situation much worse). Some people will say that the person is just being lazy and doesn’t want to work. They will then recommend that you punish the child and make him miserable until he goes back to school and gets his grades back up. In reality this isn’t regressing, or psychosis, or being lazy. It is simply pushing yourself too hard for too long, getting too stressed out until you eventually have a nervous breakdown. Now after reading this chapter you are probably thinking to yourself, “Wow, that sounds like a lot of problems. What can I do to fix it so my child doesn’t have meltdowns? How can I keep my child from ruining our life and his with poor defensive reactions? How can I avoid him having a nervous breakdown?” Well, the answer is two-fold. Number one: reduce the amount of things in your child’s life which create stress, either by avoiding them, or handling them differently. Simply put, the less stress your child has to deal with, the less problems you and your child will have. As such the entire next chapter is all about what causes stress, and what can be done to reduce that stress. But let’s be honest with ourselves. Even if you do everything perfectly in reducing the causes of your child’s stress, there will still be some stress in your child’s life. Stress is an unavoidable fact of life that everybody has to deal with eventually. To help out with that the chapter after ‘What causes stress?’ will be ‘How do you deal with stress?’ In that chapter I will discuss different ways to cope with the stress inherent with life. I will give ways to reduce the stress you have, and give better coping methods which don’t cause your child to become controlling, defiant, or anxiety ridden. P a g e | 45 What Causes Stress? As I discussed in the last chapter (which I hope you just read) stress can cause many problems for an autistic child and those around them, especially if handled poorly. And that brings us to part two of the three part series on stress: reducing the things which create stress in your child’s life. If you can deal effectively with these problems, then you should have much better results when working with your child. Since there are hundreds of thousands of possible things which can cause stress, I can’t list them all. Each and every child is different so I can’t give individualized solutions for everybody. Instead, I will try to group the problems into categories and give examples of how to deal with each category. Hopefully, you will get a good understanding of what causes your child’s specific difficulties, and work out your own individualized solution. Sensory Problems Let’s get started first with sensory problems. This is perhaps the most common problem that autistic people face. I mentioned it briefly at the start of the last chapter, but let’s go into it with more detail. The first thing to mention is that every child is different and has a unique set of senses. It isn’t as though all senses are either normal or on high. There are varying degrees of sensitivity from very under sensitive, to normal, to highly over sensitive. So you need to spend some time and figure out what bothers your child specifically. If it helps you to understand this better, let’s look at me for an example. I have a sensitive hearing, and as such loud sounds are a huge pain to me. I have some mild light sensitivity, and as such I have to wear sun glasses while outside in the summer, or squint to keep the glare from hurting my eyes. But the light sensitivity isn’t severe enough to cause any major problems. As for taste, I can’t stand anything bitter such as dark chocolate, coffee, or alcohol. Just the smell of these things makes me want to vomit. Also, squash and zucchini make me want to vomit as well. I don’t know why, I just find the taste repulsive. As for smell, I am usually fine except for things like tobacco or perfume which just make me want to gag. And lastly my sense of touch is very muted. I have cut myself on multiple occasions without realizing it until I saw the blood dripping from the wound. So now that we have covered the basics of how sensory problems might present themselves, let’s look at them on an individual basis, and see what can be done to deal with them. For starters, over sensitive hearing is probably one of the more troublesome issues to deal with since the problem is nearly constant. Your child is almost always in an environment with sounds. Whether at school with a bunch of children, or at home with the TV, there is rarely a moment of quiet. Now you may be fine with sounds all day long, but since your child is P a g e | 46 more sensitive to them, the prolonged exposure can be stressful. For example, let’s look at a simple chart of decibel levels: Noise Source Decibel Level Noise Effect average factory, freight train 80 at 15 M Freeway traffic at 15 M, 70 Annoying vacuum cleaner Conversation in restaurant, 60 office, background music Quiet suburb, conversation at 50 Quiet home Library 40 Quiet rural area 30 Whisper, rustling leaves 20 Very Quiet Breathing 10 From my personal experience, I know that my hearing is probably about 20 decibels higher than normal. This estimate is based on the fact that I can clearly hear things much softer than normal, and sounds are painful for me at a much lower threshold. Of course 20 DB is just an estimate since I have no way of comparing my hearing to the average; but it is the best guess I can make. As you can see, what would seem like a quiet conversation to you (50 DB) would seem loud and annoying to me (70 DB). What would be a standard office environment for you (60 DB) would be like standing next to a freight train for me (80 DB). Have you ever tried to concentrate with a freight train rumbling past you? That’s about what it would be like for me to work in an open office. What would be loud and annoying for you, such as a car horn or power saw, is painful to me. Imagine if all your conversations went like this: You: Hi honey, I am home. Spouse (yelling): HI! WELCOME BACK! HOW WAS YOUR DAY?! As silly as it may seem, that’s what a person with sensitive hearing has to deal with on a constant basis. If everybody yelled at you all day long, wouldn’t it stress you out too? If simple things like car horns, home appliances, people singing, or traffic caused you pain, wouldn’t that stress you out too? Getting an unexpected and painful shock to your system every time a door squeaks or car backfires isn’t exactly a pleasant experience. It would be like somebody following you around all day blasting an air horn into your ear at random intervals. That would stress anybody out. P a g e | 47 So now that I have explained the problem, the question becomes, “How do I know if my child has over sensitive hearing?” Luckily, the signs are fairly obvious. For starters, your child should show a painful reaction (such as covering their ears or crying) when exposed to a volume which most people don’t find painful. Try turning on the vacuum cleaner next to them and see if they cover their ears. You could also try snapping your fingers, or clapping your hands next to them to see if they flinch. And, of course, the most reliable method is to simply ask the child what sounds do and do not hurt. It may not be possible to do this with a non verbal person, but once they figure out how to talk it becomes much easier to gather information. Once you have determined that your child has this problem, the next step is to look at possible solutions. Perhaps the simplest way to deal with noise sensitivity is simply to avoid loud environments altogether. For example: concerts, noisy restaurants, rallies, sporting events, parties, etc. These environments aren’t exactly painful most of the time (depending on the degree of sensitivity) but just annoyingly loud. This can make your child more stressed out over time as they have to deal with the uncomfortable environment. I should point out that your child may not make the connection between loud sounds and increasing stress. It is obviously easy to figure out that squeaky doors are painful. But when you go to a sporting event and just feel more and more stressed over time, you may not necessarily make the connection that it is the loud ambient environment which is making you stress out. The other thing you can do to help is to modify the environment as much as reasonable to reduce the noise level. You can’t exactly modify the environment at a sports stadium, but you can do something about your house. For example, turn down the TV a bit. If you or somebody in your family likes to listen to music then use headphones instead of speakers. Have your child’s work area set back in a quiet spot like his room, as opposed to being in the kitchen within earshot of the television. At school, talk to the teachers and see if you can get your son into a quiet environment whenever possible. Some things are obvious, like eating lunch in the classroom or library, instead of eating in the gym with 400 other loud kids. If you can’t reduce the noise level of the environment, then you could try to change the child. And no, I don’t mean putting him up for adoption and getting somebody else. I am referring to getting him some hearing protection. Simple things like earmuffs (the kind worn on construction sites) can be bought from any hardware store or places like amazon.com for less than 15 dollars. These have a padded cup that go over your ears and are very comfortable. I always wore a pair when I worked in the machine shop and they were very nice. It is a shame you can’t wear earmuffs in public without people thinking you are crazy. But your child can use them when he is not in public, such as in the car, or at home. Hopefully the people in your family are nice enough that they won’t make fun of his earmuffs. Of course, if your child doesn’t care about people looking at him funny then he can wear the earmuffs anywhere he wants. P a g e | 48 If your child is more concerned with how he appears in public, then there are some more discreet options available for hearing protection. High fidelity ear earplugs are a great way to reduce the volume while still preserving the sound quality. So you can easily have a conversation, or listen to a lecture while wearing them. These generally sit inside the ear and have clear stems so they don’t stand out very much. If anybody asks, your child can just say that they help him to hear better, and most people will just assume that they are hearing aids. For some reason wearing hearing aids is socially acceptable, but ear plugs aren’t. These also come in children’s sizes as well. If you want, you can just Google ‘baby blue earplugs’ and the first item on the list is an example of what I am talking about. Another option to consider is ear buds that have a noise reducing baffle built into them. If you want to see an example of these, just Google ‘noise reducing ear buds’. These look just like any standard pair of ear buds that hook up to any MP3 player. Wearing these with the wire tucked into your pocket would look perfectly normal while out at the stores, park, or any other public location. Of course they probably wouldn’t look normal in a classroom, and your son’s teacher may wonder why he is wearing ear buds in class. The next sense on the list is sight, so let’s talk about bright lights. Fortunately for me, I don’t have that big of a problem with lights. I am slightly more sensitive than normal, but nothing too problematic. Unfortunately for this book, that means I am lacking an in depth metaphor for what hyper sensitivity to light is like. The best analogy I can make is that bright lights hurt my eyes, much like staring into a laser pointer would hurt your eyes. Standard house lighting is fine for me, as is sunlight filtering in through closed shades. But brighter things like reflected sunlight and stage lighting cause me pain. I usually wear sun glasses when I am driving as the sun reflecting off the concrete pavement would be painful otherwise. For other people, the threshold for pain is a lot lower. Their eyes can hurt in standard house lighting. And fluorescent lighting can hurt because they can see the bulbs pulsing at 60 Hz, much like a painfully bright strobe light. Determining whether or not your child has oversensitive sight is slightly trickier than determining if they have oversensitive hearing. Of course the easiest way to gather this information is simply to ask the child what lights do and don’t bother them. Try installing low wattage bulbs in their room, or using sunglasses for the weekend, and then ask them to compare the difference to see if it helps. If your child isn’t verbal enough to answer you then you may have to look for other signs. Things like squinting, pressing of the eyes, or rubbing of the eyes tends to indicate eye strain. Since eye strain can be caused by simply being tired, it’s probably best that you look for these signs only when the child is well rested. If the child seems fine in a dimly lit environment, but constantly squints or rubs their eyes when outside then they likely have a light sensitivity. P a g e | 49 The advice here is very similar to that of hearing sensitivity; avoid bright lights and change the environment where possible. Things like rave parties and light shows probably aren’t a good idea if bright lights hurt your eyes. As for the environment, try to avoid using bright lights and fluorescent bulbs whenever possible. Instead of using 80 Watt flood lights in your house, try 40 Watt flood lights instead. If you can’t use low Wattage bulbs in your entire house for to some reason, then installing low Wattage bulbs in your child’s room would be a good start. The light in my bedroom is only 10 Watts, and I can read by it just fine. You could also put up curtains in your house to block out excess sunlight. Much as with hearing, if you can’t modify the environment, modify the child. Sun glasses do a really good job of reducing light. I have this cool polarized kind that really reduces the glare, and I wear them when I am out driving on a sunny day. I should also mention something referred to as ‘Irlen Syndrome.’ The theory behind Irlen Syndrome is that the brain processes each color differently. So things which appear red are processed by different nerves than things which appear blue. Thus, your brain may be more sensitive to red light then blue light. Studies have shown that when some people with light sensitivities wear tinted glasses (which filter out the colors they are sensitive to) they do better at things like reading or processing visual input. These tinted glasses are referred to as Irlen lenses. Having never used the glasses myself I don’t know how much having tinted shades helps (if any). But the research as of today indicates that it may be helpful for those who have this color sensitivity. I don’t know if your child falls into this category, but if you notice they have light sensitivities, then it may be something to research further. The next sense on the list is the sense of touch. This sense is interesting because it is actually several different senses that are often rolled together. There is the sense of pressure (how firmly you are holding something), the sense of heat, the sense of texture, and the sense of pain. Since these are processed differently by the brain, they need to be discussed separately. If a person has an unusual sense of pressure, then they will probably react differently when hugged. Some autistic children dislike being hugged because their sense of pressure is ramped up too high. When you hug them it feels as though you are crushing them, and as such they may try to avoid hugs. Conversely, if this sense is hypoactive then the child may really like firm hugs, aka deep pressure, and find it calming. Which category your child falls into is fairly easy to determine; simply wrap your child in something like a comforter or blanket, and give them a firm hug to see how they respond. If the child is oversensitive then they won’t like the feeling. So stop squeezing them, and consider it problem solved. If your child is under sensitive then they will enjoy the sensation, and may benefit from more deep pressure. Things like firm hugs definitely help out. There are also things like weighted blankets which provide pressure while the person sleeps and has a calming effect. Some people recommend elastic shirts which P a g e | 50 squeeze the chest, like a wearable hug. These have been shown to effectively help calm down children who have a hypoactive sense of pressure. They are called compression shirts, and you can get them from any sports store. Temple Grandin, a somewhat famous autistic person, is a strong proponent of using deep pressure therapy (aka squeezing the kid) as a means to help the child feel relaxed. I know that I also like to be squeezed, so there is at least my anecdotal evidence to back up the claims of effectiveness. As for the child’s sense of heat, there isn’t too much you can do about it. If the child is under sensitive to their skin’s heat receptors then they really won’t feel when they are cold or hot. As such they may gladly wear a winter jacket in summer, or shorts in the winter. If this is the case with your child, then you may want to make sure that your child wears weather appropriate clothing so they don’t get heat stroke or hypothermia. If their sense of heat is oversensitive then they may have problems where they are constantly too hot, or too cold, and small temperature swings bother them. There really isn’t much you can do about this other than keeping the thermostat constant. You can also give your child something hot to drink if they are cold, or cold to drink if they are warm. The liquid will transfer heat to the body pretty quickly. The next area of touch to talk about is what I am going to refer to as a ‘sense of texture’. Now, unfortunately for me, there is no such thing as a sense of texture. What we feel as texture is really a combination of our sense of pressure, muscle tension, and skin distortions. This is how we feel if something is smooth, rough, sticky, slimy, chalky, etc. Since this really isn’t a true sense, I can’t say that your child will be over or under sensitive. But what can happen is that your child may find certain textures to be very uncomfortable. For example, your child may really dislike things that are slimy, such as soap, or itchy, such as the tags on shirts. Conversely there may be some textures which your child likes, such as petting a furry dog, or running his hands along a rough wall. As odd as these may seem, do the child a favor and respect the sensitivities. If your child really hates the feel of soap on his hands because it feels slimy to him, then don’t just tell him to get over it. That would be like somebody scraping off your skin with a belt grinder and telling you to get over it. Instead, find some other alternatives. If he doesn’t like the thick lotion, then try the soap dispensers which squirt out foam instead. If certain fabrics make him very uncomfortable then don’t make him wear clothes with those fabrics. If he doesn’t like handling something, then try getting him some gloves. While it may seem odd to you, being uncomfortable constantly isn’t very fun and you should respect that. The last area of touch to talk about is the sense of pain. This is basically your body’s way of telling you, “hey, that’s dangerous, don’t do it.” I know that I am very under sensitive to pain. As I stated earlier, it is common for me to cut myself and not notice it until I see my blood dripping on something. Likewise, this also means that I can smack my head into a wall and not P a g e | 51 feel any pain from it. To be honest, it actually feels somewhat nice to do this because I get an endorphin rush. This can sometimes lead to self injurious behavior which I will discuss later in the chapter about stimming. If your child is like this, then you will probably need to explain the threats posed by injury very clearly. Feel free to talk about things like brain damage, infections, amputation from infected wounds, etc. I don’t think you should try to terrify your child; but make sure that they know there is a downside to smacking there head into something, or cutting themselves. On the opposite end, some children are extremely sensitive to pain and thus feel hurt very easily. Tiny things like little scratches or cuts will seem much more painful than normal to the child. Children with this problem are often times thought of as cry babies. And while the child may cry more often than normal about minor scratches, that’s because it really does hurt more than normal. If your child has this problem then you probably won’t want to sign them up for contact sports. Otherwise there isn’t much you can do about it. Next on the list is the bodies’ own internal senses. These are the senses which tell you whether or not you are hungry, or thirsty. These senses let you know when you need to use the bathroom, and when you are feeling sick. These senses basically tell you when your body isn’t operating properly, and needs maintenance of some kind. When these senses don’t work very well then your child won’t get that information, and he won’t be able to tell when he is sick, or needs to use the bathroom, and so forth. To give an example of this, I will share the story of one day when I was in first grade. I woke up in the morning feeling just fine. I got in the car, drove to school, and was walking to my classroom still feeling just fine. As I got to the staircase I started to feel a bit woozy. I sat down on the stairs to keep from falling over when I then barfed all over my shoes. I then collapsed and fell over. The school nurse checked me and determined that I was apparently running a high fever. If I was normal then I probably would have felt sick when I first woke up. But since I am not normal, I had no way of knowing I was sick until I about 10 seconds before I collapsed. To put it simply, my body and my brain didn’t communicate well enough for me to know what was going on. Problems with malfunctioning internal senses can also cause autistic people to have some bladder control issues. A common concern amongst parent is that they cannot potty train their child. In some cases it may be due to the stress your child is under, but in most cases the problem is mainly a failure of their own internal senses to pick up on the full bladder signal. For that reason they never know that they need to use the bathroom, so they just hold it in until it leeks out. The best advice I can give is to stick to a schedule where they use the bathroom when they wake up, at least once during the day, and again before they fall asleep. You may also need to use pull ups for longer than normal. All I can say is that this is more embarrassing for your child than for you, so don’t make them feel any worse by making a big P a g e | 52 deal out of it. There are a lot of people who struggle with incontinence for a number of reasons. And while it is annoying, it isn’t something that you need to berate, belittle, or harass your child over. The last two senses to talk about are smell and taste. These are usually considered separate senses, but in reality they are very closely related. These senses are the information from your body’s chemical receptors. For taste it is the receptors on your tongue; for smell it is the receptors in your nose. Much like the sense of touch, this isn’t just one sense but multiple senses which work together to let us figure out the chemical makeup of what we smell. And much like our ‘sense of texture’, different smells elicit different responses in our brain. As such, some food may seem very tasty while other food may seem disgusting. Generally, most people share a common agreement about what tastes good vs. what tastes bad. For example, sugar tastes good, things like dirt taste bad. However, when the brain wiring is off it can cause things to taste differently than normal. As such, your child may like some unusual things. For example, your child may find dirt, or other non food items, to be rather tasty; sometimes referred to as pica. Your child may also dislike certain types of food that other people would enjoy. For example, I don’t enjoy bitter things like dark chocolate or coffee. This can also apply to smell. Things which smell good to most people like perfume may be repulsive to your child. So, what do you do about this? The simple answer is that you don’t force your child to eat foods which he finds disgusting. I know that you may want your child to eat his peas, but for him that might be like eating manure. Try different vegetables or fruits instead. If it really comes down to it, just give him a multivitamin to make sure he gets what he needs nutrition wise. People often underestimate the bodies’ ability to survive without eating peas. As for smells, just don’t smoke in the house, or use perfume. Combined with getting some Febreze bottles, this should reduce the amount of smells your child has to deal with. So now that we have covered all the senses, let’s take some time to review what we have learned. Every person has a unique set of senses through which they perceive the world. Since these senses are handled by different parts of the brain, you cannot make blanket statements like, “my child is over sensitive” or, “my child is under sensitive.” Your child may be normal in some senses, over sensitive in other senses, and yet under sensitive in other ways. You should look at each person as an individual, and see how their unique senses are handled. When your child has problems with one of their senses causing them pain, the first thing to do is try avoiding or changing the offending environment. If you cannot avoid or change the environment, then try changing the child. Things like earmuffs, sun glasses, and gloves can be used to dull the senses and help reduce the discomfort associated with oversensitivity. P a g e | 53 Uncertainty As I discussed briefly in the last chapter, uncertainty can cause your child to stress out. Most people get stressed out and worry when they don’t know what is going to happen next. But why is this much more common and problematic amongst autistic people? Like all complex things in life it is difficult to pinpoint one exact reason why. But there are a few common autistic traits which can contribute to this. The main reason an autistic person gets confused and faces uncertainty more often than normal is the difference between detail (step by step) thinking vs. the typical top down (goal oriented) thought process of a normal person. Once the child gets confused, and uncertain, a heightened fear response causes more stress than normal. In order to explain how detail thinking leads to uncertainty, an example is required. So let’s look at a memory from my own childhood. When I was younger, about 4 years old, my mother would set out my clothes for me to get dressed. I knew where the clothes were in the drawers, and I knew what I needed to put on in what order. But my mother had always picked out my clothes for me. So, one day I find myself with no underwear set out for me. I was baffled; I needed to put on my underwear first but couldn’t find any set out for me. After searching around my room, I finally called to my mother and told her that I couldn’t find the underwear I needed. My mother went to the drawer, got some out, and then told me that I should get the underwear from the drawer myself without calling her. This thought had never occurred to me. I knew where the underwear was; I had seen my mother get it out repeatedly. But for some reason I never made the connection that I could get it out myself since my mother always did it for me. This may be a somewhat humorous story, but it shows the sort of problem that your child may be dealing with. While your child may have all the information that they need to solve their dilemma, they just don’t think of the solution because they have never done it before. This is sometimes referred to by parents as, “lacking common sense.” The reason why this relatively simple connection isn’t made is because the child sees tasks as a series of small little steps, or details. For example, I knew that to get dressed I had to first get undressed, then put on the underwear, then the socks, then the T-shirt, then the pants, etc. From my point of view, getting dressed is a matter of doing step A, then B, then C, then D. After following all the steps in order, you eventually get to the outcome E. When one of the steps fails, you don’t know what to do next, thus causing uncertainty. For a normal person, getting dressed isn’t about doing all the little steps from A to D to arrive at outcome E. A normal person sees the need to get to outcome E, and then works from there. They figure out what steps they need to do along the way, what steps they can skip, what to do if a step fails, etc. A normal person isn’t focused on the individual steps along the way, he is just thinking of the end goal, and how to get there. This is why a deviation in steps really doesn’t bother a normal person. In a way, normal people have a natural ability to auto P a g e | 54 correct for discrepancies and figure out how to change their approach in order to get to the goal. Since an autistic person sees the world in a bunch of small details, this method of goal oriented ‘winging it’ really doesn’t work out. There are simply too many unknowns, and too many vague details using this approach. In order do something, an autistic person has to create a plan by putting together all of the details into a workable strategy. If your child didn’t make these plans then he wouldn’t be able to figure out how to do anything. Plans and routines are a healthy and productive way to do things because it allows the child to predict what will happen next, and provide a path to achieving the desired outcome. The down side to this approach is that if something doesn’t happen according to plan, then the autistic person doesn’t know what to do about it. This can lead to confusion, and uncertainty. This is also why interrupting or changing the routine can lead to problems, because doing so basically sabotages the child’s ability to do whatever they are trying to do. To offer an analogy and help you understand, consider this situation: You go out to the store and you purchase a piece of furniture which requires assembly. When you get home, you open the package to find several screws and a couple pieces of pre drilled wood. You start by getting a screwdriver, unpacking the box, and beginning on page one of the instruction manual. As you are working, somebody sneaks up from behind and steals your screws. At this point you are somewhat stuck because you have no way of joining the pieces of wood together in accordance with the instruction manual. Since your manual no longer applies due to a change in circumstances, you are unlikely to complete the task of finishing your furniture assembly. This is what an autistic person has to deal with when their plan unexpectedly falls apart. So, what do you do about it? For starters, try making a plan friendly environment. The more your child knows what is going on, the better and more detailed plans he can make. For example, what is going to happen next? When will that be finished? What will be coming after it? Also, try to give your child advanced notice when things change. The more time he has to prepare, the better he will be able to prepare a plan. You could also create a schedule with your child to help him better plan out his day. There are entire websites out there dedicated to making schedules for autistic people, some of which are made with pictures. The more details you can provide about what is going to happen next, the better. Telling your child that you are going to the dentist may help out a bit; but giving them more information about what will happen, what to expect, and so forth will help out more. Another thing you can do to help is provide your child with some assistance creating effective plans. Children are not born knowing what works and what doesn’t; so they often aren’t very good at making effective plans when they are young. Over time, as they mature, they can better predict outcomes and decide which courses of action would work out best. But at a young age you will probably need to provide some assistance. An excellent example of this P a g e | 55 is something called ‘social stories’. If you aren’t familiar with these, you can Google the name to find out more. Basically, these provide instructions for how to handle situations in a way which a young child can understand. As the child grows older, and gains independence, you probably won’t be able to tell them how to do things. But if you have a good relationship, you can still offer friendly and helpful advice about how to accomplish things effectively. Of course, even the best laid plans cannot account for everything. Circumstances do change, and not all changes are foreseeable. So, in order to have the best results your child will need to learn how to adjust their plans on the fly. This is what I like to refer to as adaptable planning. To elaborate, if we look at our example of stolen screws, that definitely changes the circumstances and leaves the existing plan (instruction manual) invalid. But it doesn’t prevent the task of assembling the furniture from being accomplished. The task can still be completed if you change your plan and use glue instead of screws to hold the pieces together. Likewise, the purpose of adaptable planning isn’t to eliminate the plans, but merely to allow the plans to be changed and updated as necessary to account for unexpected alterations. As this is a very useful and common coping mechanism, I will discuss it in more detail in my next chapter. This explains why autistic people get confused and uncertain so often. But in order to explain why that uncertainty leads to so much stress, you have to understand some things. For starters, autistic people often think very pessimistically about what might happen. As I said in the last chapter, your child is probably more stressed out then you are. When you have to deal with stress all day long it tends to make your wary and pessimistic. The second reason for this pessimism is that it is wired into their brain. As I talked about in the chapter ‘What is Autism’, the part of the brain called the amygdala (which handles the fear response) is often overactive in autistic people. This causes them to panic, be pessimistic, and fear the worst more often than they are optimistic. The other reason uncertainty leads to stress is that autistic children often don’t understand how bad something can get, so they tend to assume the worst possible scenario even if it is completely irrational. For example, let’s look at the situation where you just ordered a pizza to be delivered. You don’t know how long the delivery will take, thus causing uncertainty. You, the parent, may not know exactly when the pizza is going to be delivered, but you don’t care because you know it will arrive fairly soon. And if it doesn’t arrive, then you can always get some food from the kitchen. Your worst case scenario is that if the pizza doesn’t arrive in 30 minutes, you will eat sandwiches instead. Conversely, your child doesn’t think of this backup plan. If your child doesn’t know when the pizza will arrive then it is possible that it might not arrive for weeks; and he might starve to death first! I may be overselling the idea, but I think you see what I mean when I talk about over reacting to relatively small problems because they assume an irrational worst case scenario. P a g e | 56 Your child isn’t making up these ridiculous and irrational worst case scenarios because he is trying to be annoying, he just doesn’t understand that he is being irrational. While a normal child would be aware of eating sandwiches as a backup plan, an autistic child may not think of that. Normal people are generally aware of all the safe guards and back up contingency options that prevent major problems. But, as I showed in the previous example about dressing myself, it isn’t uncommon for a young autistic child to miss obvious things. They simply don’t know that their worst case fears are irrational because they have never been told otherwise. To give an example that helps you understand, consider this scenario: You are out in some parking lot, loading groceries into your car. As you are doing that, some men grab you from behind, tie you up, and throw you in a trunk. At this point, you don’t know what is going to happen next but you are pretty pessimistic. The worst case scenario you can think of is pretty bad for you, so you begin to panic. That is about what your child goes through whenever some small part of his plan goes off track. Telling your child dinner will be late may not seem very problematic to you, but for your child it may be very worrisome because he thinks there is a chance that he could starve. So, now we get to the fun part of what can be done to deal with this problem. For starters, there isn’t much you can do to stop your child from being pessimistic as long as life is a constant struggle for him. If you want him to look on the bright side, he is going to need to have some time in his life which doesn’t suck. What you can do however is teach your son to recognize when he is getting stressed out, and assuming a catastrophe when all he really has is a small problem. If he is worried about something going wrong then it isn’t necessarily a bad thing, it just shows that he is being cautious. However, if he allows being cautious to turn into paranoia then that becomes a problem. Your child needs to learn how to not let his emotions take the better of him, which is something I will describe in further detail next chapter. The second thing you need to do is help your child to have a good understanding of how things really work, and what possible back up contingency plans exist. To put that simply, talk with your child about what the worst case scenario is in situations which make him stressed out. For example, if he can’t finish his drawing then the worst that can happen is that he can finish it later. Or he can make a new drawing. If he can’t find something then the worst case scenario is that he can get a new item to replace the one which he lost. If he fails a test then he can get some help, and try again later. If he keeps failing the test, then you can skip the subject. It may seem like common sense; but for somebody who doesn’t learn by indirect observation, it may not be obvious to him. The more your child knows that small problems don’t have to become huge problems, the less he will be stressed out by uncertainty. The good news is that this does get better with age as the person is better able to understand the way P a g e | 57 the world around them works. But the more you explain things to your child, the faster this learning will happen. Frustration Another thing which causes stress in an autistic person’s life is frustration. Like many things in this chapter, this could be said of anybody. When you don’t get what you want, you tend to get frustrated, which leads to stress. So why am I bringing it up as an issue specific to autism? Simply put, autistic people get frustrated more easily, and more often than normal people. There are multiple reasons why, but the major reasons which I will be discussing here are difficulty with tasks, and perfectionism. So, what about autism makes tasks more frustrating than normal? The core of the problem is that there are a lot of things which people want to do. And the more we want to do something we can’t, the more frustrated we get. For example, I would like to be able to pole vault 30 feet in the air because I think that would be cool. But it isn’t something that I care about; it is just a random thought I had while watching the Olympics. If I never learn to jump that high, I won’t get frustrated because it isn’t something I really want. However, if a more pressing need cannot be fulfilled, then it generally causes more frustration. For example, you might not get frustrated if you can’t get your favorite breakfast; but you would probably get frustrated if you can’t eat for a few days. To put it simply, the more important a desire is, the more frustrated you get when you can’t fulfill it. So ask yourself, how would you feel if you couldn’t communicate basic things? What if you had difficulty with things like asking for help when you are hurt? While there are some autistic people who are fairly non social, there are others who have the desire to be social and want friends. Yet their inability to understand basic social interaction prevents them from developing friendships. Would you feel frustrated if your peers thought you were just some creepy guy, and wanted nothing to do with you? I myself am fairly non social, but I still like to have some people to talk to on occasion, and to play some games with. And when all your classroom peers treat you like crap because you are odd, it can lead to some frustration. The problem boils down to the fact that autistic people tend to struggle with things that most people take for granted. And when you struggle to even say a few sentences, or maintain a friendship, it can lead to a lot of frustration. So the obvious question now is what to do about it? Well, there are several parts to the solution. For starters, try to help your child do some of the things that they struggle with. For example, if they struggle with communication, help them out by teaching some communication basics. Things like PECs are great for that. If they struggle with things like knowing how to maintain friendships then you can teach them some social skills. There are tons of books and P a g e | 58 other material about doing that. Since there is a very long list of ways to help your child with struggles I can’t go through them all in this chapter. Instead, I will be discussing them later in the chapter about therapies. Aside from getting your child help in areas where they struggle, the next thing you can do to help reduce the frustration is to simply not add to the child’s problems. Many parents have an instinct to ‘push’ their child, and I can understand this completely. If you don’t encourage your child to be better and accomplish new things then they won’t grow and explore what they can do. Unfortunately, many parents try to encourage their child to do something which they can’t. This leads to the child failing at the task, and getting frustrated. Worse yet, some parents go strait past encouraging to nagging, harassing, and scolding. There is a difference between helping your child to do his math homework, thus teaching him some useful skills vs. demanding that he do homework and harassing him until he does it. When you harass the child to do things which they cannot do it only serves to make them frustrated and miserable. So, while I can definitely understand and appreciate the parental instinct to push your child, make sure that you don’t leave them frustrated in the process. When deciding whether or not to push them, make sure that what you are pushing them towards is worth doing. For example, learning to read is a highly rewarding and useful skill that is worth acquiring. Conversely, having good handwriting is a fairly useless skill in an age where most written communication is done on computer. So if your child has poor handwriting then you don’t really need to make a big deal about it, but if your child is struggling to read, then that might be a good area to focus on and emphasize. And when you push, make sure that your child actually has a chance for success, not just more frustration. If your child is struggling in math, then sit down with them and explain it to them in a way which makes it possible for them to succeed. Don’t just make demands on your child without providing him any way of accomplishing those demands. That is only going to make things worse. Basically, don’t push your child into situations they don’t need to be in, where they are likely to fail, because that only adds to the frustration. The second thing which leads to frustration is perfectionism. This is fairly easily defined as the child having an unrealistic goal about what he can accomplish, and then getting upset and frustrated by the failure of accomplishing this unrealistic goal. This isn’t related directly to autism, but is a common issue that many autistic people have. It often stems from a feeling of inadequacy, which can be common amongst those with autism who have failed often in life and feel poor because of it. They may attempt to be perfect as a way to prove both to themselves and others that they aren’t stupid or ‘special’. To combat this, you need to teach your child that good enough is good enough. My father taught me an interesting lesson while he was showing me how to caulk a bathtub. He told me that perfection is the enemy of good enough. You see, when working with caulk you P a g e | 59 have a limited time before it starts to harden and get tacky. If you keep messing with the caulk an attempt to smooth out all the rough spots, and get it to be a perfect thickness, then you are going to mess up the caulk and have to start all over. Instead, you should just get the caulk to be good enough, and then leave it to harden. If you keep messing with something when it is good enough, in an effort to make it perfect, then you will often shoot yourself in the foot. While not a perfect analogy for life, the same general idea can be extrapolated to many different things. When you try to do a task perfectly, you will usually fail. A few things, like mathematical formulas, can be solved to a perfect solution. But the vast majority of things in life have no clear and perfect answer. There is a saying that practice makes perfect. In reality practice can reduce mistakes, but it can never make you perfect. When your child has the expectation of perfection in everything that he does then he is going to be disappointed very often. So make a conscious effort to continuously remind your child that being perfect isn’t the goal. It may feel good to succeed, but making mistakes and learning from them is part of the process. It also pays to let your child know that while he may not be perfect, you still love him and accept him, faults and all. Your child may also struggle with perfectionism because he can’t get reality to match up with the image in his head. As I discussed earlier, your child has plans. And those plans may include something going perfectly which he cannot make happen. And when the plans go off track your child gets frustrated, anxious, and upset. Like most things in life, all these issues are related to each other. Uncertainty can cause frustration, and frustration can cause uncertainty. The problems you face often defy simple explanations because they are the combination of many different problems added together. Getting Stuck The next item which can cause stress is difficulty with considering multiple options, otherwise known as having a one track mind, or getting stuck on something. This really isn’t a stand alone issue, but more so something which makes all the other difficulties your child faces worse. As I discussed in the section about uncertainty, not everything goes according to plan A. So when you try to do something, you may find out that your approach doesn’t work as expected. At this point most normal people decide to take a different approach. An autistic person may not necessarily do this, resulting in trying to use the same approach to solve a problem repeatedly. And since it didn’t work the first time, it isn’t going to work the second or third time, leading to frustration. This of course begs the question of why an autistic person would continue trying the same approach over and over again when it isn’t working. This comes mainly from three areas. For starters, as I mentioned earlier, change is unpredictable and thus is generally avoided. Your child knows how to use approach A; he P a g e | 60 doesn’t really know how to use approach B or how to apply it in this situation. And thus your child sticks to what he knows, even if it isn’t working, because he is afraid to try anything different. The second reason your child may stick to a failing plan is that he is too stressed out to think of something else. If you recall the lovely chart from last chapter, you will remember that as your child gets more stressed out they have more difficulty thinking clearly due to being overwhelmed. This can lead to a feedback loop of failure and frustration. If your child fails at his task then he can become frustrated which makes him more stressed. That makes him unable to think clearly and consider other options. This leads him to try the task again without changing his strategy, thus failing and getting more stressed out. Repeat until exasperation. The third reason an autistic person may continue to repeatedly attempt a failing procedure is that they are too concentrated on their task. Concentration is a wonderful thing, until you concentrate too much and lose all ability to step back and look at things from a different perspective. As I said in the chapter about the autistic thought process, it isn’t unusual for a person to get so entranced with something that they lose connection with the outside world. When a normal person fails to do something, they usually decide to take a break, and think about what went wrong before trying again. If your child is too focused on getting something done, he may not step back and take a break when he needs to do so. So, as before, the question becomes how do you deal with this? Since part of this is based on unfamiliarity with other methods, the advice is the same as above. Your child needs to learn how to adapt their plans when their plans aren’t working. Sometimes when plan A fails, he needs to abandon plan A and try something different, even if he is afraid to fail. The other thing you need to emphasize to your child is the importance of recognizing when he has a problem, and asking for help. If your child doesn’t know how to do something effectively, and can’t figure out a solution on his own, then asking for help is the smart thing to do. It may be a bit annoying to have your child ask for help on how to do simple things, but it is better than having him get frustrated and fail repeatedly before asking for help. Multitasking Overload The next problem which causes an autistic person stress is commonly referred to as overload from trying to do too much at once. As I stated in my chapter about how an autistic person thinks, autistic people have to do a lot more of their thinking on a conscious level. This is because the subconscious parts of the brain, which usually handle most things, don’t work normally. The problem with this is that the brain processes information on a conscious level much slower then it processes information subconsciously. For example, let’s look at what is required for somebody to engage in a normal one on one conversation. 