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Wednesday, September 15, 2010

The First Diagnosis

In The Atlantic, John Donvan and Caren Zucker find the first person who ever received the formal diagnosis of autism:

The authors use the surprisingly happy story of Donald Triplett to make some observations about adults with autism, most of whom do not fare as well:
[Dr. Peter] Gerhardt, who is a former president of the Virginia-based Organization for Autism Research and is now developing a program focused on adolescence to adulthood at the respected McCarton School in New York, is considered among the top experts in the country working with adults who have autism. But he jokes that this is chiefly because he’s never faced much competition. “I have an entire career,” he says, “based on people not wanting my job.” Child development is the hot area in autism research; working with adults, Gerhardt says, “is not a career move.” Adults present greater challenges: they are big enough to do real violence in the event of a tantrum; they are fully capable of sexual desires, and all that those imply; and they’re bored by many of the activities that can distract and entertain children with autism. “People want to treat these adults like little kids in big bodies,” Gerhardt says. “They can’t. They’re adults.” As such, he argues, they’re equipped, as much as any of us, with the recognizable adult aspiration of wanting to “experience life.”


This leads to the question of where they will live. As it is, 85 percent of adults with autism still live with parents, siblings, or other relatives. But what happens when that is no longer an option? Large-scale warehousing is gone—and good riddance, most say. An obvious alternative is residential arrangements offering multiple spaces to people with autism, who can share support services under one roof in a setting that really is a home. At present, however, given both start-up costs and resistance from neighbors, the number of spaces in such homes is limited, and landing a spot can be extremely difficult: nationally, more than 88,000 adults are already on waiting lists.

All of which leads to an unsettling answer for those parents asking what happens, after they die, to their children with autism. We don’t really know.