Monday, July 16, 2012

Person With Autism Manages To Do Something

Autism is a mysterious and puzzling disease, and children who suffer from having been diagnosed with autism are equally puzzling and mysterious. But the remarkable actions of Joe Autie can give us valuable insight into the mind with autism. Autie, 32, is a person who experiences a label of autism, but has overcome his disability and managed to do something.

Emily Expert, who has never met Autie but has met other people with autism, and knows countless people who know people with autism, runs an organization for family members of children with autism. According to Expert, “This really remarkable thing that Autie has done can help us all to understand what goes on inside the mind of a child with autism.”

Many people who make their living talking about autism agreed that it is extraordinary that Joe Autie has done something in spite of his handicaps. Experts also agreed that it was definitely Autie’s autism which caused him to do this particular thing. “We can assume that because one person with autism did this thing, all people with autism are also drawn to do this thing,” said Dr. Scientist, an autism researcher. “The question is – why?”

Of course, because autism is such a mysterious affliction, we may never know truly know why.

How does Joe Autie feel about his achievement? “We’re very proud of him,” said his mother.

Emily Expert agrees, but she also cautioned that even though Autie’s actions do, of course, give us universal insight into the inner worlds of people with autism, we must be careful that none of those insights are positive in nature.

“This is a very inspiring story and has a lot to teach us about people with autism,” said Expert, “but it’s important to bear in mind that the very fact that Autie managed to do something is evidence of how high-functioning he is. Many children with autism never manage to do anything. Autie’s actions are extraordinary and praiseworthy, but they are the exception, and they definitely don’t reflect well on autism or people with autism as a group.”


So yeah, that was my best shot at writing an article about autism! How do you think I did?

Here's why I'm attempting satire: this last week William LeFever, an autistic hiker who'd gotten lost in the desert, was found by a rescue team. Articles about this occurrence all featured a sentence like this: "Authorities credited autism training at least in part for helping them locate LeFever. One of the rescuers suggested searching near the river because he learned that those with autism are often drawn to water, reports The Salt Lake Tribune."

We can all spot the flaws in that logic, right? We all know that there's not actually any evidence that autistic people are "drawn to water," right? Everyone understands that LeFever was by the water not because he's autistic but because humans need water to survive, right?


The problem is that autistic people are considered so exotic and mysterious that you can say pretty much anything about autism in a news article and get away with it.

Sunday, July 8, 2012

Disability Catch-22s

This post was first published on the AAPD intern blog.

So here are some things a lot of people don’t know about me:

About twice a month I walk in front of a moving car by accident. About twice a month I choke while drinking.

Here’s another interesting thing: when I try to talk about autism, and why I as an autistic person should have a voice in the discussion of autism, some non-autistic parents and professionals get mad at me. They say, “You’re a college student, you clearly don’t have the same kinds of problems that someone with Real Autism does. Your autism must be so mild that you are irrelevant to this conversation.” And then they start talking about what Real Autism looks like, often referencing their own children, and they’ll say things like “My kid has Real Autism that is so very real, he is unaware of dangers and might wander into the street and get hurt!” or “I worked with this little girl who had Real Autism, and she was a choking risk because she had difficulty swallowing!” And then they say “Clearly, these things never happen to you, because you can write a research paper.”

I don’t understand the ideas people have about disability sometimes.

Like, obviously not all autistic people are the same, and our disability affects us all a bit differently. But at the same time I find it frustrating that when disabled people try to advocate for ourselves, we are often immediately dismissed as “not disabled enough” just by virtue of the fact that we have opinions we want to express. This doesn’t just happen in discussions about autism – I’ve seen people with all kinds of disabilities be accused of being “not disabled enough for your opinion to count” when they start talking about their rights.

So today I was in Starbucks spitting coffee on myself and coughing, and people were asking me if I was okay and I wanted to say “I’m fine, this happens all the time,” but I couldn’t really breathe enough to talk. And what I was thinking about, as I recovered from my accidental attempt to breathe frappucino, was how angry it makes me that so many non-disabled people consider disability a moveable goalpost.

Because here’s the thing: the same person who will argue that disabled people locked up in institutions need to be there because they might walk in front of a car or choke on food or water, will then turn to me and say that even though I have these experiences fairly regularly, I'm not Really Disabled, and they can tell because I don’t live in an institution.

Can you spot the catch-22?