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The State University of New York
At Potsdam
AUTISM AND THE SUPPORT NEEDED FOR
CHILDREN AND THEIR PARENTS
by
Leigh Ball
A Thesis
Submitted to the Faculty of
Early Childhood, Childhood, and General Professional Studies
In Partial Fulfillment of the Requirements
for the Degree
Master of Science in Education-General Professional Studies
Potsdam, New York
May 2006
2
This thesis entitled
AUTISM AND THE SUPPORT NEEDED FOR
CHILDREN AND THEIR PARENTS
By Leigh Ball
Has been approved for the
Department of Early Childhood, Childhood, and General Professional Studies
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4
ABSTRACT
AUTISM AND THE SUPPORT NEEDED FOR
CHILDREN AND THEIR PARENTS
May 2006
Leigh Ball
Masters of Science in Education-General Professional Education
State University of New York Potsdam
Bachelors of Science in Education-Elementary Education
State University of New York Potsdam
Autism is a disorder that is affecting thousands of children each year. With
the number of children being diagnosed rising from one in ten thousand a few years
ago to one in one hundred and fifty currently. Programs are needed to help support
these children, as well as their parents (Nash, 2002). The purpose of this research
was to determine if there is enough support for children and their parents in the
Watertown area.
The researcher chose to conduct questionnaires and participate in discussions
with parents who are currently dealing with raising an autistic child. Through
analyzing the questionnaire responses and notes taken during the discussions, the
researcher found that in Watertown and the surrounding areas, not enough services
are available for either the child or the coping parent. Children are receiving minimal
programming and there is very little support for the parents of such children. The
researcher being one of those parents finds that it is very frustrating and disheartening
to live in a world that knows so little about a disorder that literally runs your life.
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TABLE OF CONTENTS
PAGE
ABSTRACT 5
CHAPTER 1: INTRODUCTION
Statement of Problem 8
Question to be Answered 8
Purpose of Study 8
Limitations of Study 8
Delimitations 9
Definitions of Terms 9
Summary 12
CHAPTER 2: REVIEW OF LITERATURE
History of Autism 14
Definition of Autism 15
Types of Autism 16
Diagnosing Autism 19
Services for Autistic Children 22
Summary 29
CHAPTER 3: METHODS AND PROCEDURES
Statement of Problem 30
Question to be Answered 30
Purpose of Study 30
Participants 30
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Criteria for Selection of the Participants 31
Methodology 31
Rationale for the Methodology 31
Timeline 31
Data Management Procedure 32
Data Analysis 32
Data Management and Validity 32
Role of Researcher 33
Reliability 33
Trustworthiness and Credibility of Analysis 33
CHAPTER 4: RESULTS
Statement of Problem 34
Question to be Answered 34
Age and Diagnosis of Child 34
Services Currently Receiving 35
Is the Child Receiving Enough Services? 36
Home Program 37
Parent Services 38
Summary 39
CHAPTER 5: CONCLUSIONS AND FUTURE DIRECTIONS
Statement of Problem and Purpose of Study 40
Results of Study 40
Research Shows 41
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Further Studies and Recommendations 42
References 44
APPENDICES
APPENDIX A: LETTER OF CONSENT 46
APPENDIX B: QUESTIONAIRE QUESTIONS 48
APPENDIX C: CHECKLIST–EARLY INDICATORS FOR AUTISM 50
APPENDIX D: AUDIT TRAIL 53
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CHAPTER 1
INTRODUCTION
Statement of Problem
With the number of children being diagnosed with autism skyrocketing to
epidemic numbers, we need to evaluate the support that is currently available in the
Watertown area and determine if it is sufficient. Are children with this disability and
their parents suffering because there is not enough support?
Question to be Answered
Is there adequate support for autistic children and their parents in the
Watertown area?
Purpose of Study
The purpose of this study is to look at the different types of support/therapies
available to autistic children and their parents in the Watertown and surrounding areas
and determine whether it is an adequate amount. Data will be collected by
administering a questionnaire and taking notes during a focus group meeting. This
group consists of parents with autistic children.
Limitations of Study
This research will be limited by the following limitations:
1. Researchers bias of the study.
2. The numbers of questionnaires will be limited to the parents currently
attending a support group for autistic parents at Jefferson Rehabilitation
Center due to time restraints.
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Delimitations
This research will be further defined by the following delimitations:
1. The participants in this research are from a smaller town in upstate New York.
The conclusions in this study may not be applicable in other parts of the
United States.
2. The participants in this study are all members of an autistic support group for
parents. Therefore, it is assumed that they are proactive parents. The results
of this study may not be applicable to parents who do not participate in similar
groups.
Definition of Terms
The following is a list of terms and definitions that are used in this research
study:
Applied Behavior Analysis (ABA): ABA is a treatment that was founded by
Dr. Ivar Lovaas when he conducted research on children based on Skinner’s operant
conditioning. This theory plays on the idea that reinforcement is the key to behavior.
(Exkorn, 2005). This behavioral theory has been well researched and is used quite
often with younger children.
Asperger’s Syndrome: Asperger’s is at the high end of the spectrum.
Individuals with Asperger’s may be very bright, yet lack basic skills for social
interaction.
Attention Deficit Disorder/Attention Deficity Hyperactivity Disorder
(ADD/ADHD): A neurological disorder characterized by shortness of attention span
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and sometimes hyperactivity. Many children on the autism spectrum are also
diagnosed with ADD or ADHD.
Autistic Spectrum Disorder (ASD): This refers to any diagnosis within the
autism spectrum.
Childhood Autism Rating Scale (CARS) as defined by Exkorn (2005): “A test
developed at TEACCH to diagnose autism. The child is rated in fifteen areas of
ability, resulting in an assessment of nonautistic, autistic, or severely autistic” (p.
376).
Childhood Disintegrative Disorder (CDD): This is a diagnosis of children
that develop normally for the first two years and lose many of their abilities,
including speech some time after their second birthday.
DAN: DAN stands for the organization Defeat Autism Now. DAN doctors
concentrate on biomedical therapies and treatments such as special diets and
supplements as well as detoxification of toxic elements and metals.
Echolalia: This refers to the way some children on the spectrum speak. They
tend to repeat or “echo” rather than having spontaneous speech. Some children can
watch a favorite cartoon and when it is over, they can repeat the entire episode word
for word. However, they might have no spontaneous language.
Fragile X Syndrome as defined by Exkorn (2005): “A genetic cause of mental
retardation, in which one part of the X-chromosome is defective” (p. 377).
Inclusion Classroom: This is a classroom that houses not only regular
education students, but special education students as well. The special education
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student has a chance to learn from their typically developing peer. There is typically
more than one teacher in the room.
Individuals with Disabilities Act (IDEA) as defined by Exkorn (2005):
A federal law originally passed in 1975 that requires states to establish
performance goals and indicators for children with disabilities
consistent with the maximum extent appropriate with other goals and
standards for all children established by the state and to report on
progress toward meeting those goals. IDEA states that children with
disabilities must be included in state and district-wide assessments of
student progress with individual modifications and accommodations as
needed. IDEA promotes improved educational results for children
with disabilities through early intervention, preschool, and educational
experiences that prepare them for later educational challenges and
employment. (p. 377)
Individualized Educational Program (IEP): Most autistic children have an
IEP that clearly states the child’s goals and educational modifications. This is a legal
document that must be followed by all teachers that come in contact with the child.
