Culturing Science

Culturing Science

Biology as relevant to us earthly beings

Learning to understand non-genius autistic people


Picture of an autistic teenage girl. (I felt weird putting a picture of my lil bro on the internet without his knowledge.)

When I unwrapped my New York Times on Sunday, I was met with a surprise: A front-page, above-the-fold story about a young adult with autism. The story — a must-read, which you can do here — follows Justin Canha, a 20-year old with autism as he stretches towards adulthood and aspires to an independent life. The feature, written by Amy Harmon, who won a National Academies communication award last week for her “Target: Cancer” series, is beautifully wrought and a joy to read. It’s already been praised as a brilliant and insightful piece of medical journalism on blogs and twitter.

But I want to praise it for something else. Many articles about autism focus on the highest-functioning people on the spectrum, who certainly struggle socially, but who are brilliant beyond average academically or in some other quirky way. (Often they have Asperger’s syndrome, which will no longer be a diagnosis with the publication of the fifth edition of the psychiatric handbook, the DSM-5, in May 2013, merging into the broader autistic spectrum.) Instead, Harmon celebrates Justin, a young man with a knack for cartooning, but whose autism is more familiar to me than in any profile I’ve read thus far.

And I am quite familiar with autism, as my youngest brother, Jonah, is on the autistic spectrum. There was a point in my life when I had to explain what autism was nearly every time I spoke about him. But I rarely have to do that anymore. As soon as I mention his diagnosis, acquaintances sigh with recognition, as if they know what that means. And, no doubt, they know more than they once did: autism awareness has never been higher, with one in 110 children born now diagnosed. But I wish I were still given the chance to explain. Too frequently, they follow-up with statements about his intellectual gifts — “Oh, he must be really smart then.” — a sign of the influence of the stories about those with high-functioning autism.

I usually laugh, and respond, “ah, yes, he is smart.” But I don’t mean ‘smart’ in any way that society currently values. At nearly 16-years old, Jonah can’t count change or multiply. He has favorite books, but he flips through them too frantically to actually absorb the text. I swell with triumph whenever we have a conversation that lasts longer than 30 seconds, an actual exchange rather than repetitions of his favorite topics, which include pasta shapes, wheeled vehicles, and what we’re having for dinner that night. What I see as his ‘smartness’ is his view of the world, little influenced by the social and societal pressures that feed my own insecurities.

In her article, Harmon gets at that smartness in her descriptions of Justin. It's very difficult to articulate but, given the expanse of a feature, she was able to do it through dialogue and his interactions with others. And my eyes teared up as I recognized Jonah, the kind of autism that I know and love so dearly, in an autistic character portrayed elsewhere.

I’m not trying to denigrate those profiles of high-functioning autistic people. Those people and those stories are important in their own right, for one. But additionally, from a journalism and awareness standpoint, it’s also so much easier for NTs — neurotypicals, as autistic people call us — to understand those who are high-functioning. After all, who hasn’t felt that they themselves had a useful skill that went unrecognized? Who hasn't felt socially insecure, held back by their own (in)abilities?

Many stories are also told about the parents of autistic children. As Wired writer Tim Carmody explains on his blog, Snarkmarket:

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.

In her piece, Harmon invites NTs to sympathize and understand an autistic adult in his own right. Autistic adults are in our society, and as the children now diagnosed with autism grow up, there will be even more. It is thus critical that assimilated folk learn to understand them and no longer ignore them, push them aside, or worse. Journalism can do that. Journalism can help people understand other people. And, as I toddle around in my baby-journalist shoes, that is truly inspiring.

So, thank you, Amy Harmon, for taking this step of bringing those non-genius autistic people, generally ignored after puberty, into public attention. Thank you for highlighting Justin's trials and spilling light onto people undergoing similar ones.

But it means more than that for me. When I talk about Jonah, everyone asks, "What is he going to do when he grows up?" And, honestly, I don't know. He still has five more years of school -- he started public high school this year! -- and I will not let anyone decide for him what he is capable of, and certainly not when he's still a teenager. But I dream of a world where people see him on the street and don't edge away, where society is more accepting of those whose brains are, well, atypical. I don't know if society will ever find a productive role for lower functioning autistic people. But a society whose citizens put in the bit of effort required to understand the individual autistic people they encounter? That is something we can work toward.

Image: an autistic teenage girl, via Wikimedia Commons

The views expressed are those of the author and are not necessarily those of Scientific American.

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