1. Think of what you want to say P a g e | 61 2. Translate these thoughts into words 3. Take these words and form them into grammatically correct sentences 4. Take these sentences and add proper inflection, tone, and emphasis 5. Use proper facial expressions 6. Use proper body posture 7. Make proper eye contact 8. Listen to the other person and filter out background noises 9. Take the other person’s words and translate them back into understandable thoughts 10. Watch and interpret the other person’s facial expressions 11. Listen to and interpret the other person’s tone of voice 12. Watch and interpret the other person’s body posture A normal person only has to consciously do step 1, in that they only need to think of what they want to say. Steps 2 through 12 are automatically done for them by their subconscious, so they don’t actually have to think about it in order to do it. Guess how many of those steps have to be done consciously by an autistic person. I will give you a hint, it is more than just step 1. The exact number of balls your child has to juggle simultaneously to simply have a conversation depends on what comes naturally to them, and what doesn’t. But as you can pretty much guess, having a ‘normal’ conversation isn’t as easy for an autistic person as it is for others. If you want to know what it feels like then try doing this: 1. Jump up and down on your right foot 2. Use your left foot to tap out ‘hello’ in Morse code signals on your right leg 3. Keep a hula hoop spinning on your waist 4. Use your right hand to solve math problems on a piece of paper 5. Use your left hand to write out the words to the national anthem 6. Recite the pledge of allegiance If you can do all these things at once, then I offer my congratulations. You can do about half of what an autistic person needs to do simply have a normal conversation. Now try doing twice that much for 8 hours each day. My guess is that you probably can’t pull it off, and not surprisingly, neither can your autistic child. The simple fact is that when you have to put forth much more mental effort, it makes tasks much harder to do. Many parents often wonder why their child is so slow, and takes forever to accomplish things. The reason for this is that your P a g e | 62 child is trying to consciously process information that a normal person subconsciously handles automatically, thus it takes them several times longer to think through how to do things. As with everything else in this chapter, having described the problem it is now time to talk about what you can do to help. For starters, try not to give your child too many things to do at once. I know that having a ‘normal’ conversation doesn’t seem like multi-tasking to you, but it does to your child. The more you expect them to do at once, the harder it is going to be, and the longer it will take to do it. A good way to combat this problem is to skip trying to do things the ‘normal’ way. For example, you could try to get your child to use proper inflection, make eye contact, use the right body language, and so forth. There are plenty of therapies out there which teach just these skills. But when you try to get your child to do things ‘normally’ it takes a lot more effort on their part. While I can certainly see these skills as being useful to learn for interviews, and other occasions where presentation matters, you probably shouldn’t expect or request that your child put forth that much effort at home when it isn’t necessary. And of course the other thing you can do is be patient with your child. He is working much harder than a normal person has to, so cut them some slack when they are taking a while and going slowly. Information Processing Problems Another trait, which is common amongst autistic people, is difficulty processing sensory input. This can also lead to being overloaded as it reduces the amount of information your child can handle. An example of difficulty with processing input is dyslexia. The words are easily read, and the dyslexic person knows how to read. But the text just seems to jumble up in their head and they have difficulty processing what they see. A similar problem can exist with auditory input. When you say something, your child may have difficulty separating the sounds they hear into words. When this is combined with difficulty using and understanding words in general then it can cause problems. This is often referred to difficulty with receptive language. As anybody with dyslexia will tell you, there is no way to fix this problem. But what you can do is provide them with different inputs. For example, if you have something you want your child to do, try writing it down for them to read. This is commonly known as a chore list. They may still have difficulty with words, but at least they can take their time and read slowly, and reread multiple times if needed. There is no option to listen slowly or ‘relisten’ the same way you can reread a paper. This is why business make written schedules and budgets instead of simply verbally agreeing on things. The third problem with leads to overload is having a poor short term memory, which I myself have. It isn’t uncommon for an autistic person to have a very good long term memory, but a very poor short term memory. I can’t quite explain why this is, but I know that I generally P a g e | 63 understand something much better after I have slept on it. I guess it just takes some time for the input to be processed and stored in a way which makes sense. Generally this isn’t too much of a problem because my working memory is enough to handle most tasks, but this becomes a major problem when I am told a list of things to remember. For example, if somebody tells me to do items A, B, C, D, E, and F, then I am probably only going to remember items A, B, and maybe C. Much like sensory processing problems, the solution is to go slowly and write it down when possible. I much prefer communication by email over talking. This is partially because I can avoid the entire body language, and tone of voice stuff, but also because I can review and reread the emails to make sure that I don’t miss or forget anything. You can’t do that with a phone call, or an in person meeting. If you have to give verbal instructions then either go slowly or better yet do them one at a time once the previous step has been finished. Social Pressures Perhaps the biggest and most stress inducing problem that an autistic person faces isn’t a result of their problems, but simply having to deal with society. I will gladly point out that there are many benefits from interacting with other people. For starters you can play games with other people. You can also talk about things which interest you, and you can learn new and interesting things from other people. You can also work other people to accomplish a worthwhile task and get a good sense of accomplishment. However, while there are definitely benefits to interacting with other people, there are many downsides. And unfortunately those downsides can outweigh the benefits if they are not handled properly. The primary social problem an autistic person faces is simply dealing societal expectations. As I mentioned in my last chapter, there is an enormous societal pressure to fit into a predefined mold. If you keep up with the news you will probably hear stories of young girls becoming anorexic because they are constantly told by society that they are worthless if they aren’t skinny. As such, they suffer from anxiety because they think they aren’t good enough and wind up doing stupid things in an attempt to live up to what society wants. The same problem can be seen with autistic people, but it is more than just being skinny. Society tells us that we have to talk a certain way, walk a certain way, look a certain way, act a certain way, be interested in certain things, not do other things, and so forth. Autistic people are told that they have to make eye contact, use facial expressions, not speak in a monotone voice, not rock back and forth, not talk about things which interest us, not want to be alone and relax. We are also told that we have to play the games that the other children like, read the books that the other children read, and so forth. We are supposed to make P a g e | 64 friends, go on dates, get married, have kids, go to college, get jobs, and do everything that a normal person does because we are supposed to be normal. The sad part is that this pressure doesn’t just come from your child’s peers; the majority of it comes from the adults around him. While many adults will say, “Just be yourself; don’t let other people tell you who you should be”, they often don’t mean it. For example, why would there be social skills classes to teach autistic children how to pretend to be normal if their parents didn’t want them to blend in? Why would therapies be advertised to make autistic children ‘indistinguishable from their peers’ if their parents didn’t want their children to blend in? As much as parents like to deny it, the fact is that they want their children to be just like everybody else and fit in with society. This may be done with good intentions such as, “I just want him to be able to have fun with the other children.” But ultimately what happens is you wind up giving the child a list of things he is doing wrong, then expect him to constantly put forth effort to pretend to be somebody he isn’t. Don’t get me wrong, I am not opposed to all ‘social skills’. I am a strong proponent of teaching your child virtues such as being patient, understanding, and respectful. And if teaching your child to patiently wait his turn is considered a social skill then go ahead and teach that. Also, I must admit there are some benefits to acting normal. For example, whenever I go to interview I try to make eye contact, make small talk, and be as ‘normal’ as possible so that I don’t offend the HR person who does the screening. But acting normal is something which you can teach your child when he is older after he has developed more important skills first. You don’t need to focus on teaching your young child about making eye contact, using the proper tone of voice, and making small talk when he should be learning about more important things like being respectful, having self control, and other such tasks. So, what can you do about this and help reduce your child’s stress? As I said in the above text, the first thing you can do is stop pressuring him to act normal and be somebody he isn’t. If he wants to run around in circles, rock back and forth, line up his toys, and avoid people then go ahead and let him. Likewise if he wants to spend time reading about unusual topics like star wars, ancient Egyptians, or the interstate highway system then go ahead and let him. If he wants to avoid parties, only have 1 friend and not play sports then let him. He doesn’t have to be normal and fit in with the rest of his class to have a good life. His interests may not be typical, his behavior may not be typical, and his recreational activities may not be typical, but it is what he finds enjoyable. I am not saying that you shouldn’t introduce him to new things which may be beneficial to him. He may enjoy and benefit from trying out some sports. He may also enjoy trying some events like boy scouts, or camping, or any number of other more ‘normal’ things. I am simply saying that you shouldn’t force your child into situations which he finds uncomfortable and then put unnecessary expectations on him. If you want your child to succeed in life then he P a g e | 65 can’t be a nervous wreck because he constantly fails to live up to societies messed up expectations. The second social problem, and perhaps the one most damaging to self esteem, is bullying by peers, teachers, and parents. The poor treatment by peers is usually caused by standard human behavior. To put it simply, humans are pack animals. If given the opportunity, humans will form into packs (commonly called cliques). Once these packs have formed, the people in the group will be less then friendly towards those who are not in the group. This isn’t a normal person thing, nor an autistic person thing. Any group of people of large enough number will form cliques. So this problem will still exist even in special education schools. It is just in our human nature to group together and then gang up on the outsider. Sadly, this also doesn’t end in elementary school, or middle school, or high school, or even college. This grouping, excluding, and bullying can even occur in the workplace. The problem which occurs is that an autistic person commonly doesn’t group up when these cliques are formed. This could be due to their disinterest in groups, or it could be due to their lack of understanding the overly complex (and often ridiculous) social hoops you need to jump through in order to group properly. If the autistic person is lucky, this will lead merely to exclusion, cold shoulders, and perhaps a few malicious rumors. If the person is unlucky, then this will lead to bullies stealing his things, destroying his possessions, getting him in trouble for things he didn’t do, and even physically attacking the poor guy. The solution comes in 3 parts. For starters, you need to make an environment where obvious bullying, such as being physically attacked and having your property stolen, isn’t acceptable and is dealt with appropriately. Luckily, this doesn’t happen in the workplace because adults will get arrested and sent to jail if they beat up a coworker. Unfortunately, many schools don’t offer the same level of protection. It isn’t uncommon for physical violence to go unnoticed, unreported, and unhandled in school settings. If your child is stuck in a situation where he faces physical assault then you need to do something about it. For starters, talk to the school and make sure they enforce their anti-bullying policies. They are supposed to have them. It also pays to give your child some self defense classes. Merely knowing how to block a punch and trip an opponent who is attacking you is fairly easy to learn and can save a lot of problems. Now I must point out that there are some constraints on this. For starters, boys will occasionally get into a scuffle. You don’t need to sue the school if your 3rd grade son gets into one fight. However if your child is being terrorized, threatened, and assaulted on a routine basis, then you need to take more aggressive actions. If you do need to take action, try doing it indirectly by telling the school principle or other people in charge that they need to keep a closer eye on certain children to make sure that they aren’t beating other people up. If necessary, let the school call the offending child’s parents. Trying to directly intervene yourself P a g e | 66 in your child’s affairs is likely to do more harm than good by getting your child labeled a ‘mama’s boy’ or ‘wuss’. Your child might also face ‘soft’ bullying, such as name calling, insulting, and overall just being derogatory (more common amongst girls). This is something your child can handle himself if he is given proper bully handling training. When confronted by bullies who are trying to belittle him, your child needs to know how to verbally defend himself. There are some fun phrases that I learned for dealing with this. For starters, your child needs to tell the bully that he isn't interested in hearing their stupidity, and then tell them to go away. If the bully starts escalating it from there by mocking your child more, then your son can just fight fire with fire and make them look idiotic for even trying it. For example: Bully: Hey stupid face, what are you doing? Me: Hmm? I'm sorry, did you say something? I have my hearing aid set to filter out idiots; I think it was blocking you. Bully: What, you have an imaginary hearing aid? Me: Of course not you idiot, I was simply pointing out that your stupid, or are you too dense to realize that? Bully: I’m not stupid! You are! Me: Ok, you can tell yourself whatever makes you feel better. But do it someplace else where you’re not bothering me. I know that it seems mean, and indeed it is. But that is the point. I hate to say it but your child really has to defend them self if they’re going to get their peers to stop bullying them. It is much better to be a bit rude to people who deserve it then to allow yourself to be miserable for other's entertainment. The worst case scenario is that the other child who started this thing goes and complains to the teacher. And if the bully does that, then your child can just explain who started it. At worst, both your child and the bully would wind up in detention once or twice until the bully learns your child isn't a good target. If you are going to go this approach then I recommend practicing it first at home with some role playing. Even the best worded response isn’t going to have much effect if your child is cowering in fear. For best effect he needs to do it with an authoritative, and somewhat annoyed demeanor like, “O great, you again.” It is also important that when you teach your child some defense against bullies (whether martial defense or defense with words) you make sure he knows that bullying is not, and will not be tolerated or accepted. He can defend himself; but he should not be starting anything or else he WILL face repercussions. Autistic people may be the victim more often than P a g e | 67 they are the aggressor, but that is only because the situation works out that way most times. Since your child is human, he will have the natural instinct to bully others if he feels in the dominate position; it is only natural. You have to drill it in to your child’s head that the behavior is not acceptable, and he can defend himself, he shouldn’t be starting anything. Your child may also have problems with his peers not due to direct bullying such as attacking or insulting him, but simply just excluding your child or being snobbish towards him. For example, they won’t invite him to sit at their table, they don’t want to play games with him, or they don’t invite him to the popular parties. There is nothing you or your child can really do about this. The fact is that if a person chooses to be a snob it is their own personal choice and you really can’t do much to change their minds. You aren’t going to fix the problem by talking to the teacher, or talking to the principle, or talking to the other child’s parents. Furthermore this extends far past elementary school. It occurs in work places, colleges, and even at church events. My own grandmother still holds grudges and talks poorly about people behind their back when they don’t live up to her standards. So, this isn’t something you can get away from or avoid, it is something your child will need to learn how to deal with eventually. So, what advice would I have for your children? For starters, the last thing you want to do is try getting in good with the snobs by living up to their standards. I learned that the hard way. You can always pretend to be somebody you aren’t. You can always act different, talk different, and pretend to be a completely different person, just so you get the approval of others. And for a short time, this may work. It is often easier to create a fake persona just to be accepted than to deal with the alienation and rejection. While it may be more work, the short term benefits of being accepted by your peers can seem like it’s worth the effort. But when you pretend to be somebody you aren’t long term, it just kills you from the inside. If you learn only one thing from this book then let it be that you shouldn’t allow other people to goad you, force you, or pressure you into being somebody you aren’t. You may have problems that you need to work on, but living a lie and pretending to be something different then you are takes a terrible, terrible toll on you that is simply not sustainable. If I had to make a list of things which made my childhood so miserable, this would probably my highest rated mistake. I can assure you that I have tried blending in, I have tried to live up to other’s expectations, and all it left me was being depressed, exhausted, and near suicidal. This alone is what accounts for the majority of nervous breakdowns experienced by autistic people. You do not, ever, want to change who you are just for the acceptance of the shallow and judgmental people around you. And for the parents out there, my advice is that you need to make sure your child understands this. I don’t care how many times you need to tell them, but your children need to know that falling to peer pressure, teacher pressure, or parental pressure to be somebody they aren’t is a really bad idea. This may mean that they won’t want to go out shopping and buy P a g e | 68 fancy clothes. This may mean that they won’t want to play sports. This may mean they would rather stay home than go to parties or family reunions. This may mean that they would prefer to skip social cliques all together and not be popular in school. And this is a good thing because it is far better for them to be unpopular for the right reasons than to be popular for the wrong reasons. You may notice that I included parental pressure and teacher pressure on the list of things not to fall for. Many adults feel as though they are excused from this idea of not pressuring children into being somebody different from who they are. So let me be very clear when I say this. Whatever expectations and dreams you had for your child should not supersede who your child is. I have nothing against teaching your child what is right and wrong. But you shouldn’t try forcing him (either through therapies, parenting techniques, or anything else) to be who you want him to be if it is not who he is. I know I keep bringing this up, but I do so because it is very important. As for socializing, you can still do that even if you don’t form into the standard popularity based cliques. The vast majority of socializing I do is over the internet and I am happy with that. I play online games, I post on forums, I make friends online, and it is a great way for me to get my necessary amount of socializing. If your child wants to go out and socialize in person then that’s fine, just try to get him to socialize with peers who he can relate to. All too often parents assume that their child should be friends with any and all other children the same age. While I have no problem with being friendly and respectful towards everybody, not everyone is compatible as a friend. The reality is that your child probably isn’t like most children his age, and as such they may not get along great as friends. If you want to find some people he would get along well with then try finding people who have similar interests to him. For example, try getting your child interested in card games, board games, or table top games. Local game shops usually have D+D tournaments, Warhammer tournaments, Pokémon tournaments, or other such events which are very popular amongst the unusual and often autistic friendly crowd. Your child may also enjoy structured activities like boy scouts, or other such events. Since this is a common question for parents, I will be going into more detail later in my chapter about socializing. If you are lucky your child may find a good friend who is not obsessed with fitting into cliques and is willing to accept your child and play with him even if he is odd. I know that I had one wonderful friend who I met in second grade. He didn’t really fit in perfectly with the rest of the class, and looking back I can see that he was a bit behind socially like I was. The two of us had some differences; I liked computers, he liked sports, I was ahead academically, and he was behind. But despite the two of us having differences we were very close friends for all the years we went to school together. What made the difference is that my friend didn’t care if I P a g e | 69 was good at sports, or whether or not I fit in with the crowd. He just wanted to hang out and have fun playing games, and so did I. That was all that mattered to the both of us. Accumulated Stress The last topic to discuss in this chapter is the accumulation of stress over time. Parents may sometimes be confused when their child comes home from school and acts stressed out; as the parents look around they don’t see the problem. The house is quiet and there isn’t much around to stress out your child. But apparently your kid is stressed out over something. The problem is that stress isn’t a spur of the moment thing. It isn’t as though the stress immediately goes away once the stressful situation passes. It tends to stay with you, and build up over time. For example, when your child comes home from school stressed, he may not be upset over anything at home, or any one big event at school. He is more likely stressed out by the thousands of little tiny things that slowly increase his stress bit by bit as the day goes on. For example, the teacher was unclear in first period, so your child got confused and he didn’t know what to do. Later in gym class your child was picked last for his team and everybody laughed at his poor coordination. During lunch time he was packed into a cafeteria with 400 other loud children and an environment which made him uncomfortable. During 5th period he got stuck on how to solve a problem and got frustrated because he couldn’t figure it out. Added onto this is the constant anxiety from simply being surrounded by hundreds of people, the difficulties keeping everything organized, and all the pressures and responsibilities that the school places upon your child. And this stress isn’t just from the day at school. Your child could be stressed out about things which happened yesterday, or the day before, or the week before. He could have regret and anxiety about something which happened years prior that you wouldn’t even think about. Your child may also be dealing with the stress caused by worry and fear of the unknown. Your child is a human, and like all human beings he is capable of worrying about his future and regretting his past. As I said earlier, going from fine to meltdown can be a long process which occurs over a long period of time as stress just builds higher and higher and higher with no relief valve. The fact is that life isn’t always puppies and rainbows. There are problems and difficulties inherent with just getting through life. The more you have to put up with, the more those difficulties build up, and the more stressed out you get. I often find it strange that parents constantly try to pack their child’s life full of all sorts of things. They have school 7 hours a day, and then sports, and then music lessons, and then karate lessons, and then homework, and then the next day is just as packed, and the day after, and the day after, and the weekends too. When your child gets nervous and anxious simply from dealing with people, over packing their schedule isn’t going to help. P a g e | 70 As I feel analogies are great ways to explain information, I offer this to help you understand. Imagine you have a pool, deep enough that you couldn’t touch the bottom with your head above water. Your friend convinces you to go out and spend some time in the pool. When you get to the pool your friend gets out an inflatable chair, blows it up, and then settles into the floating chair to relax and read his book. You jump into the pool and start swimming around. At first, swimming around isn’t too bad, in fact it is even enjoyable. But as time goes on your arms start getting tired from constantly having to tread to keep your head above water. When you get tired you try to get out of the pool and your friend yanks you back in. You ask your friend why he did that and he simply tells you, “You need more exercise; this is for your own good.” Not buying that excuse, you try to get out of the pool again and your friend yanks you right back in repeatedly. Given no choice but to swim, you keep treading water and your arms get more and more tired until you start having difficulty keeping your head above water. Eventually your friend lets you get out of the pool and you collapse onto a nearby chair, exhausted from your effort. After about 30 minutes your friend decides that you’ve rested long enough, and that you need to get back into the pool and resume swimming. If you refuse, he calls you a lazy bum. He says, “I was in the pool just as long as you were and I am doing fine”, completely overlooking the fact that he had a floating chair to use. You might protest, but he will just ignore you and physically throw you into the pool anyways. Now your friend may think that he is helping you get some exercise. But in reality all he is doing is pushing you far past what you can handle and it is only a matter of time before you drown. Unfortunately many parents do something very similar to their own child without even realizing it, only to be surprised when the child has a meltdown. For example, your child hates school. It is just too much work dealing with the environment, the teachers, the students, the schoolwork and everything. And you force your child to go there for 7 hours a day. He can complain, say he hates school, and many parents will just say, “stop being lazy and deal with it.” After all, the parents went to school 7 hours a day when they were young and they did fine. Why can’t the autistic child? Plus, going to school is supposed to be good for the child. It theoretically teaches him useful skills that he will use in a career, and also exposes him to other people so he can work on his social skills. The problem is that parents fail to realize their child is lacking the metaphorical floating chair to use. While you may have been able to handle school for 7 hours each day, that doesn’t mean your child can. When you keep pushing him past what he can do it is only a matter of time before your child has behavior problems, meltdowns, or worse, a nervous breakdown. Simply put, there is just a limit as to how much your child can handle. If he is well rested, well fed, in good health, and otherwise calm then your child can probably handle more. But when your child is tired, exhausted from the previous day, sick, or otherwise not doing well then they won’t be able to handle nearly as much. You need to realize this and respect this. P a g e | 71 When your child tells you he can’t handle any more, or is having severe behavioral problems then that isn’t the time to call him lazy and punish him. That is when you realize you are probably pushing him too hard and back off a bit. So, as is the theme of this chapter, the question now becomes what do you do about this? What steps can you take to keep your child from being a nervous wreck? What can you do to reduce their stress when they get home? What can your child do to limit the amount of stress he is dealing with? What effective coping strategies can your child use when he gets stressed out? To answer that, flip the page and read the next chapter. P a g e | 72 How Do You Deal With Stress? As you have read in the previous chapters, stress is a bad thing. And if you haven’t read the previous chapters then go back and read them now; this book is supposed to be read in order. So the obvious question is now, “How do you deal with stress?” It is a fairly simple question, but to answer it properly takes an entire chapter because there are many things you and your child can do to handle the stress effectively. Keep in mind that the advice offered in the previous chapter, such as using ear muffs, is indeed still good advice. So you shouldn’t use the advice in this chapter as a substitute, but more so as additional techniques. That being said, let’s get started. Know Thyself Whichever ancient Greek philosopher first penned these words probably wasn’t thinking about autism when he wrote them. But these words are still very good advice, and perhaps the most important thing your child can do in order to handle his stress. The truth is that the journey to know one’s self is a life long journey. And that journey generally doesn’t start in depth until the person approaches the late teens, or early twenties, and begins contemplating the various meanings and implications of what they have learned. No offence to young children, but their minds aren’t wired to spend time in deep introspection. However, while your young child may not be ready to contemplate esoteric issues, he can still benefit from understanding himself and how he works on more concrete levels. The first thing a child needs to learn about himself is how determine his own stress level. Now as simple as this concept may seem, it is tricky to pull off. But, if your child can recognize when he is getting stressed out then he can take steps to remedy the situation before it turns out poorly. For example, let’s look at the scenario I showed earlier in this book while discussing harmful reactions to stress: Parent (nicely): Time to do homework Child (avoidant): I don’t want to do homework Parent (forceful): Look, I know you don’t want to do it, but you have to. Child (more avoidant): Can’t we do it later? I am really busy doing something now. Parent (threatening): Sit down and get started on your homework or else you aren’t going to be playing on the computer tomorrow. Child (defiant): Fine! I don’t want to play on the computer anyway! Parent (angry): Look, this isn’t a negotiation! Just sit down and do your homework! P a g e | 73 Child (Lashing out): I HATE YOU! *starts kicking chairs* As you can see here, this problem is caused by both the parent and the child allowing their stress levels to rise unchecked until they wind up yelling at each other. The child felt backed into a corner and reacted defensively instead of realizing he was stressed out and taking a better approach. Likewise, the parent was so intent on getting their way that they made demands, and got upset when their demands weren’t met. This led them to start threatening, and yelling at the child. If either the parent or the child in this situation had taken a second to realize that this was growing out of proportion, and just causing unnecessary stress, then they could have calmed down and found a better alternative. For example, let’s look at that same situation where the parent and child both realize they are getting stressed out and take steps to resolve the situation effectively. Parent (nicely): Time to do homework Child (avoidant): I don’t want to do homework Parent (forceful): Look, I know you don’t want to do it, but you have to. Child (realizing he is stressing): Can’t we do it later? I have had a really hard day and I don’t think I have the energy to do homework right now. I just need some time to relax. Parent (understanding and being sympathetic): Ok, I understand, why don’t you go play on your Wii till dinner, you can do homework when dinner is done. Now, do you see how much nicer that worked out? I might be a little overly optimistic about how well things turn out, but the fact is that the majority of stress related problems can be avoided if you and your child learn to tell when he is stressed out. You can then deal with the situation effectively before it grows out of hand. This, of course, applies to more than just arguing over homework. It applies to school when your child is getting stressed out from his classes. It applies to going out shopping when your child gets stressed out from all the loud noises and chaotic environment. The better your child is able to pick up on their stress, the better they will be able to use effective coping strategies while they are still calm enough to use them. So, how does your child tell when they are getting stressed out? As I mentioned in the chapter about how autistic people think, your child may not be able to easily tell what he is feeling at any given time. So the key to figuring out when he is stressed is to be aware of all the physical changes that occur. For example, here is a list of changes your child will notice as they get stressed out: 1. The thought process starts to slow down. They tend to get confused a bit easier and have a harder time thinking things through. P a g e | 74 2. The muscles tend to tense up a bit and seem twitchier. Almost as though the joints become spring loaded. 3. Your child starts breathing a little bit heavier, and his heart starts beating faster. 4. His eyes tend to widen as his pupils shrink. 5. He starts looking around more, rapidly shifting focus. 6. He starts getting short tempered, easily upset, easily frightened, anxious or displays other common defensive reactions. As your child gets more experience with identifying the signs of stress they will be able to do so more easily and consistently, but keep in mind that it does take a bit of practice. Parents can also help out by keeping an eye out for the signs of stress. If you notice your child’s eyes widen a bit and start darting around, that is a sign they are beginning to stress out and the flight response is kicking in. The child will also seem more anxious, and perhaps even a bit manic. At that point you can say things like, “You seem to be getting stressed out, perhaps we should take a break and relax a bit.” You can also help your child with recognizing the various emotions and feelings he has by talking with him when he is calm. Talk about things which make him nervous, or upset, or afraid. Let him know what the various emotions are like, what they mean, and what they may cause him to do. For example, being angry makes you want to yell and hit. Being afraid and nervous makes you want to run away and hide. The more your child knows about the various emotions, what causes them, what they feel like, and what the signs are, the better he will be able to understand what he is feeling. The next thing your child needs to know about himself is what stresses him out. As I discussed in the last chapter, there are a lot of things which can stress a person out. Your child may have problems with some of the things mentioned in the last chapter, but not all of them. They may also have problems in areas that I didn’t cover. Each person is a unique individual who will have their own sets of problems and areas of difficulty. The more your child knows about what stresses him out, the better he will be able to avoid those situations, or handle them differently. When talking about things which cause stress, it is important to point out that your child is not born knowing which things are stressful and problematic for him. Parents often assume that a child will know which situations are stressful, or overwhelming. Presumably, this is because normal people know what they are feeling, and are thus able to tell how a situation is affecting them. But as I just explained, an autistic child (especially a young one) usually does not know how a situation is affecting them. As such, your child may gladly go play in the ball pit at chuck-e-cheese despite it being a bad idea for them. All the bright lights, bells, whistle, P a g e | 75 chaotic environment, running children, and so forth is very overwhelming, and your child will likely come out of the ball pit more anxious, and wound up then when they went in. This can confuse parents because they think, ‘How can something be stressful if he enjoys doing it?’ The best explanation I can give is that just because your child enjoys doing something, doesn’t mean that it is good for them. After all, a child will gladly eat an entire bag of candy, and then throw up. As an adult, you may be aware of the stomach ache and problems associated with eating a lot of pure sugar, but since a child doesn’t know what will and will not cause them to have an adverse reaction, they will often do things that are harmful to them. It isn’t as though they are trying to sabotage themselves, they just don’t know what causes them problems, and should therefore be avoided. This is why children will eat candy to excess, stay up late, avoid nap time, eat things off the floor, and go out and play in the cold rain. Just because your child wants to do it, doesn’t mean that isn’t going to cause them problems. As such, in order for your child to effectively avoid problematic situations, they need to learn what causes them problems. Are they affected by bright lights, loud sounds, other people, chaotic environments, etc? Is it something specific, or is it a combination of several factors, etc. You the parent can help with this by trying to observe any patterns that you notice cause stress in your child. Perhaps the most effective thing you can do is teach your child to recognize his stress, and then stop every now and then to see how he is doing. It may surprise you what can cause him to stress out. For example, asking him how he is doing before and after an event. If you notice that he suddenly seems to be getting more anxious or wound up, then you have likely found a stress inducing trigger. The more your child understands what causes them problems, the better they will be able to either avoid, or address them appropriately. To give an example, consider going out shopping. In order to buy food, clothes, or almost anything, you need to go to a store and buy it. This makes being able to shop a fairly important ability. But for many autistic people (myself included) shopping can be very stressful and unpleasant. Shopping centers are often too loud, there are too many people, there are long checkout lines, and too many kids running around screaming. Knowing this helps me in several ways. For starters, I know that I have to be cautious and approach the situation differently. If I didn’t recognize and appreciate the potential for stress, then I would just go out shopping whenever I wanted something and wind up causing myself a lot of unnecessary stress. Secondly, by knowing which specific things cause me to have problems, I can properly address the situation. My solution to this problem is to go shopping at the 24 hour Wal-Mart at 11 pm Saturday nights. This gives me enough time to do my shopping and still be home before bed. The store is much less crowded and noisy that late at night, the lines are shorter, and there are no kids running around screaming. As you can see, by understanding what specifically I found P a g e | 76 difficult about shopping, I was able to find a solution that allowed me to go shopping comfortably. Had I not taken the time to evaluate the situation, and determine the causes of the problem, then I wouldn’t have been able to find an effective solution. Learning what is and is not stressful is more than just learning what to avoid. It is also what allows you to make effective plans. I should also point out that much like recognizing one’s own emotions, determining what is problematic and why is difficult for an autistic person. When I was a young child I would just start feeling sick. The stress feels almost like a knot in the stomach. I had more difficulty thinking, and I would just feel worse and worse as my stress rose. But as a young child I had no idea what was causing the feeling. I didn’t know if it was the sounds, or the lights, or the people, or the food, or what. It is going to take some time and practice for your child to figure what is bothering him and why. You might be able to help your child out by playing detective and looking for the common theme to his stress. But it will be up to him to eventually start figuring it out on his own. And lastly, your child needs to know his own limits as far as what he can handle. He has to know when a situation is going to be too much, so he can avoid the situation. There are just some times when you find yourself in a situation and you have to figure out whether or not it is worth dealing with. And if a situation is more trouble than it is worth, then you shouldn’t be in that situation. There may be some benefits to being in certain mildly stressful situations (i.e. studying for a test), but if the difficulty with the situation takes such a toll on you that it outweighs any potential benefit, then you need to just avoid the situation entirely. Recreational Activities So, now that we know we are stressed out, what can we do to lower the stress? I say, go with the obvious, i.e. recreational activities. Recreational activities are great things as they allow you to unwind, relax, and have some fun in life. They can also serve as a great way to learn more information, and expand your knowledge. They can lead to rewarding careers and potential friendships with other people who have similar hobbies. I would also argue that they are a necessity for an autistic person to function in this world. If you don’t get enough time to relax and unwind then you are just going to wind up a nervous wreck. To further elaborate on recreational activities, I feel it is important to point out the two different types. Now obviously there are more than two kinds of recreation, but I like to oversimplify. The first kind of recreational activity is the kind where you can just let your mind go blank and have fun, otherwise known as ‘down time’. These are great things which allow you to relax, and unwind after a hard day of work. They don’t provide the same level of satisfaction or fulfillment as a hobby would, but they are generally easier to do, and don’t P a g e | 77 require much effort. Examples of this include watching game shows on television. Generally you aren’t thinking very hard when you watch ‘Wheel of Fortune’, or ‘Deal or no Deal’ on TV. Other examples may include going out jogging, listening to music, relaxing in the hot tub, or watching anime. Also, as odd as it may sound to the sociable people out there, being alone is a very common way for autistic people to relax and unwind. While most people out there get lonely if left alone, your child may very much enjoy his solitude and find it relaxing. The second type of recreation is what I like to refer to as a hobby or interest. These are activities where you have to engage your mind and think of what to do. Common examples of this include most video games, arts and crafts, reading, or watching certain TV shows like Modern Marvels, etc. What most people would call ‘special interests’ or ‘preservations’ belong in this category. These are great ways to learn new things, and can eventually lead to good careers. Spending time doing these hobbies is also a great way to have a sense of purpose, and to build self esteem. After all, the longer you do something, the better you are at it, and that really leads to some confidence. I became very good at all of the video games that I played, and it gave me a nice ego boost to know that I was better than most of the other players. As far as special interests go, I know that over the years I have gathered all sorts of data about things like the Apollo missions, the space race in general, and then other space programs. I have also read a lot about robotics, in particular battle bots when I was younger. I have learned a lot about various militaries, the machines they used, and tactics on the battlefield. I have played dozens of computer games from Real Time Strategies, to First Person Shooters, to MMORPGs. And in each of these areas I have spent years learning more, playing more, getting better, and constantly improving my knowledge and skills. Now I will readily admit that some of these skills have limited purpose in ‘the real world’. For example, my exceptional phoenix piloting in the video game ‘Descent 3’ serves little purpose in getting a job. But the fact is that not every single hobby you have needs to lead to a job. Simply having hobby can lead to a good feeling when you can incorporate it into your day. I eventually wound up making my career in mechanical engineering due to my interest in mechanics, which was fostered by my ‘special interests’ in battle bots, the Apollo program, and military hardware. But even though my interest in Descent 3 and Final Fantasy 11 didn’t lead to a job, I still am glad I got to spend time (a whole lot of time) doing these as they made my life enjoyable. Like all generalizations, you can’t make clean dividing lines between a complex hobby which requires thought vs. down time where you don’t think much. Some hobbies might be somewhere in between, or go back and forth depending how you do it. But whatever your child enjoys, try to let him have multiple choices for options. Sometimes you want to do arts and crafts and draw cool pictures. Sometimes you want to play video games. Sometimes you P a g e | 78 just need to relax and unwind in front of the television. While watching game shows on TV may not lead to a good career, your child needs the down time. Perhaps the most important thing I need to mention in this section is that while spending time reading books about GPS units, or other such odd interests, may seem like a silly waste of time to you, it isn’t for your child. There may be some children who will have typical hobbies such as hanging out with friends, playing sports, or so forth. But not every child has to have those same hobbies. If you child wants to play on the sports team, and genuinely finds it enjoyable, then by all means go ahead and let them have fun. But just be aware that your child can enjoy themselves, and have fun even if they aren’t engaging in the typical normal person hobbies that society thinks of as normal. Unfortunately, many parents try to cut into their child’s recreation time and get them to play fewer games, watch less TV, spend less time with their interests and so forth. Now this may be done with good intentions like, “expanding the child’s horizons to more than just a few games” or, “getting the child to go out and socialize instead of spending all day on the computer.” And while I can understand the rationale behind these actions, they are ultimately misguided and problematic. You see, your child isn’t playing on the computer because he is a lazy bum. He is playing on the computer because it is a respite from an uncomfortable and unfriendly world. These recreational activities are not only fun for the child, they are a requirement for him to relax, unwind, and shed the stress that comes from interacting with the world. I know that I averaged about 5 hours of game time per school day when I was in high school. I was on the computer from the time I got home till the time I fell asleep. And I spent about 12 hours per day playing on the weekends. While this may seem like a lot of time wasted, I am pretty sure it is what kept me from going insane due to the stress. So while you may think that your child should probably do more productive things with their time than play video games, I can assure you that they are being very productive at reducing their stress and all the problems associated with it. You probably shouldn’t cut into your child’s recreation time without good reason. Avoiding Unnecessary Commitments So now that we have discussed the benefits of recreational activities, what else can be done to keep the stress low? Well, allow me to talk about the benefits of being flaky. I am not proposing that your child skip out on work whenever he feels like it. However, I am saying that trying to avoid unnecessary commitments is a good thing; at least it works out very well for me. You see, the truth is that I don’t know how I am going to be doing at any given time. While I can come home from work most days with enough energy to do something, I don’t always feel P a g e | 79 up to going out, or working on anything else. As such, I try to leave my afternoons and weekends free of firm promises. For example, I may make a plan to go see a movie with my friend on Saturday because I know I can always call and cancel that meeting if I need to. However, I try to avoid making commitments where I am an important part of a large group effort. For example, I wouldn’t sign up for my church’s Easter production because that would put a responsibility on me to be at the church for rehearsals, and productions. And if I don’t make it because I am not up to dealing with all those people, then everybody else in the group would suffer. The basic rule is that if I can call up and cancel the event without any big inconvenience to others, then I will go ahead and make the plans. So, I have no problem making plans to play D+D, watch a movie, or play a game online with friends. And 95% of the time I will keep my plans. However, I avoid promising to be a part of a big production where my lack or participation would be a major problem. When you can avoid unnecessary commitments, it allows you to relax, and be alone when you need to, and it also gives you less to worry about. Healthy Living The next thing you and your child can do to deal with stress is to make sure that the child is healthy. While I hope this is obvious, your child will do much better, and handle the world more effectively when he feels better. Getting a good night’s sleep is probably one of the easiest and simplest ways to improve your functioning the next day. Unfortunately, for many autistic people, getting a good night’s sleep is easier said than done. So, I figured I would give you some pointers that I have found help me get to sleep. 