Least Restrictive Environment (LRE) as defined by Exkorn (2005): “The
requirement under the IDEA that all children receiving special education must be
educated to the fullest extent possible with children who do not have disabilities” (p.
379).
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Occupational Therapist (OT): Occupational therapists work with children on
anything from handwriting to sensory integration to feeding. They play many roles in
an autistic child’s life.
Pervasive Developmental Disorder – Not Otherwise Specified (PDD-NOS):
This term is used for children who meet most, but not all, of the criteria for autism.
PDD-NOS is typically on the less severe end of the spectrum. Children with this
diagnosis have basically the same issues as children with autism and benefit from the
same interventions.
Physical Therapist (PT): Physical therapist work with children on the autism
spectrum that have difficulties with gross motor skills. They tend to focus on the
walking, running, climbing etc. activities.
Picture Exchange Card System (PECS): Autistic children who are nonverbal
use the PECS system to communicate. It is a system that uses pictures to
communicate instead of words. It is often an autistic child’s first step in
communicating.
Speech Language Pathologist (SLP): A qualified professional that works with
children to improve their communication skills.
Treatment and Education of Autistic and Related Communication (TEACCH)
as defined by Exkorn (2005): “A structured teaching intervention developed by
Division TEACCH of the University of North Carolina in the 1970s” (p. 306).
Visual Schedule as defined by Exkorn (2005): “A group of pictures or objects
that guides a child through the order of events or activities” (p. 386).
Summary
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Autism is being diagnosed in epidemic proportions. More and more research
is being conducted as to why this neurological disorder is affecting so many children
each year. It has become the most diagnosed disorder amongst children today. ASD
is five times more prevalent than Down Syndrome and three times more common
than juvenile diabetes (Nash, 2002). Parents are struggling to cope with this disorder
as well as find out why. While the number of children with autism is increasing, are
agencies able to keep up with such increases? Are there enough speech and language
pathologists and occupational and physical therapists accessible to meet such
demanding needs? Is there enough support available for the coping parents? This
study will examine the resources available in the Watertown and surrounding areas
for autistic children and their parents.
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CHAPTER 2
REVIEW OF LITERATURE
History of Autism
For decades parents have had the complex task of raising children on the
autism spectrum. This mysterious disorder that has been affecting families for
decades, as far back as the 1800’s, did not even have a name until the twentieth
century. Dr. Leo Kanner and Austrian pediatrician Hans Asperger first described
autism as they conducted research with children in the early 1940’s. Kanner was
studying children in America as Asperger was in Austria. The research they
conducted coincidentally at the same time and on the same topic, yet in different parts
of the world, helped coin the phrase autism, as we know it today (Exkorn, 2005).
According to Nash, in Kanner’s study of these children, he labeled the
children autistic if they were socially withdrawn, if they became dependant on
routine, had a hard time acquiring spoken language yet were too intelligent to be
mentally retarded. Asperger on the other hand applied the term autistic to children
who did not have a hard time acquiring verbal and nonverbal language yet were
socially different and developed “bizarre obsessions” (Nash, 2002). Asperger also
noted that autism had a tendency to run in families, with the father passing a gene
down to a son. Ironically enough, Kanner was also making such claims in his
research and these were the first clues that autism could be genetic. In the 1950s and
1960s beliefs that autism was genetic was replaced with beliefs that it was caused by
detached and uncaring mothers (Nash, 2002). Bettelheim coined the phrase
“refrigerator mothers” and blamed absent fathers for the children’s disorder.
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Bettelheim expresses in his book that for a lifetime he has been working with children
whose lives have been destroyed by their mother’s hatred. (Bettelheim, 1972). This
idea has since been proven false and his work has been discredited.
Definition of Autism
Because of the complexity of the disorder there is no one set definition of
autism. According to the National Autism Society of America (ASA) website, autism
is a developmental disability that typically appears during the first three years of life
and effects critical functioning of the brain. Autism interferes with the normal
development of the brain in the areas of reasoning, social interaction and
communication skills and usually appears during the first three years of life. Autism
is more prevalent in boys than girls; in fact almost four times as many, and affects
everyone differently (Powers, 2000). Some people with autism are high functioning
with clear speech and intelligence, while others fall under the category of mentally
retarded, never developing speech or language.
The earlier the disorder is diagnosed the better. Early intervention is the key
to success in the future. Signs of autism can be found very early in some cases.
Children with primary onset have signs from birth. They may be very fussy, hard to
calm, and nonaffectionate. Parents may notice that the child does not look at them or
recognize familiar faces. Primary onset is harder to diagnosis and unless there is a
sibling with the disorder or a genetic root doctors tend to refrain from diagnosing at
such a young age. Secondary onset, which is much more common, is diagnosed more
towards the age of two. Children in this case stop functioning normally or regress
and lose skills they had previously acquired. Parents may look back and describe
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their child as being very easy, never crying or fussing and being content to play by
themselves for hours with no need for concern until they fail to develop the ever
important communication and reasoning skills (Newman, 2003).
Types of Autism
The autism spectrum disorder can be subdivided into five categories. Classic
autism, once known as Kanner’s Syndrome and Infantile Autism, is now on the lower
end of the autism spectrum. Some children with classic autism also suffer from
mental retardation. There are three common symptoms associated with classic
autism. Those three symptoms are lack of eye contact, lack of pointing, and lack of
responding. Children on this end of the spectrum have little interest in making
friends and prefer objects to people. They often do not play appropriately with toys.
They tend to line them up, or a car for example, they might flip it over and watch the
wheels spin instead of race it around the floor. They also have a very difficult time
communicating, both verbally and nonverbally (Exkorn, 2005).
Rett’s Disorder is a rare genetic disorder that affects girls almost exclusively.
It is much rarer than classic autism. This disorder was named in 1966 after Dr.
Andreas Rett. With this disorder the child develops normally until between six and
eighteen months. At that time their progress halts or regresses. To receive a
diagnosis of Rett, all of the symptoms must be present which is unlike other Autism
Spectrum Disorders. Symptoms of Rett’s include difficulty with communication
skills, loss of hand skills and unusual hand movements including hand wringing and
flapping, clumsiness, sleep issues, seizures, slower head and body growth, and
difficulty breathing. Severe mental retardation may also be present (Exkorn, 2005).
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Childhood Disintegrative Disorder (CDD) is a very rare disorder. It is much
more common in boys than girls. The diagnosis is often much later. With CDD,
children typically develop until between three and five. At that time they lose speech,
language, social interaction including play skills and everyday functioning like
dressing and feeding skills. To meet the criteria for CDD, children must develop
typically for at least two years of age. This disorder can be devastating for families
(Exkorn, 2005).
Asperger’s Disorder is named after Hans Asperger. His work was not
translated into English for several years after his research was conducted, thus
making asperger’s a relatively new diagnosis. Children with Asperger’s tend to
average or above average intelligence and remarkable speech skills. Their
communication skills are picked up typically the first few years of life, giving them
strong verbal skills, which is much different from classic autism. Asperger’s is
typically diagnosed a little later in the child’s life, usually between the ages of five
and ten, because at first there appears to be no major warning signs. Symptoms are
not prevalent until later than the average autistic child. They develop their speech
and language normally; yet regress in their socialization and eye contact. This
disorder is also more common in boys than in girls, with a ratio of 15:1 (Exkorn,
2005).
