Life on the Spectrum

November 1 is Autistics Speaking Day, also known as Autistic Communication Day, and my topic for the day is: “When do we get to speak for ourselves?” [Please note that I am using the word “speak” in this context to mean the same as “communicate.” I do not want to exclude those who communicate via other means.]

When you read about autism in the media, whom do you most often hear from? Do you read quotes from or see interviews with actual autistic people? Probably not, unless they are Temple Grandin. No, you most often hear from parents of autistic children (or sometimes autistic young adults) or you hear from autism “experts” — psychologists, psychiatrists and researchers. Even Temple Grandin’s mother is interviewed, even though we know that Temple is quite capable of communicating herself through speaking and writing. But the media is fixated on the perspective of parents.

There’s a fantastic blog post called “Person with Autism Manages to do Something.” (Read it here.) It satirizes the usual tone of articles about autism. A “person with autism” (never “an autistic person”) has managed to achieve something that is so surprising to the experts that the newspaper has written about it. They speak to Emily Expert, and they speak to “Joe Autie’s” mom, but never to Joe himself.

I recently saw a movie called “Life, Animated.” It’s a great movie about an autistic young man, but I was reluctant to see it. I was afraid it would portray autism as a tragedy. Happily, it didn’t do that. It was a truly inspiring movie. But at first I couldn’t shake off the negative feelings I had about it that made me not want to see it.

I finally realized why I had such a negative feeling about the movie without even seeing it. I had seen articles about it, and I had seen TV interviews with the filmmaker, and I had seen interviews with the father of the young man the movie was about, but I hadn’t (at the time) seen or heard anything from the subject of the movie himself. (I did later find a clip of Owen being interviewed on “The View,” and doing a great job, though one of the hosts does try to speak for him at one point.)

After reading yet another article that didn’t include Owen, the young man the movie is about, I posted a comment asking why there was no input from Owen in the article. The responses from other commenters said that autistic people can’t talk, and therefore can’t be interviewed. That we can’t speak or communicate (often described as our being locked in a prison) is a huge misconception about autistic people, and I’m afraid it’s one that is often used to deny us a chance to speak (or type or sign) for ourselves. People make judgments about us without even meeting us.

A couple of years ago, I contacted a local newspaper to suggest that they do a story about autism and talk to the members of the autism group that I organize. I got a response from a news reporter asking when he could arrange to talk to my parents and the parents or caregivers of other people in the group. I replied to him that my parents passed away in 2009 and 2013 and that I do not have a caregiver. I wish I had added, “and if I did live with my parents or a caregiver, I would still wish to speak for myself.”

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