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The Affects of Autism in Families and Partner Relationships
The Affects of Autism in Families and Partner Relationships Chantal Sicile-Kira au t i s m — i t’s a fa m i ly t h i n g It has been estimated that the divorce rate is in the 80% range in Keeping any marriage healthy takes time, and all too often, time gets families with children who have an autism spectrum disorder (ASD) swallowed up by the autistic child’s needs. Many children with an (Bolman, 2006). Despite high rates of marital conflict, many couples ASD have difficulty sleeping, meaning that at least one of the parents do not reach out for couples therapy. Lack of respite is a major is sleep deprived. Usually, a role division takes place as one parent, reason. For most, finding a babysitter with whom they can safely usually mom, becomes the autism expert, while dad works harder to leave an autistic child who has toileting issues, little communication earn money or opts out. Differences of opinion exasperate an already skills, aggression and other inappropriate behaviors on a regular difficult situation—how much time, energy and money is to be spent basis is difficult (Sicile-Kira, 2004). Another reason is their lack of on helping the child is based on personal philosophy, and this is belief that they will find a therapist understanding of their particular where the couple may clash. Over time, dad becomes frustrated at the circumstance who can offer any true guidance, thus preferring to use demands of the mother to interact or play with a child who does not the precious time away from the child to confide in a good friend. know how, and moms become frustrated at the lack of involvement of their partners. Marital stress around the child usually starts when one or both of the parents realize the child is not developing properly. Couples with As well, a common pattern among moms is to wonder what they did a child who does not seek their attention in the usual way (i.e., eye wrong—drinking or taking medications during pregnancy, exercising contact, reaching out for or giving affection, seeking comfort when too much, allowing the child to be vaccinated; thus adding feelings of hurt) find it hard not to feel rejected or unimportant to the child. guilt to an already stressful situation. Also, the couple eventually feels For those whose child develops normally and then regresses around isolated because they feel it is hard to take an autistic child to people’s 18-24 months, there is the added loss of the child they knew slipping homes and are uncomfortable inviting people over. away. Consider also that a couple looks forward to having a child, and Sometimes the couple becomes closer than ever, bonded in their each person had an idea of what the expected child would be like. shared circumstances. Unfortunately, the stress of dealing with autism When the child does not match the expectation, or regresses, there is and all it entails (the constant and necessary advocacy at school, a loss and anguish felt by the parent not unlike the stages of grief that fighting for services and support, added financial burden, trying to people who lose a loved one experience (Sicile-Kira, 2004). handle behaviors and meltdowns at home) becomes a wedge pushing Other stages of added stress are getting a diagnosis (family physicians the parents further and further apart. Overwhelmed, stressed and are reluctant to make a diagnosis on a condition, once rare, for exhausted, the couple’s communication becomes impaired and even which they have no set treatment plan to prescribe); getting services autistic-like, lacking emotion and reciprocity. This can affect other (a constant struggle); dealing with adolescence (sexual development children in the family. appears, uncontrolled tantrums can be dangerous as the teen gets bigger); and post high school (the realization that few adult services are available) (Sicile-Kira, 2006). 18 f a m i l y t h e r a p y m a g a z i n e m a y j u n e 2 0 0 8 19 Grandparents Siblings in social activities. When one of the parents Unlike the parents who are totally focused The challenges of having a brother or sister has Asperger’s syndrome (AS), this creates on the autistic child’s needs, grandparents on the spectrum can have both positive and another set of challenges. are concerned about the effects of autism negative effects on a sibling. The factors The challenges of having a brother or sister on the spectrum can have An Asperger Marriage on their adult children (the parents), other grandchildren and future generations. They also suffer stress similar to that of parents that affect how a sibling adjusts include family size, severity of the brother or sister’s impairment, age of the sibling at the time of As Asperger’s syndrome has only been recognized since 1994, there are many both positive and negative effects on a sibling. and siblings. Grandparents are concerned the diagnosis, gender and age of sibling, and adults with AS who have been misdiagnosed about the difficult situations they see their their place in the birth order. The parents’ and treated for mental