A diagnosis of Pervasive Developmental Disorder – Not Otherwise Specified
(PDD-NOS) is given to children that show some, but not all of the symptoms
associated with classic autism, CDD, Rett’s or Asperger’s. Those symptoms may
include: difficulty using and understanding language, difficulty with socialization,
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inappropriate play with toys, they have a hard time adjusting to change, and repetitive
body movements. Children diagnosed with PDD-NOS are usually higher
functioning. More and more children are being diagnosed with PDD-NOS. Some
say that it is a softer diagnosis and that is why it is used more often (Exkorn, 2005).
B.F. Freeman, Ph.D., a professor of Medical Psychology at the UCLA School
of Medicine Department of Psychiatry and Biobehavioral Sciences created a chart to
outline possible indicators of ASD. (See Appendix C). He states that the presence of
a number of these indicators does not necessarily mean that the child will have an
ASD. It just means they should perhaps be tested. These indicators may include a
delay in social and communication skills. For example the child may exhibit no
babbling, pointing, or gesturing by twelve months. They may have no single words
by sixteen months and no two-word phrases by two years of age. In addition they
may not respond to their name or lose language or social skills at any age. Lack or
loss of eye contact is also an early indicator. Sensory-Motor wise they may have
issues with touching or tasting different textures, exhibit repetitive motor mannerisms
(e.g., hand flapping or wringing, twirling in circles), they may also be hyper or
hyposensitive to certain stimuli or sounds and cover their ears as a result. Socially as
they become older it may become more apparent when they fail to imitate, lack
imagination, has no desire to please parents or other adults, and fail to initiate
interaction with peers (Exkorn, 2005).
There are a handful of disorders that resemble ASDs, but are not. This is
important to keep in mind when observing a child who you suspect has ASD.
Aphasia is a speech and language disorder that may be caused by a brain injury such
19
as a stroke. A child with aphasia will have difficulty communicating, however does
not exhibit the typical ritualistic and repetitive behaviors. Fragile X Syndrome is the
most genetic cause of mental retardation. This disorder can be found through a blood
test. Children with this syndrome may exhibit signs of ASD; however they are shyer
than they are withdrawn. Several years ago, childhood schizophrenia was commonly
mistaken for a child with ASDs. While a child with schizophrenia does have
language and communication difficulties, the onset is much later, closer to the age of
ten. Other problems include hallucinations and delusions (Exkorn, 2005). These are
just to name a few. The key is if you are unsure about your child’s diagnosis with
ASD, or any disorder resembling an ASD, ask for a second opinion.
The cause of ASD remains a mystery to all. There are many theories, but not
one solid, proven fact. Because of the increased number of the last few years, more
and more research has been conducted as to why so many children are being
diagnosed. One common theory links autism to “biological and neurological
differences in the brain” (New Mexico Public Health Department 2004, p. 8).
Another theory being researched is the link between autism and vaccines. Thimerosal
in the vaccines has been thought to be a cause and more research is currently being
conducted to either prove or disprove this theory.
Diagnosing Autism
When and how to have a child diagnosed is a common question many parents
face. Parents, guardians, or caregivers are often the ones to first notice that
something may be wrong. The first step is to bring this to the attention of the child’s
pediatrician. In many cases, they may dismiss this as all children being different and
20
boys being slower than girls etc. They may also first suggest other medical testing to
rule out other conditions. This may be in the form of a hearing test, blood tests, an
MRI, or a CAT scan for the brain. Once they have ruled out any other condition the
screening should begin. It may even begin as the other tests are being conducted
(Exkorn, 2005).
Pediatricians’ next step is to direct parents to the county’s Early Intervention
Services. From birth to age three the state’s Early Intervention Program is
responsible for performing an evaluation at no cost to the family. In some cases the
evaluation will be conducted in the home or parents may be asked to bring their child
to a facility where they conduct evaluations. A multidisciplinary team of
professionals conducts the screening, with one person being an expert in the field of
autism. The team should include a developmental pediatrician, child psychologist or
psychiatrist, a neurologist and possibly a speech-language pathologist, occupational
therapist, and/or physical therapist all depending on the child and the severity of the
situation (Exkorn, 2005). According to the New Mexico Education Department,
evaluations and assessments that are recommended when an Autism Spectrum
Disorder is suspected should include the following several components. The first step
will be to look at the medical history of the mother and the child. The pregnancy,
labor and delivery will be discussed as well as history of seizures, vision or hearing
problems, and family history of developmental disorders including autism. The team
will next discuss the child’s communication and motor milestones. They will
question the family on any part of the development that may have been unusual
21
and when and why they first became concerned (Autism Spectrum Disorders:
Technical Assistance Manual, 2004).
Next, they will discuss with the family the child’s intervention history. Most
children begin intervention before a diagnosis is made. The team will review
previous evaluations and therapy reports. Observation of the child will begin next.
They will observe the child in a variety of settings, with and without family members
present looking at the child’s developmental level in terms of socialization,
communication, and play. They will be looking for unusual interests or behaviors
(Autism Spectrum Disorders: Technical Assistance Manual, 2004).
A speech and language assessment will be conducted in which they look at
expressive and receptive language skills of the child. The team of professionals will
make occupational and physical assessments. Motor development and sensory issues
will be addressed. If a child is not currently receiving services recommendations will
be made. If services are currently in place further recommendations for changes will
be noted. A complete physical examination will be conducted on the child. The
diagnostic pediatrician will look at the medical history of the child including
immunization history and lab studies. An audiological and vision exam will be
conducted. Lab tests may also be recommended (e.g. Fragile X) to rule out other
issues (Autism Spectrum Disorders: Technical Assistance Manual, 2004).
Evaluations and assessments that are conducted follow a certain criteria.
Standardized tests are conducted as well as observation and parent interviews.
Interview questions may be generated from the Autism Diagnostic Interview-Revised
(ADI-R) or questionnaires from the Childhood Autism Rating Scale (CARS).
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Examiners may also use tools such as the Bayley Scales of Infant Development-II,
which measures mental and motor scales, or the Vineland Adaptive Behavior Scales,
which measures communication and socialization, daily living skills, behavior, and
gross and fine motor skills. Whichever test they use, early diagnosis is critical. The
earlier the diagnosis, the earlier the child may begin treatment (Exkorn, 2005).
Services for Autistic Children
Parents often wonder the next step for the child and family. It is important to
begin services as soon as possible. It is also important for the parents and family to
cope with the news of the disorder. The two need to be worked on hand in hand. It
can be a very difficult time and there should be resources and support available for
not only the child, but for the family as well. Many towns have support groups
available for family members. According to the Individuals with Disabilities
Education Act (IDEA), every child with a disability is entitled to a free, appropriate
education in the least restrictive environment (LRE). Children under the age of three
receive services through their county’s Early Intervention. A committee meets and
develops an Individualized Family Service Plan or IFSP. The services recommended
in this plan usually take place in the home, and include professionals: speech-
language pathologists, occupational therapists, and/ or physical therapists,
coming into the home and providing direct instruction, conducting evaluations, and
providing training for the parents.
Parental involvement and carry over is the key. Skills utilized by these
professionals should be also be used by the parents on a daily basis as well. Children
age three to five are referred to the local school district, which provide preschool
23
services and special programs either in the home or at a preschool setting. An
Individualized Education Plan (IEP) is created for individuals age 3 – 21 and it
outlines the services and program the student should receive (Exkorn, 2005).
