A major theme of The Politics of Autism is the uncertainty surrounding the issue. At The New York Times, Eli Gottlieb writes:
A 2011 study found that 39 percent of young people with autism in the United States received no services whatsoever after high school. Loneliness and social isolation are major issues. Unemployment among adults with autism — most of them higher functioning than my brother — is common. An estimated 90 percent of adults with autism are unemployed or underemployed.
State funding, it seems, remains keyed to the idea that the same maturational curve applies both to “neurotypicals” and those with disabilities, and apparently relies on a magical-thinking belief that these young adults will somehow smoothly make the transition into adulthood without special guidance. Some states now get matching federal funds, but the steep drop-off — and the steep challenge for parents and children — remains.
It’s part of a larger disconnect. There is virtually no current substantive national discussion on the fate of middle-aged or elderly autistic people like my brother, who are living in therapeutic communities, or with their aged parents or in group homes, or sometimes undiagnosed in mental hospitals. Little research money is spent on members of this demographic, and there is almost no public policy debate on how best to serve them. Not much is known of the particular health problems linked to their long-term care, or how their autism progresses and changes over time, or what the cumulative effects might be of the medication they take to render them tractable enough to live in social settings. As Dr. Joseph Piven, a professor of psychiatry, pediatrics and psychology at the University of North Carolina at Chapel Hill, has put it, “There is almost no literature on older adults with autism in the field, so we have virtually no knowledge base.”
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Karen Parenti, the vice president of community solutions for Bancroft, a large provider of services for individuals with developmental disabilities and brain injuries, which owns and oversees my brother’s residence, noted an urgent need for things like longitudinal studies on the long-term effects of medications used in autism care and financial support for lifelong learning programs and public education. To Louis F. Reichardt, the director of the Simons Foundation Autism Research Initiative, distinguishing the needs of adults with autism from those of the younger population is paramount: We need to “identify what features these adults share or do not share with the pre-adult population, such as I.Q., verbal ability and social skills. This might tell us to what extent maturity and aging influence the severity of the deficits associated with autism,” he wrote in an email.
