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Thursday, April 14, 2011

The Autism Baby Boom

Amy Lennard Goehner reports at The New York Times:
"We estimate there are going to be half a million children with autism in the next 10 years who will become adults,” said Peter Bell, executive vice president for programs and services of the advocacy group Autism Speaks.

Services for adults with autism exist, but unlike school services, they are not mandated, and there are fewer of them. Combined with shrinking government budgets, the challenges are daunting.

“We are facing a crisis of money and work force,” said Nancy Thaler, executive director of the National Association of State Directors of Developmental Disabilities Services. “The cohort of people who will need services — including aging baby boomers — is growing much faster than the cohort of working-age adults that provide care.”


Many young adults with autism have transitioned into large residential systems, whether group homes or institutions, offering round-the-clock services. But waiting lists can be long. And increasingly, in an effort to stem costs, states are moving away from the group home model into family-based care, a trend that started about 10 years ago.

“If an individual needs 24-hour services, the staffing ratio is one to one,” said Charlie Lakin, who heads the Research and Training Center on Community Living at the University of Minnesota. “That means fewer people will get served, resulting in long waiting lists for other families.” Nationwide, 59 percent of people who receive autism services are living with their families, according to Mr. Lakin.


Among the most powerful advocates are siblings of those with developmental disabilities. “Sibs have always played a really important role; we just haven’t identified them as sibs,” Mr. Lakin said. “We’ve identified them as agency leaders and social workers occupationally. But the real impulse of their work is that they were a sibling.”

Don Meyer, the founder and director of the Sibling Support Project and the creator of Sibshops, a network of programs for young siblings of children with special needs, said: “Parents need to share their plans for their special-needs child with their typically developing kids. After Mom and Dad are no longer there, it is likely it will be the brothers and sisters who will ensure their sibling leads a dignified life, living and working in the community.”

At, OAR President Peter Gerhardt writes on policy responses:

• There exists a significant need to further identify and research potential evidence-based, and socially valid, interventions for adolescents and adults with autism in the community. While interventions based upon the principles of applied behavior analysis have the most research, much more is necessary given the current emphasis on life in the community.

• Adult outcomes indicate that transition plans developed under the Individuals with Disabilities Education Act of 2004 (IDEA) for individuals with ASD fail to comply with the transition requirements contained therein such that individuals with autism are generally not provided with the skills necessary to successfully move from school to post-secondary education, integrated employment (including supported employment), adult services, independent living, or community participation (emphasis added). Not only does this need to change but the fiscal resources necessary to support such change are, potentially, available, under IDEA.

• Within the developmental disabilities adult system more effective strategies of staff recruitment, training, and retention need to be developed and implemented on a consistent basis to ensure both better-trained staff and more consistent programs and supports for adults with ASD.

• While continuing the necessary focus on biomedical, genetic, and/or etiological research, an addition emphasis on research addressing "quality-of-life" and related intervention variables for adults with ASD needs to be actively implemented and the results disseminated in such a way to accessible to both families and professional staff.

• Efforts need to be undertaken to shift at least some of the focus of current public awareness efforts away from emphasizing the deficits and challenges associated with living with ASD to include attention to the strengths and competencies of individuals on the spectrum and the benefits of their active inclusion in adult life in the community.