Parents often ask if one treatment is better than another. Since every child
diagnosed with autism is different with different characteristics and symptoms, there
is not one treatment will work for everyone. It depends on what the child needs are
and sadly on availability of services in the area in which you live. The key is to find
the one or ones that works for you and the child. Many times families use a
combination or more than one therapy to best meet the needs of their child (Exkorn,
2005).
Much research has been and continues to be done on the treatment options for
children on the spectrum. When choosing a treatment for a child, the Autism Society
of America created questions that parents should ask about the potential treatment.
These questions should include: (a) Will the treatment result in harm to my child? (b)
How will failure of the treatment affect my child and family? (c) Has the treatment
been validated scientifically? (d) Are there assessment procedures specified? and (e)
How will the treatment be integrated into my child’s current program?
The National Institute of Mental Health also suggests a list of possible
questions that parents may choose to ask when planning for their child with ASD
including (a) How successful has the program been for other children? (b) How
many children have gone on to placement in a regular school and how have the
performed? (c) Do staff members have training and experience in working with
children and adolescents with autism? (d) How are activities planned and organized?
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(e)Are there predictable daily schedules and routines? (f) How much individual
attention will my child receive? (g) How is progress measured and will my child’s
behavior be closely observed and recorded? (h) Is the environment designed to
minimize distractions? (i) Will the program prepare me to continue the therapy at
home? And (j) What is the cost, time commitment, and location of the program? It is
also a good idea to observe the program in practice when ever possible. This will
give you an idea of what the program looks like and the routine that will be followed
(Autism Society of America, 2006).
Almost all children diagnosed with ASD receive speech therapy. Some
children on the spectrum pick up language very quickly and some are very slow to
acquire these skills. Some children with ASD never speak and are mute for their
entire lives. Speech therapy is done either in the home, in the school setting, or in a
speech-language pathologist’s office. This therapy usually lasts from 30 minutes to
an hour. The therapist teaches the child to communicate both verbally and
nonverbally. They teach not only how to form and use words, but also use treatments
such as sign language and/or the picture exchange communication system (PECS)
(Maurice, 1996).
OT or Occupational Therapy is conducted in the home or in the school setting
by a licensed occupational therapist. The therapist works on the child’s fine motor
skills and muscular strength. They engage children in structured play while working
on tactile activities, motor coordination, daily living skills, and oral motor skills.
Occupational therapists use techniques such as brushing and joint compressions on
many autistic children. This technique provides the child with deep, tactile input in
25
order to calm them down or increase their focus and attention. These compressions
are recommended every few hours or as the child needs them.
Physical Therapy is conducted by a licensed Physical Therapist and they work
to increase their movements and everyday functioning and gross motor skills.
Exkorn, 2005, explains, “Some children with ASDs have low muscle tone, as well as
poor posture, balance and coordination. Physical therapists help increase endurance
and develop motor control and motor planning” (p. 299). A typical physical therapy
session usually lasts 45 minutes and is conducted one on one with the child and
therapist.
Many families use behavioral treatments. Ivar Lovaas first established
applied Behavior Analysis (ABA), often referred to as “Discrete Trials”, in the 1960s.
This therapy was modeled after Skinner’s operant conditioning. The children are
immediately rewarded for their positive behavior. ABA has been often compared to a
puzzle. The trials are used to teach smaller components of a larger concept. Children
are drilled for hours of one on one with a behavior analyst who has been trained to
work on the skills with autistic children. Each step begins with a specific cue or
direction. A prompt often follows; this may be a physical prompt, such as hand over
hand or a verbal prompt. This often gets the child started on the task. Reinforcers are
used after every trial in the beginning to encourage the child to respond in the same
way the next time the trial is conducted. The trials are completed repeatedly until
prompts are no longer needed. After each trial, the results are recorded. The
information is graphed and the parents and teachers review this material and
programs are adjusted to meet the needs of each individual. This treatment is very
26
individualized and can be tailored to the child’s learning style and ability. This
program can be conducted in the home or in the school setting (Exkorn, 2005).
ABA is one therapy that has a lot of research to back its success. Lovaas
originally recommends that the students participate in one-on-one ABA therapy for
30 – 40 hours per week to be the most effective (Heflin & Simpson, 1998). In the
1980s Lovaas conducted research on the ABA model with 38 young children with
autism. The first group of 19 children received 40 hours a week of one-on-one
therapy for two years and the other group had no more than 10 hours a week of one-
on-one for two years. A final group had no behavioral intervention. Lovaas found
that nearly half of the children who received 40 hours of intervention were
functioning normally and were placed in regular education classes by the age of six
and seven. Only one child in the ten hour a week session was made those kinds of
gains. In a follow up of those children who made the gains, eight were
“indistinguishable” from their peers by age 13. Several replications of Lovaas’
research have been done since and they nearly all show the same kinds of conclusions
(Delmolino & Harris, 2002). They go on to state that the teaching method of ABA
has proved to make a major impact on the lives of young children with autism. Over
the past three decades, several studies have been conducted in order to prove or
disprove the effectiveness. A common theme across each study is that children that
utilize ABA throughout their preschool years do tend to make major developmental
gains following the intense treatment.
A school based program that is used quite often is Treatment and Education of
Autistic and related Communications Handicapped Children or (TEACCH). This
27
method was developed in the 1970s at the University of North Carolina under the
direction of Dr. Eric Schopler. It consists of a structured approach to teaching using a
visual approach. What is expected of the student is clear and concise and the student
is able to work independently with the cueing and prompting of the teacher, therapist
or aide. Exkorn (2005) explained the philosophy of TEEACH out of North Carolina:
The TEACCH philosophy is guided by a deep respect for the individual with
autism. Each person’s treatment plan is based on a comprehensive assessment
of his or her skills, interests, and needs, and taking this assessment to develop
treatment plans that takes maximum advantage of each person’s unique
strengths while successfully addressing their areas of weakness, either through
education and training, or through environmental accommodations. (p. 306)
Another behavioral approach to teaching children with ASD is Dr. Stanley
Greenspan’s Floortime or Play Therapy. Floortime focuses on the child’s strengths
and brings the parents and/or therapists into the child’s world. It is a one-on-one
approach where the therapist does just as the name indicates and goes down on the
floor to the child’s level and follows the child’s lead. They first begin by observing
the child. They begin playing as the child is playing, imitating their actions. This
may be turning the car over and spinning the wheels. They then gradually, take the
car and begin driving it appropriately around the room. The idea is that eventually,
over time the child will mimic what they have seen and drive the car appropriately
around the room too. This type of therapy is spontaneous and unstructured as the
child does the leading. It is less like work and more like play. According to Exkorn
(2005), “floortime focuses on helping children learn the building blocks of relating,
28
communicating, and thinking” (p. 292). Research that Greenspan conducted reported
that 58% of the children involved with the program for two or more years, showed
significant improvement when tested again with the Childhood Autism Rating Scale,
(CARS) (Waltz, 2002).