illness. Although own children experiencing. They may attitudes and expectations have a strong traditionally three out of four children the same activities, due to a need for sameness Finding out that a partner has an ASD can autistic child and have a different viewpoint provide the autistic child’s parents (who bearing on how a sibling adjusts. diagnosed with an ASD are male, there is and inability to empathize. It is this lack provoke different feelings. One of them is when it comes to how much effort and may be depressed, single, or divorced) with growing consensus that there may actually of empathy that has the biggest impact on anger at missing out on aspects of a marriage money to put into treatment, as well as what Many siblings develop a maturity and sense be more females with AS who have been the AS partner’s ability to understand his or to which the partner was looking forward. kinds of treatments to pursue. necessary support in the way of childcare, of responsibility greater than that of their misdiagnosed with other conditions. her partner, as well as any children, and to Another feeling is relief that the partner is financial support and advocacy. But, they Encouraging fathers to take a more active role peers, take pride in the accomplishments of The following information is based on recognize that others’ needs, perceptions and not trying to shut the other one out, he is may also contribute to stress because of with agreed upon treatments, generalizing their brother and sister, and develop a strong heterosexual partnerships, although it occurs thoughts are different from their own (Aston, just unable to provide the emotional response conflict regarding behavioral symptoms some of the skills the child has learned sense of loyalty. Siblings of ASD children in same-gender relationships just as it does in 2005). Poor empathy in the AS parent may needed (Slater-Walker & Slater-Walker, and treatment (Hillman, 2007). Sometimes through his ABA (Applied Behavioral are usually more tolerant of differences in the population at large. contribute to behavioral and psychological 2002). For children, the reaction is similar. grandparents get involved in the blame- Analysis) program, helping with structure, people and show compassion to others with problems in the children. However, a parent The positive aspects of having a spouse game about the possible causes of the Sometimes the diagnosis of an adult follows limit setting and discipline can be very special needs. However, many siblings feel with AS may be better able to understand and with Asperger’s can include the realization child’s autism, which can be particularly that of the offspring; sometimes it follows helpful. For this to occur, fathers need more resentment at the extra attention the child cope with a child who has the same diagnosis. that they are in most cases loyal, honest troublesome if the couple splits up and there information and training. A good online with autism receives, and some feel guilt over marital therapy; and sometimes problems at and dependable. Those who are diagnosed Branden H. Henline, PhD are disputes over custody. work finally lead to a diagnosis. A partner Anxiety and stress can run high in adults support group is The Father’s Network. their own good health. When young, they as adults who knew they were different feel with Asperger’s due to the difficulties in the In the D. Howard, EdD empowered and relieved once they receiveMichaelsame way, providing available and Grandparents may want to help by may think they can “catch” autism from their may seek out a therapist with complaints of babysitting, but most do not have the sibling. They may also feel saddled with what a cold, uncaring, and unemotional husband, communication and social interaction. diagnosis, as now they have a starting point willing grandparents with information and training in behavior management or may they perceive as parental expectations for although she may have chosen her mate Most lack what we think of as “common for finding strategies that are helpful (Carley, a little training that can enable them to step not have the physical strength required to them to be high achievers. Many feel anxiety because he appeared calm and reliable. An sense.” Body language and subtexts of 2008). in and give the parents a few hours of respite handle behavioral episodes. They may just about how to interact with the autistic AS adult may appear depressed due to his intonations are lost on them, so that they can be beneficial to all involved. Explaining want to play with the child and spoil him or brother or sister, and feel rejected by the flat affect, monotone, and lack of direct eye may hear the words that are spoken, but How Therapists Can Help to them why their grandchild acts the way her, and end up feeling rejected by the lack lack of reciprocality. Often, there is a feeling contact. Others may appear controlling and not understand the real message or context. There many ways in which therapists can help they do (i.e., sensitivity to sound and light, exchange. of typicalTheraphy Mag_Ad Art.qxd 11/8/07 2:21 PM having to1 of resentment at Page take