1. Warm Baths, especially with those little vanilla scented candles. It could just be me, but I like the vanilla scent and they really do help you to feel relaxed. 2. Stretch out just before your get into bed. This gets rid of all the tension in your muscles and helps you to relax and fall asleep. 3. Have a bed time routine. Try setting up a schedule with your child like bathe, dress in pajamas, brush teeth, stretch, story time, then sleep. You can have more or less steps depending on your routine. 4. Use some natural sleep aids. There are plenty of natural chemicals which help you to fall asleep. A good example of this would be drinking warm milk, or eating a lot of turkey. Both of which make you tired. You can also use some melatonin supplements. It is a naturally occurring chemical that your body makes to help you fall asleep at night. There really aren’t any negative side affects other then drowsiness which is sort of the idea. P a g e | 80 5. Use heavy, or weighted, blankets. I am not sure why these work, but I do know that heavy blankets always make me sleep well. The only problem is that they can make you hot, so you need to keep the temperature in mind if you go this route. The next thing you can do to help your child feel healthy is make sure that they eat food which is good for them. I am not one of those health nuts who think that you need to spend three times as much money to buy ‘organic’ food which is exactly like regular food only smaller and pest ridden. I am simply pointing out that certain foods don’t set well with some people. I myself get indigestion when I drink milk (likely due to lactose intolerance). Your child may have problems with soy, or gluten, or lactose, or any number of things. So, try to be aware of any problems your child may have with certain foods and avoid them. It also pays to try and avoid snacks that are pure sugar (like jelly beans). Those can lead to sugar highs and then the subsequent crashes as the insulin gets dumped into your system. These treats aren’t bad after a meal when you just ate some complex carbohydrates like pasta or potatoes. But for snacking purposes, try to have things like chewy granola bars (I especially like the chocolate chip ones). Those are tasty, and don’t lead to sugar crashes. Sugar crashes aren’t anything major, but they do make it hard to think clearly when you are hypoglycemic. I should also point out that eating healthy doesn’t mean that you must have an incredibly varied diet. The human body is a masterful piece of chemical processing which can break down almost anything into its base components and then reassemble it into usable chemicals for the body. In the middle ages there were entire countries who survived mainly on one food crop. So, if your child is only eating chicken nuggets, pasta, and corn then don’t sweat it. Your child can survive on just those 3 foods very well. Eating healthy is more about avoiding foods that cause you to be sick then having hundreds of different foods to eat. If you are worried about your child not getting his vitamins and minerals then just give him a vitamin supplement. What To Do When Stress Happens So, now we get to the fun part of this book, which is developing good coping strategies for stress. Under ideal circumstances, your child would never need good coping strategies because they would avoid stressful situations, and get enough recreational activities in that the stress never becomes high enough to cause a problem. Unfortunately the world does not operate under ideal circumstances. However, while perfection is elusive, that doesn’t mean that all hope is lost. Having learned the hard way what does and doesn’t work when dealing with stress, I have compiled a list of good coping strategies, and the requirements needed to make them work. P a g e | 81 The first requirement for using good coping strategies is to first recognize bad coping strategies, otherwise known as defensive reactions. As simple as this may seem, you can’t replace bad coping strategies with good coping strategies if you don’t know what to replace. For example, if your child responds to stress by getting angry and yelling then he needs to know that his angry reaction is indeed a poor coping strategy. Thus, the next time he feels angry, he knows that he shouldn’t start yelling at people and being aggressive to them, instead he should take a more productive course of action. Basically, whatever natural reaction your child has to stress, he needs to be aware of it so he can see it coming, and instead take an alternative and more effective route. The second requirement for using good coping strategies is to remain calm. You have probably heard the phrase that you must control your emotions or else your emotions will control you. For a normal person this just means that they have to control their impulses or else they will wind up in debt because they went on a shopping spree. For an autistic person, the stakes are a little bit higher. You either learn to control your emotions or you fail to function effectively in life, going from one meltdown to the next. Keep in mind that I didn’t say suppress your emotions. You can still have emotions; in fact they are a part of what makes you human. However, while you can and should have emotions, you shouldn’t allow your emotions to control your actions. There is nothing wrong with getting angry, but when you allow your anger to take over and you wind up yelling or hitting then you lose to your emotions. I wish I could give you an easy solution to controlling your emotions but unfortunately I can’t. All I can say is that it is something your child will have to do for themselves. You, as parents, can talk to them, explain the emotions to them, and tell them the importance of not allowing their emotions to take over. But ultimately it will be up to the child to make the decision to do what is difficult and not give into his emotions. It isn’t easy; in fact it is probably the most difficult thing in this book for your child to do. But unfortunately it isn’t something you can avoid. It isn’t just a temporary change either; it is a day after day decision to continually put forth the effort to control your emotions. If your child is going to be successful in life then this is the number one thing they will need to work on. The third requirement for effectively using good coping strategies is to start early. And I don’t just mean start at a young age. I mean your child needs to start using good coping strategies when he is just barely stressed out. If your son waits to use good coping strategies until he is 90% of the way to a meltdown then it is going to be hard. The emotions are much tougher to control, and the adrenaline in his system has probably ruined his ability to calm down easily. It is much better to recognize the stress when it is low and take steps to keep it low then to try and fix the problem when it is almost critical. As I do like analogies, I offer you this one to help you understand. Imagine that you are driving down a mountain road in some foreign country where you don't read the language (let’s P a g e | 82 say Saudi Arabia). The road is winding around the mountains so you can't see too far ahead; but it is a fairly clear day and the road conditions are fine. You can see a sign which says 70km/h so you get up to that speed, set the cruise control, and enjoy your trip. As you are driving along, you see a sign in Arabic. Since you don't read Arabic you have no idea what it says. You have already seen dozens of signs in Arabic, and this sign looks very similar. So you figure it is just a reminder to buckle up, or perhaps a billboard advertisement. About a mile down the road you see the sign again. Since you don't know what it says, you just ignore it and keep on driving. As you turn a corner around the mountain you see a gaping hole in the road. You are going too fast to stop in time, and the mountain pass is too narrow to give you room to maneuver. So even if you slam on the brakes, your momentum carries you forward, into the sink hole, and down the side of the mountain. Having totaled your car and landed yourself in the hospital, you would be sitting there thinking to yourself, "There is no way I could have avoided that. I wasn't doing anything wrong. I was following the speed limits, and driving safely." But all the Saudi people are annoyed at you. You just ran your car right off a cliff for no reason and they had to send out rescue helicopters and everything. You may say, "There was no way I could have avoided that." But the Saudis are thinking, "Of course he could have avoided that, there were multiple signs up which read: Warning! Road washed out due to landslide, take alternate route." The fact is that if you read the warning signs, and understood what they meant, you could have easily avoided the problem. But since you didn't understand the signs and take an alternative route when you should have, you wound up causing a big problem which you didn't see coming until it was too late. Likewise, your son may often find himself in a similar situation. He is getting into an unfriendly environment, and doing things which inevitably lead to him getting stressed out. If he recognizes the signs of building stress and takes appropriate measures early then the problem can be avoided. But if he misses the signs of stress and keeps on going then he will inevitably become too stressed out to think properly. If you will recall the lovely chart from two chapters ago: the more stressed out a child is, the more difficulty they have with thinking calmly and rationally, and the more difficult it becomes for them to employ good coping strategies. Once he is too stressed out, he can become angry, defiant, and lash out. The problem is that by the time he is so angry he is lashing out then it really is too late to stop. Even if your son slams on the metaphorical brakes, his momentum (rampaging emotions) still caries him over the edge and he winds up hitting people or doing other stupid things. If you are going to have any luck in avoiding this situation then you need to address the problem when it is still addressable. Neither you nor your child should wait till he is in meltdown mode before you start using good coping strategies. P a g e | 83 The fourth requirement for good coping strategies to be effective is that the people around him have to allow the coping strategies to happen. Unfortunately, parents and teachers will often sabotage coping strategies without realizing it. When the child complains about the sound and asks for it to be turned down, he is told to get over it and quit complaining. When the child needs to take a break and just go to the bathroom for a few minutes to avoid the situation, he is often told that he cannot leave the classroom. If the child spaces out for a few minutes to take his mind off the subject then he is constantly interrupted as the adult keeps trying to keep him ‘on task’. The fact is that if the parents and teachers don’t listen to the child when he asks for help, and don’t allow him to use good coping strategies then they won’t work and the child will just get more stressed out. Now that we have covered the basics, let’s talk about what coping strategies your child can use. Since these are coping strategies for the child, you need to sit down with your son and go through this with him. So, here is my advice for your child: When you feel yourself getting stressed out, take a break, relax, and then approach the problem differently. As simple as that may sound, it works. For example, when I notice that I am getting confused, and my thought processes is slowing down, that is my signal that I am getting too stressed out to function properly. At that time, I take a break, and walk out to the drinking fountain, or perhaps the bathroom. To anybody watching, it just looks like I am taking a break to use the restroom and nothing else. Another technique I use is to just zone out and stare off into space and let my mind wander for a while. This is similar to getting a drink, but I don’t have to leave my desk. This gives me a few minutes to clear my head, take a few deep breaths and relax. When I get back to work, I can approach the problem from a different angle. Perhaps I can go back and review what I have done thus far to see if there are any problems there. Perhaps I should ask somebody else for input. Perhaps I should consider a different strategy to tackle the problem. Perhaps I should just put the problem off till later and work on something else. The second coping method is to avoid environments when they become too problematic. For example, if I walk into a shopping mall and it is more crowded and chaotic then I would like, I usually leave. Unless what I want to buy is very important to have right now, it is usually better to simply delay my trip and try to come back later when the store is less crowded. Likewise, if the environment that I am in becomes too noisy, I usually leave and go someplace else. For example, when I was in college I preferred to do my work in the engineering lounge because it had a nice fireplace and I liked the heat. But when the engineering lounge became too loud, I simply packed up and moved to the library. When an environment is too chaotic and too noisy to allow you to function properly, then it is better to leave. You aren’t going to accomplish anything in that environment anyways; so you might as well not have to put up with the stress that comes with it. P a g e | 84 If there is something which prevents you from avoiding a chaotic and unpleasant environment entirely (such as being stuck in class) then I would suggest trying to avoid the chaotic portions. When things get too out of hand, that is a good time to suddenly need to use the bathroom. If the environment you are stuck in is consistently chaotic and unpleasant then you need to talk to whoever is in charge and have them try calming the environment down. Or you need to get yourself excused on a more permanent basis. For example, it is very common for autistic children to dislike gym class, recess, or other unorganized and loud environments. Allow me to assure you that your child will grow up just fine in life if he is allowed to skip those unpleasant environments and instead go to the library where he can read some books, get some tutoring, or better yet play on his game boy and get some relaxation in. The third coping strategy is to tell somebody in charge what your problem is if you can’t fix it yourself. It is always a good idea to try and think of a solution to the problem yourself. But if you can’t come up with a viable solution, feel free to tell somebody else about the problem and see if they can help solve it. For your child this may mean asking for help when he cannot solve a math problem that is frustrating him. It could be that somebody is picking on him and he wants them to stop. It could be that the music is too loud and he wants it turned down. The general idea here is that if something is going to cause a problem then it needs to be taken care of, either by you or by somebody else. Trying to ignore an annoyance may work for a short time, but if it is a problem which needs to be solved, or a long term nuisance, then you need to get it taken care of. If you take the advice in this book of limiting stress, and also recognizing it and dealing with it early and effectively, then your stress should never get too high to cause significant problems. But as I said before, unexpected problems do occur. Which bring me to my fourth coping strategy: have a back-up plan. As for a good back up plan, I recommend having an escape system set up, followed by a nice relaxing retreat. When you get too overwhelmed, the best thing you can do is retreat to a calm, comfortable, and quiet space where you can relax and let the stress dissolve. As far as an escape system, you just need some reasonable reason why you need to leave suddenly and not return for a while. The system I have used at college and work is to feign sickness, and tell my professor/boss that I am suddenly feeling very nauseous and need to go home and sleep it off. Most people don’t question this and it gives me the rest of the day off. The next day you can come back to work and just say, “Sorry about leaving suddenly, I think my breakfast was spoiled so I got some food poisoning.” This explains why you had to leave, and also gives a plausible reason why you are fine to work the next day without people fearing contamination of germs. I only have to resort to this method maybe once or twice a year, so it doesn’t seem like anything out of the ordinary. After all, it isn’t uncommon for people to get sick twice a year. Unfortunately, during my school years I wasn’t allowed a P a g e | 85 retreat because it was school policy to treat the students like inmates and ban them from moving freely. As such I just had meltdowns in class (not very fun). If your child goes to school, then try getting them a pass to a quiet place where they can relax when they need to. Even getting to go to the nurse’s office and skip one class can be enough. As for the quiet spot you are retreating to, try to set it up in advanced. You don’t have to do a lot of work; all you need to do is include some pillows, maybe a blanket, and something that relaxes your child such as a good book or a CD player. Also some snacks wouldn’t hurt. The most common place to set up as a quiet spot is your own bedroom since you can arrange that however you like. But other options include a closet, or spare room. When using this with your child, you will want to get them involved in the process of setting up the space. Ask them what they like in their quiet spot, what snacks would they like, etc. It is important to get them to understand the purpose of setting up this area. This spot isn’t the place you are sending them because they are bad, or because you are angry. This spot is merely supposed to help them relax and get rid of stress. This shouldn’t be something you try setting up when your child is on the verge of a meltdown. For example, make an agreement with your son that when he is feeling very stressed out, overwhelmed, and emotional he should retreat to his room, and play on his Wii to help him relax. Then, the next time you find yourself with a child who is becoming frustrated, overwhelmed, and beginning to cry or scream, you have a good plan set in place already to reduce the stress. Please believe me when I say that it is much better for your child to have a safe place to retreat to and relax then have to have your child meltdown and make a big scene or attack people. Often times, the quiet spot you have doesn’t need to be anything fancy. Having a nice retreat to set up at home is a good idea; but sometimes just getting away from the environment for a few minutes can be enough. Let your child know that if he needs a break it is better to take a trip to the bathroom, or the drinking fountain, or simply just zone out for a few minutes. When you’re getting stressed out, anything which allows you a chance to unwind in a safe manner is better than doing nothing and getting stressed out from it. The last effective coping strategy I have found is to unload stress in a safe manner. As some parents may have noticed, once a child has a meltdown and cries for a few hours they tend to feel a bit better. This is because letting it all out and crying is a good way to unload stress. Other options include smacking something around (punching bag or other sturdy object recommended), or breaking things. Sometimes just getting a hammer and beating on an old broken appliance repeatedly is very therapeutic. Many parents are of the opinion that any signs of aggression are a bad thing and thus must be suppressed at all times. Unfortunately when you just bottle up your aggression and never let it out it only gets worse as time goes on. Having a safe and non harmful way to get your feelings out is definitely a good option. P a g e | 86 Effective Planning As I discussed in the last chapter, having your plans suddenly fail isn’t a very good thing. It makes you feel anxious and lost. So, what do you do when this happens? Well, as I just discussed in the last section, take a break. Take some deep breaths, relax a bit, and then make a new plan. By updating and modifying your plan to account for unexpected changes you can get back on track, even if that track is different than the one you were just on. Unfortunately, I can’t go into incredible depth about how to make plans for each and every situation that you may face because there is an infinite amount of situations, but I can offer some basic pointers. 1. Have some built in adaptability in your plans. If A happens, then you handle it differently than if B happens. Basically just like programming, you should have some if, then statements in your plans. 2. Don’t have your plans focus on the small stuff. For example, my plan for doing math homework might start off with me getting a pencil. But my plan works fine with any pencil, either a number 2, or a mechanical pencil, one from the drawer, or one from my own bag. The pencil I use doesn’t really matter, so long as it is a pencil. Likewise when making your plans try to keep them more about the important things and don’t worry too much about the small details like what pencil you use, or what cup you drink from, etc. 3. Have your plans be more detailed about things which are happening sooner and less detailed about things happening later. For example, when you’re arriving home from school you can make a plan like: play on computer till dinner, eat dinner, do homework, watch TV, take bath, fall asleep. But you don’t need to plan out next weekend in such detail. You can make some rough plans like what you want to do that weekend, but leave the detailed scheduling till later so you can have better information when you make that plan. 4. Update your plans often. You shouldn’t just wait till you are having a problem to update your plans. Try updating your plans every hour or so. Sometimes all you need to do is just verify that your current plan is going fine and then plan out the next hour in a bit more detail. Sometimes you may need to adjust your plan to account for some new information. If tomorrow’s meeting is canceled that requires you to change your plan for tomorrow. Just try to take a minute every now and then to zone out and get your plans in order. 5. Be aware of likely disturbances to your plan and prepare accordingly. For example, it is fairly common for people to arrive late, especially if they have to travel a long distance. P a g e | 87 Be aware that you may not gather at the time indicated in your plan. Likewise, other common failures in your plan are due to other people not doing what they said they would do. While this is unfortunate you need to expect this sort of thing and have a back-up plan should somebody fail to live up to their promise. The good news is that as you get older you get more comfortable making plans and thus can make more detailed and effective plans very quickly, in order to adjust to the flow of life. You also learn from the failures of previous plans what does and does not work. So generally by adulthood, most autistic people wind up with thousands of premade plans, or scripts, that they can pick from then modify and combine into a new plan for the rest of the day. Each of these plans may have hundreds of different if, then turns breaking off into hundreds of different scenarios, each of which having its own plan. The bad news is that a young child has no experience making these plans. So, you parents will probably need to help them when making their own plans. As I discussed in the previous chapter, social stories are a great way to introduce effective planning. They start out by teaching the basics of the ‘if, then’ planning setup. For example, if the other child does ABC, then your child should do XYZ. If your son is feeling A, then he should do B, and so forth. You can also help your child with planning by talking about how he could handle certain situations. For example, if he is going to the park, ask him what he would do if scenario A happens. You can then offer your suggestion of, “If scenario A happened to me, I would do ABC because of XYZ. Perhaps you should do that too.” If you notice that your child has difficulty with getting stuck on non critical things, then you may want to talk with them and point out that things can be done more than one way. For example, if your child always wants to use the same pen when doing his homework it is likely because it is part of his plan. Normally this isn’t a problem; just let him keep using the pen. But if it becomes a problem (like the pen gets broken or runs out of ink), then take this opportunity to talk with your child about substitutions in the plan. Talk with him and tell him that while it is fine for him to have a plan, he can’t allow that plan to hurt him and cause him problems. As such, he needs to change the plan by accepting more than just one pen. Discuss the benefits of being flexible, such as being able to finish the work quickly and go play on his computer. As the child grows older, and begins developing independence, you can no longer tell them what to do in certain scenarios. They probably would see your attempts to make plans for them as an intrusion into their private lives. And this is a good thing. There is nothing wrong with your child developing independence. He is going to have to make his own plans some day, so he needs to start making them on his own while he is still living at home and thus has a safety net to fall back on. This may mean that he will make poor plans for himself (such as procrastinating till the last possible moment), and as such he will feel rushed and fail. But that is part of the learning process. He is going to have to fail a few times on his own before he P a g e | 88 can succeed. So while I can understand the parental instinct to make everything perfect, you have to let your child make his own decisions and fail. The other option is to make all his plans for him and then watch him fail when he tries to move out and become independent with no idea how to make his own decisions wisely by himself. It is better for him to learn from failures while his failures can still be easily handled. What To Do When Coping Strategies Fail Inevitably, there will be times when even the best made coping strategies will fail. You can work very hard with your child about developing self control and handling the situation well. You can teach your child good coping mechanisms, and your child can put forth a lot of effort to handling things correctly. But that doesn’t prevent all problems from happening, and eventually you may wind up with a meltdown. So, what should you do when the meltdowns happen? Perhaps the most important thing I can tell you is not to beat yourself up when things go wrong and your child has a meltdown. It isn’t your fault for poor parenting, and you shouldn’t beat yourself up. I think a good analogy would be like comparing meltdowns to being sick (as in having the flu). There are things which you can do that will increase your child's likelihood of getting the flu. For example, dunking them into ice cold water, or having them hang around other sick children is a good way to get your child sick. There are also things which you can do to reduce their chances of getting sick such as making sure they get enough sleep, getting them good food, and having them wash their hands. But ultimately, even if you reduce their chances to get sick, and do everything you can to keep them healthy, children will acquire the flu eventually. Getting sick is just a result of being around other people in a world full of germs. You can’t prevent sickness completely; all you can do is reduce the frequency and severity of the illness. Likewise, just as dunking your child into ice water would probably get them sick, putting your child in an environment that is too chaotic, loud, and crowded isn't a good idea. That's just asking for a meltdown. Similarly, just as washing a child's hands will reduce the chances of them getting sick, there are things you can do to reduce the chances of a meltdown. Giving your child plenty of time to relax, unwind, and do things that they enjoy will greatly reduce their stress. But ultimately, even if you reduce their chances of having a meltdown, and do everything you can to handle the stress; your child will eventually have a meltdown. Having a meltdown is just a result of being around other people in a chaotic world. You can’t prevent meltdowns completely; all you can do is reduce the frequency and severity. Getting sick does not reflect poor parenting, nor willful problem making on the part of the child. It is just part of life that you have to accept. Likewise, meltdowns are not caused by P a g e | 89 poor parenting, nor are they the result of the child intentionally creating a problem. It is just part of being autistic, and you just have to accept that they will happen; all you can do is work to reduce the frequency. Over time, your child will develop a better immune system and become sick less often. Likewise, with time and patience your child will learn proper coping skills, and have enough awareness to feel the stress rising and remain calm long enough to avoid the situation, and get to a quiet retreat where they can let out their stress safely. When a child does get sick, beating yourself up and thinking you’re a bad parent because you didn’t prevent it and cant immediately cure it isn’t going to help. You just need to accept that they have gotten sick, and go from there. Get them some medicine, put them to bed, and just wait until the child is feeling better. There isn’t anything you can do to end the sickness; all you can do is wait until it is over. Likewise, don’t beat yourself up when your child has a meltdown. Just get them their metaphorical medicine (a calm retreat) and wait for it to be over. After the meltdown has ended, and you have given your child enough time to calm down and get all the anxiety out of his system, try to sit down with him and work out what went wrong. Was there some stressful situation that he couldn’t get away from? Was it something he was worried about? You basically want to let the child know that you aren’t mad at them; you just want to find out what caused the problem so that you can prevent it from happening again. Keep in mind that your child may not be an excellent source of information about what went wrong. He may not know himself what the problem is. And even if he does know, he may not be able to articulate an answer. But at least talking with him and letting him know that you are looking for a solution is better than nothing. Your child doesn’t enjoy melting down any more then you do. And he isn’t freaking out and causing problems just because he is a troublemaker who is in need of discipline. Trying to help him figure out what went wrong, and how to solve it, is the best thing you can do for both of you. Be Patient This last thing you can do to handle stress is to be patient with your child. Some of these coping methods, such as giving your child more recreational time and setting up a quiet retreat, are fairly simple and can be done right away. Other coping methods, like your child learning about himself and what triggers his problems, can take years. Your child is not born with good coping methods built into him. He isn’t going to magically know how to recognize and handle his stress after one discussion with you. It will be a long process. While he is learning how to effectively implement these coping strategies you need to be patient and supportive. Your child doesn’t like stress, and the problems caused by stress, any more then you do. He just needs some time, and hopefully patient guidance to help him out. P a g e | 90 So How Does This All Come Together? Now that I have talked about stress, and so forth, I feel the need to bring it all together and explain it in a way which makes sense. All the information in the book thus far has laid the ground work of understanding, and I am going to use that foundation to explain how everything ties together. Please keep in mind that what I am describing here is only a partial description of what is actually happening. Life is far too complex, and multifaceted, to be described in one chapter. As such, I cannot give a completely accurate picture of what is really going on. The best I can do is offer analogies, and examples; but hopefully this will be sufficient to help you understand your child better. Situational Difficulty When trying to understand your child, you need to realize that every situation has what I like to refer to as a ‘difficulty level’. This ‘difficulty level’ is the combination of all the things which are causing your child to have problems. I spent an entire chapter listing some of the things which can cause your child problems; loud sounds, chaotic and overwhelming environments, peer pressure, social expectations, anxiety about the unknown, stress, and so forth. Every situation is different, and as such, each situation will have its own unique level of difficulty. Likewise, each child is unique, and as such different circumstances will cause varying levels of difficulty depending on the person. For example, let’s look at eating lunch in the school cafeteria. The school cafeteria is a loud, chaotic, bright, uncomfortable environment; so let’s start the ‘difficulty level’ at 2 just due to sensory problems. Added onto that, your child has to navigate the problems regarding proper socializing. If your child gets to eat alone and nobody bothers him then this is easy. If he has to sit with other people and socialize then that increases the difficulty. So let’s add another point and bring the difficulty to 3. In addition to that, your child may be worried about something later on in the day, perhaps a math test, or uncertainty due to deviation in the schedule; and that takes the difficulty level to 4. Your child might also be frustrated over something which happened earlier in the day and be mad at themselves; thus the difficulty goes up to 5. There are also other things which can make the situation difficult. Perhaps somebody at the lunch table is being mean to him. Perhaps his favorite toy recently went missing. This all adds up to create a total ‘difficulty level’ for the situation. By comparison, let’s look at being home and studying for a test. In this situation, there are fewer sensory problems, so that doesn’t create much of a problem. But at the same time there is more difficulty with parental and teacher expectations. You really want your child to do well, and the teacher also emphasizes the importance of doing well, so your child is very P a g e | 91 worried about memorizing all this information so he can do well on the test. Likewise, while there may not be much difficulty due to socializing when studying for a test, your child may be having difficulty with all the information. As mentioned earlier, short term memory problems and information processing problems can make it difficult for an autistic person to study, thus increasing the difficulty level of the situation. As you can see, having lunch in the school cafeteria is very different from studying for a test at home. And as such each situation will be difficult for different reasons. But the underlying idea is that each situation is difficult in some way; and this difficulty is due to all the individual problems your child is facing which come together and pile up on top of each other. This difficulty level will also vary with regards to the child. For example, somebody who is very sensitive to sounds will have more difficulty in a loud environment when compared to somebody who doesn’t have sensitive hearing. Likewise, one child may have more problems socializing than another child, and as such, the difficulty associated with the socializing will be different. A situation which is a difficulty of 4 for one child may be a difficulty of 9 for a different child. And when the situation changes around, and different problems come into play, the situation may reverse. The child who had a difficulty level of 9 at the cafeteria may have a difficulty level of 4 while studying at home for a test. And another child may have the exact opposite situation. The next thing you need to understand is that your child’s stress will add to the difficulty level. For example, when you child is fine, relaxed, and happy, then their stress level doesn’t add onto the situation’s difficulty. By comparison if your child is very stressed out, anxious, and overwhelmed, then it greatly increases the difficulty of the situation. What may only be a difficulty level of 4 when your child is relaxed can be a difficulty level of 9 when they are very stressed out and overwhelmed. This is why I recommend having a nice quiet retreat available for when you become too stressed out. It lowers the difficulty level of the situation to compensate for the higher difficulty caused by stress. It is important to point out that your child isn’t actually tallying things up and keeping a numerical value in their head for the ‘difficulty level’ of the situation. I don’t walk into a room and say to myself, “Hmm, this situation seems like a 4.89 on the problem-o-meter. O wait, there is somebody I don’t know. I think I will revise that to a 5.13.” I just tend to find certain situations more difficult than others based on all the various problems that combine to make the situation problematic. Your child is probably the same way. He doesn’t have an exact numerical ‘difficulty level’ for the situations. In fact, your child may not have any idea at all how stressful or problematic a situation is. As I mentioned last chapter, figuring out what causes you stress, and how you are feeling, is not something that comes naturally to autistic people. Once your child gets to know himself more, he will be better able to understand that certain situations stress him out more than others. He will notice that some situations make P a g e | 92 him more nervous, while others don’t cause him nearly as many problems. Over time, he will be able to connect the dots and determine which situations cause him to have problems. He will also learn what it is about that situation which is problematic. But until he has developed these skills, he won’t automatically know what the problem is, let alone how to fix it. With practice and patience, your child will make progress in this area, but it isn’t an easy thing to do. Handling The Difficulty So, that explains the difficulty of the situation, but there is another side to this coin. You see, when a situation is difficult, your child has to handle that difficulty. And in order to handle a situation, your child has to put some ‘effort’ into it. Now, when I say ‘effort’, I am not referring to physical strength, but more so ‘mental effort’. To help you understand what I mean by ‘mental effort’, think back to the last time you took a really hard test. Perhaps it was your math final, or perhaps it was your SATs, or ACTs. Just think of something that required a lot of concentration for several hours, and was fairly difficult. Now think of how you felt after you finished the test. Did you feel relaxed and rejuvenated, or did you feel worn out and exhausted from your effort? Odds are that after a test lasting for a couple hours, you felt drained. Physically, you were fine; you were just sitting at a desk for a couple hours. But doing the test took a lot of mental effort to do, and as such left you exhausted. In the same way, putting up with all the difficulties that life brings takes a good bit of ‘mental effort’ from your child. And as you may have experienced after you finished your test, there is a limit to how much ‘mental effort’ a person can put forth before they get worn out and run out of energy. The total amount of ‘mental effort’ that your child can put forth before they run out of energy is known as their endurance, or perseverance. It is important to point out that this ‘mental effort’ isn’t the same thing as will power or motivation. You can be very motivated to do something, and have a very strong will, but ultimately there is a still a limit to how much you can handle before you just can’t cope any more. And no amount of will power or determination will allow you to keep going once you are out of energy. The best analogy to describe this would be to compare it to running. When a person runs, their body uses up energy. How far, and how fast, a person can run before they deplete their reserves depends on how much stamina they have, but eventually there is a limit. The faster a person runs, the sooner their stamina gets depleted. For example, somebody jogging might be able to last a long time without a problem. Somebody running would run out of energy sooner, and somebody sprinting would tire out the fastest. Likewise, when your child is in a very difficult situation, they may be able to handle it, but only for a short period of time. Conversely, they may be fine handling themselves in a less problematic situation for several hours before they run out of energy. I can’t give you an exact formula to determine what your P a g e | 93 child can handle, and for how long, because it depends on the child and the situation. As I stated before, there aren’t any real numbers involved in this process. These numbers are just convenient ways to explain what is going on with your child. Perseverance, like all virtues, is something your child will have to develop for themselves over time. It is just one of those things which come with maturity. You really can’t force the virtue of perseverance on your child any more then you can make him jump 10 feet in the air. To extend the running analogy, consider gaining endurance like training for a marathon. When a person trains to run a marathon, they work on increasing their physical endurance. As such, they will increase of both their top speed, and the total distance they can travel. For example, somebody who just started training may only be able to run at 5 miles per hour; and they would get worn out after only 2 miles. Over time, their stamina would increase, so they would be able to run 8 miles per hour, and last 10 miles before they get worn out. After a long time training, they will eventually be able to run the full 26 miles of the marathon at 10 miles per hour. In the same way, as your child grows up he will be able to handle more difficult situations, and also handle them for longer. For example, at age 4 your child might be able to handle something with a difficulty level of 5 for an hour or so. At age 8 they might be able to handle a difficulty of 8 for a few hours. And as time goes on, they gain more maturity and endurance, thus allowing them to handle more difficult situations for a longer period of time. Also, as they grow up and become more mature, they will be better able to use good stress management techniques, and thus reduce the amount of stress that they are under. But it takes a good bit of time (and A LOT of work) to develop this level of endurance; it isn’t something that can be acquired overnight just by wishing it so. In all these situations, there is a limit to the amount of endurance that a person has. And once that energy has been depleted, it takes time to gain it back. Just as a runner has to take a break and rest between his races, an autistic person also has to rest, and recuperate to regain their energy. Even if a person has incredible endurance, and can run a marathon, that doesn’t mean they can run a marathon twice a day every day. Working very hard and using up all of your energy is very draining and can take quite a while to recover from. So How Does This All Come Together? All this talk of stress, coping with stress, endurance, and