Biomedical therapies have been utilized more and more by parents. There is
no one medicine that cures autism. However, parents swear by certain diets and
nutritional supplements that are set up by a series of doctors who call themselves
DAN Doctors. DAN stands for Defeat Autism Now. DAN doctors have been hand
selected by the Autism Research Institute with the goal of sharing information and
ideas to come up with a cure as quickly as possible. Dietary interventions include
removing gluten and casein from the child’s diet. The reason for this is the child’s
difficulty tolerating certain substances found in particular foods. Other parents
believe that adding certain vitamins or supplements help with absorption of certain
foods. While little research has been done, pediatrician’s report that high doses of
vitamins may or may not be beneficial for children, however it cannot hurt them in
anyway (Maurice, 1996).
Many parents believe that their child’s autism directly stems from the mercury
that is poisoning their little body. According to Levy and Hyman (2002), “the theory
supporting chelation suggests that heavy metal intoxication, especially mercury, is
responsible for the regressive form of autism. The source of mercury is felt to be
thimerosal, the preservative in immunizations” (p. 28). In this case they may choose
to have their child undergo a treatment called “chelation”. This process extracts
heavy metals and toxicities from the body. The chelation agent is administered into
29
the body in one of a number of ways, including: orally through pills, intravenously,
or through the skin by way of lotion, nasal sprays, or even through sauna baths. The
agents’ bind to the toxins in the blood and the children are able to rid themselves of
the toxins by way of urine. This is a relatively new treatment for children with
autism. Although this method has been used since the 1940’s to treat patients with
severe lead poisoning, skepticism about whether it is safe to treat children with autism
has swayed many families to either one side of the fence or the other.
Summary
Parents are completely overwhelmed when they find out their child has been
diagnosed with autism. It is a hard time for not only the parents, but the entire family
as well. Many parents don’t know where to turn or what is the next step. The
doctor’s often guide parents in one direction or another, yet due to the news they have
just received, it often takes days for anything to sink in. Next, the coping process
begins. The child moves on to intervention and what is left for the parent, but to sit
and worry and wonder why. While intervention is extremely important for the child,
the coping process is extremely important for the family. Unfortunately, support isn’t
always readily available for the family. More and more support groups are
developing as the rising need surfaces. It is important for parent’s to join one as soon
after diagnosis as possible. While it is important for the child to begin services right
away, parents need to begin the journey of coping with the disorder. While research
shows that no one treatment is the cure all and end all, it is important for the family to
choose the intervention that works best for the family and the child.
30
CHAPTER 3
METHODS AND PROCEDURES
Statement of Problem
With the number of children being diagnosed with autism skyrocketing to
epidemic numbers, we need to evaluate the support that is currently available in the
Watertown area and determine if this is sufficient. Are children with this disability
and their parents suffering because there is not enough support?
Question to be Answered
Is there adequate support for autistic children and their parents in the
Watertown area?
Purpose of Study
The purpose of this study was to look at the different types of
support/therapies available to autistic children and their parents in the Watertown and
surrounding areas and determine whether it is an adequate amount. This was
accomplished by administering a questionnaire to a group of parents of children with
autism as well as documenting comments of parents who participate in a parent
support group.
Participants
The participants in this study included parents with autistic children. The
parents all live in the Watertown and surrounding areas. The age of their children
ranged from ages two to ten.
Criteria for Selection of the Participants
The following criteria were used in selecting the participants:
31
1. Parent availability.
2. Willingness to participate in this study.
3. Autistic students in Early Intervention or a preschool program.
Methodology
The methodology utilized in this study will be teacher action research as
defined by Mills (2004). Teacher action research began by determining an area of
focus, followed by the development of teacher questionnaire questions. Next, there
was a search for previous research date studied on the chosen topic. Questionnaires
were conducted in a parent’s group that meets on a monthly basis at Jefferson
Rehabilitation Center. Upon completion and collection of the data, the results were
reviewed and analyzed by the use of inductive analysis and constant comparative.
Rationale for the Methodology
The teacher action research in this study uses qualitative techniques in
questionnaire form. The researcher through the use of a questionnaire gathered
information that was used for data collection and analysis for a one-month period.
Timeline
In this section we began with an examination of the three phases of this
research.
Phase I
1. Identified area of focus and rationale. Research focused on autism
and the support needed for children and their families in the Watertown
area.
2. Reviewed literature on autism and treatments.
32
3. Developed of questionnaire to be used in research.
Phase II
1. Sent out letters of consent. (See Appendix A)
2. Collected data using questionnaire. (See Appendix B)
3. Analyzed and sorted data.
Phase III
1. Developed an action plan based upon the findings from the study.
Data Management Procedure
The completed questionnaires were collected and notes from the parent
support group were analyzed. Data was then sorted into major themes. All responses
pertaining to age and diagnosis were labeled “A”. All responses pertaining to
services currently receiving and programs being utilized were labeled “B”. All
responses pertaining to a home program were labeled “C”. All responses pertaining
to services available to parents were labeled “D”.
Data Analysis
The researcher analyzed data for this by using an inductive and constant
comparative analysis. By using inductive analysis the researcher sorted the data into
categories. By using the constant comparative analysis the researcher compared data
across all groups. The researcher then looked for similar groups or themes based on
the questionnaires that were submitted.
Data Management and Validity
In order to maintain internal validity, the researcher utilized the following
procedures:
33
1. Peer check- Provides the researcher with the opportunity to test their
growing insight through interactions with other professionals. A
coworker, 6th grade Language Arts teacher with a Master’s Degree
checked the results.
2. Audit trail- Researcher kept a record of when I worked on the project.
3. Triangulation-A variety of responses from the questionnaires were
compared with one another to crosscheck data.
4. Collection of data over time- The data was collected over a one month
time period.
Role of the Researcher
This study allowed for research bias because the researcher is the research
instrument. Researcher has a son with autism and is a member of the parent support
group at both Jefferson Rehabilitation Center and a member of FEAT (Families of
Early Autism Treatment).
Reliability
The strength of the qualitative research will be reliable due to its triangulation
principle. The research will contain data research including a parent questionnaire
and several discussions at an autism support group.
Trustworthiness and Credibility of Analysis
The trustworthiness of this research is based upon the reliability of two
sources of data through triangulation as well as internal validity checks. Each
participant read through the data and analysis to see if they were in agreement with
the research results.
34
CHAPTER 4
RESULTS
Statement of Problem
With the number of children being diagnosed with autism skyrocketing to
epidemic numbers, we need to evaluate the support that is currently available in the
Watertown area and determine if this is sufficient. Are children with this disability
and their parents suffering because there is not enough support?
Question to be Answered
Is there adequate support for autistic children and their parents in the
Watertown area?
Age and Diagnosis of Child
Twenty parents answered the researcher’s survey. Each of those parents had a
child who had been diagnosed on the Autism Spectrum Disorder. The age of the
children currently range is two years up to six years of age. Fourteen of the children
were males, while only six were females. Official diagnoses were as follows. Four
parents indicated their child had been diagnosed with PDD-NOS. Four stated that
their children were severely autistic, due to fact that they are still nonverbal. One
little girl has been diagnosed with Rett’s Syndrome. The rest of the subgroup
indicated classic autism. All of the children were diagnosed at a very young age.
Fifteen of the children were diagnosed at two years of age. Three were diagnosed at
three and one shortly after turning four. Another little boy was diagnosed at 21
months. This is advantageous because research stated that the earlier the child is
diagnosed the greater the chance they have of flourishing academically.
35
Services Currently Receiving
On average parents reported using five different treatments simultaneously.
