Amy Harmon, “Autistic and Seeking a Place in an Adult World“:
Justin, who barely spoke until he was 10, falls roughly in the middle of the spectrum of social impairments that characterize autism, which affects nearly one in 100 American children. He talks to himself in public, has had occasional angry outbursts, avoids eye contact and rarely deviates from his favorite subject, animation. His unabashed expression of emotion and quirky sense of humor endear him to teachers, therapists and relatives. Yet at 20, he had never made a true friend.
There’s a tremendous gap between stories of children on the autism spectrum and stories of adults. (There’s a great joke that goes something like: Something magical happens to the autistic when we turn 21; we disappear.)
Stories of problems affecting children always draw a bigger response than those affecting adults. Remember AIDS and Ryan White? Thinking about someone as a victim and thinking about them as a problem are equally, well, problematic. But it is usually better to be a victim, and to be as pure and sympathetic a victim as possible.
There is also an imagination gap. Most readers of newspapers and consumers of serious media are typical, healthy, middle-class adults. They sympathize best with fates that are either totally fantastic or resemble their own. Most people find it easier to imagine being the parent of an autistic child. They find it harder to imagine being autistic and struggling with the problems of autistic adults themselves.
For my part, I am the former, and I find the latter extremely easy. Partly because of my son, and partly because of me.
The family had been living in Europe, where Briant had a promising career in international business and Maria Teresa, the daughter of a Brazilian diplomat, had embraced an expatriate lifestyle.
It’s hard to talk about autism without talking about class. It’s a developmental disorder that appears to disproportionately fall in successful families with histories of Aspy-like behavior. But it’s also almost impossible to tell how much this indicates a certain kind of hereditability and how much class affects diagnosis.
Autistic children with rich/educated parents will often get an Asperger’s diagnosis even if their children don’t fall under the traditional (and compared to the overwhelmingly broad Autism Spectrum Disorder, fairly specific) diagnostic rubric of Asperger’s.
The CW says that if you’re going to have a diagnosis, it’s great to have Asperger’s. Bill Gates and the anthropologist on Bones might have Asperger’s. Asperger’s still gets you access to services, but doesn’t mean you’re staring down a much more crippling disorder. “Autism,” on the other hand, is still a scary word.
Meanwhile, if you’re broke or have less education, your child’s more likely to go undiagnosed or misdiagnosed, and to be treated as slow or mentally retarded. And even if you get the “right” diagnosis, the kinds of therapies offered and your ability to take advantage of them will vary wildly depending on your resources. Maybe especially time.
This is all to say that just as autism stories overwhelmingly focus on children, not adults, they also overwhelmingly focus on the wealthy, not the poor or near-poor. And the link between autism and poverty is extraordinary once a child becomes an adult — what “independence” means in that context is very different.
This is also to say that while all these additional considerations are important, fuck that shit. Because autism does cut across class and race and gender and sexual identity and physical ability, etc. And because of that, it changes what we mean by diversity, what kinds of diversity count, what diversity we ought to care about, and how we think about all of these issues of identity and privilege taken all together.
Justin’s aide braced herself when he raised his hand one day in a class that had focused for several months on Africa. The students had just finished reading a book on apartheid.
“Mr. Moore,” Justin complained, “I’m tired of learning about sad black people.”
The teacher, who was black, turned around.
“You know what, Justin?” he said. “Me too.”