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What diversity means
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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.”

Via Steve Silberman, who wrote a ten-years-old-and-still-amazing article and is now writing a book about all of this.

5 comments

I am always struck about the wealth presented in the high-profile stories about autistic people, especially adults, although they’re there about children, too (The Horse Boy comes to mind). Even Donald Triplett’s family, all those decades ago, had a level of financial wherewithal that made a huge difference for him, as did Temple Grandin’s family. Money can’t buy happiness, but it sure as shit can pay for therapies, safety nets, and all manner of other possibilities.

We can’t afford a $50K/y special school for our autistic oldest child (his diagnosis is Asperger’s, but only his use of language–echolalia, actually–“on time” led to that instead of another ASD), so we homeschool him and work our lives around that need. I’m happy and delighted to help my son any way I can. But even though that story at points had tears in my eyes because of how much Justin reminded me of our oldest child, I think also of our own wherewithal relative to theirs. As the oldest child of neither a diplomat nor an international businessman, as someone who grew up in a small Texas town clinging to the lower edge of the middle class, I’m never going to be able to rate to, say, trying out my son’s response to swimming with dolphins or stop working myself (which I do from home) while my husband supports us.

I am so anticipating Steve Silberman’s book, and I’m expecting a much broader representation of what neurodiversity really means, one that represents diversity across many layers.

I’m an aspie, but I didn’t come from a privileged background, although my parents did their best to provide me with as many opportunities as possible within their modest means. Being an aspie, for me, has meant spending a lot of energy on things which most people take for granted. Most people don’t constantly have to evaluate their state of discomfort for signs of loss-of-control. I do. I have learned to split my mind in two: one that actually lives, and one that monitors that life to make sure I stay “in line” with society’s expectations. It works for me, but it’s demanding and leaves me little energy to deal with others to any extent.

Over the years, we learn. But it takes years to accomplish things that “normals” do without thinking. I’m a whiz at solving software problems, but feel far less competent in handling my own.

This is likely why so many autistic and asperger’s people tend to disappear as adults: we don’t have the energy or the skills to play the game that society insists we do if we want to be a part of it. To you, that game is “just being social”. For us, it’s like 5d chess with life-or-death consequences…

Lori says…

Wow – really? We are very wealthy and my son was given the ASD dx and we were told he would never speak and would end up in an institution! He is 9, and mainstreamed with an aide. He is a super bright kid with behavioral challenges. He is very much autistic…no aspie here!

Sharat B. says…

@DR: That’s really profound, and weird because although I have never been diagnosed with autism or anything of the kind, I tend to do that same splitting of the mind. I wonder if it isn’t a positive state of mind. In that it drains you of energy, and leaves little chance to socialize, I don’t think so. But if a person was able to use that monitoring perspective to correct course on the fly in social situations, wouldn’t that be fascinating?

I really hope that I don’t seem to be trivializing your plight. What I am trying to say is that there are “normal” people who adapt in similar ways to you!

Janet H. says…

My closest friend has Asperger’s, so I definitely relate to DR’s comment. It breaks my heart to see the struggle he goes through on a daily basis in order to “play the game that society insists we do.” In regards to his alleged anti-social behaviour, I have had my own friends and family tell me that he “just needs to get over it.” Sad.

Interestingly, I also relate to Sharat B.’s comment. I have never been diagnosed with autism or Asperger’s, but I also do the mind-splitting, and it is indeed exhausting. This is typical behaviour of introverts, which, Sharat, perhaps you are.

Anyway, I could go on at length about introversion, but I would indeed be trivializing what this article is about. Just struck me as interesting, is all.

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