Speech therapy was the most commonly reported treatment used, with twenty out of
twenty parents claiming their child receives speech services at least twice a week for
30 minutes per session. This should not be surprising due to the fact that autism is a
communication disorder. Three quarters of the children are receiving occupational
therapy in the school setting anywhere from one day a week to five days a week for
30 minutes per session depending on the severity of the disorder. Half of the children
are also receiving physical therapy as well from one day a week to five days for 30
minutes per session.
Seventeen of the parents surveyed reported using the behavioral therapy
TEEACH. This is a program that Jefferson Rehabilitation adopted for its autistic
population. They indicated that the children were receiving this program at school,
and several also stated that they were also using components of this therapy at home
as well. For example, a picture schedule is a component of TEEACH that many
families have incorporated into their child’s daily routine at home too. Six parents
described their experiences with an ABA program. All felt it was a worthwhile
treatment, but indicated that it was a lot of work. Four of the six are currently using
an ABA program in their home and one parent indicated that ABA is being utilized in
the home and in school by the speech therapist as well as the child’s one on one aide.
Other components of ABA also mentioned by a few parents, included picture
exchange communication (PECS) and discrete trials. Floortime, a relationship based
36
intervention was used by two parents in the past, with what they considered little
success.
Several parents reported they had been in contact with a DAN doctor. As a
result, three parents currently had their children on a casein and gluten free diet. In a
casein and gluten free diet dairy, wheat, rye, barley and oats have been removed from
the child’s diet due to some autistic children’s systems inability to break down the
protein in casein and gluten products. Three parents also mentioned biomedical
approaches they were currently implementing. Of those included B-12 injections
every three nights by one parent and four parents discussed their child’s vitamin and
mineral supplement that is used daily. Two indicated that their children were on
“medication”, however did not indicate what that medicine was.
Is the Child Receiving Enough Services?
When asked about their child’s services currently received sixteen out of
twenty parents stated that they felt they were not getting enough to best meet the
needs of their child. Parents had a strong desire for more one on one time with a
professional, either a therapist or special education teacher. This was the most
common idea that parents believed they would add to enhance their child’s current
program. One mother stated, “They are trying to make my daughter perform tasks
that she does not have the foundation to complete. They are trying to put the wagon
before the horse. She needs more one-on-one to develop her skills!” Over half also
commented on the fact that they were happy with the services; however they wish
they could receive them for more time. Three of the parents mentioned that missed
37
sessions for reasons beyond anyone’s control was a concern. According to one
parent, “Makeup sessions in the school are not capable of being done due to the lack
of staff and current size of the workload.” Another parent stated, “It is unfortunate
that my child must suffer for not fault of her own.” Class size was mentioned by five
of the twenty parents. They felt that more could be accomplished if the numbers were
smaller. One parent commented about when her son began five months ago. She
said, “Five months ago there were only twelve in his class. They are currently up to
seventeen. This is too large of a group for my son to learn the basic skills he needs to
develop before kindergarten.” On a more positive note, many parents commented on
the staff currently working with their children, stating that they were a very
professional, caring, educated group of individuals working with their youngsters.
They were quick to commend the fine job they were doing on a daily basis! Overall,
there was a bit of concern by the parents that their child may not be receiving enough
services to reach their full potential and that is unfortunate.
Home Program
Each participant was asked if a home program was currently in place. Only
four out of the twenty have a program they are currently implementing in the home in
conjunction with the services they are receiving at school. Those parents stated that it
was a strict ABA program. Three have a professional come into the home each day
and work with the child one on one after school. They also indicated that the family
is paying for this service out of their own pocket. One parent stated that she and her
husband are also doing ABA with no outside help other than some training sessions
38
they attended in Syracuse. The mother of this child described the task as difficult.
She states, “It’s hard to come home and play therapist. Especially when he doesn’t
want to work. I want to just hug him and be mommy. On the other hand I see him
progress because of the work we’ve done and it motivates me that much more!”
Other parents stated that they use bits and pieces of programs. Several participants
mentioned visual schedules, PECS and sensory integration including: brushing and
joint compressions, being utilized in the home as well as school. When participants
were asked if they would be interested in a home program almost all of the responses
were yes. They did indicate that they would need proper training and support. Two
believed that the current program being utilized in the school setting was enough.
One mother compared school to boot camp. She said they are made to do too much at
school. They need home time to relax and be a kid.
Parent Services
A parent support group has been set up at Jefferson Rehabilitation Center.
This group meets on a monthly basis and involves the parents, guardians, and
grandparents of autistic children, and teachers and therapists as well. Each participant
in the research is a member of that group. Before this group began, less than six
months ago, most parents had not been involved in any kind of outside support. They
stated that they relied heavily on books, internet, and family members. FEAT
(Families for Early Autism Treatment) out of Syracuse recently extended their
chapter to the Watertown and surrounding areas. Even since the research has been
conducted they have held their first three meetings and many parents involved in the
39
JRC support group have also become involved in FEAT. Parents did express an
interest in proper training and information on how to set up programs. FEAT, as well
as the researcher are working to make sure these requests are met. The researcher
was able to assist in answering many of the questions posed by the participants.
Summary
In analyzing the data, the researcher found that parent’s in the Watertown area
believe that their child/children are receiving the bear minimum amount of services
that are available. Parents seem discouraged and disheartened by the fact that more
cannot be done. With more and more children being diagnosed each day this is a
problem that only seems to be escalating. Classroom sizes are increasing and the
number of therapists available is not even close to sufficient to meet these demanding
needs. More and more parents are reaching out to each other for morale support and
comfort.
40
CHAPTER 5
CONCLUSIONS AND FUTURE DIRECTIONS
Problem and Purpose of Study
With the number of children being diagnosed with autism skyrocketing to
epidemic numbers, we need to evaluate the support that is currently available in the
Watertown area and determine if it is sufficient. Are children with this disability and
their parents suffering because there is not enough support? This study examined the
different types of support/therapies being offered in to children and their parents in
the Watertown area and the researcher determined whether it is an adequate amount.
The researcher administered a questionnaire and took notes during a focus group as a
means of gathering the results.
Results of Study
The researcher found that there is not an adequate amount of support
available. Children are receiving the minimal amount of services. The reason for this
seems to be that with more and more children being diagnosed, the demand for
therapists also continues to increase. Unfortunately, organizations are having a hard
time meeting these demands. Parents continue to depend on books, internet, and
family for support. A couple of support groups have been set up in the Watertown
area, including a parent support group at Jefferson Rehabilitation Center and a
national support group has recently set up a chapter in the Watertown area. Families
for Early Autism Treatment (FEAT) has set up in Watertown where parents meet
every third Wednesday of the month with their primary goal being to provide parents
41
with support, training, and the help they need raising an autistic child. We are in the
process of setting up a play group once a month where the children can go and
interact. Parents are made aware of conferences that may be beneficial and training
in the local area on different programs.
Research Shows
Research shows that the earlier the child begins intervention the more chance
they have for success in the future. That is why many parents begin treatments even
before they have received a diagnosis. Unfortunately, many institutes that diagnose
children with autism have a several month waiting list. Parents may have an
inclination before hand and call their county Early Intervention sponsors. Children
begin speech, OT, and PT many times before a diagnosis is given. Programs can be
and should be set up as soon as a parent notices something may be wrong. The early
years are very critical in a child’s development. It is important not to waste those
precious days and months waiting for a piece of paper stating your child has autism.