what not is nice. But ultimately, we now come back to the original question of this chapter. And answering that question is what this section is all about. I encourage you to read this section carefully because it is a very important point to understand. If necessary, read it twice. In fact, read it twice even if it isn’t necessary. So without further ado, here is the main thesis for this section: Difficult P a g e | 94 situations will obviously be difficult for your child to deal with. But they do not automatically cause stress and anxiety. An important point to understand is that there is a difference between a difficult situation and the emotional response of becoming anxious and overwhelmed. Difficult situations can certainly cause stress, but only if they exceed the child’s ability to cope. As long as your child has enough ‘mental energy’ or coping ability to handle the situation, then they will be able to cope without getting stressed. In other words, your child’s stress level doesn’t start to rise until the situation becomes more difficult than they can handle. For example, let’s look at an example of a typical 5 year old child. This child can handle a situational ‘difficulty level’ of 5 for approximately 4 hours before they would get overwhelmed and have problems. This means that situations which are more difficult than your child can handle (I.E. difficulty of 6) will cause your child to become anxious, overwhelmed, and so forth. This also means that if your child is put in an uncomfortable environment (I.E. difficulty level of 5) then they could probably handle it for roughly 4 hours. But after about 4 hours, they would run out of energy, and would no longer be able to cope with the situation. In either case, the situation becomes more difficult than they can handle. And when this occurs, it creates stress. The next thing to understand is that the more the situational difficulty exceeds the child’s ability to cope, the faster the child gets stressed out. For example, if you corner your child (who is sensitive to loud sounds) and then yell loudly at him them that may be a difficulty level of 15. If your child is young then their ability to cope might only be a 5. Since 15 is larger than 5 by a good margin, your child’s stress will build very rapidly, and it your child will be in meltdown mode in very short order. Conversely, if your child is in an unpleasant school environment (difficulty of 6) and their coping ability at the time is 5, then they won’t get stressed out too quickly. They may slowly get more stressed out as time goes on, but it won’t be a quick or explosive rise in stress. This may explain the situation some parents find themselves in where their autistic child seems to have a runaway reaction to stress. Using the school example, if the difficulty starts out at 6, and your child’s ability to cope is at 5, then your child will slowly get stressed out (because 6 > 5). As they get stressed out, they start becoming anxious. Being anxious causes them to be more nervous, have more difficulties, and thus the difficulty of the situation rises to a 7. When this happens, the gap between the ‘difficulty level’ and your child’s coping ability will widen (because 7-5 > 6-5). Thus they get stressed out even quicker, and the difficulty level rises even faster. This sets up a feedback loop where more stress leads to more difficulty which leads to more stress. This is why going from calm and relaxed to mildly stressed can take a few hours, while going from mildly stressed to very stressed can take only a few minutes, and going from very stressed to meltdown can take only a few seconds. P a g e | 95 If you have ever observed your child come home from school completely exhausted, run down, and stressed out then you have observed this in action. A typical middle school child might be able to handle a difficulty level of 8 for roughly 7 hours. But when at school, the situational difficulty will vary. Homeroom may not be bad, but gym class can be very problematic and have a difficulty of 10. Since 10 is more then 8, your child won’t be able to handle it and it will stress him out a bit. When gym class is over, the difficulty will drop back down below 8, but the stress your child gained during gym will stay with him. As the day goes on, the situational difficulty peaks above 8 several more times. Perhaps in the lunch room, and again in the hall ways, and then again when his fellow class mates are bullying him. And each time this happens, your child gets more stressed out, and he starts having more and more problems. And so, by the time school ends your child is stressed out, on edge, and has exhausted all their energy from having to deal with school all day long. At this point, they are operating mainly on emergency energy reserves, just trying to last until school gets out. Once they run out of energy, small things which normally don’t cause problems can suddenly become very problematic. For example, when your child is well rested, and ready to start a new day, then small inconveniences like slightly uncomfortable clothes, or a slight change in routine, really don’t bother him that much. To put it simply, this small inconvenience may cause a ‘difficulty level’ of 1. And when your child is well rested, and feeling good, they could easily handle the issue because they have lots of spare energy. But after a hard day, their energy levels are severely depleted, and they have no longer have any spare energy left to deal with this. Even small insignificant problems can cause lots of stress and anxiety when you have no ability to cope. A difficulty level of 1 isn’t that bad, until you have no energy, and your coping ability is at 0. Most parents have noticed this at one time or another. After the child has had a particularly hard time, and is worn out, they will often get upset and have problems with insignificant things. Changing into pajamas is almost never a problem, but for some reason, the pajamas are far too itchy and uncomfortable that night. Brushing teeth becomes a huge fight, the child can’t fall asleep, and everything causes him to have problems. He gets upset over the smallest things, and gets frustrated at things he normally can deal with. This isn’t always because the problem your child facing is insurmountable. It may often be very easy to solve. But when you have no energy left to handle it, small things can become big problems. The reality is that this combination of difficult circumstances, stress, problems, and coping isn’t something specific to autism. This is just how everybody (both normal and autistic) functions. Everybody has problems and difficulties that they have to deal with on a day to day basis. There are problems at work; there is pressure to keep on schedule; you have errands to run and don’t have enough time; etc. And everybody has to cope with the problems that life brings them. Most people can cope with the problems well enough, and as such they don’t get P a g e | 96 overwhelmed and have major issues. But occasionally, things will be more difficult than they can handle, and it will create some stress. If you have ever had a ‘long day’ or a ‘hard day’ at work, then you know what I mean. You get tired, you get worn down, you run out of energy, and as a result, you get stressed out a bit. Since you are stressed out, you might get a little bit short, easily agitated, or punchy. It isn’t as though you are trying to cause problems; you are just reacting to the stress of being overworked, and overwhelmed. This is exactly what your child is going through, except that they have A LOT more stress and difficulties in their life than a normal person does. Think about how you feel after a long hard day at work, and then multiply that about 10 fold. And then imagine every single day being that hard. And then imagine being a young child who hasn’t yet had the time to mature, gain perseverance, and learn good coping techniques. If you were in the same position as your child you would also be displaying some problems as a result of the stress. It isn’t as though you would intentionally be causing problems; it would just be an unavoidable result of being too stressed out all the time. What Can Be Done About This? So, the obvious question is what to do about this. And that is what I talked about in the previous chapters. You see, every coping strategy, stress management technique, and bit of advice I gave was all in an attempt to solve this problem. For example, lowering the noise and reducing the chaos in an environment can reduce the difficulty, thus making it easier to handle. Helping your child to deal with uncertainty can lower their stress and lower the difficulty. Teaching your child to not fall prey to social pressures, and thus suffer anxiety will lower the difficulty. Learning good stress management techniques (such as taking a break) will help to keep things from getting out of hand, and also lower the difficulty. When you do everything possible to lower the difficulty, your child has to expend less energy in order to get through the day. This means that he can handle the situation easier, have more energy left over, and generally deal with life much better. In the same way, you can also help by realizing that your child has a limited amount of effort that they can put forth before they run dry. Giving your child lots of time to be by themselves, relax, unwind, and enjoy their hobbies serves not only to reduce their work load, but also allows him time to rest and recuperate his energy so that he can go out and handle another day. Limiting the amount of work that your child has to put into life, and giving them more time to relax isn’t going to make your child lazy. It is going to make them sane. I can tell you right now that if I wasn’t given the opportunity to stay home, and be by myself for long periods of time then I probably wouldn’t be nearly as functional as I am now. P a g e | 97 To help you understand what I am talking about, let’s look at the example of how I live my life. Specifically, let’s look at the routine that I used when I was working. As you can see, my schedule was designed to keep things as calm and un-stressful as possible. I gave myself ample time to do things so I wasn’t rushed, I avoided problems, and I scheduled in plenty of down time to unwind and relax. For the details, let’s take a look below: When I was working, I had to show up at 8 am. So I started my day by having my alarm go off at 6:45. It wasn’t one of those loud annoying alarms, but a CD player that played my own custom made CD. It is just some nice instrumental that starts of quietly, and slowly gets louder and louder over the course of a few minutes. Overall, it was a very gentle way to wake up. About 7 AM, I would be awake enough to get up and go shower. Showering, and dressing usually took me about 20 minutes, so by 7:20, I was ready to go. But I didn’t need to leave my house until 7:40 in order to be on time. This left me 20 minutes to do whatever I wanted in the morning. If I was running late, then it was just buffer time. If I was on schedule, then it was an opportunity to read the news before I left for work. I know this information seems trivial, but the point I am trying to make is that my morning routine was set up so that I didn’t get rushed or pressured. I wasn’t frantically trying to get things ready for work, and rush trying to do 2 things at once. I planned out my morning to be as calm, relaxing, and non stressful as possible. When I got to work, it was time to start being productive, and do things that needed to be done. And I will admit that having to deal with my job was a bit more difficult than watching TV at home. There were meetings that I had to attend, and people I needed to deal with, and all the typical things that come with work. But while I faced some difficulty at work, it wasn’t excessively problematic. I had my own private cubical that was relatively quiet, and I spent most of my time working alone. I wasn’t rushed or pressured to do my work, and nobody cared if I took a break every now and then to clear my mind. If I needed to zone out for 10 minutes during the day, nobody was breathing down my neck to get back on task. Basically, I was allowed to take breaks as I saw fit. As long as I did a decent job, people really didn’t bother me. There was no mandatory socializing, and the few people I had to work with during the day were all fully mature, nice people. When noon came around, I would take a nice break, eat my lunch, and browse the internet for a bit. It was a nice, quiet, relaxing, and enjoyable bit of alone time where nobody bothered me or interrupted me. It was just a pleasant break in the middle of my day. After lunch, I would put in the rest of my time and then head home. I would be lying if I said that I never had any problems at work. There were of course difficulties and issues that came up, and I had to deal with them, which did take some energy and effort. But overall, the working environment was nice, calm, and reasonable. There were no unnecessary demands to socialize, and I was given plenty of time to take a break when I needed it. P a g e | 98 I would arrive home at roughly 5:30, and after sorting my mail and paying my bills, I had the rest of the evening to do with as I wished. Sometimes my friend would call me up, and invite me over for a game of D+D. And if I was feeling up to it, I would go over to his place and join him. But if I was worn out from my day at work, then I would decline the invitation, and just spend the evening at home. This means that I had a good 5 hours (minimum) from the time I got home, until the time I fell asleep, to just unwind, relax, and do whatever I wanted. I didn’t always need to spend the full 5 hours relaxing and recuperating from my day. But I always had the option available if I needed it. And there were definitely some days where I needed it. To provide an analogy, think of somebody who is asked to spend the day working out on the treadmill. In the morning, they are given plenty of time to stretch, and warm up, so they are ready to exercise when the time comes. Similarly, by having a nice, calm, non-rushed morning I can start off the day on a pleasant, low stress, note. To continue with the analogy, after the morning stretch the person is told to walk at a relatively slow speed of only 3 miles per hour. They are also given frequent breaks, and given a longer rest during the middle of the day for lunch. Similarly, by working in a relatively calm and comfortable work environment, I don’t have too many problems, and work isn’t excessively difficult. When I do have problems, I can take a break for a few minutes without being bothered. I also get a nice long break during the middle of the day for lunch. Continuing with the analogy; after walking for a good part of the day, and covering a few dozen miles, our exerciser is given the entire evening off to relax and rest. This amount of exercise is entirely reasonable, and the person is unlikely to have any major problems. This is especially true if they are in good physical shape. Likewise, after dealing with work, I have the entire evening off to relax, and unwind. This limits the amount of work I have to put into the day, and allows me plenty of time to recuperate my energy for the next day. As you can see, my day was set up and designed primarily under the premise of making things as simple, calm, and stress free as possible. And because I had a low difficulty day, combined with good coping techniques, I didn’t get stressed out, or worn down. In fact, my life was just the opposite. I was not only able to have a productive, and effective day at work, I was also able to have a nice, relaxing, and enjoyable afternoon. On some days, I would even go out and be social because I had enough spare energy to do so without causing any problems. As such, I didn’t have problems with meltdowns, I wasn’t depressed, and I didn’t have to deal with anxiety. I was able to enjoy my life to its fullest, and be a productive, happy, and content person. Unfortunately, not every parent fully understands and appreciates the importance of effective stress management. This is either because they don’t realize how stress is affecting their child, or perhaps they just don’t care. Most parents don’t have a complete disregard for P a g e | 99 the stress their child is under, but there are a disturbingly large amount of parents who operate under the ‘just deal with it, and stop complaining’ or the ‘this is for your own good’ parenting methodology. This is often combined with thinking that meltdowns, and other such unwanted problems, are merely behavioral problems with a complete disregard for the cause. Often times, a parent will come on to the forums and say something along the lines of, “My child is having meltdowns, he is acting out, he is causing problems in school, etc. I have tried a dozen therapies, parenting techniques, special diets, discipline techniques, and medication, and we are still having problems with this. What can I do to make him stop?” And so, in an effort to determine the cause of the problem, I ask what the child’s day is like. What does his schedule look like? What does he do during the day? What does he do at home? How much down time does he get, etc? The response I often get goes something like this: We get him up for school, and try to get things going, but he always moves slowly, and we have to often rush him out the door. He is at school until 3 pm. After that he has team sports from 3 to 5 pm every day. After that, he goes to therapy from 5 to 7 pm. Speech therapy is on Monday and Thursday, Occupational therapy is Tuesdays and Fridays, and physical therapy is on Wednesdays. After that, he comes home to have dinner with us, and then we work on homework for about an hour. If he has been good during the day then he gets 30 minutes of TV time before bed. At that point, my jaw hits the floor and I am left thinking to myself, “WELL OF COURSE HE IS GOING TO HAVE PROBLEMS!” Let’s just look at this from the child’s perspective. In the morning he is rushed and hurried off to school. That isn’t a good way to start the day, and it certainly doesn’t help provide a calm, stress free beginning. At school, his problems just get worse and worse. Whereas I had a nice quiet cubicle to work in, he is stuffed in a room with 2 dozen other people. And where I have the option to take a break when I need to, the poor child is constantly told to pay attention, listen up, don’t get distracted, don’t zone out, etc. While I may have a nice relaxing lunch break, the child is stuffed into a loud, chaotic room with 400 other children, and told to go socialize. And where I have mature coworkers, the child is stuck in school with other children who are often times very unkind and don’t help much with keeping his stress low. I could go on and on about all the problems that the child faces at school, but to make a long story short, it isn’t a fun time for them. It is very difficult, and that isn’t even all of it. After that they are put in after school programs, and therapies which involve even more people, and even more socializing, and even more difficulties. And just when the child finally gets home, after an incredibly hard, stressful, unnerving, and unpleasant day, it is time for homework. Seriously, as if the child hasn’t had enough problems with school all day long, he is now expected to spend another hour concentrating and working hard. Parent’s often report that their child gets stressed out, and reacts very problematically when it comes time to do P a g e | 100 homework, and I can’t say that I am surprised. When your energy is running below empty from all the difficulty you had to deal with during the day, there is nothing left in the tank to use when homework time comes. And then, after all this, he is given a grand total of 30 minutes to relax, and only on the condition that he has been ‘good’. I don’t know if I can describe how bad of an idea this is. To use the treadmill analogy again, that would be like waking somebody up, shoving them on a treadmill, setting the speed to 8 miles per hour, and then telling the person to keep up the speed for the next 14 hours without a break. It doesn’t work. There is no possible way for the person to run that fast for that long without a break. They are going to get exhausted and fail. Likewise, expecting the child to deal with all that is not only impractical, it’s impossible. I am a full grown adult, with decades of experience developing coping strategies, and the perseverance that comes with age. Yet if I was put into the same difficult situation as the child, not given any breaks, and only given 30 minutes of down time per day, I would start freaking out and having ‘behavioral problems’ as well. And if I can’t do it, how in the world can a child be expected to handle it? Still other parents recognize that their child has a limited amount of energy, and try to be understanding and patient. But at the same, time they believe that they have to push their child as hard as possible to be normal; usually under the rational that it is for the child’s own good. Effectively they try pushing their child to the point where they are overwhelmed, and on the verge of a meltdown, but without going over. This situation is compounded by the fact that most parents don’t realize they are doing it. They just assume that they are trying to ‘help’ their child, and everybody else is the overly pushy parent. After all, they know their child best, and they know what their child should be doing. This often results in their children being signed up for team sports that they don’t want to be in, or forced to attend parties that they don’t want to go to. When their child wants to stay inside, play on the computer, and relax, he is instead shoved outside and told to go play. Recreational activities are rationed, and limits are placed on things like alone time, or relaxation time. They are told to get out more, and stop being such a loner. At the same time, these parents try to provide their children with less and less ‘special treatment’. For example, their child may have previously had a pass to go to the library instead of gym class. But the parents decide that this year, their child should attend gym with the rest of their class so that they stand out less (trust me; they will stand out just as much, if not more, in gym class). Basically, as long as the child isn’t having a meltdown, the parents think that they should push the child harder, all in a misguided attempt to help them. As I mentioned earlier, this is the exact situation which can cause burn outs, or nervous breakdowns. Just because your child can handle the problems long enough to avoid a meltdown doesn’t mean that everything is going great. When your child has to tap into P a g e | 101 emergency reserves just to handle the problems of the day, then the resulting stress will take its toll on him. Living your life exhausted, with constant stress, is no way to live your life. It isn’t enjoyable, it isn’t helpful, it isn’t good for anybody, and it doesn’t bode well for your long term well being. And what is the lesson you are really teaching your child when you try doing this? Believe it or not, forcing him to go out and be social with others doesn’t teach him to be social. What your teaching him is that he should stress himself out, overwork himself, and cause problems for himself because it is the ‘socially appropriate’ thing to do. You are teaching him that it is better for him to be an overwhelmed, nervous wreck then to take a break and relax when needed; because taking a break isn’t what normal people do. You are teaching him that his own wellbeing and stability is less important than the approval of others. And if the child is unfortunate enough to believe that, then they will bend over backwards, and push themselves farther than they should in an attempt to do what their parents and teachers ask. And when they do that, it is only a matter of time before they cannot handle the stress anymore and the whole façade falls apart. And when the façade falls apart, the problems are more than just a bad day, or a hard week. Nervous breakdowns can cost you your job, your education, and several years of your life. Most parents will encourage their children to avoid peer pressure, drugs, and other harmful things which are pushed on them by society. After all, no parent wants to find their child doing drugs and drinking alcohol just because their classmates talked them into it. And the reasoning is simple; your child should not cause themselves harm just because other people tell them to, and offer approval for it. This is the same exact point that I am trying to make here. You shouldn’t pressure and force your child to be somebody that they aren’t, and only approve of them if they do things the ‘normal’ way. Because when you do that, you are just as bad as their peers for trying to pressure them into doing harmful and self destructive things. Being normal isn’t a bad thing, but trying to force it on somebody, and cause them unnecessary stress in the process is. I am not opposed to all attempts to help the child grow. Nor am I opposed to encouraging the child to try new things. If your child wants to try something new, and they seem to handle it well, then that is fine. What I am opposed to is forcing your child to act like somebody they aren’t when it isn’t necessary. What I am opposed to is only giving your child approval when he lives up to arbitrary societal expectations. What I am opposed to is trying to push your child as hard as possible, and causing him major problems as a result. What I am opposed to is making superficial appearances and cultural norms more important than the child’s well being. So, what is the point I am trying to make with this chapter? To put it simply, if you want to help your child then your primary goal should be to work with them, and help them to P a g e | 102 reduce the stress and difficulties that they face in their lives. The more difficulties you can remove, the less stressed out your child will become. The more coping strategies and effective stress management techniques you can teach them, the better they will be able to function. And the more down time, and relaxation time you give them, the less they will have to deal with, and the more they will be able to cope with. You aren’t going to help your child if you simply push, push, push, and push them more to perform. That isn’t going to work, and it is just going to backfire. Furthermore, you aren’t going to help your child by playing ‘the price is right’ and trying to push them as close as possible to a meltdown without going over. It is a good thing that you recognize there is a limit to what they can handle, but trying to get as close as possible to that limit isn’t a good idea. It is very dangerous, and sets a bad precedent for how your child should act. The best way to help your child is to recognize that they have limits, and then try to stay as far away from those limits as practically possible. Don’t play the game of how close you can get without going over, instead, play the game of how low you can keep the problems. What this means specifically will be different for each person. For myself (which most of the examples in this book which are based on), loud noises and people are sources of difficulty; and as such they are things that are best avoided, or dealt with in moderation. My recreation comes in the form of plopping down in front of the TV and watching some shows, or playing some games on the computer. And I am able to relax most effectively when I get lots of unstructured down time to do whatever I want. But for other people, this may be different. Some people are more social and athletic. And so, they might be able to enjoy themselves by going out and playing sports. And while they may not have the same problems I had from being stuck in the cafeteria, they may have more problems with things like uncertainty. These people may prefer to have more structured schedules in order to help them feel safe and calm. Since every person is different, I can’t tell you exactly what is causing your child stress. Nor can I tell you what will allow your child to relax and unwind most effectively. But I do know that you and your child need to work on finding a way to effectively deal with the stress. If that means giving your child a break, then so be it. If that means letting your child avoid gym class, or go eat someplace quiet then so be it. If that means avoiding unnecessary busy work at school, then so be it. If that means your child stays home all day and plays video games instead of going out and being social, then so be it. Your child will have more than enough expectations, and stress, placed upon them by merely having to put up with a few hours of school or work. If you really want to help your child, then make stress management your main priority, because unmanaged stress is the cause of most of your child’s problems, and is the main reason that autistic people struggle in life. The last thing to mention in this chapter is that you need to work with your child when it comes to effectively managing their stress. Your job as the parent is to teach them how to P a g e | 103 handle the problems, and give them the tools to do it. Teach them about the signs of stress, the effects of stress, and so forth. If they are old enough to understand it, then let them read this book. Teach them good coping techniques such as when to take a break, when to ask for help, and so forth. Teach them how to recognize overwhelming environments, and how to avoid problematic situations. And then give them the down time, and support that they need in order to incorporate these techniques. But ultimately, it is still up to your child to do the majority of the work here. You can teach your child well, but they have to put what you teach them into practice. Your child will have to be the one to recognize their own stress. They will have to recognize what causes them to have problems. They will have to recognize how their stress affects them, and what they can do about it. And they will have to be active participants in learning to relax and unwind. Simply giving your child some alone time isn’t going to do them any good if they just sit there, mull over the problems, and cause themselves more anxiety. They will have to learn how to let things go, relax, and enjoy their time off. You as the parent can certainly help your child, but you cannot solve all their problems for them without their help. So I encourage you, when helping your child, don’t do it with the mentality of working on your child, or working at them. Instead, do it with the mentality of working with them, to help them, and to teach them so that they can help themselves. P a g e | 104 How Do We Handle Problematic Behaviors? Many parents’ largest struggle with their autistic child is due to their child’s problematic behaviors, and the parents’ inability to handle them. One could make the argument that it is these very behaviors which the diagnostic criteria are based on. After all, the diagnostic criteria aren’t based on blood tests, or brain scans. The criteria for autism are based solely on behaviors. And autism wouldn’t be considered a disorder if these behaviors weren’t problematic in some ways. These problematic behaviors are also a common reason why parents begin looking for a diagnosis. And of course if you are going to spend a couple hours reading a book then it should do something to help you deal with this issue. Unfortunately, there is no magic bullet to solving all of life’s problems. But, I can tell you the four keys to effectively handling problematic behaviors. The first key is to identify the problem, and make sure that it really is a problem worth addressing. Secondly, you need to find the cause of the problem, so that you know what to work on. After the cause of the problem has been identified, the third key is to work with the child to address the problem. And lastly, the fourth key is to work with the child to build their maturity and self-discipline so that the child can learn how to handle problems by themselves. Unfortunately, these four keys are nice to say, but the application of them is tricky at best. After all, if this was easy and obvious you wouldn’t be having any problems. So to help you out, I am going to go through these 4 keys and discuss how to implement them effectively. Identify the Problem For starters, you need to identify what the problem is. This probably seems silly at first thought, but it is a commonly overlooked step. Often times, parents will ask for advice on how to deal with their child’s problematic behaviors; and the conversation goes something like this: Parent: My child is behaving poorly; what can I do about it? Me: What is the problem you are having? Parent: The child doesn’t do what I want him to. Me: Yes, I understand, but what specifically is the problem? Parent: He is misbehaving. Me: Yes, I understand that he isn’t behaving properly, but what exactly is the problem? Parent: I just told you! He is misbehaving! Me: Ugh... P a g e | 105 I could go on with this skit for the next 20 pages, but I think you get the point. To put it simply, you have to specifically identify what the problem is. For example: Your child is refusing to take a bath. Or perhaps: Your child is having meltdowns during homework. Those are specific enough to be addressed. Vague problems like the child ‘misbehaving’, ‘being stubborn’, or ‘being naughty’ are not valid starting points. And the reason is simple; what causes the problem in one situation may be different then what causes the problems in other situations. If you just lump all the problems together, and look for a one size fits all solution, then you are trying to fix a dozen different problems with one remedy. It doesn’t work out. If you have a dozen different problems, then you need a dozen different remedies. So, start off by focusing on one problem at a time. After identifying the problem, you then need to make sure that it is actually a problem. It isn’t uncommon for parents to see a child rocking back and forth and think to themselves, “That is a problem; my child looks funny.” But when you actually think about it, you realize it isn’t really a problem. It may not be a great idea to act that way at interviews, but there is nothing wrong with the act of rocking back and forth in and of itself. When your child is at home with family, there is no reason for them not to do it. Similarly, some parents will see their children playing on the computer often and think to themselves, “That’s a problem; my child isn’t going out and playing with other kids.” Now, I will agree that playing on the computer to the extent that he isn’t getting enough sleep is a problem. But your child choosing to spend his available recreational time doing something he enjoys and finds relaxing is not a problem. I can’t give you a list of everything that is and isn’t a problem, so you will have to exercise some rational judgment on your own. But while doing so, you need to keep an open mind and realize that weird and unusual behaviors aren’t necessarily problematic behaviors. Just because your child does something different than the cultural norm doesn’t make it automatically wrong. This is tied into the idea of accepting your child for who he is, and not trying to make him into something he isn’t. While parents may want their children to go out, socialize, make small talk, interact in a normal fashion, play sports, and be interested in normal topics, you have to realize that isn’t who the child is. When you are looking for behaviors that need addressing, you should focus on behaviors that are actual problems, not just the ones that make him seem different. After you have identified a specific behavior, and determined that it is a problem, your next step is to determine whether or not it is worth dealing with. Perhaps the simplest metaphor to describe this point is that you should ‘pick your battles’. As I said before, your child is under a lot of stress, which either causes the problems or makes them much worse than they have to be. And the more pressure that you put them under to perform, the more stressed out they are going to be, and the worse things are going to get. I am not opposed to P a g e | 106 giving your child simple reminders, explaining confusions, or solving small miscommunication problems. Likewise, if you can solve the problem by changing the routine slightly, then go ahead. You don’t need to worry about overdoing the problem solving if solving the problems is relatively simple and easy. But if you are going to discipline, or routinely get after your child for something, then make sure it is something worth doing. It often amazes me when parents nag their child, or institute punishments, for all sorts of superficial nonsense. There are parents who punish their child for not making eye contact when talking to others. They punish the child for not properly folding their clothes, and having a messy closet. Or they punish the child for taking too long to eat dinner. And to some extent, I can understand the cultural value placed on things like eye contact, or having non wrinkled clothing. But in reality, it isn’t a big deal. It really does bother me when parents harass, scold, and punish their child for insignificant things; and then wonder why their child is having meltdowns, and ‘authority problems’. Perhaps if the child wasn’t constantly being attacked and harassed over silly and superficial things, then they would have fewer problems. So, all that to say, when deciding which problems to work on, there are a couple things to keep in mind: For starters, focus on the important things first. Your child hitting his sibling is an important thing to address. Your child’s room being clean and organized is not as important. Keeping a room clean might be something worth working on later; but focus on stopping the hitting first. Secondly, keep in mind how well they are doing with their stress and anxiety on average. If they are having meltdowns several times per week, then that is time to let most of the things you are working on go. Whether or not your child washes his hands before dinner isn’t worth starting a fight and causing a meltdown. If your child is doing well, and isn’t constantly bordering on a meltdown, then you can work on better cleaning techniques; but don’t make meltdowns over silly things. Lastly, try not to work on too many things at once. If you are constantly hovering over your child, telling him everything that he is doing wrong, then all you are going to accomplish is annoying your child. The more you nag, the less they listen. So try to keep the nagging to a minimum by only focusing on a few things at a time. Once your child is showing improvement on one issue (and thus you are getting after them a lot less) you can add on the next issue to work on. That way, you are only working on the most important issues at any given time, and you aren’t following them around and constantly bothering them. You don’t want to have your evenings be 3 hours long shouting matches about where to put the shoes, what homework he has, what assignments he should do, how he should do his homework, what he can eat for dinner, where he can eat dinner, etc. It is better to just let the small stuff go. Let your child put his shoes in the wrong spot, and let him eat next to the TV. It isn’t that important, and making minor concessions is better than arguing and attacking each other over silly things. P a g e | 107 Find The Cause Once you have determined what the problem is, you then have to figure out what causes that problem. There are millions of things which can cause your child to behave problematically, so I can’t go through the complete list, but it helps if you stop and think about the situation rationally. There is a tendency to assume that all the problems are merely a result of the child being naughty. This causes parents to assume that firm and consistent discipline will solve the problem eventually. This idea is further reinforced by the parent reacting emotionally to the problems. They feel as though the problems need to be addressed, and anything other than firm discipline will cause their children to become spoiled brats, which cannot be tolerated. There is also a cultural bias telling parents that they shouldn’t let their children get away with these behaviors, thus making them feel guilty if they don’t discipline their child. But ultimately, as many parents have figured out, consistent discipline (no matter which discipline technique is used) does not solve the problems. In fact, the discipline often serves to make the child misbehave more. And when the child fails to respond to consistent discipline, the parent begins to feel like a failure for not being able to control their child. But why is this? If the child was just acting naughty, then consistent discipline should have solved the problem. After all, that’s what all the parenting books, and unsolicited advice from others, says. Yet for some reason, consistent discipline doesn’t work. Thus, it stands to reason that the starting assumption was incorrect. In other words, most of the problems are not being caused by the child being naughty. And since that is a major theme to this chapter, I shall repeat it again: Most of the problems are not being caused by the child being naughty. Often times, there are other things causing the problems which the child has no control over. Which brings me to the point of this section: If you want to make any progress when dealing with your child’s behavior, then you have to approach the problem rationally; and figure out why the child is acting the way they do. If you just jump directly to discipline without figuring out the cause, then you accomplish nothing other than worsening the problem. So then, how do you determine why their child is acting up? I say we start with the obvious, and consider what is required for the child to act appropriately. For starters, the child must know what is expected of them (i.e. they must understand how they should and should not act). Secondly, the child must be capable of acting the way that you want them to. And lastly, the child must be motivated to act that way. All three of these criteria must be fulfilled in order for the child to act as desired. If any of the three criteria are not met, then the child will not act the way you want them to. For example, let’s say that my neighbor decides to go out and mow his lawn. After 10 minutes, he decides that it is too much work. So, he then comes over to me and says, “Can you mow my lawn for me? You can use my mower, and I will pay you 30 bucks.” In this situation, I would do what my neighbor P a g e | 108 wants because I know what he is asking; I am capable of doing what he is asking; and the $30 is enough motivation. Now let’s look at the same situation, but this time consider how it would change if one of the three requirements isn’t met. Let’s say that my neighbor comes over and asks me to mow his lawn in French. Since I do not speak French, I have no idea what he is saying. I may be capable of doing the job, and I may be willing to do it for $30, but since I don’t know what he is asking of me, I won’t mow his lawn. As you can see, a failure in communication can result in a lack of desired behavior on my part. Likewise, let’s look at the same situation again; but this time my neighbor says, “Can you mow my lawn for me? I will pay you 30 bucks, but you’re not allowed to use my lawn mower.” In this situation, I would know what is asked of me, and I would be motivated to get the money, but without use of a lawn mower, I cannot do the job. Finally, let’s consider the same situation again. But this time, my neighbor says, “Can you mow my lawn for me? You can use my mower, and I will give you a shiny nickel.” In this instance, I know what he wants from me, and I am capable of doing it; but a nickel is not enough motivation for me to spend the next few hours out in the hot sun mowing a lawn. As you can see, a failure in any one of these three requirements can result in the person not doing what is expected of them. But how does this relate to your child? For starters, this means that your child may not be acting as you want them to, simply because they have no idea what you want, or how to do it. Often times, the problematic behavior is a result of the child failing to understand something which most people take for granted. While a normal person may know how to react in a socially appropriate manner, an autistic person usually doesn’t. Other times, the child may have a vague idea of what you want, but have no idea how to accomplish it, thus making the task impossible. For example, you may tell your child not to do something only to see them doing it a few minutes later. At first, this seems like the child is intentionally disregarding the rules; but the real problem may be that your child didn’t understand the purpose or intent of the rules. So, why doesn’t your child understand the rules? It is most likely because they are too vague and poorly defined. Parent’s often give a variety of rules. Some of them are pretty black and white such as, “Don’t touch the stove when it is on.” Some of them are more vague such as, “Be nice to your brother.” While not touching the stove is a fairly easy concept to grasp, things like ‘being nice’ are very poorly defined and often hard to interpret. Giving vague and unclear rules doesn’t exactly work with a child who isn’t good at interpreting vagueness. And what seems strait forward to you may not be strait forward to your child. When you give them a rule, give them an example of what that means and how to apply it so that they know what you mean. This is misunderstanding of the rules can also be caused by interpreting a rule literally when it was meant in a broader way. For example, you may make a rule that your child isn’t P a g e | 109 supposed to eat candy before dinner, only to find your child eating a cookie. To you, the phrase “No candy before dinner” was fairly obvious to mean no sugary snacks. But for somebody who takes you EXACTLY at your word, the rule doesn’t mention anything about cookies. You might also institute a rule at home, and then see your child breaking the rule when at school. To you it is obvious that the rules from home also apply to school. But, if you never mentioned that to your son, then your son won’t know it. If you ever find yourself saying, “You know what I meant” then you have encountered this problem. So let me be very direct and speak for all autistic people when I say, “No, I have absolutely no idea what you meant. At all. Ever. Stop assuming that I do.” Unless you come out directly and say the rule in very clear and direct terms, and then give examples, your child probably won’t understand it. The second thing which can cause your child to not follow your rules is that they lack the ability to do so. And this can be a confusing concept because the thing which prevents them from acting properly is not always clear. A parent may ask their child to clean their rooms, and when the room doesn’t get cleaned, they don’t see how it could possibly be a lack of ability. The clothes aren’t that heavy, and there is nothing physically stopping the child from performing the chore. As such, it is natural to assume that the problem here isn’t lack of ability. But the important thing to understand is that the problem is often not a lack of physical ability, but instead a lack of mental or emotional ability. For example, if your child is like most autistic people, they will probably have some problems with executive dysfunction. This is usually the second biggest problem that autistic people have (second only to unmanaged stress). I could easily write an entire book about this subject alone. I don’t have room in this chapter to go into all the details, but the short version is that executive functions are what allow you to take a large task and break them down into a series of doable actions. It is the ability to figure out how to attain your goals. If you have executive dysfunction, then you have a hard time figuring out how to achieve your objectives. Even simple tasks like cleaning a room become impossible because you don’t know how to do it. Where do you start? What needs to be moved, and where does it need to be moved? What is and is not supposed to stay where it is? How can you tell when something is clean vs. when something is dirty? To most people, simple instructions like “clean your room” seem strait forward and obvious, but to somebody with executive dysfunction problems, you might as well be saying, “go lift a thousand pounds”. Likewise, your child may find themselves in situations where the lack the emotional maturity to behave properly. The most obvious example here is unmanaged stress. I talked about this earlier with the example of driving off the cliff. Once your child gets too stressed, anxious, and wound up to the point where they start having problematic behaviors, they are often too far gone to think rationally and consider what potential consequences their behavior might have. When they are in the heat of the moment they are acting more on instinct and P a g e | 110 emotion than rational thought process. As such, they aren’t in the mindset to consider the consequences and intentionally chose whether or not to act poorly, they just react instinctively. Since this is an important point to explain I have decided to once again offer an analogy. So, put yourself in this situation. Imagine it is 8 AM Saturday morning when your alarm goes off and wakes up you. On this particular Saturday morning you are feeling pretty poor. You either have a hangover, or a migraine, or something which just makes you feel ill. Since you don’t have work on Saturdays you decide to sleep in. Approximately 15 minutes later your brother barges into the room, turns on all the lights, and starts yelling at you to get up. He goes on like so: “GET UP! GET UP! GET UP! COMMON! LET’S GO! GET UP!!!!” At this point you are probably not very happy with him. So you tell him to go away and leave you alone, but he persists. He continues yelling, “GET UP! YOUR ALARM WENT OFF 15 MINUTES AGO! WHY AREN’T YOU UP YET!? COMMON! GET UP!” Again, you tell him to go away, but with a bit more bluntness. After all, you are not feeling well and he isn’t making things any better, so you are probably getting ticked off. He then rips your blanket away from you and begins trying to push you off the bed. At this point, you would probably be fed up with him and likely yell very angry things at him. You are also likely to physically throw him out of the room, and slam the door on his face. It isn’t as though you are intentionally being rude to your brother because you thought it would be funny. Nor are you being rude because you enjoy doing so. You are being rude because you are just fed up, not feeling well, and you aren’t in the mindset to deal with the problem nicely. To help better understand this situation, let’s break that event down into 4 steps. 