Autistic and Overlooked
As people around the globe acknowledge World Autism Awareness Day today -- proclaimed by the U.N. General Assembly last December -- it is important to consider an aspect of this devastating disorder that has been curiously and persistently neglected: the lifelong care of autistic adults.
While greater media attention on autism is certainly welcome, virtually all coverage of autism in recent years has focused on a cure or on the education of young autistic children. You would think that, like children in a fairy tale, autistic children never grow up. Yet parents are getting old, tired and ill caring for their adult children. And they are doing it while state and federal budgets, already lean, are getting perilously thinner. How is society going to pay for the permanent care of millions of our citizens? What kind of lives are we going to give them? How are we going to support their families, many of whom care for their children into adulthood as they themselves wear down?
The explosion in autism is striking: A disorder on the autism spectrum is diagnosed in roughly one in every 150 American children. Assuming that that rate holds, by 2016, less than a decade from now, the number of American adults (those 22 and over) with autism is expected to be nearly 1.5 million. The costs to society and to American families will be staggering.
Though many Americans are familiar with the 1997 Individuals With Disabilities Education Act, which mandates a free and appropriate education until age 22 for children who have disabilities, few seem to know or care that there is no similar legal mandate for them after age 22. As states struggle to serve their most vulnerable citizens while dealing with budget cuts at all levels, the number of Americans with disabilities swells.
Autism affects a relatively small number of the 54 million Americans with disabilities. Some of those people are temporarily incapacitated, but millions will never be cured. Residential facilities are limited and often have long waiting lists. Virtually all these facilities suffer from high turnover in direct-care staff, who are typically underpaid and overworked. On top of this, an autistic person can be difficult to place. Many group homes don't accept people with autism, whose sometimes-trying behavior can require individual aides. People with autism often cannot work in their community and require day care. The help that states can afford and the treatment that parents want for their children can be at odds. Also, disabled adults must meet certain criteria to be eligible for state-funded housing and care; yet there are no guarantees. In Massachusetts, where I live, adults with Asperger syndrome -- a high-functioning form of autism -- are not eligible.
My own family is a case in point. Two years ago, at age 53, I learned I had an incurable form of non-Hodgkin's lymphoma. In an instant, my life expectancy was reduced to an additional seven to nine years. Suddenly, our plans to keep our autistic son, Randy, living at home with us indefinitely looked highly risky. When we sat down with our case manager from the state Department of Mental Retardation and requested an eventual residential placement for Randy -- through my sobs -- we were told that the agency would need six months' notice.
Now the question is: Do we wait until I'm actually dying, or do we give up our son before we want to? Like most families, we are not rich. The life insurance policy we have for Randy, who is 21, will not come close to providing for his lifelong care. Our daughter is just two years out of college, and we want her to be free to live her life unhampered by caring for her brother.
We are fortunate that Randy is able to work in our community, albeit with supervision. When he turns 22 this summer, he will begin a job while living at home. But because of budget cuts, our area office of the Massachusetts Department of Mental Retardation, which is to fund Randy's work program (it costs money to have the disabled work when they need supervision), lacks the money for transportation. As long as my condition remains stable, I'll drive Randy to and from work -- typically, a half-hour ride each way. When my health fails, my husband, who works at home, will have to drive Randy. Or we'll have to hire a driver, no small expense.
Still, for us, transportation is a minor issue. It's the big picture -- who will love and care for Randy after his father and I are gone -- that keeps me up at night.
Linda H. Davis is the author, most recently, of "Charles Addams: A Cartoonist's Life" and is president of the nonprofit SAGE Crossing Foundation.