According to Exkorn (2005), “studies show that a child’s neural plasticity- or the
brain’s ability to be shaped- is at its maximum when the child is very young (p. 88).”
She goes on to say that this is the reason children are able to learn a foreign language
at such a young age. The brain of a young person can take in this new information
and make connections, therefore reprogramming it. This is what needs to be done
with a child with autism. You want to rewire or reprogram it while it is still young
and fresh and while it is still capable of being rewired.
Choosing a treatment after your child is first diagnoses can sometimes be like
going to a foreign restaurant and having to choose from an overwhelming list of
42
unfamiliar dishes. It could take parents weeks or months to research the right
treatment for them. Many of the treatments out there today have been researched and
have been proved to work or not to work, however many are still relatively new and
haven’t had as extensive research done to prove it either way. This can be a very
confusing and difficult time. The key is to find the right treatment for your family
and run with it. Applied Behavior Analysis (ABA), mainly utilized in the home, and
Treatment and Education of Autistic and Related Communication Handicapped
Children (TEEACH), the school based program, have been researched for almost as
long as they have existed. They are the two most used programs in the country and
they are the two that have been found to have the most success according to Tissot
(1999).
According to the data collected, the two most widely used programs by the
participants were ABA and TEEACH. Their only concern was that those two
programs alone are not enough to best meet the needs of their children. While they
are also utilizing speech and language, as well as occupation and physical therapies
their major concern was the time spent one-on-one with their child. The parents who
participated in the research all belonged to a support group and were therefore, coping
with the demanding pressures of raising a child on the autism spectrum.
Further Studies and Recommendations
With more and more children being diagnosed each year, more extensive
research needs to be done in terms of finding the cause of such dramatic increases in
numbers. According to the CBS News website a story was produced entitled, “Is
Autism on the Rise? dated May 4, 2006, about 300,000 U.S. Children have been
43
diagnosed with autism. This is according to the largest national study done to date.
This means that approximately six out of every 1,000 school-age children have been
diagnosed with autism. While currently there is no known cure for autism, early
intervention is the key. There are so many treatments and programs to choose from.
The key is for families to find the program that works for them and they need to begin
this program at the earliest age possible. More research could mean a lot for
education in the future. We need to know why and we also need to know how we can
best meet the needs of these children in the future. For these children are the future!
44
References
Autism Spectrum Disorders: Technical Assistance Manual (2004). New Mexico
Public Education Department [Brochure]. Santa Fe, NM.
Autism Society of America. Biomedical and Dietary Treatments (Fact Sheet)
[cited 2004], 2003. Bethesda, MD: Autism Society of America. Available
from: http://www.autism-society.org/site/PageServer
Bettelheim, B. (1972). The Empty Fortress. NY, NY: Free Press.
Delmolino, L., Harris, S.L. (2002). Applied Behavior Analysis: Its Application in
the Treatment of Autism and Related Disorders in Young Children.
Infants and Young Children, 14, 11-17.
Exkorn, K.S. (2005). The Autism Sourcebook. New York, NY: Harper Collins.
Heflin, L. J., Simpson, R. L. (1998). Interventions for children and youth with
autism: Prudent choices in a world of exaggerated claims and empty
promises. Part I: Intervention and treatment option review. Focus on
Autism and Other Developmental Disabilites, 13, 194-211.
Individuals with Disabilities Education Act of 1990, 20 U.S.C. [section] 1400 et
seq. (1990) (amended 1997).
Is Autism on the Rise? New Study Gives Best Picture Yet Of How Many
Children Suffer From Disorder. Retrieved May 4, 2006 from Website:
http://www.cbsnews.com/stories/2006/05/04/health/
Levy, S. E., Hyman, S. L. (2002). Alternative/Complementary Approaches to
Treatment of Children with Autism Spectrum Disorders. Infants and
Young Children, 14, 33-42.
45
Maurice, C. (1996). Behavioral Intervention for Young Children with Autism.
Austin, Texas: Pro Ed.
Mills, G.E. (2004). Action research: A guide for the teacher researcher (2nd ed.).
New Jersey: Pearson Education, Inc.
Nash, M. (2002). The Secrets of Autism. Time Magazine, 159, 18-27.
Newman, B., Reeve, K.F., Reeve, S.A., Ryan, C.S. (2003). Behaviorspeak: A
Glossary of Terms in Applied Behavior Analysis. New York, NY: Dove
and Orca.
Powers, M.D. (2000). Children with Autism: A Parents’ Guide. Bethesda, MI:
Woodbine House.
Waltz, M. (2002). Autistic Spectrum Disorders: Understanding the Diagnosis
and Getting Help. (2nd Ed.) CA:O’Rielly & Associates, Inc.
46
Appendix A
Letter of Consent
(Date: month, day, and year)
Dear ____________________,
My name is Leigh. I am a graduate student in the General Professional Education
Program at State University of New York at Potsdam. I am working on my thesis
research paper. For my thesis, I am interested in examining whether there is adequate
support for autistic parents and children in our area. I am trying to obtain and gather
information through the means of a questionnaire.
The purpose of this letter is to request your assistance in answering the questionnaire
items so I can examine the services you and your child are currently receiving. If you
agree to participate in this study, please complete the items listed in the attached
questionnaire and place it in the prepaid envelope I have provided. You may leave
any item(s) blank on the questionnaire if you choose not to answer it or feel
uncomfortable with the item(s) asked. Upon receiving your questionnaire, this will
serve as permission to use and examine the information you have provided. Please be
assured that your responses and name will be held anonymous. All questionnaires
sheets are identical and provided envelopes are identical. Neither I nor anyone else
will be able to tell your responses from those of other participants.
If you have any questions about this thesis research project, please call me at home
(315) 782-3863 or email me at lball@carthagecsd.org. In addition you may contact
my faculty advisor at any time if you wish to speak to her about my thesis research
paper and any parts of the questionnaire. My advisor is Christine Sherretz. Her
contact information is: (315) 773-9007 or email her at sherrece@potsdam.edu.
Thank you in advance for all your help and assistance with my thesis research project.
Your results will help me compile a list of support available for autistic children and
their parents. I will use this list to inform new parents about the services available.
Sincerely,
Leigh Ball
47
State University of New York at Potsdam
Potsdam, NY
Please note: Approval by the provost of the State University of New York College at
Potsdam and the Institutional Review Board attests only that appropriate safeguards
have been included in the research design to protect human participants. This
approval does not imply that SUNY Potsdam endorses the content of the research or
the conclusions drawn from the results of the research.
I agree to participate in the research study as outlined above.
Signed,
_______________________________________________
(Signature)
_______________________________________________
(Please print name here)
______________
(Date)
48
Appendix B
Autism Research Questionnaire
1. Age and gender of your child? __________ M / F
2. What is your child’s official diagnosis?
___________________________________________________
_______________________________________________
3. What age was your child diagnosed? _________
4. What services (ex. Speech, OT, PT etc.) is your child currently receiving? (Please
include days and length of time for each.)
___________________________________________________
_______________________________________________
___________________________________________________
___________________________________________________
_____________________________________________
5. Do you feel your child is receiving enough services to support his/her needs?
Please explain.
___________________________________________________
_______________________________________________
___________________________________________________
_______________________________________________
6. Which programs do you currently use or have you used in the past to teach your
child (ex. ABA, TEECH, Floortime etc.)? Are these or were these programs
effective? Please explain.