1. You weren’t feeling well so you were not in a very good mood to deal with the world. 2. You were forced in to an unpleasant situation where which was upsetting and aggravating. 3. You tried to remedy the situation nicely at first by telling the offending person to go away. But he didn’t go away, and the unpleasant situation persisted. 4. You got upset, angry, and then acted rude and forceful. If we look at all 4 of these steps, the final reaction of you being rude and forceful seems entirely reasonable, and perhaps even acceptable. But consider how this would look from an outside perspective. Using the same example, let’s say that your brother and sister are in the kitchen discussing the day’s plan at 8 AM. They are waiting for you to wake up so they can talk about the day and make plans with you. When 8:15 AM rolls around, and you aren’t up yet, your brother goes to wake you up while your sister makes breakfast. A few minutes later breakfast is made and your sister comes to see whether or not you’re awake yet. At this point, sees you throw your brother out of the room, yell angry things at him, and then slam the door P a g e | 111 in his face. In this situation, your sister would only see step 4, and thus think that you were just being rude and angry without reason. This is the sort of problems you may be having with your child. For example, you drop your kid off at school in the morning only to find out later that he was disruptive, and uncooperative. In this situation, all you are seeing is the final result which is the problematic behavior. You aren’t aware of all the circumstances that led up to the problematic behavior. For starters, your child wasn’t feeling well that day because of the sensory problems they always have. The child was then placed in a loud, chaotic, unpleasant environment (otherwise known as school). He was picked on by his classmates because he was weird, and as a result he got upset. Most schools don’t allow breaks or alone time, so you have to always stay with the rest of the class. And when the rest of the class is the problem, you can’t get away from it. So the child is pretty much stuck in a very unpleasant and aggravating environment that he can’t get away from. And when he starts acting up the parents just see the final outcome and think that this behavior is unreasonable. But when you consider everything that the child has to put up with at school then suddenly it doesn’t seem unreasonable. Your child’s poor behavior is indeed problematic, but he isn’t doing it just because he wants to get away with something he thinks is funny. He isn’t doing it because he wants to be disrespectful. He is doing is because he is stuck in an unpleasant, overwhelming environment which doesn’t allow him the chance to handle his stress effectively. In other words, the child acted out because he didn’t have the emotional ability to handle the situation. It is important to remember that autistic children are often less emotionally mature then other people the same age. Just because a typical 10 year old can handle something, doesn’t mean that an autistic 10 year old can handle the same thing. While he may physically be 10 years old, his emotional maturity may be closer to somebody who is only age 6. And this gap can create problems when the child is expected to act in an age appropriate manner, because they simply aren’t capable of doing so. So the next time your child doesn’t seem to act his age, you may need to accept that he really can’t act his age, not just that he doesn’t want to. The third reason that an autistic person doesn’t act the way you want is simply because they don’t want to. Your child will occasionally do things their own way, even if they fully understand what you want, and are capable of doing so. However, I must point out that just because the problem is caused by willful disobedience, more discipline is not likely to solve these problems either. And, of course, the question once again becomes: why not!? As I said earlier, if the child is just being naughty, then consistent discipline should solve the problems. So why won’t it work here either!? To answer that question, you have to realize that there is a difference between willful disobedience, and ‘naughtiness’. P a g e | 112 In order to understand the difference, you have to consider how your child makes a decision. The human thought process is very complex, but the simplified version is that the child is presented with a choice. He can either do things your way, or his way. For example: You want him to take a shower, and he doesn’t want to take a shower. In order to make a decision, he weighs the benefits for taking a shower vs. the cons of taking a shower. If the benefits outweigh the cons, then your child will shower. If the cons outweigh the benefits, then your child will refuse to shower. For most young children, the pros and cons look like this: Benefits of taking a shower: None. Cons of taking a shower: I have to stop playing with my toys. As you can see, there is no real benefit for taking a shower (at least not from the child’s perspective). But the con is that they have to stop playing with their toys. As such, most young children will decline a shower if the decision is left up to them. In order to convince the child otherwise, most parents will employ a typical reward/discipline system. In other words: if the child takes a shower, they get a reward; if they don’t take a shower, than there is a negative consequence. And so, with the discipline added into the equation, the balance tips and looks like this: Benefits of taking a shower: Get a sticker or some other token for good behavior. Also, get to avoid the time out. Cons of taking a shower: I have to stop playing with my toys. As you can see, the child still wants to avoid the shower and play with his toys instead. But the threat of time outs, combined with the allure of the rewards, tips the scale in the other direction. And thus, the standard discipline technique convinces the child to do something they would not want to do otherwise. You make your way seem more appealing (with the use of rewards), while at the same way making your child’s way less appealing (with the use of punishments). And as such, your child makes the rational decision to take the reward rather than the punishment, and do things your way. So now then, why doesn’t this work with autistic children? To put it simply, parents often underestimate just how much the scale is tipped against them. When looking at the previous example, we can see that this works because the child was not FIRMLY anti shower. The only reason he wanted to avoid the shower was to spend 15 more minutes playing, which really wasn’t a big deal. While he was opposed to the shower, it wasn’t based on any firm principles or big aversions; it was just a mild preference. As such, the use of relatively small rewards/threats was able to change his mind. Conversely, when your autistic child refuses to do something, it is often because of more than just a mild preference. They may be firmly opposed to doing something because P a g e | 113 doing so would be an incredibly unpleasant event for them. For example, while you may not have any problems with a shower, an autistic person who has sensory problems may have a strong aversion to it. The water droplets falling on his skin seem like hot needles boring into him. The soap feels slimy and disgusting, and shivering in the cold after the shower feels like he is about to die of frostbite. So, when you look at the balance, it actually looks something more like this: Benefits of taking a shower: None Cons of taking a shower: I have to stop playing with my toys. And I also have to endure a torturous, painful, and unpleasant experience. As you can see, the child is opposed to taking a shower. But in this scenario, it is more than just a mild preference. It is a firm, and entrenched, aversion to showering based on more than just minor inconvenience. So what happens when you add on the standard discipline techniques? It looks something like this: Benefits of taking a shower: Get a sticker or some other token for good behavior. Also, get to avoid the time out. Cons of taking a shower: I have to stop playing with my toys. And I also have to endure a torturous, painful, and unpleasant experience. As you can see, there is no good option there to choose. Your child can either get punished by you, or deal with the problems of taking a shower. And neither option looks good to your child. So your child makes the only rational choice, which is to refuse to shower. He doesn’t like getting punished, and he certainly wishes he could get the reward, but refusing the shower is simply the lesser of two evils. He may be refusing to comply with your rules due to willful disobedience, but it isn’t because he is being naughty and childish. He actually has a real and significant reason to not do what you are telling him to. If your child refuses to do something on a routine basis, even after you have clearly explain what is involved and how to do it, then you probably have found yourself in this situation. Simply put, what you are asking your child to do is worse than the punishment you are threatening. As I showed in the shower example, sensory problems can make simple requests incredible painful. What feels fine to you may be unbearably loud, bright, or disgusting to your child. Foods that you think are fine may be revolting and nauseating to your child. Playgrounds and supermarkets that seem fine to you may be a cacophony of painfully loud sounds to your child. Just because you aren’t bothered by something, doesn’t mean that your child isn’t. This refusal can also be because of anxiety about the request. If your child has ever refused to go to school, or church, or leave the house, then you have experienced this. To put P a g e | 114 it simply, the event you are asking them to do is not a pleasant event for them. This could either be something related to the event in particular, or it could just be fear of the unknown. As I said before, uncertainty can make a person very stressed out. And as such, your child may refuse to do something because they are simply too afraid of trying something new. And finally, your child may not act like you want them to, simply because they are immature children. As I said at the beginning of this section, most of the problems are not being caused by the child being naughty; but most is not the same thing as all. Your child may act up and push buttons just because they can. It is a standard human behavior which everybody is born with. Examples of this might include teasing, bullying, stealing toys, throwing temper tantrums, and so forth. Since this is standard human behavior, and your child is human, they will act poorly at times just to push boundaries and see what they can get away with. So now that we have gone through a list of possible reasons, we are left with the original point of this section. You need to figure out what is causing the problems. Simply knowing all the possible causes doesn’t do you any good if you can’t figure out which one is causing the specific problem that you are facing. So, how do you figure out what the cause is? Your best bet is to start by figuring out which one of the three areas your child struggles with. Was the problem due to a lack of understanding, a lack of ability, or extenuating circumstances like sensory problems? If the problem is a failure to follow some rule, or social protocol, then the problem is most likely not knowing the rules, or not knowing how to apply them. Generally, in these situations, the child won’t be freaking out or panicking. And if you don’t point out the problem then they probably won’t even be aware that anything is going on. If the problem seems more like acting out, or your child seems to have lost control, then you are likely dealing with a stress related issue. Often times, there is crying, lashing out, or both involved. If the child is not doing what you have asked them to, but not outright refusing, then you are likely dealing with the problem where the child cannot do what you are asking. For example, you tell your child that he has to stay in his room until it is clean, or homework is done, or whatever else. And after you check back 3 hours later, the room still isn’t clean, or the homework isn’t done. Generally, if your child just gives up, and refuses to even try, then you are dealing with a lack of ability. And again, I must point out that things like ADHD, and executive dysfunction, can cause your child to have difficulties even if you can’t see them. If your child is outright refusing to do what you are telling them to, then you are likely dealing with a fear, or anxiety problem. Keep in mind that your child could be afraid of anything. Even if it is silly to you, it isn’t silly to them. Generally, this occurs in situations where you have explained things to your child a dozen different ways, and yet they still don’t do what P a g e | 115 you are asking them to do. If you try to force the problem, then you just wind up creating stress, and then you get to the acting out part. There are also times where the problem may be the combination of more than one category. For example, your child may get angry and hit people because he gets stressed out and also because he does not know a better way to handle his anger. Or perhaps your child can’t do the task you are asking of them, and as such they get frustrated, and then you get the stress reaction. I can’t tell you exactly what the source of the problem is, but the more you can figure out, the better off you will be. When trying to figure out the cause of the problem, the best way is to simply ask your child why they act the way they do. This should be the first, and most obvious, step in problem solving. It really surprises me that most parents don’t do this. Often times, parents will read books, ask other parents, and attend parenting classes to figure out why their child is misbehaving. And yet many of them have never actually asked their child why they act the way they do. I have nothing against reading books, or asking other people for ideas. But when trying to figure your child out, you must remember that your child is the only one with first- hand experience. If your child is like most autistic children then they will probably have difficulty putting their thoughts into words (it is harder than you think). In most cases, especially with young children or those with significant communication problems, you aren’t going to get a detailed and concise answer right off the bat. But any information you can get is better than nothing. And it is definitely worth asking them. Even if you can’t get a good answer, simply asking them why they act like they do shows them that you are trying to understand and help them. So what happens if your child can’t tell you exactly what the problem is? In those situations, try to phrase things to your child with simple questions, preferably yes or no questions if possible. Your child may not be able to tell you exactly what the problem is, but if you break it down into simple questions, then they may be of more help. For Example: does your child know what you wanted of them? If your child can’t tell you what he did wrong, then odds are he doesn’t know what he did wrong. Did they know how to handle the situation appropriately? Simply knowing an action is against the rules doesn’t help your child if he doesn’t know what else he should be doing instead. How was your child feeling during, or slightly before the problem happened? Did they feel anxious, or stressed out? Did you notice any signs of tension in your child? Was there anything about the situation that made your child uncomfortable? Was the situation too loud, too chaotic, etc? If the child isn’t doing what you want, then focus on the task itself. Is it poorly explained? Was there any confusion? Does the child know how to do the task? Can the child explain the steps required to complete the task? P a g e | 116 Obviously, you will have to tailor the questions to the specific situation and the specific child. Some children need simpler, more concise questions. Other children can handle more open ended questions. If you have a general idea what the problem is, then you can focus on a specific area to get more details. For example, if your child gets out of control and has a meltdown, then you know the problem is poorly handled stress. In that situation, you can focus on figuring out what caused the stress. If the child couldn’t do something, then focus on what caused the road block. If the child is refusing to do something, then focus on why they find the event so unpleasant. If you are unable to get anything helpful out of your child, then you have to play detective. It is important to remember that your child acts the way they do for a reason. And if you understand how they operate, then you can probably figure out what is causing the problems. When they are acting out, put yourself into their shoes, and try to figure out what is causing the problem. If they are reacting a certain way, then think what would make you react that same way. If you are stumped and can’t figure it out, then try asking for some advice from other people who have been in similar situations. Try asking either older autistic people, or parents of other autistic children. I must again recommend http://www.wrongplanet.net, specifically the parent’s forum. If you go there and describe your problem, you will probably get some good information. As I said before, your child is your child is probably your best source of information, but there is nothing wrong with asking other people. So read continue to read some books, talk with other parents, talk to any autistic adults you know, and try to get to know your child better. Because the more you know, the better you can understand your child, and the better you will be able to work with them, and help them. Address the Problem After you have figured out the problem, your next step is to address it. This is the portion where you solve the problem that you are having. Unfortunately, similar to the last section, this is easier said than done. How does one solve the problem? Even if you know what causes the problem, that doesn’t mean you can automatically find a solution. And even if you come up with a solution, how are you going to know if it is a good idea, or if it will work? And these are all very good questions, which I will attempt to answer in this section. But before I get into any of that, I feel that there is one very important point to cover first. This may sound tacky, but beware of ‘Alpha Parenting’. If you haven’t heard that term before, it refers to the parents taking the dominant and unyielding role in the parent-child relationship. In other words, the parent tells the child what to do, and then forces the child to comply. If the child refuses to comply, then the parent just ups the consequences more and P a g e | 117 more until the child finally gives in and does what they are told. This parenting style is based on the premise that the parent knows what is best for the child, and that the child will act appropriately if they are sufficiently motivated via threats. I gave an example of how this discipline style works with the shower example in the last section. The problem with this method is that it works horribly on autistic children, and it doesn’t do much good for normal children either. And there are a couple reasons for this. As I mentioned in the previous section, most of the problems are not caused by your child being naughty, or immature. And as such, punishing or threatening your child in an attempt to make them behave doesn’t solve the problem. If your child’s problem is caused by a failure to understand the rules, then simply punishing your child is not going to make them understand the rules. If your child doesn’t know how to handle a situation, then punishing them isn’t going to make them know how to handle the situation any better the next time it happens. If your child is reacting to stress, and getting overwhelmed (thus causing outbursts, or other problems) then punishing them is only going to make them more stressed, which is just going to make things worse. And if your child is refusing to comply due to fear or anxiety, then punishing them is not helping them deal with their fear and anxiety. I am not saying that your child is perfect and doesn’t misbehave on occasion. But assuming that all the problems are misbehaviors, and punishing them, is a bad idea. As I explained in the last section, when you punish children for things which are beyond their control, then you don’t accomplish anything. When the child can’t do anything to stop, prevent, or predict the discipline, then they feel as though any discipline is simply given at random, with no correlation to their choices. So even if you discipline them for something which they can prevent, they just assume that it is more random punishment, and no connection is made between the naughty behavior and the discipline. Thus, the discipline is ineffective at solving the problems, and only serves to worsen the parent-child relationship. Imagine how you would respond if the police pulled you over and gave you a traffic ticket at random intervals for things like driving too close to a puddle, or having the wrong color car. Even if you followed the speed limit, and obeyed traffic signs, you would still get a ticket for things which you have no control over. Would that cause you to appreciate the police force for all the good things they do? Of course not! You would be very angry and bitter towards the police for all their abuse of power. You wouldn’t trust the police, and you would certainly not see them as nice people who are just trying to help. And even if the problem is due to willful disobedience, that doesn’t mean that taking the ‘Alpha Parenting’ approach is a good idea either. Just because your child is choosing to disobey, doesn’t mean that the solution is to punish them more and more until they give in. When the child is objecting for real and valid reasons, mostly due to a strong aversion, then P a g e | 118 trying to force their compliance is a bad idea. This may get the child to do things your way, but it doesn’t work out well in the long run. The problem is that when you have to use strong coercion, threats, and punishments in order to convince your child to do something, you become the source of your child’s anxiety and stress. Your child is basically stuck between a rock and a hard place, and you are just squeezing harder and harder. Not only does this not help with the goal of keeping your child’s stress low (thus leading to more problems and meltdowns), it also makes your child bitter and angry towards you for putting them in that position. It doesn’t matter how you rationalize it, or how much you tell them that it is for their own good. Nobody likes to be put in a position where they have to choose between two horrible options. Imagine how you would feel if your boss kidnapped your family, and then demanded that you work 80 hours per week or else you would never see your family again. Your boss could rationalize it all he wanted to by saying things like, “Finishing this work before the end of the quarter is really important” or, “If you don’t meet your sales quota, you won’t get your bonus. I am just doing this for your own good.” You may indeed fail to make your sales quota if you don’t work 80 hours per week, but that doesn’t mean your boss should use such strong punishments in order to enforce his demands. Your boss may get what he wants in the short term, but he has pretty much destroyed any functioning relationship with you. This method of discipline also fails to work in the long term because it doesn’t provide the child with a reason for acting appropriately aside from fear of punishment. For example: When I was in my freshmen year of college I had to attend the mandatory general education classes like economics. I actually enjoyed the topic, but most of my classmates didn’t. So what did they do? Well, about half the class didn’t bother showing up for lectures or doing the homework. Since attendance and homework were both optional, many of my fellow freshmen elected to do neither. They only showed up on the day of exams and, not surprisingly, very few of them managed to pass the class. So why would my fellow students, who just paid lots of money for tuition, fail to attend class or do any work? The reason is pretty simple; they didn’t have any motivation to do so. Prior to college, they only attended class, or did homework, because they feared punishment for not doing so. If they didn’t attend class, or do homework, the school would have contacted the parents and failed the child. Their parents would then have punished them for skipping class and failing. But once they moved out to the dorms, they no longer had to worry about their parents harassing them. And as such, they no longer had any motivation to put forth any effort. Conversely, I attended class because I wanted to learn the material and get the best possible education for the tuition that I spent. The difference here is what motivates the person. If a person is only motivated by fear of punishment, then once that threat of punishment is gone, they go back to acting poorly. As you can see, trying to force P a g e | 119 your child to act appropriately, by threat of punishment, doesn’t really teach them important things like self discipline or responsibility. And the biggest problem with adopting a ‘punish first, ask questions never’ approach is that it puts you and your child at odds. There is a common theme in our culture that teenagers naturally rebel against their parents. And this is partially true, but it is often misstated to make it seem as though the teenager is being irrational. In reality, the source of the problem most often lies with the parent. The situation occurs when the teenager begins to question their parent’s wisdom and start making decisions on their own. This is a perfectly healthy and important step towards acquiring independence. If the parents are mature and have a respectful adult conversation to help their child understand things, then it generally works out well. The child will understand the reasons behind the rules and can therefore make informed and rational choices. Unfortunately most parents don’t bother to respectfully talk with their children and explain how things work. Instead, most parents just decide to declare rules, and then punish their children whenever the rule is broken. Instead of helping their children to grow and develop independence, the parents will punish them for questioning their authority. This only makes the child rebel as a reaction, and thus the typical teenage rebellion is formed. The fact is that you don’t want to be at odds with your child. You don’t want to be constantly following them around waiting for them to misbehave so you can punish them. And you don’t want your child to view you as the enemy. Because when your child views you as the enemy, they will lie to you, rebel, and break the rules simply because they are trying to exert any independence that they can. Independence is a very deeply ingrained need that all human beings have; and people are willing to die for it. The United States of America was formed from a war of independence. And the Civil War was fought for the independence of the slaves. So if people are willing to die for the cause of freedom and independence then you should realize it is not something you can or should try to suppress. When you try to use an ‘alpha parenting’ style of discipline where you make rules by fiat and punish your child into submission then that is exact what happens. So I implore you, don’t just declare a bunch of rules, punishing misbehavior, and consider it good parenting. The only thing that will do is drive a wedge into your relationship. And once that happens, the odds of getting any useful information out of your son, or helping him with his problems, is pretty much shot. Your son will just see you as a mean person who is bullying him and it won’t turn out well for him or for you. So this leads to the obvious question, how are you supposed to handle the problems? Dictatorial ‘Alpha Parenting’ doesn’t work out very well, but you can’t just ignore the problems and hope that they go away. So what are you supposed to do? And furthermore, how do you handle simple problems like petty immaturity without resorting to discipline? Are you supposed to let your child get away with being rude and stealing other people’s belongings? P a g e | 120 The short answer is that you should handle misbehaviors by working with the child to teach them how to act appropriately. The central idea is that your child’s actions will affect their future. If they are behaving problematically then it will affect them in a negative way. If they are behaving appropriately then it will make life better and more enjoyable for them. So you want to help your child learn effective behaviors to replace the poor behaviors for their own benefit. Now that is nice to say, but it is lacking in details. So here is a brief overview to explain the basics. The process starts by sitting down with your child and making sure you are both on the same wavelength. You have to want the same things, and have the same priorities, because if you don’t agree on what you want, you’re not going to able to convince them of much. Once you and your child are in agreement about what you want, the next step is to explain WHY (bolded for emphasis) their problematic behaviors are problematic and how it will negatively affect their future. Once they understand why their behavior is problematic and agree that it needs addressing, you can then talk with your child and try to figure out what leads up to the problem. Is it stress, is it forgetting the rules, is it just your child’s natural immaturity, what is the problem? Once you have the problem identified, you can then work with your child to devise a solution. Once you have a solution, you then make an agreement with your child how that solution should be implemented. Now that we have an overview of the process, let’s look at it in more detail. The first thing to consider when having this conversation is the setting. For optimum results, your best course of action is to have this conversation when both you and your child are calm, and level headed. It is a pretty bad idea to try having a big conversation when your child is in meltdown mode and stressed out. It also a bad idea to have this conversation when you are still upset about what your child did. If your child does something problematic, that you haven’t discussed yet, then feel free to tell them that it is not acceptable. But try to hold off on having a huge conversation until you are both at home, and relaxed. Also, make sure that you don’t try to rush this conversation. Part of this conversation requires your child to give as much input as he can and that can take a while. So don’t try doing this when you need to be at a scheduled appointment in 30 minutes. And the most important thing that you need to do for this conversation is make it clear to your child that you aren’t trying to punish them, or be mean to them. You are just trying to help them with their problems so that life can be better for both you and them. You want your child to see you as a person who can help them with their problems, and thus have better life. You don’t want to be seen as somebody who is just there to dole out punishments. Part of convincing your child that you are on their side may require that you apologize for mistakes that you may have made in the past. For example, you might need to say, “I am sorry for yelling, I allowed my emotions to take over and I should not have done that.” I am not saying P a g e | 121 that you should let your child walk all over you. But I am saying that this conversation will only work if it is done with mutual respect. And part of mutual respect includes apologizing to people when you have been mean to them. After all, if you want your child to treat you with respect, you must lead by example. Once you have the setting for the conversation done, the next step is to get you and your child on the same wave length so that you share the same priorities. The priorities should be basic stuff, like you want your child to enjoy life and have a good future. Or you may want to have peace in your household so that you get along without yelling at each other. Or you want to prevent your child from having more meltdowns. This should be pretty easy to get your child’s agreement on. Other times you and your child may not see eye to eye. For example, you may want your child to spend all his time studying for school. Conversely your child may want to spend all his time playing video games. The problem is that if you try going forward with different priorities then you will inevitably have disagreements about how to accomplish things, and how to handle things. You have to match up your priorities with your child’s priorities first; then you can come to a mutually beneficial agreement. Part of this may include you convincing your child to change his priorities. And you can do this by talking about the importance of school. Talk about how it affects their future, and how it is in their best interest. Part of this may also include you changing your priorities. You may want your child to study all the time, but just because you want something doesn’t make it the best course of action. You will have to consider things from your child’s perspective and come to a mutual agreement about what is important, and why it is important. Sometimes your child’s priorities may be fine, and all he needs is some help accomplishing them. Sometimes he may need to reevaluate his priorities, sometime you may need to reevaluate your priorities. But you can’t move forward until you both have a mutual agreement about what is important, and why. After you and your child are in agreement about what it is that you both want, you need to explain to your child what behaviors are problematic. And more importantly, you need to explain why those behaviors are not compatible with what you just agreed upon as important. For example, you can both agree that you want to have a calm house where people don’t yell angrily at each other. As such, your child’s tendencies to get angry and yell when his stuff gets moved are not compatible with the goal of making the house a safe, calm place. Your child needs to understand why certain behaviors are problematic, not just why it is a problem for you, but why it is a problem for them too. Try to give them a reason which appeals to their own selfish interests. For example, your child shouldn’t yell at people because if they keep doing that then they won’t have any friends. It might be a problem because it hurts other people’s feelings; and therefore the other people won’t want to play with your child. It could be a problem because the yelling causes the other children to get angry and yell back which your child doesn’t like. It might be a problem because it makes the parents angry, which just P a g e | 122 increases the stress in the house and makes everybody unhappy. Feel free to give as many analogies, metaphors, and examples as possible to explain why a certain behavior is a bad behavior to have. The reason why you are trying to convince your child that their actions are harmful is to provide your child with the motivation to change their actions. As I have mentioned earlier, too many parents resort to punishments as their primary method of motivation. And this fails to work well because it doesn’t do much to motivate the child to change their ways. It motivates them to hide what they are doing, and be sneakier about it, but it doesn’t give them any real reason to change what they are doing. And, of course, your child is going to need to make their own decisions about their lives eventually. If you don’t teach them why certain actions are harmful, then they will never learn why they should avoid doing them. As such, you need to explain to your child why certain actions are problematic, and why they need to be addressed. If you can get your child to accept that it is in his own best interest to stop the behavior then you have won 90% of the fight. After you have come to an agreement about what needs to be changed (and why) the next step is to figure out how to deal with the problem. If you haven’t yet discussed the problem with your child and figured out the cause, then this is the time to do so. By understanding what causes the problematic behavior, you can find ways to deal with the problem. Then, the solution is simply a matter of addressing the cause. If your child’s problems are due to stress then you could discuss things like taking a break when stressed out. You could discuss things like safe ways to unload stress. You could discuss things like how to recognize the signs of rising stress. You can also discuss things like emergency escape plans when your child just needs to leave a situation. If the problem is due to forgetting the rules then perhaps he needs them written up and posted for easy reference. If he is stealing a sibling’s toy because he wants one for himself then perhaps you can come to an agreement about how to share toys in a fair manner. Since there is an infinite amount of possible problems, and possible solutions to those problems, I can’t give you a complete list. But the idea is that you will talk with your child and find out what can be done to prevent the problem from occurring in the future. Figure out what steps can be taken, and what your child needs to know in order to help him avoid the problematic behaviors. The more involved you can get your child in determining what the problem is, and what can be done to solve the problem, the better. After all, nobody knows your child better then himself. If you can’t figure out a solution to the problem, then feel free to ask advice from others. As I mentioned in the previous section, online message boards, other parents, and autistic adults may be able to help you find a solution to your problem if you can’t figure one out by yourself. P a g e | 123 And, of course, the last step is implementing the plan that you come up with. For example, if you determine that your child needs an escape method when they are too stressed out, then figure out a way to make that happen. Perhaps you can give your child a code word to use as a way to let you know he needs to escape. Perhaps you need to contact the school and let them know of your child’s need to retreat to a safe place and relax. Perhaps you need to put up little reminders around the house to help your son remember things. I don’t know what you need to do in order to implement your solution. But I do know that coming up with a solution doesn’t do any good if you don’t implement the solution. Now, at this point I must recognize that there are probably parents out there who think this whole scheme seems implausible. They might be in a position where they have a 4 year old, non verbal, child who isn’t yet capable of having this mature of a discussion. What are they supposed to do in that situation? And while a young child may agree with you in theory that stealing a sibling’s toy is bad, they don’t yet have the maturity or the impulse control to let that stop them from doing it anyways. So what are you supposed to do in these situations? In these situations, you should try to do as much of this procedure as you can in a way which matches your child’s maturity. For example, your 4 year old child probably won’t be able to have a mature discussion about priorities with you. This is mostly because a 4 year old child doesn’t yet have the foresight to make priorities. So instead, you can just tell your child what is important and why. Say that it hurts other people’s feelings when he acts out and hits other people. If he wants people to be nice to him then he must try to be nice to other people and not hurt their feelings. You can also say that acting good makes mommy happy, or whatever works in motivating your child. When a child is young you will need to be their moral compass for them since they haven’t developed their own yet. When looking for the cause of the problem, your child may not be very helpful. So you will need to look for answers elsewhere. Post on online forums, read books, ask other autistic people or other parents, etc. Trying to get as much information from your child as possible is always good, but sometimes it pays to ask elsewhere. If your child can’t contribute his own thoughts because he has difficulty verbalizing what he thinks, then you can at least talk about what you think the problem might be, and try to get a confirmation from the child. When it comes to looking for solutions, your child may also draw a blank. It has been said that a problem cannot be solved by the same mindset which created it. This isn’t exactly a perfect axiom, but it does indicate that your child may not know how to solve his problem or else he would have already solved it. So you may need to provide the solution for your child. You may also need to provide the solution in a way which your child understands. For example, it is a bad idea to tell your young child, “When your stress reaches a level in which your actions become difficult to control you should remove yourself from the anxiety inducing situation in an appropriate manner.” Odds are that a 4 year old child isn’t going to know what that means. P a g e | 124 It is better to be more specific and simple. For example, you might tell your child, “Sometimes when your stuff gets moved you get upset and want to hit people. You shouldn’t hit people when this happens. When you get upset and want to hit people you should come to me and ask for help. You can also go to your hiding place and relax until you aren’t angry anymore.” That is more strait forward and understandable. If you want more examples like this then try researching ‘Social Stories’. Just Google the name and you will see what I mean. Finally, when working with young children, you may need to find some way to properly motivate them to stick to the plan. If your child is mature enough to have foresight about how their actions affect their future then a rational discussion about the results of their actions is all the motivation they need. However, if your child is young, and doesn’t think very far ahead, then you may need to add in more immediate feedback. For example, if your child does action A he gets result A. If he does action B, he gets result B. The idea here is to teach your child that their actions have consequences and that they can choose their actions, thus choosing their consequences. This is commonly referred to as the reward/consequence system. For example, if your child does a good job at controlling his temper, not stealing a toy, or whatever, then he can get a reward. If he behaves poorly then he gets a negative consequence. Now most parents are probably thinking to themselves, “Wait a minute, didn’t you just tell me not to punish bad behaviors, but now you are saying that I should? Which one is it?” And I can definitely see the confusion. But allow me to explain the difference. ‘Alpha Parenting’ is more about the parent being in charge, making all the decisions, and forcing their child to submit to their authority. And if the child doesn’t comply, then the parents will make them miserable until they comply. When parents go with this method they don’t bother with trying to explain themselves. They don’t bother trying to figure out what caused the problem, or how to help the child. They don’t even bother treating their child with the respect that any human being deserves. They are just interested in getting the child to act the way that they want and nothing else. By comparison, the reward/consequence style of teaching discipline is merely a way to help your children understand that their choices have consequences. Just like hitting people can land you in jail as an adult, your child hitting other people will result in a negative consequence. This isn’t done because you want to be mean; it is merely a way to provide more immediate feedback so that your child can learn that poor choices lead to poor outcomes. Since a 5 year old probably doesn’t have the foresight to think too far in the future, having a more immediate consequence can better help them to understand. This reward/consequence parenting technique is also done in addition to the previously described method of working with your child. This doesn’t replace having a conversation with your child, discussing why behaviors are problematic, or helping to identify the causes and find solutions. It is just a supplement to help your young child learn some self control. P a g e | 125 As for what reward/consequences to use, that is mainly up to you. But I would suggest that the best way to do this would be to use a token economy. When your child does something right then you can give them a marble, or a sticker, or some other small token. If they do something wrong, they lose a token. This method has a couple good advantages. For starters, it allows you more opportunities to give positive reinforcement. If you want to reward your child with a computer game then you can’t go about giving him a new game every 30 minutes. You will quickly run out of games to give him. But if you make the game worth 20 stickers then you can feel free to give him a sticker every 30 minutes whenever he plays nicely with his siblings or does something else appropriately. This also gives your child a chance to correct his mistakes. If he made a bad choice and lost a sticker then he can do something good to earn that sticker back. This also has the benefit in that it gets the negative consequence over and done with. Things like time outs can often lead to resentment because they allow the consequence to linger and let your child stew and get angry. When you put your child in time out I guarantee you he isn’t thinking about what he did wrong. All he is thinking is, “My parents are so mean!” When he loses the sticker then it doesn’t make him sit there and think about how mean you were to him. When deciding which rewards to give out (aka, what he can exchange tokens for), make sure you don’t use recreational time as a reward. It is a bad idea to withhold a child’s favorite recreational activity (i.e. special interest) and use it as ransom in order to ensure cooperation. For example, if the child cooperates, then they get 30 minutes on the computer, or 30 minutes of TV, or whatever. This doesn’t work out well. How would you feel if your boss kidnapped your family, and then demanded that you work in order to get them back? That would certainly motivate you, but you probably wouldn’t enjoy it. And the threat of losing your family would probably stress you out. Likewise, taking a child’s recreational time or favorite activity, which is something that helps him to handle life, and ransoming it back to him, is not something that will help. All it will do is make your child stress out about losing his needed down time. And what happens if he has a bad day and doesn’t cooperate? Are you going to ban him from the computer? All that will do is prevent him from relaxing and getting his stress