on extra rigid, insisting everyone in the household Persons on the spectrum can be honest the family unit with an autistic member. For Family not being able to make sense of the world, household chores, coupled with restrictions stick to the same schedule and participate in to a fault and may make inappropriate families who need more information, or need lack of communication skills) is helpful. comments in public, thus appearing rude and access to a support group, the Autism Society of Suggest that they offer to do a specific task, uninterested in social situations. America has local chapters that can be helpful such as teaching the child to catch and return Expand Your Professional Horizons These same communication problems effect a person’s ability to keep a job or move up the (see the resource directory in this issue). Couples need to be encouraged to a ball or play a simple game, or teach a simple learning skill which needs much repetition Ph.D. in Depth corporate ladder. Temple Grandin, PhD, author and positive reinforcement. In this way, they with a of Thinking in Pictures and animal scientist, acknowledge and face the emotions of the can understand both the effort needed and grief cycle (i.e., denial, grief, depression, often speaks about how she almost got fired anger) and the loss of the child they were the excitement to be had in teaching their Psychology from her first important job because she kept grandchild an interactive skill. Grandparents with writing letters to the CEO telling him how he expecting, and to work through these will feel empowered knowing they are emphasis in emotions. Misdirected anger is often released could improve the company. She had no clue making a positive difference in the family’s Psychotherapy at school personnel in Individualized that the hierarchy at work dictated how, what, Educational Program (IEP) meetings or taken life, and the parents will feel supported and to whom you communicate. out on service providers, thus alienating the and more relaxed. Information geared very people who are there to help. towards grandparents can be found at the Physical demonstrations of affection can be Grandparent Autism Network. Pacifica Graduate Institute’s Ph.D. Program in Depth Psychology with Emphasis difficult for those adults who suffer from Encouraging couples to regularly schedule in Psychotherapy is designed for practicing therapists, social workers, mental health sensory processing disorder and are overly time together without the children is For the non-autistic sibling, knowing professionals, and others in the field who wish to engage in doctoral studies with an sensitive to touch. Often, the AS spouse important. However, this suggestion is that they can ask questions and discuss intensive focus on depth psychotherapy. is surprised that his partner and children useless unless the therapist can support them their feelings is important. Help parents are feeling unloved and unsupported, not in devising a practical plan for finding the understand the needs that siblings have, as Pacifica is an accredited graduate school with two beautiful campuses located realizing that his behavior does not show sometimes these get lost in the shuffle. The respite they need. a few miles south of Santa Barbara, California. In a unique educational format the support and love he has for them. non-autistic children need some quality time designed for doctoral candidates with existing professional commitments, residential The AS partner’s inability to read non- The lack of qualified babysitters can be a alone with their parents on a regular basis. class sessions take place monthly in a Friday, Saturday, Sunday sequence. verbal communication makes it difficult very real obstacle to finding time together Parents need to be aware of the sibling’s to differentiate between when a partner or continuing therapy. Working on good feelings in order to develop strategies of Call Wendy Overend, Director of Admissions at 805.969.3626, ext. 128 wants to have intercourse or just snuggle. communication skills and looking at how support to help him or her adapt. they can support each other is important. The or email email@example.com. Get information online at www.pacifica.edu Some couples report that the partner on the Provide siblings with information about 249 Lambert Rd., Carpinteria, CA 93013 spectrum insists on routine even in sexual couple needs to realize and accept that their partner may react differently to having an autism (such as why the ASD sibling acts the activity (Aston, 2003). way he or she does) in a positive manner at 20 f a m i l y t h e r a p y m a g a z i n e m a y j u n e 2 0 0 8 21 TherapistLocator.netAd:Layout 1 10/4/07 3:26 PM Page 1 the age level necessary, and suggest children’s day at work, giving her a kiss) is effective. References books which are available on ASD. The My research indicates that those willing to Aston, M. (2003). Aspergers in love: Couple relationships and family affairs. London: Jessica sibling may also benefit from joining a learn can be taught expected behaviors and Kingsley Publishers. support group for siblings of special needs