___________________________________________________
_______________________________________________
___________________________________________________
_______________________________________________
7. Do you have a home program in place at this time? Please explain.
___________________________________________________
_______________________________________________
___________________________________________________
_______________________________________________
49
8. Would you take advantage of a home program if one were offered to you? Please
explain.
___________________________________________________
_______________________________________________
___________________________________________________
___________________________________________________
_____________________________________________
9. What services would you add, if any, to enhance your child’s current program?
___________________________________________________
_______________________________________________
___________________________________________________
___________________________________________________
_____________________________________________
10. What services have been offered to you as a parent of an autistic child?
___________________________________________________
___________________________________________________
___________________________________________________
___________________________________________________
_________________________________________
11. What other services do you feel would be beneficial to parents of autistic
children?
___________________________________________________
_______________________________________________
___________________________________________________
___________________________________________________
_____________________________________________
Additional Comments:
50
Appendix C
Figure 1 - Early Indicators for Screening of Autistic Spectrum Disorders according to
the New Mexico Public Education Department, (2004)
Sensory-Motor Speech-Language Social
Age (restricted (cognitive (relating to people
repertoire development) and to objects)
of activities)
Birth – 6 Persistent No No
months rocking vocalizing anticipatory
Inconsistent Crying not social
response to Related to responses
stimuli needs Does not quiet
Does not when held
react Poor or absent
differently to eye contact
adult voices Fails to
respond to
mother’s
attention
6 – 12 Uneven motor Babbling Unaffectionate
Months development may stop Does not
Difficult with Does not initiate games
responses to imitate Does not
textures sounds, wave “bye-
Failure to hold gestures, or bye”
objects expressions No interest in
Appears to be Does not give toys
deaf objects when Does not
Preoccupied requested to show distress
with fingers do so when mother
Over or under leaves room
reaction to Absent or
stimuli delayed social
smile
Does not
extend toys to
others
Does not
differentiate
strangers from
family
51
12-24 Loss of No speech or Withdrawn
months previously occasional Does not seek
acquired skills words comfort when
Hyper or Stops talking distressed
Hyposensitivit Gestures do May be over
y to stimuli not develop distressed by
Seeks Repeats separation
repetitive sound No pretend
stimulation noncommuni play or
Repetitive catively unusual use of
motor Words uses toys
mannerisms inconsistently Imitation does
appear (e.g., and may not not develop
hand flapping, be related to No interest in
whirling) needs peers
24 – 36 Unusual Mute or Does not play
months sensitivity to intermittent with others
stimuli and talking Prefers to be
repetitive Echolalia alone
motor Specific Does not
mannerisms cognitive initiate
continue abilities Does not
Hypersensitive (superior show desire to
or puzzle please parents
Hyposensitive ability)
(or both) Appears able
to do things
but refuses
Leads adults
by hand to
communicate
needs
Does not use
speech
communicati
vely
36 – 60 Repetitive No speech Foregoing
months behaviors may Echolalia characteristics
decrease or Pronoun continue, but
occur only reversal may become
intermittently Abnormal interested in
tone and social
rhythm in activities
52
speech Does not
Does not know how to
volunteer initiate with
information peers
or initiate Upset by
conversation changes in
May ask environment
repetitive Delay or
questions absence of
thematic play
53
Appendix D
Audit Trail
On February 5, 2006 I contacted Christine and discussed my topic and what I
needed to do to begin. She advised me to take the CITI Course in The Protection of
Human Research Subjects and we set up a meeting to discuss the research.
On February 10 and 11, I completed the CITI program tests. I printed my
completion record to bring with me to the meeting on Tuesday with Christine.
On February 14, 2006 I met with Christine in her office and we went over the
thesis packet she had ready for me. We discussed the different parts of the paper as
well as ideas for my topic. She set up the due date for the IRB proposal.
On February 16, 2006 I sat down and composed a list of questions for my
questionnaire. I typed this list and the letter of consent to participate in the research.
I decided that my focus group would be the autism support group at Jefferson
Rehabilitation Center for parents, grandparents, and guardians of autistic children.
Being a member of the support group myself I felt very passionate about the journey I
was about to undertake.
On February 21, 2006 I began my IRB application. This was an exciting task.
I couldn’t wait to begin my research. I put it all together and emailed this to Christine
to look at two days later.
March 4, 2006 the IRB application was ready to be sent to the board for
approval. At this time I began working on Chapter 2 of the paper, the literature
review.
54
On March 5, 2006 I began searching through literature I had on hand in my
home. I have several books and articles on autism due to the fact that my son was
diagnosed six months prior. I have read several books and every article that has come
out since that time.
On March 6, 2006 I sat down and broke down the components of chapter 2. I
decided how I would set this chapter up. I knew I wanted to give a little information
on the history of autism first, followed by the definition of autism, the causes and so
on. I then wanted to go into the different types and from there discuss the different
treatments and programs that parents are currently utilizing. I also knew that I
wanted to discuss the parent part and coping as well. Knowing from experience that
raising a child with a disability can be a very exhausting and challenging task and I
wanted to discuss the importance of support groups and parent training that is
available.
March 7, 2006 – March 31, 2006. I spent several weeks gathering the right
information and organizing it into the different sections of chapter two. This was a
very difficult task as there is so much information out there. I then began to put it all
into writing. I had a bulk of chapter two done when I finally received notice that my
IRB had been approved. I was ready to carry on when that time came.
On April 4, 2006 my proposal was approved by the IRB. I gathered my
questionnaires and had them ready to pass out at our next support group meeting,
which was three days away.
55
On April 5, 2006 I asked a coworker, another Language Arts teacher in the
building I work to review my first two chapters. She gladly took this home for
editing.
On April 7, 2006 I passed out questionnaires and took notes at our support
group meeting. We discussed several aspects of autism, sharing thoughts on different
treatments and programs being utilized in school and at home. I asked that the
participants return the surveys to school with their children in a nondistiguishable
envelope and the teachers agreed to pass these questionnaires on to me.
I began receiving surveys even the next day, April 8, 2006. As I collected I
began to organize and sort. I looked for common themes and began the labeling
process. I asked the participants to complete the survey within a one-month period of
time due to the due date of the paper. Each participant finished and returned the
survey to me within ten days.
On April 12, 2006 my coworker returned my first two chapters and we
discussed her suggestions and corrections. We had to look up a few different
examples of citing that we were unsure of.
On April 13, 2006 I made my corrections for the first two chapters. I was
ready to begin the next two. I began writing chapter 3 and set up an appointment to
meet with my advisor to go over the first two chapters and discuss chapters 3, 4, and
5.
On May 9, 2006 I sent on chapters 1 and 2 for Christine to look at before we
met. I picked up chapters 1 and 2 from her office a few days later and prepared to
meet her on May 16.
56
On May 16, 2006 we sat down and discussed my research to date. We looked
at the first four chapters and she guided me on chapter 5. I went home after our
meeting and worked on completing the last chapter. I still had to fix a few things on
chapters 3 and 4 and turn in chapter 5 to Christine by the end of the week. How
exciting – I was almost done!
On May 20, 2006 the paper was completely done! I finished chapter 5, table
of contents, abstract page, and reference page. I emailed Christine the final draft and
set up an appointment to print the final copy to be sent to Potsdam.