out, which is going to make the next day even worse. And then you get into the downward spiral where you ban your child from doing the things that he enjoys, thus making him more stressed, which means he acts out more, and so forth. So let your child play on the computer, or watch TV, or do whatever relaxes him as much as possible. And don’t threaten or ration it out anymore than necessary. If you do want to include your child’s favorite activities in the reward, then that is fine. Offer to buy them a new game, or earn stickers which can be exchanged for a game. Perhaps you could motivate them with a trip to the zoo or some other activity they enjoy. You could get P a g e | 126 them a new book, or get them some more K’nex to play with. Whatever motivates your child is going to depend on your child, but just make sure you aren’t ransoming their down time. If you are going to use this methodology then one of the most important things is how you go about enforcing the negative consequences. The entire point of this technique is to teach your child to make the right choices. And in order for him to do that, he must be aware of what he is doing and realize that he can chose to stop. What this means is that you need to give him a warning. For example, let’s say you have a rule that your son shouldn’t take other people’s toys. If you find your son has stolen another child’s toy then you can give him a choice. He can return the toy, and say sorry, thus keeping his sticker. Or he can refuse to return the toy, in which case you will return it by force and your child will lose a sticker. Likewise, when your child starts behaving poorly you can give him a warning and then tell him that how he chooses to act next will determine what the consequences are. Simply catching your child in the act and saying, “AH HA, that’s a bad action, you lose a sticker!” doesn’t help your child learn to make good choices. It just makes them afraid of being caught. You need to give your child a warning, and allow him the chance to make good choices if he is to learn the lesson you are trying to teach. Teaching your son to think through his actions and make good choices with this method is a fine way to start teaching the basics, but I feel it is important to point out that this method is only a temporary measure until your child develops enough maturity and foresight to make their own decisions based on what is good for them in the long run. This method works pretty well when your child is 5 years old, but once they reach 15 years of age, you aren’t going to be able to influence their choices by offering stickers and prizes. When your child gains enough maturity and foresight to understand that their actions will affect their future then this method of teaching becomes a bit silly. At that point you will have to convince them to act a certain way because it is in their own self interest, not because they want stickers. Building Maturity Now that we have covered the basics of how to work with your child, and help them make effective choices which benefit them, we need to talk about helping your child build maturity. Since there are a dozen different definitions for the word, the first thing to do is define what I mean. For the purposes of this book, maturity is the process of being able to remain calm, and think about things from a rational perspective. It is the ability to evaluate what is really going on, and to then choose a course of action which brings about the best perceived result. And most importantly, maturity is realizing that you may not be doing things the best way possible. You have to admit that you may be making mistakes, and that you might need help. Maturity isn’t necessarily having all the information, and making perfect decisions P a g e | 127 all the time. Maturity is simply considering reality for what it is with as little bias as possible so that you can make an objective decision about how to act, or how to handle the circumstances. The way you can teach maturity is to guide your children through the process of working through things in a calm, rational way. And then encourage your children to do the same. Sitting down with your children to work out what causes a problem, and how to solve it, isn’t a once in a lifetime thing. It is a process that you are going to have to do with them many times. As life changes, and new challenges pop up, consider that an excellent opportunity to once again spend time having a mature, calm, reasonable conversation about how to make effective choices, and avoid the pitfalls. Over time your children will become more familiar with the process and they can become more active participants in determining the cause of the problems and looking for effective solutions. And after years of practice they will eventually become comfortable enough with the process that they will be able to make their own decisions, and come to their own conclusions based on a calm, rational evaluation of the circumstances. Perhaps the most important thing I can say here is that you cannot force maturity. There is no magic words, or special button you can hit to make your child mature. It takes a lot of time, a lot of patience, and most importantly it requires that your child want to be mature for his own reasons. You can’t make your child mature by punishing him when he is bad. You can’t make him mature by rewarding him when he is good. Your child has to choose to be mature as personal choice. He has to realize that part of maturity involves doing things the hard way, controlling his emotions, and making the difficult choices even when they require sacrifice. And he has to do this because he is aware of all the benefits that maturity brings, and he knows the pitfalls that come with being immature. All you can do is provide your child with an example of maturity, and let him know that while maturity may not always be the easy route, it is the route which works out the best in the long run. Your child is ultimately the one who is in control of his actions. You can try your best to motivate him to act properly, you can provide him with the tools to do so, and you can give him the opportunity. But you cannot act for him; he must make the choice himself. And thus, more than anything else, you need to work WITH your child, rather than AT them. Because when you work with your child, you can get their cooperation in solving the problems. Conversely, when you work at them, you don’t fix any of the underlying problems, and you don’t help your child to mature or grow. P a g e | 128 What About Socializing? If you have ever had a conversation about autism, you know that socializing is a topic which comes up. Parents want to know how to get their child to socialize more, how to get them to socialize properly, and all sorts of things. This is often based on the idea that the child will need to learn how to socialize properly if they are to have a productive and happy life. And I have no problem with parents wanting their children to live happy and productive lives. The problem is that an autistic person doesn’t usual socialize in a normal manner, and this can lead to a good bit of confusion. And this confusion can lead to irrational expectations, problems, and misunderstandings. And so, I have written this chapter in an effort to clear up some of that confusion. Perhaps the first thing to mention in this chapter is that socializing is the most complex thing to deal with in life. Every person in the world is an incredibly complex and unique individual with their own thoughts, personalities, and ideas. And socializing is the combination of many complex people put together in a complex system that defines how they interact. And when you take an incredibly complex person, and link them up to dozens of other complex people in an incredibly complex way, it becomes ridiculously complicated. I could offer a mathematical example about possible combinations and permutations. But, suffice it to say, socializing isn’t simple. I have already talked briefly about socializing in this book, and I have barely scratched the surface. There are hundreds of books out there, from a wide variety of authors, discussing everything from the proper use of idioms to proper conversational etiquette. And the fact is that all these books put together still don’t come close to explaining everything that there is to know about socializing. So, all that to say, this chapter will not tell you everything that you need to know about socializing. There is simply not enough room in this book to explain everything. What this chapter will do is provide some basic information, clear up some common misconceptions, and give you a good base to start from. Common Socializing Misconceptions Before we talk about the basics of socializing, it is important to address some of the common misconceptions, or myths regarding socializing. In order to lay a good foundation of understanding, we must first address the confusion and clear it out of the way. Otherwise, the foundation will not be set on firm ground. This brings me to the first myth regarding socializing, which is that you need to socialize A LOT in order to be happy. Normal people often think that unless you are popular, and go out with friends on a routine basis, you will not be happy. The truth is that you will be the most content when you get the amount of socialization that you P a g e | 129 want. This is a fairly strait forward and simple idea, but it often gets overlooked. To put it simply, if you want to spend your evenings alone, and only hang out with friends once a month for a few hours, then that is all you should do. If you want to be very social, and do things with friends every night, then that is what you should do. You don’t have to be very popular and socialize often if you don’t want to. And you don’t have to stay home and be by yourself if you don’t want to. The amount of socializing that each person needs to feel happy and content is unique to each person and you can’t make people more social, or less social then what comes naturally to them. This can create problems when parents look at their children who prefer to be alone instead of playing with the other children. They think to themselves, “O no! That’s horrible; my child isn’t playing with his peers." Or parents may look at their non social middle school child and think, “O no! My child isn’t playing on a sports team and engaging in other typical group activities.” And while I hate to disagree with others who think that ‘peer appropriate’ relationships are important, this isn’t a big deal. Your child is not required to spend time with his peers if he doesn’t want to. And any attempts to enforce it against the child’s objections are a bad idea. So leave your kid alone if he wants to be left alone. You can certainly encourage your child to try playing with the other children, but you can’t enforce or require it. The second myth is that spending time with other children will automatically teach your child what are known as ‘social skills’. When I use this term I am referring to the culturally expected methods of interacting with others. This may be true amongst normal people who tend to learn these sorts of things by osmosis, but autistic people don’t learn these things just by observing them. If your autistic child learned these sorts of things by just spending time around other people then he wouldn’t be considered autistic. Spending time with other people may allow your child to practice his social skills, and it will also allow him to observe other people in their natural environment. But if your child is to learn social skills he will have to do more than simply spend time around other people. He will have to take time to review what he has observed and analyze the patterns. The third myth is that your child needs to blend in with his peers, and act like they do, in order to interact effectively. And yes, I am harping on this note again. If I make this point a thousand times it will still be too few. To put it as simply as I can, your child does not need to blend in with everybody else in order to effectively interact with them. Everybody who knows me will tell you that I am not normal. My family thinks that I am strange; my friends think that I am strange; my co-workers thought I was strange. But despite the fact that I seem strange to them, we are still able to have a functional and mutually beneficial relationship. I may not spend time talking about sports, or doing other typical social bonding activities, but I can still work with, and get along with others. P a g e | 130 The fourth myth is that your child needs to do typical activities if he is to have friends. Common wisdom is that boys need to play sports, or do other such things in order to find friends. The truth is that friends can be found over any shared activity. It doesn’t have to be sports. Your child may enjoy spending time with other children who also enjoy playing video games, board games, card games, table top games, drawing, sculpting, building with k’nex, and so forth. When I was in second grade I liked to bring my stuffed animals to school and play with my friend who also brought his stuffed animals. And yes, I am aware how unusual that seems, but it was fun and enjoyable for both me and my friend. You don’t always have to do the normal things to find friends. Effective Socializing So now that we have cleared up some of the common myths, let’s look at what needs to be done in order to get along with other people effectively. If you have done any research into autism, you will be familiar with the term ‘social skills’. Social skills refer to the ability to effectively interact with other people. And I will be the first to say that knowing how to effectively interact with other people is a very important, and useful, skill. I will also admit that most autistic people struggle with effectively interacting with others, thus prompting the idea that autistic children need to be taught social skills. The problem is that there is some confusion as to what the term ‘social skills’ actually means. Some people feel that teaching a child ‘social skills’ means teaching them how to act normal on a superficial level. In other words, they feel that autistic people need to be taught things like how to make eye contact, modulate their voice properly, make small talk, and so forth. They assume that if autistic people learn how to act normal on a superficial level, then that will make them fit in better, have friends, and be able to live a more productive, and fulfilling life. The problem is that this is a false idea. Pretending to be something you aren’t does not make you fit in, nor does it improve relationships. Allow me to explain how this works. If your child tries to blend in with normal people, act normal, talk normal, and so forth, then it will have one of two results. The first result is that your child will be able to pull off the normal person act decently well, and other people will believe that he is normal. And this works great, right up until the point where it blows up in his face. When you have to constantly put forth effort and pretend to be somebody that you aren’t, it takes a lot of energy. And as I explained earlier, the more energy your child has to put into getting through the day, the worse it will affect their coping ability. Furthermore, if you appear normal, then everybody will expect you to act normal. People will expect you to attend loud parties, go to group events, hang out, socialize, and so forth. If you say no, then it negatively affects you because people assume you are just being rude and dismissive. After all, P a g e | 131 normal people don’t turn down invitations like that. If you say yes, then you wind up causing yourself a lot more problems; because in your effort to appear normal you get dragged along to a bunch of activities which aren’t very ‘autism friendly’. Furthermore, when you live with a fake persona, you eventually find yourself with nobody who knows or accepts you for who you really are. All they are interested in is your fake persona, and you have no real friends who actually know, understand, or accept you. The other way this can go doesn’t work out much better. If your child tries to blend in with normal people, act normal, talk normal, and so forth, then there is no guarantee that they are going to succeed. In that case, your child puts forth a lot of effort trying to pretend to be somebody else; but they do it so poorly that everybody sees right through the fake persona. In this situation, they don’t appear normal enough to blend in with the normal people. Everybody just thinks that they are creepy and fake, and nobody is willing to associate with them. So they spend all their time trying to change who they are to appease others, only to fail miserably and have everybody mock them for it. Whether or not you can successful act normal doesn’t change the result. In both cases, you only wind up causing yourself problems, and you don’t make any real friends who accept you for who you are. It is important to mention that learning how to act normal on a superficial level is not always a bad thing. There are some situations where it pays to come across as ‘normal’, such as job interviews. In these situations it may be a good idea for your child to try making eye contact, smiling properly, modulating his voice, etc. I can generally pull off a decent normal person impression for about an hour or so if I need to. It isn’t perfect, but the other people will just think that I am a bit tired, which is better than what other impressions they could get. However, while learning to act normal on a superficial level may be good for interviews, it is not a good idea to try living your life that way. But this brings us back to the original question; how do you teach your child to interact with other people effectively? As I have just mentioned, learning how to act normal on a superficial level is not always a bad thing, but it isn’t going to help solve the problems that autistic people face with socializing. That doesn’t mean that you should entirely abandon the idea of teaching your child social skills; it just means that you need to properly define what your child needs to learn. So then, what does your child need to learn? For starters, your child needs to understand that other people have minds of their own, and as such they will enjoy certain things and dislike other things. Your child also needs to understand that what is fun for him isn’t always fun or enjoyable for others. And what he dislikes isn’t always bothersome to other people. As I said before in this book, you normal people seem very strange. I don’t mean that as an insult, I just mean that you don’t make a lot of sense from my perspective. You don’t like the things that I like, you like things I dislike, and I have no idea why in the world you act that way. But I do know that you have your own P a g e | 132 personalities, and your personality is just as valid as mine. And if I want you to respect my desires, I must also respect your desires, even if they don’t make any sense to me. This idea is the foundation upon which successful socialization is built. All too often parents worry only about what they can see on the surface. They worry that the child isn’t saying hello enough, or isn’t making proper eye contact. These are just simple cultural issues that your child can learn with practice. What is important is that you lay the foundation so your son understands that while other people are different, they are not necessarily worse. You normal people may be crazy, but you still deserve respect. And your child must learn to respect your craziness if he is to get along with the rest of the normal population. This means that your child should try to accommodate and be considerate of what bothers normal people so that he can avoid causing unnecessary problems. For example, your son should learn to respect other people’s personal space. He should learn to be respectful of other people’s property and possessions. And he should learn to avoid saying or doing things which cause other people to have issues. He shouldn’t do this because of some cultural obligation, or societal pressure. He should be considerate, and accommodate the quirks normal people have, because he understands the importance of mutual respect and wants others to treat him the same way. You can teach your child how to act in a superficially acceptable way for years and it won’t do him any good if you don’t build it on a foundation of mutual respect for others. Your son has to want to be respectful towards others for his own reasons if he is to interact with others effectively. Even if he doesn’t make perfect eye contact, and doesn’t say things with the optimal tone of voice, trying to be respectful of others when possible will make up for the vast majority of social gaffes. Most people are willing to accept others who come across as a bit odd as long as they show respect in the process. So, how can you help your child with this? To put it simply, try to teach your child how other people think. The more he knows about other people, the better he will be able to understand them, and know what bothers them. For example, the next time your child does something which comes across as rude explain how the other person felt and why. If your child is like most autistic children then they will probably say or do things which violate social norms simply because they don’t know what the social norms are, or why they exist. You can help your child by explaining what went wrong and, more importantly, why the other person felt offended. Simply telling your child ‘actions XYZ are bad’ doesn’t help them know why it is a problem, or what to do differently in the future. Teach your child all that you can about how people operate. Talk about things like psychology, sociology, anthropology, and economics. Perhaps economics might be a stretch, but I happen to think that understanding micro and macro economics really allows you to P a g e | 133 understand how people operate. In any case, the more you can teach your child about the actions, ideas, preferences, cultures, and religions of other people, the more they will understand. Your child may never think like a normal person, but the more he understands what drives people, the more he will be able to predicts, and peacefully co-exist with others. Keep in mind that you shouldn’t be lecturing your child about everything that he does wrong. The idea is that you are supposed to help your child by explaining things which confuse him, not berate him and insult him every time he makes a social faux pas. There will be some times when your child doesn’t want you to interfere and tell him how to handle himself, and you need to respect that. Your child may make quite a few social mistakes, but you are not going to accomplish anything by harassing him and making him overly self conscious. It is your child’s decision whether or not to accept your help. If he wants help and explanation then please do help him out. But if he wants you to stop correcting his mistakes then don’t bother him. He is going to have to learn how to act on his own eventually. If you want to teach your child a specific social custom like saying thank you or please then make sure they understand why those words are used and for what purpose. Constantly reminding your child to say please isn’t going to make them understand why manners are important or what purpose the manners serve. The only thing that will teach your child to do is parrot back the words when given the cue. Things like manners should be explained as ways to show respect and kindness towards others, not as cultural obligations that are followed without meaning or purpose. This applies to everything else regarding socializing. If you want your child to learn personal space or privacy then you need to explain why it is important and what purpose it serves. You can tell your child to give the other person personal space a hundred times in a hundred different ways, but it won’t do him any good if he doesn’t understand the reason why people need personal space. It will probably take your child a bit of time to learn how normal people operate, and get a feel for how they work. Even after decades of learning there are still things about normal people which don’t make much sense to me. But I have picked up the basics required for mutually beneficial and effective interaction. Just keep teaching your children how normal people operate, and why they think the way that they do. Eventually your child will be able to better understand and work with others. But as you teach, make sure that you focus on the how and the why. Simply training your child to say please or do other superficial stuff without explaining the why is a waste of time at best. Non Verbal Communication Another concern that commonly comes up in regards to autistic children and socializing is what to do about non verbal communication. Non verbal communication is everything that P a g e | 134 people communicate which isn’t based on words alone. It includes things like eye contact, body posture, tone of voice, and all that other stuff. Several studies have tried to determine how much of human communication is non verbal. Some studies claim as much as 93% of all human communication is non verbal, other studies indicate it is between 50% and 65%. In many cases, the topic of discussion will change the percentage. Discussing the budget at work is generally less dependent on body language then other, more social, conversations. But regardless of the conversation, a good portion of what is communicated between people seems to be dependent on something other than the words used. Because of this, many parents feel as though it is important to teach their child about non verbal body language; not just what to say, but how to say it. And I will agree that teaching your child the basics is a good idea. That way he can avoid doing distracting things like flailing his arms around randomly while he talks. While flailing his arms randomly may be fun, it would be a bit distracting and likely counter-productive to the conversation. But that being said, trying to get your child to use the ‘proper’ non verbal communication is probably more effort than it is worth. From my own personal experience, I have enough problems just getting words out in the right order. I don’t have enough excess processing capability to also make sure that the words have the right emphasis, inflection, and so forth. Not to mention that I would also have to think about where to look, how to look, how to sit, how to hold my arms and all that other stuff. Trying to keep track of that many things at once is more then I can handle. I just tend to focus on getting the words out in the right order and not doing anything obviously problematic with my body language (I.E. no shaking my fists or spinning in circles during a conversation). As far as the ‘receptive’ non verbal communication (i.e. what you do when the other person is talking) I tend to focus on what they are saying and what tone of voice they use. I also tend to look at people’s lips because it can be difficult to determine what people are saying by hearing alone. It is fairly easy to understand people in a quiet, one on one, environment, but when you get into a noisy environment it becomes difficult to filter out the background noise. I find that watching people’s lips is generally helpful in figuring out what they are saying when in a noisy environment. My experience is that you can generally figure out what people want, and what they mean by their words and their tone. The words tell you what they want, and the tone tells you what emotion they are trying to convey. I am probably missing out on a few cues from body posture, but I haven’t had any major problems that I am aware of. If I really wanted to do so, I could also check a person’s body posture and facial expressions, but then again I run into the problem of doing too many things at once. I could watch their bodies as they talk, but then I wouldn’t be listening to what they are saying. So, given the limited resources at my disposal I have found that listening to what they are saying is the most effective way to discern what they mean, followed shortly by the way they say it. P a g e | 135 Explaining Peculiarities If your child is anything like me he will probably have a few difficulties that make behaving normal impractical. When faced with these situations, the best scenario is to be open and up front about the inability and state it in a strait forward fashion. For example, I am face blind and I deal with this by telling everybody I meet as soon as it is practical. When I meet somebody for the first time I introduce myself as normal and we go from there. The next time I meet them, the conversation goes like this: Other person: Hello. Me: Hello, nice to meet you. Other person: Umm, we have met before Me: O, I'm sorry. I'm face blind so I can't recognize faces. Other person: Wait, you can't recognize people? Me: Yeah, I can't even recognize my own brother. But I will learn your voice eventually. So if I introduce myself to you about a dozen more times don't be surprised. Other person: Umm, ok. Likewise, I tell people that I am introverted and prefer to be alone when possible. I make sure to point out that I am not misanthropic, I just like my solitude. I also tell people that I don’t get out and socialize much, so I don’t have much practice with the socializing process. I have found that as long as I am strait forward, and apologize for any inconvenience, most people don’t mind my particular quirks. The Truth Hurts I have struggled with how to write this section. I have tried writing it several different ways, and I can’t seem to explain this point without seeming somewhat negative and pessimistic. But the problem is that I can’t think of any way to put a good spin on this. The truth is that many people are not very nice. My personal belief is that it is the responsibility of all people to learn to respect, and understand others. I feel that mutual respect is the foundation upon which any successful relationship is built. Unfortunately, not everybody feels the need to treat other people with respect. And due to the way our society works, people who are different often get the least amount of respect. What this means is that your child will often find themselves being treated poorly by others through no fault of their own. And this is not a very fun position to be in. I could go into P a g e | 136 examples about being excluded, bullied, or looked down upon by others, but I am pretty sure you know what I am talking about. The question most people have is what to do about this. And the unfortunate answer is that you really can’t do much of anything. The problem isn’t on your child’s end. I talked about this earlier in the book, and the truth is that if the other person wants to be a snob, and reject others because they are different, then that is their fault. You aren’t going to accomplish anything by trying to change who you are to impress them. Your child’s best course of action is to learn that these other people are not worth listening to. I don’t mean that your child should develop a superiority complex, and feel that he is better than others. But he does need to recognize when other people are being immature and rude so that he can see it for what it really is. When they insult or bother him, it is just a sign that they lack the maturity and the respect that all people should have, and your child shouldn’t give credence to their childish words and actions. It is best to simply ignore them, or tell them to go away, even if you have to be rude in the process. It may not be the kindest thing to say, but when other people fail to treat him with the respect that he deserves as a person, than he shouldn’t feel too bad about reciprocating the same way. Unfortunately, immature people don’t just stop at name calling and taunting. There are plenty of people out in the world who will gladly take advantage of your child. And it is important that your child realize this. All too often, parents tend to ignore the darker side of humanity. They will gladly focus on superficial things, and teach their children how to make small talk; seemingly because they think that being sociable will solve all the problems. But they almost never address the issue of avoiding scam artists, or other low lives, who prey on those who are vulnerable. You aren’t doing your child any favors by not talking about these problems as though they don’t exist. The real world may not be friendly, but that doesn’t mean you should ignore it and hope that it doesn’t hurt you. You need to teach your child to be vigilant for those who would like to harm him, and take advantage of him. You need to teach him to look out for deals that look too good to be true. You need to teach him how to spot a scam, because people will try to scam him. And if he doesn’t know what to look out for, he will fall prey to it. P a g e | 137 What About Stimming? Much like socializing, another common topic that comes up when discussing autism is ‘stimming’. For those who don’t know, stimming is the name given to any apparently non- functional, repetitive action. Since that is pretty vague, I shall give a few examples of what qualifies as stimming. ‘Stims’ may include things like rocking back and forth, twirling or pulling at hair, swaying from side to side, spinning in circles, pacing back and forth, flapping arms, or picking at skin. Conversely, breathing and blinking are both repetitive, but since they serve a definite purpose, they are not considered stims. Stimming can also be used to describe more OCD like behaviors such as lining things up in strait lines. This has a separate cause, but it is still called stimming by most people despite the different causes for it. Everybody will ‘stim’ occasionally. For example, when people are bored they might twiddle their thumbs, play with their hair, or tap their fingers on the table. The difference between normal stims and autism stims is usually in the magnitude and frequency. While a normal person might just tap their fingers, an autistic person will spin around the room (being much more obvious), and will also do this sort of thing more often. So this begs the question of why. As with most things regarding the functioning of the brain there is no clear consensus. The best explanation available today is that stimming is the body’s way of figuring out what everything feels like. Sensory Feedback When we are first born, we don’t know what sensory inputs mean what. For example, a young child who is still learning to walk may have the muscle strength needed to walk upright, but whenever they try to stand up they keep falling over. This is because they haven’t figured out their own senses yet. They don’t know that pressure on their heels means they are falling back, or that pressure on their toes means that they are falling forward. They haven’t developed those sensory feedback skills yet. In order for them to develop this sensory feedback (and thus be able to control their body) a young child will seek out sensory input in order to test and ‘calibrate’ all their senses. This is why a toddler will put almost everything in their mouth. They are trying to develop their senses of taste, and touch. Likewise, young children will try to find every opportunity to balance on things such as curbs or other narrow beams. This is also why playground equipment such merry-go-rounds, swings, and other similar equipment are so popular. It gives young children an opportunity to develop their tactile feedback which is something they feel biologically compelled to do. A young child doesn’t play on the swing set because he has calculated the amount of information he needs to develop his senses and P a g e | 138 determines that he still needs more practice. A young child likes to play on a swing because he has a subconscious, instinctual desire to develop his senses, which makes activities like trampolines or swings fun. As people age, and become more familiar with their senses, they stop getting the same enjoyment out of things like balancing on curbs, or swinging on a swing set. While a 2 year old may really enjoy balancing or swinging, that is only because they have an instinctual desire to test out their senses and see what things feel like. Once people grow up, and learn what things feel like, they no longer have any instinctual desire to test their senses. As such, swing sets and merry-go-rounds are no longer as much fun as they once were in childhood. The reason autistic people stim is that they remain stuck in the toddler phase of developing their senses. In other words, their brain hasn’t figured out what everything feels like yet. As with most autistic things, this can be attributed to the brain not functioning and developing as it normally would. When the child plays on the swing, or spins around it provides their brain with tactile feedback. But unlike a normal person who would learn from this feedback, the autistic person has a loose connection somewhere which causes this information to be lost, or misinterpreted. This means that their senses never get ‘calibrated’ and the sensory seeking behavior continues much like it does in a toddler. This stimming can also be seen with more than just tactile feedback. Just as the sense of touch which needs to be calibrated, so do the other senses. So your child may walk around making noises, and talking to themselves just to hear themselves make noise. It is a way to calibrate their auditory processing. When a normal toddler does this it is known as baby talk, or babbling. When an older child keeps repeating the same words over and over, or making other sounds it is just their attempt to satisfy the bodies’ need for feedback. Likewise, your child may wave things back and forth in front of their eyes, in an attempt to calibrate their visual processing. Stimming doesn’t always have to be a physical thing such as rocking back and forth. This explains why stimming behavior seems to become more obvious as the child grows older. When your one year old son spins around in circles, or shifts his weight back and forth, it is considered normal one year old behavior. But when your autistic eight year old does it, it seems a bit odd and thus gets a special label known as ‘stimming’. In reality, your older child is doing the exact same thing that a young toddler would do, which is to instinctively test out their senses. And much like a young toddler, an autistic person doesn’t consciously choose when to stim. It is just an instinctual process that happens automatically. It is very common for an autistic person to rock back and forth without ever being aware of it, just like a young toddler would. From a more personal standpoint, I can tell you that I tend to stim without ever thinking about it. It is common for me to pick at the skin on my hands while watching TV. I don’t even P a g e | 139 notice that I am doing it until a commercial comes on and I look down to see what my hands are doing. I will almost always be doing something with my hands. I am either rubbing them together, or picking at some skin, or bending my fingers back, or playing with some toy. It isn’t as though I try to do these things; my hands just tend to do them automatically when I am not paying attention. The best analogy I can give is that stimming is like breathing. You can always think about your breathing and manually control when you breathe in and out. But as soon as you focus on something else your subconscious takes over again and you start breathing automatically. Likewise, I can always pay attention to what I am doing and stop stimming, but as soon as I shift my focus to something else my hands will just start doing it again because I have to focus on them to make them stop. OCD Tendencies Some people believe that obsessive behaviors such as lining up objects, or doing things the same way every time, are types of stim. And this is a plausible categorization because the OCD behaviors are usually repetitive and non functional. But it is important to understand that they have a different source than the sensory feedback based stims. These actions instead derive from the desire to have an order and routine. As I stated in previous chapters, having a predictable order and routine makes things simple, and easy to understand, which can help to alleviate the anxiety due to uncertainty. It can also just be enjoyable and reassuring to have everything in its proper place. For the most part, there is nothing harmful about having a set order and routine when doing things. It can make things much easier and less stressful, but there may be some occasions where a deviation from the routine in needed, and as such these OCD tendencies can cause problems. The Benefits Of Stimming The next topic to discuss is what benefits stimming can have. At first glance, stimming seems to be a fairly silly and useless waste of time. The very definition of stimming states that the act is non functional, so what possible benefits could there be? The answer is that the benefits of stimming are mainly emotional in nature. In other words, they just make the autistic person feel good. As I just mentioned, autistic people stim because there is an instinctual desire to do so. Just as people get hungry and feel the need to eat, autistic people feel the need to stim. The desire is on a subconscious level, so there isn’t much that can be done to stop the feeling. You can certainly learn to delay stimming, and do it later when it is less problematic, but you can’t completely get rid of the desire, any more then you can get rid of hunger. So when your child stims it allows him to fulfill an instinctual need, and as such can be very enjoyable, just like eating good food. P a g e | 140 Stimming is also very useful at calming a person. I don’t know exactly why this is, but I assume it is the same reason people feel better when they eat comfort food. Satisfying a subconscious desire makes us feel better, and helps us to calm down. That is why some people will eat ice cream when they feel poorly. Stimming can also help out in a stressful situation because it helps to get you out of a problematic mindset. When you are concentrating on rocking back and forth then you have something to focus on and can block out the chaotic environment easier. So to sum it up, stimming makes you feel better, and it also helps you to deal with stress. The Problems With Stimming Now that we have covered the benefits of stimming, it is time to look at the problems associated with it. The first problem caused by stimming is that it looks weird. Personally, I am of the opinion that simply looking strange is not a problem in and of itself. There is nothing wrong with looking a bit odd. But when looking odd causes other people to harass you, it becomes a problem. The second problem that may come from stimming is that it can be annoying to other people. And the third problem with stimming is that it can be physically harmful to the child. So let’s look at these in more detail. The first problem, as I just mentioned, is that stimming looks weird. This can cause problems if people observe the weird behavior and make false assumptions because of it. For example, appearing weird at a job interview makes you less likely to get the job. Looking weird can also cause some problems when trying to make a good first impression. The problem in this situation is due to other people assuming the worst as opposed to an actual problem that the autistic person has. But none the less, since the autistic person has to live with the false ideas of others he may want to think about how to appear as though he is not crazy when trying to make a good first impression. The second problem is that stimming can sometimes be annoying to other people. For example, spinning around in circles, flapping wildly, or making noises isn’t a problem when your child is in their room alone. But it is very distracting and bothersome to have your child do that in the middle of class. Likewise, your child may have stims that are problematic, such as getting into the soap bottle and squirting it all around because they like the feeling of the liquid soap. Or, your child’s stims may be annoying because he is chewing on his shirt and thus ruining good clothes. Again, these stims usually aren’t problematic in and of themselves, but they can cause problems for other people. And in the interest of society at large, your child should probably try to refrain from actions which are problematic for other people. And lastly, the third problem with stimming is that it can sometimes be physically harmful to the child. As I mentioned earlier, your child may have an unusual sense of pain. P a g e | 141 What should be painful instead just feels weird. And when somebody doesn’t feel pain normally, they may pick at their skin or bounce their head off things, just because they like the way it feels. This can partially be explained by the fact that endorphins are released when a person gets injured. These endorphins can produce a feeling of well being, and enjoyment. The purpose of these endorphins is to counteract the pain, and allow you to function even though you are injured. But in the absence of pain, these endorphins merely serve as a quick way to feel good. This can result in the person harming themselves, especially when feeling very stressed out, as a quick way to alleviate stress. Obviously, you don’t want your child to hurt themselves and cause permanent damage. That isn’t a good thing for anybody. But that doesn’t mean that ALL self injurious behaviors are incredibly problematic and need to be stopped immediately. If your child is merely picking at their hands, or chewing on their lip then you don’t need to worry much about it. I pick at my hands, and I have the scars to prove it. But, I have gotten pretty far in life with scarred hands. Your child can too. What is important is that if your child is going to injure himself, then he needs to take precautions to avoid serious problems. For simply picking at the skin, this just means carrying around band aids and using them when you draw blood. If your child wants to bang his head against something, then choose something soft (I like my bed personally). As long as your child takes precautions to avoid serious injury, it shouldn’t be a problem. To Stim Or Not To Stim So now that we have covered the basics of stimming, we are left with the question of when is stimming a good idea. As I discussed in the previous sections there are indeed some problems with stimming, but that doesn’t mean you should stop stimming altogether. That isn’t feasible, and usually makes situations harder to deal with. Instead, the best way that I have found to handle stimming is to figure out which level of stimming is appropriate to the situation. For example, there are certain situations where appearing unusual can be detrimental. The usual example would be interviews, but there are other times when a first impression counts. In these situations it is reasonable to try to avoid stimming if at all possible. Usually these only last an hour, and thus this is a reasonable goal. If stimming cannot be avoided, then a non obvious stim should be employed. For example, rubbing your fingers together, or wiggling your toes inside your shoe. Swirling your tongue around inside your mouth is impossible to notice if done right. Next on the list is being out in public. When you go to school and sit in class, or go out shopping, or just spend time in public, you need to be slightly reserved with stimming, but not as much as you would be in an interview setting. It is a good idea to avoid any stimming which P a g e | 142 is loud, or attention drawing, such as rocking back and forth so much that it distracts the people behind you. In these situations, mild stimming would probably be a better choice. For example: rubbing your arms, twiddling your fingers, fidgeting slightly in the seat, rubbing your legs together, bending your fingers back, twirling your hair, or maybe picking at your skin a little bit. The idea here is to stim in a way which is not distracting to other people. So keeping quiet and not making any large or rapid movement is the key. Further down on the list is stimming in groups of understanding, friendly people. For example: when at home with family, or with a few good friends. In these circumstances, you can be a bit more relaxed about stimming and do some more obvious stims, such as rocking back and forth in an exaggerated manner, pacing back and forth, humming quietly, or just acting in such a way that might draw unwanted attention if done in public. My favorite stim from this category is pacing back and forth. I do it very often when at home and it helps me to think. I also tend to sneak it in at work by disguising it as a trip to the drinking fountain. And the last category on this list is stimming when in private. This is mainly done at home when there is nobody around to be bothered. When you’re alone, feel free to do whatever you like. Examples of this include making loud noises, bouncing off the walls (literally), and beat boxing. These more obvious