Below is an excerpt from the New York Times about autism and adulthood. The jist of it is (as many of us know and will come to know soon enough) is that there are almost no support services in place for people with autism over the age of 22. There aren't even many "post-grad" programs within school districts that address the unique needs of the autism population.
Why? America is the land of supply and demand. We find a need and fill it. We build better mousetraps! We sniff out a market and flood it with products, services. Look at Memory Care/Alzheimer's facilities. We have one opening in my town. Because there are enough people with dementia and Alzheimer's to fill the beds. So why aren't there autism specific programs/housing/recreation in place as a rule - like there are for other intellectual disabilities?
Supply and demand. The supply is now starting to flood the market. Like my own daughters, who are 15 next week, 19 and 20.
Autism was first recognized and recorded in the 1930s. It was rare until the 1980s when the spigot turned on and now, in 2015, we're flooded with people starting to reach their adult years. We need autism specific housing - like memory care facilities. Not institutions like the ones we closed. No Willowbrooks. No state schools. We need facilities where people with autism can have schedules, routines, pictures, iPads, communication, order, behavior support, work that meets the IQ whether 69 or 139. In America, we don't act on anything until we have to - until it's a crisis and/or it can turn a profit for someone.
We need something BRAND. SPANKING. NEW. To meet the new supply. Join me, Dan Burns and JB Handley for a panel about this topic at the Autism Education Summit later this month in Dallas. Share your thoughts in the comments, please. Thanks. KS
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.
In reality, given the nature of the bond between them, I shouldn’t have been surprised. As is often the case between mother and disabled child, the two early on formed a deep, exclusionary attachment that relegated the other members of our family to the outer boroughs of maternal attention. My brother’s marathon tantrums, his gory public (and private) displays of self-mutilation and his regular physical assaults on our mother left me balancing as a boy on a narrow emotional catwalk between instinctual love for my sibling and blind rage. But none of that altered the depth of her feeling for him in the least. He was her main passion in life, and would remain so till the very end.
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. Read the full article here.