Departments: Your Questions Answered
Isabelle Rapin, M.D., Fellow of the American Academy of Neurology, founded the Child Neurology Service and Fellowship Training Program at the Albert Einstein College of Medicine in New York where she is a professor of neurology and of pediatrics.
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Q My child has Asperger's syndrome, and he is an only child. What will happen to him when my husband and I are gone? What services are available?
DR. ISABELLE RAPIN RESPONDS:
A Since Asperger's syndrome (AS) is a behavioral diagnosis with a broad range of severity—and not a specific disease—it's difficult to predict your child's future without more specific information. The services that are available and appropriate for your son will be dictated by his specific condition and needs. However, the following factors will shape the future of any person with AS: level of intelligence, social skills, and quality of intervention. With counseling and support, some people with AS are able to function independently, attend college, have a job, and get married.
Asperger's syndrome is one of the autism spectrum disorders, which are characterized by abnormalities of social interactions and communication, restricted interests, and repetitive behavior. The Department of Health and Human Services estimates that the prevalence of autism spectrum disorders in the U.S. is 1 in 110 births.
Many people with AS find it difficult to make long-term plans, so this responsibility often falls to their parents. If you have the means, consider establishing a trust to secure your son's future. Or, if he is handicapped, get information about benefits he may be eligible to receive. Does he need a group home or assisted living facility? If so, start looking now—the process of finding the right environment can take years. Finally, consider assigning a guardian, someone who will safeguard the interests of your child.
An excellent resource for support groups and online resources is the Autism Society of America Foundation (autism-society.com).
A success story for people with AS is to find a social and vocational niche that fits their needs as well as a support system that helps them function. Therefore, it's important for parents to talk to their children, let them know that there is a name for their difficulty, and remind them that they are not alone. Then let them decide what they want to do and help them find their niche.