Adult, Autistic and Ignored By ELI GOTTLIEB

[Demeter]

http://www.nytimes.com/2015/09/06/opinion/sunday/adult-autistic-and-ignored.html?_r=0

TWO months before she died of pancreatic cancer in November 2010, my normally strong, stoical mother broke down weeping in my arms over the fate of my autistic older brother. Institutionalized for over 40 years, Joshua, then 55, was in a stable situation and seemed relatively happy. But my mother was undone by that fear that haunts all parents of disabled children: What will happen to them when I’m gone? Though I hastened to assure her that I would become his guardian and watch over him after her death, she was inconsolable...After her death, as promised, I signed the guardianship papers and found myself suddenly a part-time resident in the island nation of adult autism in America. What I didn’t realize at the time was just how uncharted the waters around that island would turn out to be...Roughly 500,000 children with autism will become adults over the next 10 years, and as they step through the door of age 21, they’ll find themselves inheritors of a sad paradox. The variety of federally mandated supports and services (under the aegis of the Department of Education) available to them until then will have expired; the source of their funding will switch to the far smaller pie of state-by-state money. These resources, along with Medicaid and Social Security, are more fragmented and difficult for families to navigate. So the financial support — used to train them for jobs, find housing, obtain therapy and counseling — will dwindle at the exact moment in time they need it most.

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.”

THERE IS SO MUCH MORE IN THE ARTICLE...GOOGLE THE TITLE, AND YOU SHOULD BE ABLE TO SEE IT ALL

[hunter]

1. Thank you for posting this.

Everybody needs a safe, comfortable place to be.

Those who can't navigate social services on their own need strong advocates. Without advocates (usually family) people on the autistic spectrum often end up homeless.

[Demeter]

2. Or dead

which is my fear.