stims can also be done at home with other family members around, but as they are somewhat distracting, it is best done in a separate room. Family members generally don’t enjoy loud singing or beat boxing when they are trying to watch TV. Stimming vs. Self Injury A somewhat common misconception is that all forms of self injurious behaviors are stims. People tend to view picking at skin the same way they view having a meltdown and hitting yourself. These two are very different things. Stimming style self injury is mainly done on an almost automatic level. Whenever I am sitting still, I usually have to do something with my hands. If nothing else is available, I just pick at the skin. I don’t intentionally try to hurt myself; I just need to do something with my hands. Conversely, what many people think of when they hear ‘self injury’ is the more dramatic and violent self injuries that can be seen in a meltdown. A self injurious stim is not intentionally self injurious, but a meltdown induced self injury is done with the purpose of hurting one’s self. If your child is having meltdown induced violent aggression towards themselves (or others), then you need to find them a better way of dealing with the stress and preventing the meltdowns from happening. If you can’t avoid the meltdown, then you need to work on a better way to handle them when they occur (i.e. quiet retreat). But that is a completely different problem than simply picking at your skin because it feels good. P a g e | 143 What Can Parents Do To Help? Since this book is written for parents with the hope of providing useful advice, I figured I would add a section about things that parents can do to help their child stim effectively. As I mentioned earlier, stimming is an instinctual desire. As such, trying to stop it completely would be like telling somebody not to eat or sleep. It doesn’t work. So the first thing that parents can do is to be understanding when their child wants to stim. It isn’t unreasonable to ask your child to go stim someplace else if he is bothering you, but try not to discourage your child from engaging in enjoyable stimming while he is relaxing at home. The second thing that parents can do is give their children opportunities and options to stim effectively. If your child is the kind of person who likes to move around a lot, pace back and forth, and spin, then you can help your child out by giving him an opportunity to use up all his energy in a safe, enjoyable way. Mini-trampolines are very popular for this purpose, and are generally recommended by most that use them. Other options include things like swing sets, or climbing trees. Likewise, you could always take your child to the local park and let him go loose on the playground. If your child is the kind of person who likes to chew on things then get them something to chew. Gum is a good option, as are straws, or chewy necklaces. If you notice your child is doing something a lot, then you should try to find a way in which they can do it more effectively, in a non destructive and safe manner. You could also help out your child by getting him some stim toys. These are just little items which your child can play with when he is feeling stimmy. Options include: rubber balls, elastic bungee cord, play doh, modeling clay, or so forth. For more options, consider here: http://www.officeplayground.com/Fidget-Toys-C102.aspx (I like the Tangles) Whatever stim toys you chose to go with is up to you and your child. But try to get stim toys that correspond to the way your child usually stims. If he likes to move around a lot then a swing set may be a better idea then getting him play doh. If he likes to rub his hands together, then play doh may be the better option. Of course if your child does both, then feel free to go with the play doh and the swing. If your child is more of a visual stimmer, then consider something like a lava lamp, or perhaps something with lights. There is also a growing trend to use compression shirts (stretchy shirts that hug the body to provide pressure), and weighted vests as a way to provide sensory feedback. I personally don’t have a weighted vest or compression shirt so I can’t speak to the effectiveness, but some people say they are very helpful. These are often recommended by the same people who recommend trampolines, so it is reasonable to assume they are more useful for the children who like to move around a lot. If you would like more information, ideas, or advice P a g e | 144 then consider looking up the term ‘sensory diet’ on Google. You will find plenty of other people out there who have found effective stimming aids that help out. If you are looking to purchase stimming accessories, then you need to be cautious of overpriced merchandise. There are plenty of people out there who will gladly take advantage of parental panic and charge ridiculous prices for fancy labels that mean nothing. For example, you can go to any sports store and find a weighted vest, or weighted belt, in the exercise section for $15. Or, you could go online and find an ‘autism therapy, ABA approved, vestibular feedback sensory weighted vest’ for $80. It is the exact same thing, but putting a fancy label on it makes it cost several times more. Likewise, a compression shirt is available in the clothing section of a sports store for only $15. Getting an ‘autism therapy pressure vest’ will cost many times more. If you want to make your child a swing then just go to the hardware store and purchase some rope and a board. Building your own swing and hanging it off a try branch will cost you a few bucks. Conversely, you could get a ‘sensory integration treatment swing-o-matic’ for absurdly more. The point that I am trying to make is that you don’t need to go into debt buying specialty equipment just because it has the name ‘autism therapy’ on it. The standard toys and items that sell at sporting stores work just as fine at a reasonable price. P a g e | 145 What About Treatment Programs? There are many treatment programs out there which are marketed as being helpful for autistic children. Common programs include ABA therapy, floor time therapy, Sensory integration therapy, play therapy, occupational therapy, social skills training, speech therapy, TEACCH therapy, nuerofeedback therapy, and much more. And many parents are wondering what therapy, if any, they should get their child into. Which one of these therapies works, and why do certain therapies work while others don’t? Which one of these are worth spending money on, and which one of these have a lasting affect? Unfortunately, I cannot answer these questions for several reasons. For starters, therapies are often poorly defined, and vary greatly from person to person. The Food and Drug Administration (FDA) keeps a pretty close watch on the pharmaceutical industry. As such, when you pick up a bottle of aspirin you know exactly what is in that bottle, and you know that it has been verified. By comparison, there is no FDA when it comes to autism therapies. As such, you can go to a hundred different therapists who each claim to use ‘ABA treatment techniques’ and you will get a hundred different therapies. Even treatment centers, which have multiple people on staff, will vary how they treat your child based on which therapist your child works with. Some therapist will just do whatever they want and put a label ‘ABA therapy’ on it so that parents are more likely to trust that it is a good therapy. As it is, terms like ‘ABA therapy’ have become nothing more than marketing terms like JUMBO or SALE. They really don’t reflect what the actual treatment is like, any more than seeing the word sale guarantees a good price. Another reason it would be a bad idea to recommend one specific treatment strategy is because no two children are alike. One child may benefit from learning how to talk via simple repetition training methods. Other autistic children may need help with other issues like learning how to properly handle their emotions. Still other children may need help in other areas. So to say that every child needs speech therapy, or occupational therapy, or any one particular therapy is downright false. If somebody tries to sell you a therapy because ‘autistic children benefit from this therapy’, then they are generalizing all autistic people and overlooking the complexity of humanity. As such, saying that therapy ABC is better than therapy XYZ would be fairly silly and a bit useless. So, rather than telling you which specific therapies are useful, I am instead going to give you a list of what to consider when it comes to therapy. I will also talk about which aspects of therapy are important, and how to figure out if a therapy will be beneficial. You can then take this information and use it to consider your unique situation. Hopefully, this will allow you to make your own choices about how to best handle your child and provide them with any assistance that you feel would help. P a g e | 146 Your Child Does Not Need Perfect, Professional Parenting As I mentioned earlier in this book, many parents treat autism as though it were cancer. And when a child is diagnosed with cancer, the best thing you can do is take them to a well trained professional who will coordinate treatment. This is because the cancer experts know how to best handle the situation. Unfortunately, panicked parents will use the same approach with autism. When their child is diagnosed as autistic, they will sign them up for 60 hours per week of therapy with trained ‘experts’ because the parents believe that only the ‘experts’ know what to do. The parents then just panic and freak out and hope everything works out. This shouldn’t be your approach. I have nothing against consulting other experienced people to help you understand what is going on, but you don’t need to panic and turn over the job of raising your child to somebody else who claims to be an expert. Just because somebody has a fancy job title doesn’t mean that they have some secret knowledge you don’t. The average psychologist’s knowledge of autism is based on nothing more than a few books and some observations of a few young autistic children. Since you have observed your autistic child for much longer than any psychologist, and you have also read this book, you now have just as much knowledge and expertise as they do. I am not saying that the trained ‘experts’ who are trying to sell you 60 hours of therapy per week are intentionally trying to hurt your child; I am just saying that your child doesn’t need to be raised by somebody with a fancy degree. What your child needs is simply somebody who will understand him, and help him out a bit; and you don’t need a degree in psychology to do that. You, the parent, are fully capable of taking care of your own child. Also, as part of this idea, your child does not need a perfect parent either. Too many parents out there worry about doing absolutely everything right all the time. They worry that they aren’t helping their child enough, or helping them too much. They worry that they aren’t giving their child the right supports, or that they aren’t teaching enough independence. They think that they have to use the exact correct parenting technique all the time, and any deviation from that perfect parenting will spell doom for the child. This isn’t true. I didn’t get perfect parenting when I was young. And I know plenty of other autistic adults out there who didn’t get perfect parenting when they were young either. In fact, most autistic adults today grew up in the culture where there was no such thing as a learning disability, or neurological difference. A few decades ago, the prevailing wisdom was that if you weren’t severely mentally retarded, there was nothing wrong with you. And as such, any failure to conform, or unusual behavior, was considered a personality flaw and required punishment in order to fix. Most autistic adults today had their parents try to beat the autism out of them and berated, insulted, and harassed them for every difficulty they had. Yet despite that many of us still wound up maturing, getting a job, and living on our own. Children are more resilient than people think. P a g e | 147 So if you happen to mess up on occasion, or fail to control your temper, don’t think all hope is lost. The fact is that if you just try to understand your child, and treat him with a little bit of patience, then you will be providing your child with far better treatment than many successful adults have received. You don’t need to be a perfect, professionally trained, parent in order to help your child. You just need to do the best you can. Focus On The Important Things If you are looking to help your child, then the important thing to focus on is focusing on the important things. Now that is more than just clever word play, it is also good advice. One of the major mistakes that parents make, when deciding how to help their child, is focusing on short sited, milestone based goals. You shouldn’t be comparing your child to his peers, writing down a list of differences, and then declaring those to be your therapy objectives. That would be like comparing a boy to a girl, writing down all the differences, and then trying different therapies to make the boy act more like a girl. It is a silly concept at best, and traumatizing at the worst. Your goal should be to provide your child with the skills he needs to lead an independent, productive, and enjoyable life, not make him fit the mold of normalcy. For example, a fairly common problem that occurs with autism is difficulty when writing by hand. It is hard, it is painful, and it takes a lot of time. This is often called dysgraphia, or loose joints. Whatever the label, many parents will make a big deal out of this. They will spend lots of time, effort, and energy trying to fix this problem. They will sign their child up for occupational therapy, physical therapy, and get them into programs designed to increase their writing ability such as the common ‘handwriting without tears’. The primary reason that parents tend to focus on this is because handwriting is one of the few measurable skills that a young child has. It is easy to look at a child’s handwriting and determine whether or not it is sloppy, and how it compares to his peers. All the teacher needs to say is that the child is not hitting his expected handwriting milestones and parents will panic and start looking for ways to solve this horrific problem. I can tell you from experience that handwriting isn’t as important as people seem to think. My writing is horribly bad. In fact, my 6 year old cousin can write neater and faster then I can. And somehow, despite my horrible writing, I am doing fine at life. This is because writing things by hand is an outdated, seldom used, skill. If I have something to communicate, I will write an email. If I have something I want to report, I will type it on the computer. If I want to communicate something, there are a dozen different ways I can do so that don’t involve writing notes by hand. The only time I write things out by hand is when I have to fill out forms at the doctor’s office, or something similar. So instead of taking 5 minutes to neatly fill out a form, I will take 30 minutes to fill out the form sloppily. And this situation occurs maybe a few times P a g e | 148 per year. This means that my total disadvantage, due to having poor handwriting, is that I have a minor inconvenience a few times per year. Yet despite my poor handwriting being a non issue, I was still forced to practice my handwriting for many long hours when I was young. And the only thing I ever got out of it was a cramped hand, and a strong dislike for my teacher and writing in general. I still look back on all those many hours I wasted, frustrated and in pain while practicing my handwriting, and I have to wonder what it was for. Even if it had somehow improved my handwriting, I still don’t think it would have been worthwhile. The only reason my sloppy handwriting was made into something big was because my school and parents were focused entirely on making me catch up to unimportant, superficial, and arbitrary milestones. And this problem occurs with more than just handwriting. Another complaint of mine is physical therapy for things like low muscle tone (otherwise known as hypotonia) and general clumsiness. I happen to be incredibly skinny and uncoordinated. As such, I really don’t have the ability, or skills required to play any sports. But yet this isn’t a problem for me. I have found other activities to enjoy which don’t require physical coordination to pull off. As long as your child is coordinated enough to walk in a mostly strait line, and use stair cases, then that is all you really need to worry about. I could easily go on and list hundreds of silly, unimportant, and arbitrary things that parents focus on when they shouldn’t. But the basic problem comes down to parents comparing their children to other children of the same age, and then trying various therapies to close the gap. If you want your child to become productive and independent, then your goal should be to help him in areas which are likely to cause problems in his adult life. I have talked with many autistic adults; and those who struggle with holding down a job, or living independently, often have similar problems. Based on my informal observations, the most common problem holding autistic people back is stress and anxiety. They simply can’t handle the work environment; they get too stressed out by all the people, and they get overwhelmed. The second most common difficulty is problems with executive function. They have a hard time remembering appointments, figuring out what to do next, breaking large problems into smaller steps and so forth. And the third biggest problem is simply becoming depressed and giving up. They have problems, and all attempts to solve the problems result in being insulted and bullied by their peers, teachers, and bosses. So after a string of failures they just give up, become depressed, and stop trying. Yet most parents don’t focus on things like helping to teach their child good stress management techniques. They don’t focus on teaching their child how to plan something out, and break down large tasks. They don’t teach their children how to properly handle adversity and survive against the grain. Instead they focus on silly things like teaching the child how to recognize facial expressions, or how to greet somebody with the proper voice inflection. And P a g e | 149 when the child gets stressed out or overwhelmed, they are just told to act like a man and quit complaining. I am not saying that learning facial expressions is a completely useless skill. It may be beneficial to learn at some point. What I am saying is that it shouldn’t be goal number 1. It is goal number 47 at best. You can live independently and hold down a job without being skilled at small talk. You can’t live independently or hold down a job if you have constant meltdowns. To summarize this as much as possible: Whatever therapy you choose should have one primary goal. And that is to help reduce the amount of difficulty your child faces in life. For example, teaching your child how to communicate their thoughts better can alleviate some of the frustration and problems that come with not being able to communicate well. Likewise, teaching your child how to recognize his own emotional state, and take effective measures to reduce the stress, will greatly help to reduce the difficulties he has. Helping your child to form effective and beneficial relationships, while avoiding those that bully and berate him, will also help reduce his difficulties. I could go on about this forever, but the general idea is to help your child so he struggles less in life. The superficial social niceties may be worth learning, but they should be secondary to teaching things such as emotional regulation, stress management, and effective planning. Choosing The Right Technique Once you have decided what you want to accomplish with your therapy, you are left with the choice of which technique to use. Ultimately, the goal of any therapy is to teach your child something that will benefit them, in a way which they can understand. And there are multiple techniques that are commonly used in order to do that. Since the implementation of these techniques vary from person to person I can’t give exact definitions and examples, but I can offer a general overview. The first, and perhaps most common, technique is something called ‘Behavioral Analysis’. This is where ABA therapy gets its name. I don’t know if it qualifies as a technique exactly; but I am going to list is as one anyways because it is commonly marketed as a technique by various therapists. The idea behind Behavioral Analysis is to understand why a child acts the way that they do. For example, if your child is having a meltdown, then it helps to determine why. If you can determine the reasons behind the actions, then you can address them much easier. I talked about this before in the chapter about dealing with problematic behaviors, and it still holds true. I am a firm proponent of finding out what is causing the problems before you try to fix them. If you just try to fix the result without understanding the cause then you are likely going to fail. P a g e | 150 To give an example, when an object falls off a shelf and breaks, you don’t blame gravity. Gravity may have caused the item to break, but you can’t fix gravity. Instead you fix the source of the problem by securing the item to the shelf so it doesn’t fall off and create the problem. Likewise, if you want to help your child deal with his difficulties then it helps to figure out where the source of the problem is coming from so you know what to work on. This technique doesn’t really address the problem directly; it just lets you know which problems to address. Next on the list of common therapy techniques is ‘Repetition Training’. This is another one of the main techniques used in classical ABA therapy. It is commonly used when attempting to teach a young child how to communicate. If you have ever used flash cards to teach yourself information then you have used repetition training. This is a very effective way to get people to memorize information, and also to connect A to B. For example, you may put out a few items in front of the child, and then hold up a picture of one of the items (usually while also saying the name). You then get the child to point at the item in the picture, thus showing him that there is a connection between the item and the item’s picture. This is repeated with multiple different items until the child is able to identify which item is which based on the picture/word used. The idea here is to show the child that items can be represented by symbols. You can then use this association to help your child understand language. After all, language is nothing more than using symbols to represent reality. Repetition training is also a good way to teach your child how to do specific tasks, such as which steps to follow when showering, how to make a sandwich, etc. As the saying goes, practice makes perfect; so if you practice doing something a couple dozen times you generally learn how to do it. However, while repetition training may be useful for teaching word definitions and other simple tasks, it doesn’t do well when dealing with large, complicated, variable tasks. For example, repetition training is a poor way to teach your child how to form effective relationships. Since each person and situation is different, it is impossible to generalize the information learned via repetitive training. It may be able to help with simple things like how to pronounce a word, but it isn’t going to give your child any insights into more complex things. Another technique which is commonly used with autistic children is to present information in a visual way. A common example of this is PECS, which uses pictures to symbolize real world items and events. It is similar to how speech uses words to symbolize real world items and events. Other examples of presenting information visual include visual calendars, schedules, day planners, and so forth. Overall, this seems like a good thing to me. Not only does it provide the child a way of understanding which is visual based (easier to understand than speech), but it also provides the child time to process what he sees. Perhaps the simplest technique used in therapy is simply interacting with the child on their level. This is often referred to as ‘Floor time therapy’. I like to call it playing with your P a g e | 151 children. Parents will usually play games with their children, whether it is wrestling with their young boys, playing dress up with the girls, or simply just a playing a game of hide and seek. The problem becomes trying to play a game with your autistic child when he doesn’t seem interested in the usual games. This leads parents to believe that a special therapy needs to be used in order to engage the child. In reality, all you need to do is just play games with them that they enjoy. Stimming is usually a fun activity for young autistic children. Perhaps the two of you could go out on the swing and have fun (you can push). Perhaps your child enjoys playing with blocks. If that is the case then feel free to play blocks with him. You can build your castle and he can build his. You don’t need some special therapy or special technique. Just figure out what your child does for fun, and do it with him. The idea behind playing with your children is fairly strait forward. It engages them, and lets your child realize that other people can be fun to spend time with. It also builds a better bond between parent and child if the child enjoys doing things with the parent. I know it may seem silly to act like a toddler and play childish games, but if that is what your child enjoys then try to indulge them. It may be more fun then you realize. Therapy doesn’t have to be serious all the time; just playing games with your kid is good enough. Another technique, which is incorporated into most therapies, is desensitization. Desensitization is merely helping your child get used to things which would otherwise bother them. For example, say your child is terrified of other children. This is going to be a problem if you want them to attend school. So you make it your goal to get your child more comfortable around other kids. You can start out by going to the park, and sitting on a bench close enough to the playground so your child can see the other kids. This may make him a bit uncomfortable, but it doesn’t freak him out. You can then do this repeatedly until your child gets comfortable in the presence of other children. After that, you could try inviting over another child to your house. That way your child is on his home turf, and can go hide if needed. Your child may be anxious at first. But after a several visits, he will become more comfortable with the other child. From there you can add more children, change the setting, try going for longer times, or so forth until you are eventually putting your child into a school environment with lots of other children. The general idea is to slowly expand your child’s comfort zone, so he can feel comfortable while doing more and more things. By getting your child into a slightly uncomfortable situation, for a limited period of time, he can become acclimated to that situation. And then each time he finds himself in that situation he gets less nervous, and has less difficulty handling it. The key, of course, is that you can’t rush this. The idea is to expand your child’s comfort zone without freaking him out. Trying to push your child too fast isn’t going to help you or him. To put that another way, if you throw him into the deep end, without first teaching him to swim, then he is merely going to drown. P a g e | 152 My favorite therapy technique is cooperative, problem solving, discussions. I talked about these in detail in the previous chapter about dealing with problematic behaviors, but they can also help to teach your child more complex things. For example, explaining complex social customs to your child isn’t something that you can really do with repetition training. It is a far more complex topic, and can only really be explained to them when you sit down and have a mature discussion with them. Likewise, handling money, forming effective relationships, respecting boundaries, and so forth can only be explained with a discussion. If you look at most ‘social skills’ classes, you will find this as the technique most commonly being used, and for good reason. This technique is commonly used with exploring fictitious scenarios. For example, what would you do if ABC happened? What is a good idea, and why is it a good idea? What other ideas do you have, and how would those work out? What would other people think if you did something and why would they think that? Is there a way to solve this situation effectively? What actions would lead to the best outcome? And so forth. Engaging your child in a game of what if, and considering how things appear from different angles is a great way to encourage your child to think things through. And ultimately, stopping to think things through is perhaps the most important tool your child can use when figuring out how to handle various situations. And finally, one of the more useful therapy techniques is role playing. This is basically practicing life. It is often used in situations where you want to teach your child better ways to handle himself. For example, how should he handle being bullied, how should he respond, what should he say, and so forth. Role playing not only gives your child the opportunity to learn, but also the opportunity to practice. It is also a good way for your child to ‘detach’ himself from his emotions because he can play the role of somebody who handles situations more effectively rather than letting his emotions call the shots and do unhelpful things. There are many more techniques available, and I can’t possibly go over them all. But based on what I have observed, these are the basics techniques that form the core of most therapies and treatments. Often times, a specific therapy is one or more of these techniques combined together. For example, social stories are often a combination of repetition training, and role playing put together. Teaching your child how to communicate with a system like PECS is often visualizing information, used in conjunction with repetition training. And Social Skills classes are often role playing combined with cooperative discussion. I can’t say if any one of these techniques is any better than the other. Things like discussions are probably more beneficial for the older, more matured crowd, where as repetition training is more useful in younger children where the goals are simpler. It really varies from person to person, and situation to situation. But ultimately, whatever technique, combination of techniques, or therapy you go with doesn’t make too much of a difference. What really matters, more than the specific therapy, is that you try to engage your child, and P a g e | 153 explain things to them in a way which they can understand with the intent of helping them to learn and grow. I know that this sounds a bit corny, but knowing what your child is going through and trying to understanding how your child operates is the best therapy that you can get. Make it a goal to help them in areas where they need help, and focus on what is important for them to learn. Whether you accomplish this with social stories, or social skills classes, or any other therapy really doesn’t matter. From my perspective, I feel that spending some time with your children, and talking with them about how the world works, is just as effective as any therapy out there. You don’t need to follow some strict regimented guidelines in order to help your child. Most autistic adults out there (including me) never received any special therapy, so I can say with confidence that professional programs are not required for your child to mature and grow. Make Sure Your Child Is Onboard Whatever therapy, treatment, technique, parenting tactic, program, or mission statement you decide to use is up to you. But regardless of the method that you choose, there is one thing you need to make sure of: Your child must be a willing participant. As I have mentioned before (and shall mention again) your child learns best when they are motivated to learn. Trying to force therapies onto your child when he is neither cooperating, nor interested, is not going to work. The only thing that will accomplish is making your child upset, and stressed out. If your child hates therapy then he isn’t going to get anything out of it. So, the question becomes how to get your child onboard? For starters, try talking to them and explaining the goal and benefit of what you want them to do. Tell them what it will help them with, what they will be learning about, and why it is in their best interest. If they are mature enough, then that will be all you need to do. If they are younger, less mature, or non verbal then you may not be able to convince them with logic alone. But even if logic isn’t going to get your child completely onboard, it is a good place to start. The worst case scenario is that you wind up wasting your breath for a few minutes. Beyond that, you can make therapy more appealing by presenting it in a way which is enjoyable for them. Most therapies can be played as a game. Simple things like repetition training can be played like any memory game. If they happen to get a bit bored then that’s fine. You can’t make lessons interesting all the time. But for the most part, do your best to keep the therapy engaging, so the child doesn’t resent having to do it. Beyond that, try incorporating a reward system into whatever you are doing. If the child does well, then he gets a skittle, or a sticker, or whatever will motivate him. This may be somewhat ineffective on P a g e | 154 older children, but giving out skittles, stickers, and other prizes works decently well on young children. Some parents have a reservation about bribing their children in order for them to cooperate. It is common for parents to feel entitled to their child’s cooperation, and demand it without giving the child anything in return. This seldom works very well. After all, if your company stopped paying you, would you continue to show up for work? I know I wouldn’t work at a company that doesn’t pay me, so why should you expect your child to work when there is nothing in it for him? Parental ‘I say so’ doesn’t do nearly as much to motivate a child as actually giving them a reward for their cooperation. Let Your Child Be A Child While I have nothing against teaching your child new skills, there is a limit on how much therapy, or education, your child can handle. Panicking parents will often overlook this, and try to cram as much therapy into their child as possible, regardless of the toll it is taking on the child. This is often combined with the idea that there is a ‘critical window’ during early childhood where you have to fix all the problems or else unspecified, yet horrible, things will happen. This leads parents to sign their child up for excessively long hours of often unpleasant therapy in the hopes that they can save their child. All this will do is overwhelm your child, and stress them out. As I discussed previously, your child can only handle the world so much before they need to take a break. Even if the activity is fun, that doesn’t mean that it isn’t taxing. For example, I enjoy going to LAN parties. They are fun, and I am glad to go. But I wouldn’t want to spend all week at a LAN party. Despite it being fun, I still need a chance to relax and unwind. Likewise, your child needs downtime to unwind and relax. Trying to stuff their days full of nonstop therapy is only going to make your child run out of energy. And when your child runs low on energy, then they get cranky, and have problems, and I am sure you know the rest. Perhaps the best therapy for your child is to get them some activity which they enjoy (computer, Xbox, staring at a spinning fan, etc), and then leave them alone to play for a couple hours. While they are enjoying themselves, you can take a break and do something you enjoy. You don’t need to panic, stress, and try working on your child all day long. You don’t need to follow them around all day long looking for ‘teachable moments’. Part of the problem that many parents have is that they think their child needs 24/7 therapy, and 24/7 attention, or else they will explode in a fireball of doom. OK, perhaps not a fireball, but close enough. Your child could probably use some help with certain things, and they will probably have difficulties in their life that need addressing. But you don’t need to work on them all the time. What you and P a g e | 155 your child both need is enough down time and alone time so that neither one of you gets burned out. Be Patient And Respect Limits The virtue of patience is one of the most underrated skills out there. All too often, parents will attempt to rush things and try using therapies to solve all of their child’s problems at once. I hate to be the bearer of bad news, but your child will not conquer all of his problems in months, or even years, no matter what therapies are used. Some problems that your child faces, such as learning how to cope with stress, will be lifelong. You need to realize that your child may not meet the milestones, and goals that society thinks that he should be meeting. And this is not necessarily a sign that you need to add more therapies. Your child will grow and mature at his own rate, and you need to just be patient and allow it to take however long it takes. Some children will talk on time; others will talk later. And other children will remain non verbal. Some children will be potty trained early, and some may take longer. Each child is different and will learn skills at a different rate. You can certainly do your best to teach them, and try whatever therapies you think might help, but you need to accept that your child acquiring skills late is just part of his life. The more you worry when your child fails to do things on schedule, the more you panic. And when you panic, you start getting more desperate and you start doing things that aren’t very productive. As I stated at the beginning of this book, the worst possible thing you can do for your child is to panic and act out of fear. That is what causes you to start looking for miracle cures, radical therapies, aggressive treatments, and other such quackery which only serves to exacerbate your child’s difficulties. The sooner that you accept your child for who he is (delays, difficulties, and all) the sooner you will stop panicking. You should help your child where you feel that you can, but don’t make your life, or their life, miserable in the process. That won’t accomplish anything. And continuing along the same line, you need to respect that your child has limitations. Sometimes, you get to the point where making progress is no longer worth the effort required. For example, if you want to try some desensitization therapy to help your child to be comfortable around other people, then that is fine. I think it is a good idea for you to help your child grow and try to expand his comfort zone. But you have to realize that your while your child may outgrow some of his social anxiety, he may never be the life of the party. When you get stuck, and your child doesn’t seem to be making much progress, then consider that it may be time to stop pushing for improvement. Perhaps when your child is older, has more experience, and wants to try again, you can work on things more. But there is something P a g e | 156 illogical about exerting all your time, effort, and energy when there is little chance for improvement. Choosing The Right Therapists One of the first things parents try to do when a child is diagnosed is to search for qualified help. And this is an excellent idea. After all, you can learn a lot of useful things and get a lot of useful advice from other people. But the question then becomes, who is good help? Is your pediatrician the right person to ask? Do they know what they are talking about? Which therapist should you use? Do you need an Occupational Therapist, a Speech Therapist, or both? I could go on like this for a while, but I think you get the idea. The truth is that if you talk to a dozen therapists, then you will get a dozen different recommendations for which therapy to use, which technique to use, how to use it and so forth. The reason for this is that most therapists don’t have any more answers then most parents. A lot of the time, a therapist only has the information that they read in some books and a limited amount of personal experience. So they are guessing just as much as you are when it comes to this sort of thing. So how do you know which therapist should you choose? And how do you know whether or not your therapist has good advice? In order to help answer that, I have put together a list of questions to consider when comparing therapists. 1. What is the therapist opinion of autism? This is a fairly strait forward question, and it will act as a litmus test to determine whether or not a therapist is a good person to have working with your child. If your therapist says something like, ‘Autism is a horrible condition that causes problems and destroys lives.’ Then that is not a therapist you want near your child. Because that therapist will constantly be trying to make your child normal, which is not the goal. Conversely, if the therapist says something like, ‘Autism is a condition which causes people to think differently. Sometimes this can be a problem, and as such they need help, but it is not bad in and of itself.’ Then that is a good therapist, because they will be more interested in helping your child rather than fixing them. 2. Can the therapist clearly explain what he wants to do? If your therapist cannot clearly explain, in detail, what they want to do, then they aren’t a good choice. If you get an answer like, ‘I need to spend some time with the child and figure out what we need to work on’, then that is fine. Ask them how they plan to determine what your child needs, and how they are going to go about doing that. If they cannot give specifics then that means they are just winging it and trying out different ideas to see what works. P a g e | 157 While there is nothing wrong with trying different things out, you can do that at home for much cheaper. 3. Does your therapist have the right goals? As I said earlier in this chapter, you need to focus on the important things. And if you want to take your child to a therapist, then find a therapist who also understands the value of focusing on the important things first. If your child is having meltdowns, and other such problems then you don’t want to take your child to a therapist who will focus on teaching them how to read facial expressions. That is a clear case of putting the cart before the horse. So ask your therapist which objectives he thinks is important to work on first, and then ask him why he thinks they are important. If he can’t clearly explain which skills are important to learn first, and why, then get a different therapist. 4. Does their methodology make sense? Let’s say that your child is having difficulties with communicating, and you want to try a speech therapist. So you find one who says that your child needs to eat watermelon seeds, and then hop backwards while spinning in order to learn how to talk properly. That doesn’t make much sense to me, and I would avoid any therapist who claims that. Conversely, if the speech therapist said that they would be playing games, such as how many tongue twisters you can say per minute, in order to get your child more proficient at certain sounds, then that makes more sense. Your therapist should be clearly able to explain what his goal is, and how his suggested methodology will bring about the desired goal. If you cannot understand how the suggested methodology will bring about the desired goals then you don’t want to use that therapist. 5. Can you do it yourself? One of the things which annoys me about many of the ‘autism therapies’ is that most of them are just basic parenting techniques. But they are done with special labels so that people can charge ridiculous sums of money for practically nothing. For example, there is something called ‘group integration and play therapy’. The idea here is to get your child together with other children so that they can play a game and have some fun. This is a good way to get your child comfortable around others, and also encourage them to learn skills like losing graciously. This is otherwise known as a play date. You don’t need to pay somebody lots of money to set up and then facilitate a play date. You can set up and manage your own play dates just fine for free. Likewise, floor time therapy is nothing more than just playing some games and having fun with your child. You can do that yourself for free. It might be a good idea to talk to a therapist, knowledgeable parent, or somebody else with some experience when looking for pointers and ideas. But as I said at the start of this chapter, don’t think that you need to have a professional come in and raise your child. Most of the therapies out there can be done by the parents with just as much effectiveness as any P a g e | 158 professional therapist. If your school, or government, is offering you free speech therapy then go ahead and take it. There is nothing wrong with getting help from trained professionals. Just be aware that you could probably do it yourself at home. P a g e | 159 What About Medication? A common question that many parents have is what, if any, medication they should get for their child. Which medication does what? How effective are the medications? What problems can medications help with? What should you medicate? And so forth. This is a somewhat complicated question to answer, so I have decided to devote an entire chapter to it. I should start this chapter by saying that medication is not inherently bad. Many parents are so opposed to medication of any kind that they can rule out some potentially beneficial aids. On the other side are parents who medicate first and ask questions later. I happen to be somewhere in the middle. I am not opposed to all medication on principle, but I think that medication should be used only after careful thought, and also used very carefully. So, how do you determine if you should use medication, and which medication to use? To answer that, I recommend that you go through the following list of steps. 1. Determine what the problem actually is, and what you want to achieve. 2. Try a non medication route to fix the problem first. 3. If the non medication route fails to address the problem, then contact a professional to see what medication they would recommend. 4. Learn all you can about the suggested medication. 