strategies. Some of these include teaching the children. This can be extremely beneficial in “hidden curriculum” (i.e., what non-autistics Aston, M. (2005) Growing up in an Asperger family. Counseling Children and Young People Journal. “I want to thank you for the benefit of the helping the child realize they are not the only automatically learn and take for granted, Autism Society of America. (2008). Family life. TherapistLocator.net service that is part of clinical one going though this. making lists for visual learners). For more social competence at work, having a mentor there Retrieved April 9, 2008, from www.autism-society. membership at AAMFT; referrals from the Siblings need to be reminded often that org. who can explain the non-autistic expectations, Website come into our office on a regular basis.” they have just as much of their parents’ love Bolman, W. (2006). The autistic family life cycle: and writing a list or drawing a map of the Jim Thomas, LMFT, Approved Supervisor as their autistic sibling, even if parents may Family stress and divorce. Retrieved April 9, 2008, hierarchy and expected communications at each need to give more time and attention to the from asa.confex.com/asa/2006/techprogram/ level can be well worth the effort. The Global s1940.htm. “I definitely believe the service has enhanced my brother or sister with autism. It is important and Regional Asperger Syndrome (GRASP) that the non-autistic sibling have a private, Carley, M. (2008). Asperger’s from the inside and practice. People who use the service tell me that is a good online network for people on the out: A supportive and practical guide for anyone autism-free zone to call their own, and a they appreciate being able to get an idea of my spectrum; information for partners and families with Asperger’s syndrome. New York: Perigee. secure place to keep their precious objects. background and areas of expertise.” can be found at Asperger Syndrome Partners Hillman, J. (2007). Grandparents of children They also need to see that the sibling with & Individuals, Resources, Encouragement and with autism: A review with recommendations Nancy K. Gardner, Ph.D. ASD is given consequences if he wrecks their Support; and Families of Adults Affected by for education, practice, and policy. Educational things, and that he is expected to improve his Asperger’s Syndome. All of these resources are Gerontology, p. 513-527. behaviors over time. included in the directory at the back of this issue. Sicile-Kira, C. (2006). Adolescents on the autism In a partnership between a person with spectrum: A parent’s guide to the cognitive, social, Asperger’s syndrome and a non-autistic partner, physical and transition needs of teenagers with each partner must recognize the differences they Chantal Sicle-Kira, BA, is autism spectrum disorders. New York: Perigee. have and why. If the partner with AS refuses president of Autism Making A Sicile-Kira, C. (2004). Autism spectrum disorders: Difference, Inc., which provides The complete guide to understanding autism, to acknowledge that his behaviors and actions consultation, training and Asperger’s syndrome, pervasive developmental towards the partner are unacceptable, then there seminars on ASDs. She is the disorder, and other ASDs. New York: Perigee. is little hope for the relationship. author of Autism Spectrum Disorders (2005 ASA Slater-Walker, C., & Slater-Walker, G. (2002). An Outstanding Book of the Year), and Adolescents TherapistLocator.net Understanding the deficits, reinforcing the Asperger marriage. London: Jessica Kingsley on the Autism Spectrum Disorder, both published strengths, and acknowledging the needs of by Penguin. Her third book, Autism Life Skills, will Publishers. each partner is helpful. Teaching the willing be published October 2008. AS partner behaviors that are important to his spouse (such as greeting her when he Clinical Members, Help Clients find You! walks in the house, asking about the partner’s Each year, over 165,000 people use the AAMFT referral directory to locate a therapist. As an AAMFT Clinical Member, you receive a free Webpage on AAMFT’s premier online referral service, www.TherapistLocator.net. This page, which you can update yourself, FIELDING G R A D U AT E UNIVERSITY allows you to advertise your services for free. Clients are most likely to contact MFTs with personalized listings. Add details about your practice, including: • Office Hours • Practice Description • Special Certifications • Awards • Degrees Held • Areas of Expertise • Languages Spoken • Your Photograph We are pleased to present a new feature that is available to add to your TherapistLocator.net Web page called Healthe-Scheduler. Maximize your TherapistLocator.net listing with online scheduling. Potential clients can simply click on your scheduling icon and immediately schedule an appointment from your TherapistLocater.net profile page. AA American Association for Marriage and Family Therapy MFT Advancing the Professional Interests of Marriage and Family Therapists 22 f a m i l y t h e r a p y m a g a z i n e m a y j u n e 2 0 0 8 23
"The Affects of Autism in Families and Partner Relationships"