The numbers of children affected by Asperger Syndrome (AS) in the United States is almost twice that of the number of children who exhibit classic autism. Despite these numbers, there is little empirically guided information about how best to serve families of a child with AS. Most federally funded studies of AS to date have focused upon diagnostic criterion and early detection, genetic factors and psychopharmalogical interventions. Although social and family based behavioral interventions have been demonstrated to be highly effective in improving the social, behavioral, and mental health outcomes of children with disabilities, there is little research in this area.
Dr. Ernst VanBergeijk, Associate Dean of the Vocational Independence Program at the New York Institute of Technology and a Research affiliate of the Yale Child Study Center has studied the perceptions, coping strategies, and family functioning of parents of children with AS, and how existing support systems impact their family functioning. Based on focus group discussions with a sample of twenty-eight parents of children with AS drawn from community-based organizations, Dr. VanBergeijk has found that parental coping and family organization are strongly linked to positive mental health outcomes of children ranging in age from 8-21 years of age.
VanBergeijk and his team applied state of the art coding procedures to the transcription of the discussions and were able to identify the common substantive themes across the experiences of the parents. The most common themes the parents expressed in discussing their lives with a child who has AS were: (1) Isolation; (2) Ostracism; (3) Being blamed for their child’s behavior; (4) A need to be hyper-vigilant in correcting/anticipating their child’s behavior so as not to incur negative consequences from others; (5) Having to fight battles on multiple fronts in order to secure educational, medical, and social services and in dealing with their own extended families;(6) Sacrifice ; (7) Worries about their child’s safety and practical skills both in the present and in the future; and (8) Delightful surprises.
Josie, mother of Pete, a 7 year old boy with AS provided a quote that typified passages that were coded as a theme of isolation: “The things that bring me the most joy – talking to my friends on the phone, seeing them, going to the movies, and being around people that I love are the things he hates the most.” Rita, mother of Eric, a 15 yr. old with AS and Cerebral Palsy described her son’s isolation that impacted him and her as well: “The NT kid is invited to the birthday parties, the sleepovers, the Boy Scouts, the sports…As they get older they know these things. They understand. Why? Why? What’s wrong with me? He actually flat out said ‘Why am I disabled?’ There’s a whole lot of pain there – Not just what he’s experiencing, but you’re experiencing it too.” Parents described having to defend their child’s feelings and rights against a number of different constituencies. One parent described it as thus: “It’s a kicking, screaming battle. You are always fighting with someone… It’s the biggest nightmare in the world if you have a child with Asperger’s, because the child is a bright child…” The combination of the child’s average to superior intellectual ability and severe social deficits often left the focus group members feeling confused as parents.
Despite the perception of life with a child who has Asperger Syndrome as challenging, the tone of the focus groups was quite light hearted. The use of humor was one of the most frequently used and cited coping mechanisms that the parents employed. The transcripts of the discussions were punctuated with laughter. The parents of these children are quite resilient and resourceful in their use of coping strategies. Aside from humor, the participants in the focus groups employed a variety of coping strategies including: (1) Taking turns with their spouse in caring for the child with AS; (2) Spending time with friends & NT kids; (3) Having a new baby despite knowing the increased probability of having another child on the spectrum; (4) Cutting back on work to devote more time to the care of their children with AS; (5) “Normalization” which the parents described as trying to live life as though one of their children did not have AS; (6)Teaching their child relaxation & coping techniques; (7) Voraciously reading not only self-help books on the subject of autism, but medical and research journals as well; (8) Joining houses of worship and reading scripture; (9) Maintaining marital unity in the battles against school districts etc.; (10) Initiating lawsuits when necessary; (11) Joining parent support groups like ASPEN, AHA, etc.; and (12) a coping strategy referred to as “Finding the Gems.”
“Finding the Gems” refers to the appreciation of unique abilities that are both surprising and unexpected. One mother in the study developed cancer and underwent chemotherapy. There was a moment when she felt like giving up and was making the decision to stop her treatments. It was her child with AS who said the words to convince her to continue with the treatment. “ ‘The problem with you mom, is that you are focusing in on today and not looking at the future we have together.’ Where did that come from? Yet, he can’t read body language. He can’t read other people, but he can read me like a book” said Sara, the mother.
Five recommendations were generated from VanBergeijk’s study. First, is training mental health providers and school personnel on the stressors and coping strategies employed by the parents as well as effective interventions with this population. Second, design supportive services using an agency outside of the school district. These services must include respite care. Third, create a home visiting program with trained para-professionals who are parents of a child with AS. Fourth, train the parents in advocacy skills in order to influence school districts and legislative bodies. Finally, more research is needed on coping and effective intervention strategies with families who have a child with Asperger Syndrome.
Dr. Ernst VanBergeijk is the Associate Dean and Executive Director of New York Institute of Technology‘s Vocational Independence Program. He is also a research associate at the Yale Child Study Center’s Developmental Disabilities Clinic and is assigned to the autism unit. The publication of this article was made possible by a grant from the National Institute Health, LRP grant (Number, L30 HD053966-01).