5. Use the medication cautiously. Determine The Problem As you can see, item number one on the list is determining what the problem actually is. Parents will sometimes decide that their child needs to be medicated because they are having problems that they don’t understand, and they don’t know what else to do. For example, their child may be having meltdowns, and since the parent doesn’t know what to do about them, they turn to medication. In this situation the parents aren’t addressing the actual problem. As I discussed earlier, meltdowns are just the end result of a very stressful string of events. If you want your child to meltdown less then you need to find out what is causing the stress. Is it not getting enough relaxation time? Is it being bullied by peers? Is it anxiety over trivial issues? Is the child lacking good coping skills? If the child is having problems because they are getting bullied at school then medication isn’t going to solve the issue. If the child isn’t being given adequate time to relax and unwind after a long day then medication won’t solve the issue. There are some situations that can be helped with medication, but not every problem can be fixed with a pill. P a g e | 160 It is also important to take an objective look at your situation and make sure that the problem is actually a real problem that needs medication. As I mentioned earlier in the chapter about stimming, just because something seems strange doesn’t mean it is a problem that needs fixing. There are some parents who want to medicate their children for things such as stimming, being non social, having unique interest, or other non problematic traits. Still other parents will medicate their children for things like talking too much, or not talking enough. You really need to make sure that you understand what the problem is, and then make sure it is an actual problem that needs medical treatment. Not everything which seems like a problem needs to be fixed, or should be fixed with medication. The last part in step one, is to determine what you want to achieve. This may sound silly, but it is a fairly important step. All too often, parents will try medication to solve a vague problem with no idea what they want the medication to actually do. For example, a parent may medicate a child for seeming too autistic, and then hope that the medication does something. When the child makes eye contact a week later the parent thinks, “Aha, the medication is working!” The child making eye contact probably has nothing to do with the medication, and trying out different medication to see what happens is risky at best. If you don’t have any goals as to what you want the medication to do, then you have no way of determining whether or not it is working. Simply medicating your child and hoping something good happens is a bad idea. Try The Non-Medical Route Step two in this procedure is to try a non medication route to fix the problem first. After you have identified (to the best of your ability) what the source of the problem is, try finding solutions to that problem which don’t involve medication. For example, if your child is having too many meltdowns at the store then perhaps it would be best to avoid that situation. It may be a good idea to leave them at home, or with a friend, while you go shopping. Perhaps when they are older you can go back and work with them to build up their tolerance to unpleasant environments, but simply avoiding the problematic situation when available is a good non medication way to solve the problem. This entire book is chock full of ways to solve problems in a non medical fashion. Teaching your child good coping skills, stress management techniques, and self control is a lifelong benefit with no risk of unwanted side effects. No medication can say that. I should also point out that you need to try the non medication route for a decent period of time before coming to the conclusion that it isn’t going to work. You need to have some realistic expectations about the improvement you expect to see. For example, if your child melts down often then you can pick up this book and try implementing some of the ideas P a g e | 161 that I have mentioned. If, after 2 weeks, your child is still having meltdowns then you shouldn’t conclude that the non medication route isn’t working. It will take some time for your child to learn good coping skills and learn how to use them effectively. The last uncontrolled meltdown I had was in 11th grade when I broke down in tears in my history class. Expecting your young child to be in complete control of his emotions (after only 2 weeks of practice) is unrealistic. If you try for a long time and find that your child isn’t making satisfactory progress, or you feel as though the child could use some additional help, then you can go for the medication. But give the non medication route a shot first. Ask The Doctor If the non medication route fails, then the next step is to contact a professional to see what medication they would recommend. A psychiatrist is usually the person who prescribes medication; but on some occasions, your pediatrician might do it also. Since it is a psychiatrist’s job to prescribe medication, they generally know the most about what medication does what, and as such will be a good reference. But at the same time, I must warn you that you shouldn’t take a psychiatrist’s advice as unbiased. Psychiatrists get paid bonuses for every person they prescribe medication to, and they also get repeat customers if the person has to constantly come back to adjust medication. To offer an analogy, consider this situation. Let’s say there is a family with a working father, a stay at home mom, and 1 car. The mother doesn’t like being left at home without a car because she can’t go out and do things like shopping, getting her nails done, or whatever. So the couple asks around for advice. One person might recommend that the husband carpools, or takes public transit, one day per week and leaves the car at home for the wife to use. Another person might recommend that a relative comes over to watch the kids for a few hours while the mother borrows the relative’s car. Another person might recommend buying an old used car that is still functioning well enough to go to the store. But if the couple goes to a new car salesman then he will almost always recommend that the couple buys a brand new car, regardless if it is the best option for the family. Psychiatrists are in a similar position. If they just offer you advice like, “Get the child a hobby and take steps to reduce stress”, then they aren’t going to get a bonus or repeat customer. If they prescribe your child anti-anxiety medications then they get a kick back from the drug company, and also guarantee themselves repeat visits. This has led to many children being medicated, for things which they shouldn’t be medicated, because the psychiatrist was more interested in making money, and taking advantage of a panicking parent desperate to do something, than actually helping the child. P a g e | 162 I am not saying that all psychiatrists are carelessly pumping pills in order to line their pockets. There are some psychiatrists out there who genuinely want to help. I am just saying that you shouldn’t blindly follow their advice. You should consult with them to see what they recommend, and then ask them why they recommend that specific medication. If they can’t explain what a medication does, or how it is supposed to help your situation, then you shouldn’t be giving that medication to your child. If you need to get a different psychiatrist then so be it. Your child isn’t going to die if you wait to find somebody who will actually explain what the medication does before you start medicating. Research the Medication The next step is to learn all you can about the suggested medication before you put your child on the medication. During your visit to the psychiatrist you can talk with them, get their advice, ask your questions, and even get your prescription. But don’t fill the prescription and give it to your child until you have researched the medication at home for yourself. Wikipedia is a decent place to start. You can Google the name of the medicine and see what other people have said about it. You can try message boards and ask other autistic people, or their parents, what effects the medication had on them. Research what the medication does, what its effects are, and what its side effects are. You also need to make sure that the effects of the medication are similar to what you are trying to achieve. For example, your child may constantly worry about unrealistic scenarios. What if a meteor crashes into the house; what if we run out of food; what if terrorists attack the playground, etc. This causes him anxiety, which causes more problems. The first step is to figure out that the problem is him worrying too much about things he shouldn’t worry about. You can then try to address this problem by explaining to him why his fears are unrealistic. You could comfort him, and you could try distracting him with a hobby. But, if after all, that your child is still constantly nervous and worried you may want to look into medication. You then go to a psychiatrist who diagnosis your child with generalized anxiety disorder and recommends Zoloft. After researching the drug you find out that it is effective at treating this sort of anxiety, and the information is consistent with what the doctor told you. In this case I would say that the medication would be warranted. By comparison, if your doctor prescribed your child Lithium then you would have cause to worry. Lithium is used to treat bipolar disorder and your child doesn’t have any signs of bipolar disorder. Due to the vast amount of drugs out there, I can’t tell you what every drug does, and what drugs you should give in which situations, but there is one drug in particular that I feel I need to mention. There has been an increasing trend to prescribe the drug Risperidone (Risperdal) to children who shouldn’t be on the drug. Risperidone is an antipsychotic which P a g e | 163 effectively works like a tranquilizer. It slows down the mind and mellows the person out. It also can negatively affect the person’s ability to think normally. Those who take the drug say that it induces a ‘brain fog’ effect. In very high doses, this drug can effectively make people so zoned out that they act like mindless zombies. That’s why these drugs have received the knick name ‘chemical strait jackets’. There are also many serious side effects that come with this drug such as uncontrollable muscle spasms which can persist long after the medication has stopped. The drug has been approved to help reduce violent aggression and extreme irritability in autistic people. Some autistic people who take the drugs say that it helps them to stay calm and it reduces their anxiety related problems. These people they feel as though the ‘brain fog’ effect is worth the peace provided. After all, it is better to be mellowed out and slightly foggy than to violently lash out at everybody and wind up institutionalized. However, this drug is often being prescribed for much more than just extreme irritability. Since it is the only drug approved for something related to autism it is often the first drug that a psychiatrist will prescribe to an autistic patient, regardless of what the problem is. Children have been prescribed risperidone for things such as not making eye contact, or having delayed speech, or stumbling through their words. If you take your child to a psychiatrist and explain that he has autism then you will likely walk out of there with a prescription of risperidone no matter what he struggles with. As such, many parents will give the drug to their child and hope for the best, just because the doctor recommended it. In reality the only thing they are doing is reducing the child’s ability to think clearly and thus making it difficult for them to grow and learn. So, if your child has severe irritability, is acting violently aggressive, and all other attempts to help the situation have failed, then I could see this drug as being your best option. But it certainly should not be your first option. Changing the environment, helping the child handle his stress, and other less dangerous drugs like SSRIs should all be tried first before you give antipsychotics to your child. Use With Caution The last step in using medication is to use the medication cautiously. Always be aware of all the potential side effects and be vigilant for anything which seems out of the ordinary. Many medications can have counter-productive side effects which occur in a small portion of the population, making the problems worse. So you shouldn’t just give your child drugs and then consider it solved. It is also important to point out that these drugs were designed for normal people’s biology. Autistic people aren’t normal. Their neurology and neuro-chemical makeup are different then a normal person’s. As such, the drug may not perform as expected, P a g e | 164 and there may be unforeseen side effects. If you do decide to use medication then you will want to start with the smallest dose possible, and slowly work up the dosage until you get the desired results. Once you have the desired results, stay at that dosage until you notice the effects wearing off. Going for the maximum dosage right away is risky at best, dangerous at the worst. And finally, the most important thing to remember when considering medication is that you shouldn’t use medication as a replacement for teaching your child good coping skills. Things like anti anxiety medication can be useful in helping your child deal with anxiety and stress, but it doesn’t replace proper stress management techniques like setting up a good environment, or learning good coping skills. Medication can be a good tool to help your child deal with his difficulties, but it cannot replace the maturing process. P a g e | 165 Should I Tell My Child He Is Autistic? This is a surprisingly common question that many parents have, and luckily for me it is very easy to answer. So here we go: Yes. Wait… What? What? You want more information? Ok, I admit, that was a pretty short answer for a very complicated question. So let me explain that a bit more so you can understand the reasoning behind the answer. As I have stated before in this book, you can’t fix solve all the problems that your child is dealing with. The majority of problems that your child is dealing with will have to be handled by your child. When your child is young, you may be able to change their environment, and try to get them into activities which are better suited to them. But that is only going to solve a small portion of their problems temporarily. If you want your child to have a lasting and sustainable improvement in his life then he will have to put forth effort and learn how to handle the problems himself. You can’t make your child recognize, and handle his own stress. You can’t force your child to form effective and beneficial relationships. And you can’t force your child to act mature. The only thing you can do is teach your child. It is up to him to learn. And if your child is going to learn how things work, then he is going to need enough information to do so. When you try to dance around the issue then all you are going to accomplish is making your child confused. How is your child going to learn how to handle his stress if you don’t talk about the effects of stress and proper coping techniques? And how are you going to explain why he gets stressed more than other people without telling him that he is different? How can you explain that other people think differently than your child, without first explaining that your child isn’t normal? How can you explain what purpose speech therapy has unless you tell your child that they aren’t communicating well? How can you explain what purpose there is for avoiding chaotic environments like parties without talking about sensory problems? The fact is that you can’t try to handle a problem while simultaneously denying that the problem exists. It doesn’t work out. If you want your child to understand what is going on, and why he is different from other people then you are going to have to tell them. Another reason to tell your child that they are autistic is because they will eventually figure it out by themselves even if you don’t tell them. And what they will figure out by themselves, based on rumors and guessing, is likely going to be worse than the truth. Your child may not know that the name for his peculiarities is autism, but it is a pretty safe bet that your child will notice that he isn’t normal by age 5. At that young age he probably won’t care P a g e | 166 that he isn’t normal, and he probably won’t bring it up, but he will notice. As he gets older, and the difference between him and others gets wider, he is going to start wondering why he is so strange. And he is going to try looking for a reason. If you don’t tell him why he is different, then he is likely to assume that he is just some random freak with nobody who he can relate to or understand. I know that the word autism carries some stigma, but it is better to know why you are different then to label yourself as a freak who nobody understands. What To Tell Them After answering the question of whether or not to tell your child, the next questions that usually crop up are what to tell them, how to tell them, and when to tell them. And that is where things can get a bit subjective. I cannot give you an exact formula for what to tell your child and when. It depends on the child, their age, their maturity, their knowledge of themselves, and a variety of other factors. But I can provide you with some basic guidelines. As soon as you think your child is capable of understanding speech, tell them the basics of how humans operate. It should go something like this: 1. Everybody is unique and has their mind work in a different way. No two people think exactly alike. Your child thinks differently than you do. Your spouse thinks differently than he does, his siblings think differently, etc. Everybody sees the world differently, understands things differently, and views situations differently. 2. Nobody's mind is any better or worse then somebody else's mind. Some people may be good at math; some people may have difficulty with it. Some people may be good at talking, others may struggle with it. Since everybody has a different mind, everybody will have their own unique set of skills and challenges. But that doesn't mean that one person's mind is better or another's mind is worse. Everybody is equally valuable, not because of what they can and cannot do well, but because they are all human. It doesn’t matter whether or not your child is autistic or normal; these are basic concepts that need to be explained to everybody. Tell these to your children as often as you feel they are relevant, and give examples of when confusion happens. Talk about different perspectives, and how the other person sees things. And do this for your non-autistic children too. Furthermore, don’t just tell this to your children once. Do it every time there is a disagreement, or anytime you think it is even remotely relevant. If your children don’t roll their eyes and act bored when you start talking about understanding other people’s perspectives then you aren’t doing it enough. When your child hits around the age of 4 to 6 they will probably begin to notice that they don’t fit in with everybody else. This number varies from child to child, and it is often P a g e | 167 times difficult to know exactly when the child will realize this. If your child spends a lot of time around other children then they will probably recognize it sooner, if he is mostly at home without much company then it might take longer for him to notice. When you think your child starts noticing that he is different, then I would tell your children the following: 1. While everybody is unique, and no two people are exactly alike, some people have similar thinking styles. The people who think in similar ways can be thought of as a group. For example, there is one group of people who likes to go swimming, and another group of people who don’t like to go swimming. One group is not better than the other, merely different. Different groups are like cats and dogs. Each and every dog is unique. It has its own style of fur, its own size, and its own unique personality. Likewise, every cat is unique. It has its own size, shape, and color pattern that no other cat has. But even though each creature is unique, you can group them into somewhat similar categories (I.E. you can determine what is a cat, and what is a dog). This doesn't make them any less unique, these are just very broad categories. 2. Your son happens to have a mind that belongs in a rare group. His mind operates differently than most people. It is like being a cat in an area with a lot of dogs. It isn't a bad mind, just merely different than most others. While there is nobody who is exactly like him, there are other people who are similar. It is just that people with his type of mind make up a very small portion of the population. As such, he will notice that he is different from most other people. 3. While there is nothing wrong with being unusual, it can make interacting with other people tricky. Just as a cat and a dog have difficulty understanding each other, so your son might have some difficulty understanding people with the normal, less rare, minds. Tell him that you can help with this by explaining in some ways how other people think. And that you are available if he has any questions about the strange normal people. If you don’t know when to tell this to your child, then just err on the side of caution and tell him early. If you tell him before he notices that he is different than he is just going to get confused, and it isn’t going to do him any harm. Just wait a few months and try telling him again. Eventually he will recognize that he is different, and what you are saying will make sense to him. It is better to start early and confuse him a few times then to wait several years and then try explaining things after he has thoroughly confused himself trying to figure out what is going on. As far as using the words, autism, or asperger’s syndrome, they really don’t matter at this point. They are just words made up by professionals to sort people into categories. He doesn’t need to know about the history of the diagnosis, or the implications, or anything like that at age 4. What he needs to know right now is that different people think differently than P a g e | 168 he does, and that isn’t a bad thing. It just may create some confusion, and he should be aware of that. Eventually, when your child is around ages 8 to 10 he will become curious about some of the details regarding why he is so different. When that happens he is likely to start asking more questions about why he is different, and that’s when you can go into the full explanation about what autism is. I would personally recommend that you try to start off the conversation with the basic information about the neurology. Explain that autism is a neurological difference, what that means, and so forth. Talk about the wide range of possible presentations, and problems that may result. It may also be a good idea to mention the successful people who have had the condition in the past, including successful people like Temple Grandin, or Nobel prize winners. Try to focus on the success stories before you talk about the challenges that may result. It is important that you present autism as just a different way of thinking. Don’t talk about it like it is some disease and act like it is some shameful secret. It is a part of who your child is, and your child needs to realize that while he is different, he is neither inferior nor superior because of it. I would also recommend providing your child with some books to read. One of the most popular books for explaining autism to young children is ‘All Cats have Asperger’s Syndrome’. There are also other books such as ‘Freak, Geeks, and Asperger’s Syndrome’. Make sure to ask your child if he has any questions and then answer them as honestly and completely as possible. And let your child know that this is an open subject; he can ask you about it at any time. Like with the rest of these talks, there is no way to know exactly when your child is ready to fully understand Asperger’s Syndrome. The fact is that there is no specific time or date. Even at 23 years old, I am still learning about myself, and how the world works. And if I am still learning, then how can an 8 year old child possibly comprehend such a complex issue? In reality, the talk you have at ages 8-10 is merely a way to open the door, and introduce your child to the term. Give him some books to read when he wants, and let him know that you are available to talk. It will probably take him years to understand things fully. If you happen to tell your child about autism, and everything involved, too early then it really isn’t going to harm them much. Most of it will just go over their head and confuse them. So if you get prepared, and give the full presentation to your 6 year old then he is probably just going to say ‘OK’ and then go back to playing his game. Odds are that he won’t understand what he just heard until years later, and by that time he may have forgotten and you will need to go over it again. So don’t worry too much about rushing things and spoiling his innocence. All you are doing is helping your child to understand how he relates to the world, and you aren’t going to scar him for life if you let it slip out too soon. P a g e | 169 Late In Life Diagnosis If your child is diagnosed later in life, then just skip directly to the fully open conversation. You aren’t going to do your child any favors by hiding his diagnosis from him when he is 13 years old. I can guarantee you that he KNOWS he is different. He may not know what it is called, but he knows what it is. If you don’t give him a label for it then his peers and teachers definitely will. And those labels are often times far less kind then the label he should have. And trying to hide the label and deny that he is different is only going to reinforce the societal prejudice that people who are different are somehow defective and shameful. Part of the problems that comes with a diagnosis later in life is often denial, or resentment. This problem generally comes from social anxiety. After all, by the time your child is in middle school, he has been taught by his peers (and sometimes his teachers) that any abnormality is unacceptable, and requires bullying and teasing. Telling your child that he is strange, and he will be strange until he dies, is often times not what a teenager wants to hear. The problem is mostly caused by your teenager’s fear of being bullied and insulted for who he is. And as such he has probably internalized the idea that being who he is is somehow wrong. I have been down that road and I can tell you it was not a pleasant one. As such, some parents tend to think that it is better to wait until the child is out of school and has developed a better sense of self identity and self esteem before they tell them about the diagnosis. The general reasoning is that they don’t want to negatively affect their child’s self image during the particularly difficult teenage years when a person’s self image is especially vulnerable. While I can understand this viewpoint, I don’t think it is a good idea. Speaking from personal experience I know that I probably wouldn’t have been happy to learn about autism when I was 13 years old. But the fact is that the denial and resentment would have eventually passed. And after that, I could have learned more about myself, and other people like me. It would have done much better for my overall self esteem then leaving me lost in unfriendly waters. It may take a little bit of time, but if you just give your child some patience, information, and space then they will learn about it eventually. It may be rough for a little while, but it is better to go through a rough patch for a few months then to be lost for the rest of your life. So unless your child just had some major upset in their life (such as a family member dying) do them a favor and tell them that their autistic and what that means. It may be difficult to deal with when you first get started, but the benefits of finding out about who you are, and how you relate to the world are worth it. P a g e | 170 What Does The Future Hold? Parents of autistic children often worry about their child’s future. Will the child be able to live independently? Will the child be able to hold down a job? Will the child ever get married and have children? These are fine concerns to have, and it is good that you are concerned for your child’s well being. But while I would love to answer these questions with a simple response, I cannot give a simple answer that covers everybody. Some autistic people may grow up to live independently and provide for themselves. Other autistic people with more profound impairments may wind up in a supervised living facility. It varies from person to person, and situation to situation. But while I cannot tell you what the future holds for your child, I can say that people with autism are capable of growing and maturing just like everybody else. Autistic people are not stuck with the same set of skills that they are born with. They can grow, adapt, and overcome many of their difficulties. It has been said that autistic people tend to ‘outgrow’ their autism with age. This is partially false and partially true. Overtime, your child can learn skills like better communications, better stress management, and how to form effective relationships. This reduces the problems commonly associated with autism which leads people to think that autistic people become less autistic with age. In reality, I am just as autistic as when I was born. The only difference is that I now know how to cope better with life as an adult. Maturing Over Time There are multiple things which occur as a person ages and gains more experience with life. For starters, as people age they learn to mellow out a bit. What this means for an autistic person is that things which used to overwhelm and panic them as children aren’t as problematic as adults. This may be partially due to the desensitizing effect that comes from living in the world for long enough. Or this could be due to the fact that they have handled similar problems before, and know that it isn’t a big deal. I can’t give an exact reason why, but generally, as people grow older, they learn to freak out and panic less over the small stuff. Another benefit of age is better endurance. As your child goes through life, faces struggles, and grows older, they develop more perseverance, and more stamina. This allows them to handle more difficult times in life, and get through more difficult situations that would have overwhelmed them as children. This doesn’t mean that your child will stop facing difficulties in his life. This just means that your child will be able to handle more difficulty and cope for longer before they get exhausted. P a g e | 171 Perhaps the best benefit of age is that an autistic person gets to learn about themselves. When I was younger, I didn’t understand how I operated. I didn’t know what bothered me, why it bothered me, how it bothered me, or what to do about it. All I would know is that certain situations would just make me uncomfortable, which would create problems. As I aged, I was able to figure out what was causing the problem, and how to handle it effectively. I learned that I had limits, and that most problems occurred when I tried to push myself beyond those limits. As I child I would rush head long into loud, chaotic environments without knowing that was causing the problems. But as I grew older, I was able to figure out what I needed to do differently. And lastly, another plus that comes with age is being in a better environment. For example, when I was young, I was stuffed into a room with dozens of other loud, unpleasant, 5 year olds in a classroom setting (commonly known as kindergarten). As an adult, I am no longer trapped in a room of dozens of young children running around screaming all day long. By comparison, I live alone and I have plenty of time to rest and relax by myself. I also benefit from being an engineer, which means my job is fairly laid back and not pressured. As I grew older, I have also gained more control over my environment and started making my own decisions. This has allowed me to organize, and run things the way I like them. So while I have changed over the years, my environment has also changed to one more conducive to my functioning. This means that I get stressed out much less than I did as a child. Aim High, But Not Vertical Knowing that your child can mature and grow in life is a comfort to many parents, but it doesn’t do much to answer the question of what plans you should make for your child. Should you expect them to move out and get a job? Should you set up a trust fund for them? How much help will they need? And furthermore, how can you bring about the best result for your child? And the best way to answer that question is to say that you should aim high, but not vertically. Since that probably requires some explanation, allow me explain. Many parents will try to aim at goals that are far out of their child’s reach, and then try to push the child to those goals as fast as possible. This would be like taking a bow and arrow, and aiming straight up. The parents then let the metaphorical arrow fly, only to have it come straight back down at them. They then wonder why their plans aren’t working, and why their child isn’t making any progress. As I explained in the therapy chapter, your child is not going to make miraculous progress no matter how many therapies you put them in, or how hard you push them. In fact, pushing them is just going to make them more stressed out, which just makes things worse. P a g e | 172 If you want to help your child, then you need to figure out where they are, what problems they have, and which problems will prevent them from attaining goals like independence and employment. You can then work on those goals in the order of importance. The first thing to work on is getting your child emotionally stable. If your child is too stressed out, and having constant meltdowns, then they aren’t going to be able to do anything. So getting them emotionally stable is the first goal you should aim for. You can never remove all the stress and all the problems from your child’s life. So you shouldn’t aim for completely stress free. But you can try to reduce the stress as much as feasible and help your child to learn better coping skills. After that, focus on teaching your child the skills that they need to be independent. This includes things like organizational skills, self help skills, learning their boundaries, learning how to stay safe and avoid those who would wish to scam you, how to do your own shopping, organize a home, and so forth. After that you can help your child learn the skills he will need in a job hunt such as showing up on time, keeping a schedule, keeping on a plan, and etc. And then after that, you can start working on the superficial social niceties, such as eye contact. As I mentioned before, you need to focus on the important things first. Set a reasonable goal for what you want to achieve next, and then try to achieve that goal with patience. Then once you have made some progress, reassess your position, and set a new goal. Then try to achieve that goal with patience. Over time, as your child makes more progress, set the goals higher and higher and try to help your child as much as possible. That way, you can work up the ladder in terms of what your child can handle. Some children may take longer to accomplish certain goals, while other children may catch on quicker. But when you start with the most important things first, then every bit of progress that you make allows your child to handle life better, and accomplish more. Where your child ends up, and how well he functions in life, depends on lots of things. Some autistic people make good progress, learn how to handle the difficulties in life, move out, get a job, and take care of themselves. That is what I have done, and that is what many other autistic adults have done. And it is very possible that your child will do the same thing, especially if he is ‘higher functioning’. I am just saying that you can’t make that your goal and refuse accept anything less. Because when you set arbitrary goals, and refuse to accept less, you may be expecting too much. There is a possibility that your child may not be able to do well at interviews and get a job in the open market, but that doesn’t mean that they can’t work for a friend of the family and live independently. Your child may not be able to handle the stress of a job, but that doesn’t mean that they cannot live by themselves. I can’t tell you how much your child will be able to accomplish, and what will be too difficult for them. But what I can tell you is that the P a g e | 173 your child will have the best results if you work with him, step by step, on setting a good foundation, and then work on the important things. And lastly, I must mention that regardless of the position that your child finds himself in, and regardless of the difficulties he faces, his life is still worth living, and living well. Your child doesn’t need to have a job, a wife, and family to be happy and content with his life. If there is one thing that I have found it is that contentment doesn’t come from keeping up with everybody around you. Contentment is not found in pretending to be something that you are not for the approval of others. Contentment is not found in a high paying job that allows you to buy fancy cars. Contentment is found inside of you. It comes when you are happy with who you are, and where you are in life. And your child can also find contentment and happiness in his life, even if he doesn’t follow the path that a normal person does. That doesn’t make his life any less valuable. P a g e | 174 Where Do We Go From Here? So, you’ve read through this book and you are looking for some more information to help you along your journey. I could easily write entire almanacs about autism; but for now, I feel as though the basics of what you need to know are finished. So let’s take some time to review what has been written, and consider how everything works together. For starters, you must understand that fear is a bad thing. I talked about this in the first chapter, and it is fitting that it should be in the last chapter as well. Fear is what clouds judgment, causes distress, and ruins lives. Fear is what will keep you awake at night wondering what may come, or what the future holds. Fear is a major obstacle that parents with autistic children must overcome. Not giving into your fears is more important than choosing the right therapy, getting your child into the right school, or getting them the right tutor. If you let your fear drive you then you will become panicked and wind up causing more harm to your child then anything. So just take a deep breath, relax, and stop panicking. Yes, you will have some challenges ahead of you, as will your child, but losing your head is the quickest and surest way to fail. The second thing that every parent needs to understand is that autism is not the enemy. Much of the fear based media will tell you that autism is some horrible, life destroying, soul crushing disease that is stealing your child. Do not believe it. Autism is a part of who your child is, just as much as his gender, or his inherited traits. Autism affects how he thinks, how he processes information, and how he perceives the world. You cannot remove the autism without changing who your child is. What you can do is accept your child (peculiarities, struggles, and all) and help him to become the best person he can be. I am not going to lie to you and say life will be perfect. But the important lessons in life are not learned when life is easy. If you want to help your child then the third thing you need to understand is that stress is the biggest problem your child has, and it is what causes many of the difficulties that your child faces. Autistic children are not any naughtier or ill behaved then a normal child is. They just have a lot more problems to deal with. Stress is what causes your child to act out, create problems, and have meltdowns. And if you want to help your child, then the best way to do so is help to reduce the stress he is under, and teach him how to do the same. Reducing the stress that your child is under is not as easy as flicking a switch. There are multiple things which can cause your child difficulty, and they vary from child to child and situation to situation. The best way to help your child is to understand how they operate, and what causes them to stress out. If you can determine what is causing your child difficulty then you can help to alleviate some of the problems, and help your child to live a life with less stress. P a g e | 175 In addition to that, you can help your child by giving him effective ways to deal with his stress. Teach him how to react appropriately, take a break, calm down, and relax. Teach him that he has limits, and that he needs to learn and respect those limits. Teach him how to keep his stress levels low by taking time off to relax and unwind. If he should fail, and his stress overwhelm him, then don’t jump down his throat about it. What your child needs is help learning how to manage his stress better so he creates fewer problems for himself. This brings me to the fourth item which all parents should know. The best way to help or teach your child is to do it cooperatively. This is known as working WITH the child as opposed to working AT them. The difference is that when you work with the child you get them on your side, and then approach the problem from the position of collaborating together to solve a something that is a problem for both of you. This could be a problematic behavior, or a destructive stim, or anything. Any therapy, lesson, instruction, or advice you want to give your child is best accomplished with their understanding and cooperation. Trying to force things on to your child (even with the best of intentions) isn’t likely to teach him anything useful. And ultimately, your goal is to teach your child, not force him into submission. The next item that this book covers is how to interact effectively with other people. If your child is going to coexist with other people peacefully, then he needs to learn how to do so. The important idea here is to teach your child how to get along with others without changing who he is. And in order to do this, your child must build upon the foundation of respect and understanding for others. Blindly following social customs, or practicing the proper vocal inflections, is nothing more than superficial appearances. What really matters is that your child learns to treat other people the way he wishes to be treated, even if they seem strange. I also talked about the importance of not allowing other people’s immaturity to harm you, but to instead find and associate with people who will accept and respect your child for who he is. Subsequently, I talked about stimming, and the various causes and implications. There is nothing wrong with stimming; it is an enjoyable and relaxing way to spend time and get your stress out. But it can be problematic in some situations. As such, your child could benefit from learning which stims to use when. There is nothing wrong with stimming in and of itself, and your child needs to realize this, it is just that certain situations are handled best when your child shows some restraint. It is not about trying to blend in with others and hide the stimming. It is about trying to respect the idiosyncrasies of normal people who don’t like stimming. After that, I covered the topic of therapies. Which leads to the fifth main item that all parents should know: Therapy can help, but make sure that you focus on what is important, and don’t overdo it. There are multiple therapies out there, done in many different ways with many different techniques. Which technique you use is up to you, but you have to make sure that your goals are in order first. Focus on teaching your child skills which will help him to succeed in life, not on making him catch up to arbitrary milestones. P a g e | 176 When choosing the right therapy, it pays to consult with others but remember to make your own decisions. Professionals may have good intentions, but it is your job as the parent to know what is going on and make sure it is what your child needs. Just because some therapist suggests therapy ABC doesn’t mean that it will be the best thing for your child. And no matter what therapy you choose, make sure that you don’t make your child a nervous wreck in the process. Therapy is fine, but your child needs time to relax and unwind. Trying to pack his day full of therapy isn’t going to help him or you. Be patient, and help your child where you can, but realize that growth takes time, and that pushing your child faster than he can grow won’t work out well. The next chapter discussed medication, which brings us to the sixth main point of this book; medication can help, but only if handled correctly. There are many autistic people who take medication and they say it helps them to function better, relieve anxiety, and work more effectively. But trying medication first, without thoroughly researching it, is a bad idea. You need to first identify the problem, and take non-medication steps to fix it. And if that fails, then be cautious about the medication you use. Doctors are not infallible, and you shouldn’t use medication just because they recommend it. Be sure to thoroughly research whatever medication you want to give to your child, and then proceed with caution. After that, I talked about whether or not you should inform the child of his diagnosis. I explained why informing your child is not only the right thing to do, but also necessary for them to understand themselves. If your child is not diagnosed until later in life then there can usually be some denial, but that doesn’t mean you shouldn’t tell them. Just be patient and supportive. They may not want to accept it at first, but knowing who they are is something they will want to learn eventually. And lastly, I talked about the importance of being patient and helping your child to become the best he can be. There is no easy way to predict what will happen in the future, and as such I cannot say how much progress your child will make. But I do know that accepting your child for who he is, and helping him to deal with his struggles, will allow him the best possible life. He may never be normal, but that isn’t a bad thing. Whatever difficulties your child may face, he can still have a life worth living. So teach him how to live a life worth living, and not live a life spent trying to attain the goal of normalcy. Because even if your child learns how to fake normalcy, that isn’t going to make them happy. This book does not have all the answers to life’s questions. In fact, this book has barely scratched the surface. There are many other books, websites, and sources out there. And I recommend that you take time to read around a bit. There is nothing wrong with having more information to consider. Just keep in mind that nobody knows your child better then you do. It is up to you to consider what you have been told, and make your own decisions. Don’t let professionals, families, schools, neighbors, or even me pressure you into something that you P a g e | 177 don’t think is right. Take time to think about what you have read and then choose a path forward. In closing, I feel that I should offer some final advice. Having an autistic child is probably not what you were expecting as parents. You probably had plans for a normal child, and when your child didn’t come out normal it probably threw you for a loop. And I understand that panic, fear, and confusion are a natural part of having your plans go up in smoke. Being afraid does not make you a bad parent. In fact it makes you a good parent because it means that you are worried about the well being of your child. But do not let that fear distort reality. Remember that your child was born the way he was for a reason. If you panic, and let fear make your decisions for you, then you will wind up wasting much time, money, and effort trying to fix what isn’t broken. Your child is who he is, and the sooner you accept that, the sooner you will be able to move forward. What your child needs from you is not a miracle cure, nor expensive therapies. What your child needs from you is just some understanding, patience, compassion, and support. There are far worse things in this world then being different. It is true that your child will face challenges in his life that most people will not face. Your child will struggle with things that most people will not struggle with. But your child is still a person, and he is still your child. Everybody goes through struggles in their life, and your child is no different. What really matters in this life is not what struggles we have, nor how many struggles we have, but what we do about them. The true measure of a man is not the cards he is dealt, but how he plays the cards that he has. So accept the cards your child was dealt, and help him to make the most of them. P a g e | 178 Epilogue I have been working on this book for 7 months now, and every time I think I am finished, I wind up adding another chapter or two. This time is no different, as I already have ideas for 4 more chapters. However, I don’t want to keep delaying this book because I have already pushed back the finishing date by several months. So, I am going to release this book as is, and continue to work on it. In a few months time, I will probably release an updated copy of this book with some more chapters. I am also thinking of writing additional books about other topics such as effectively dealing with school life, what to consider when looking for a job, and so forth. I am also gathering some questions which I will probably answer in a FAQ book later. So, if you are interested in reading more of my works, getting an updated copy, or just looking for some more information, then come to my website (Its very professional looking). I will be posting more of my works on there when I get finish them. So, you might want to check back periodically, just to see what I have added. Here is the address: http://www.ASDstuff.com If this book has helped you, and you want to return the favor, then I would request that you give this book out to anybody who may benefit from it. This is a free book, and the advice given in here is available to anybody. So email it to your friends, or burn it on a CD and hand it out at parent/teacher meetings. Give a copy of it to any other parents with autistic children who might benefit from it. If you don’t want to email them the book, then just give them the website address; they can go download the book there. If you post on a message board about autism related issues, then please make a post mentioning this book, and provide a link to the website. This book was made to share, and the more people who read this book, the better.