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Autism Is Not About You


People with autism get a relentlessly raw deal in the media, and even from the largest organization supposedly devoted to helping them, so it was refreshing to finally see a popular, influential figure help tell a story about autism that kept the focus where it belonged. In his beautiful interview with Ron Suskind, The Daily Show host Jon Stewart pointed out what should be obvious, but which gets very little play in the "awareness" community: having autism is mainly hard on the people who have autism.

Suskind, the Pulitzer-winning political author whom you may remember as the guy whom the Obama administration wasn't all that happy with a few years back, appeared on The Daily Show to promote his new book, "Life, Animated: A Story of Sidekicks, Heroes, and Autism," which focuses on Suskind's son, Owen. There are two remarkable things about this interview, the first being that Stewart and Suskind actually make Owen's experience with autism the focal point of the discussion, rather than Owen's effect on the people around him. The other is the clip that Stewart plays at the conclusion of the interview, of the graceful adaptation Owen has made to connect with his father (you can watch the extended interview here):

Through my writing about autism and the media, I've cyber-met many parents of children with autism who have their priorities straight, but it's been my experience that they are the minority. In real life, I've never met an autism parent who didn't want to bitch about how hard it is on their own lives, or trade pats on the back over our mutual suffering. I'm sorry, but if you have a child with autism, and your first thought every day isn't how hard it is to have autism in a neuro-typical world, then you are failing at life.

That's nothing, though, compared to the treatment of autism in the media. Aside from the toxic anti-vaccination crowd, which has made autism its favored Macguffin, the mainstream media has engaged in a relentless campaign of slander against people with autism. When it was revealed that the Sandy Hook Elementary School mass murderer had an Autism Spectrum Disorder (ASD) (along with unidentified mental health issues), every single news outlet reported, without a shred of scientific basis, that the autism either may have been, or was, responsible for that crime.

Even before that, though, there were efforts to connect autism with mass murderers who weren't even on the spectrum. Leading that effort was MSNBC's Joe Scarborough, who tried to pin the Aurora movie theater shooting on autism, and said that "more often than not," mass shooters are "somewhere on the autism spectrum." At that time, the total number of mass shooters who had ever had a confirmed diagnosis of an ASD was precisely zero. Scarborough offered a non-apology that was exposed for the hollow excuse that it was when he fairly gloated at the news of the Newtown shooter's diagnosis, and made the assertion again.

What makes Scarborough's slander that much more sickening, though, is the fact that he is the parent of an autistic child himself, which not only deepens the betrayal but which gives his audience the false impression that he's some kind of expert on autism.

Then, there's Autism Speaks, the most prominent autism charity, which gave Scarborough cover for his slander. They make a hell of a magnet, but in case their continued embrace of Scarborough wasn't telling enough, here's what they think of people with autism:

Perhaps most sickening, though, is the surprisingly common narrative that says parents of autistic kids sometimes have no choice but to murder them. That was the gist of a report, by CBS News' erstwhile investigative reporter Sharyl Attkisson, explaining and excusing the murder of 14 year-old Alex Spourdalakis by his mother and his godmother. It's probably the most evil piece of mainstream journalism I've ever seen. That's saying a lot, even within the narrow subset of Sharyl Attkisson's autism reporting.

I have two children with ASDs, but I don't think it makes me an expert on autism. My oldest is about to get his master's degree from the Stevens Institute of Technology, an accomplishment for which I take zero credit. My layman's understanding of autism is that it's like being dropped off in a country where you don't speak the language, and no one understands your language, except that obstacle applies to every one of your five senses. Succeeding in a world like that, one which refuses to meet you anywhere near halfway, is a remarkable achievement tht I can't begin to get my head around.

My youngest, Liam, is going to be nine this year, and I saw a lot of him in Suskind's story. He and Stewart joked that it was a lucky thing that Owen's affinity wasn't for Tarantino movies, but one of Liam's (many) affinities is for the film Road House. Fans of that film will immediately understand why there's an index card stapled to my kitchen wall which reads "For a good Buick call."

He's also fond of vacuum cleaners (especially Dysons), school buses (there are "emergency exits" all over my house, John Carpenter's The Thing, and, for a time, Kill Bill, but he watches Road House every night as he goes to sleep. It's a challenge to figure out what all of these things mean, and Suskind's insights are incredibly valuable in this regard, but it is nothing compared to the challenge that Liam faces in getting his dumbass dad to understand him. Hearing someone in the media actually trying to see the world from the point of view of a person with autism, which should be the norm, was like a bolt of lightning.

Autism is not about you, Jenny McCarthy, Joe Scarborough, Autism Speaks, autism parents, and shitty reporters. It's not about how hard your lives are, or what saints you are for not murdering them, or what bogus science you're spreading. It is about the children with autism, and the adults that they become. If you love someone with autism, if you care at all about them, you need to fix yourselves. A good place to start would be to listen to them.