Tuesday, July 7, 2015

"So what are your deficits?"

I told a person on the train two months ago that I was autistic (I could have mentioned that I don't even like trains, but I did not). It was an interesting conversation, all around. I told the person I ran an ASAN chapter, I told him about the various points we were trying to cover.

Except. The person asked what my deficits were.

I struggled. I said, “I wouldn't frame autistic characteristics as deficits.” But I tried to not flinch from the blow.

“I don't usually talk to people on trains....” I continued, laughing a bit, apprehensive. Not sure where to go from here. I really wasn't. I mean, not a lot of people talk to each other on trains.

And then I tried to list things. Then I realized I was listing things in an effort to get the person to believe that I was capable of being an autistic leader, when I was sitting in from of them. And it made me think about how much the divisiveness costs progress, when you have to fit an impossible standard. You have to be both autistic and not autistic. People before me have said it often and better. 

Even the Wikipedia section on the autism rights movement criticizes the autism rights movement (using functioning labels, of course). It links to numerous critical articles for its sources. No mention of the diverse range of autistic people participating in it.

“So what are your deficits?”

Friday, July 3, 2015

Explaining autism is important

Explaining autism is important

I'm going to draw on something important here – my own experiences. So, I was diagnosed at the age of 14, in 2007. And no one explained it to me. Well, people tried, maybe. Just not very well. It wasn't explained as a disability. It wasn't explained as something that impacted me in every part of my life. It was explained as “well this is why you have trouble talking to people and with social interactions and why you have some of these behaviors.” There wasn't anything about sensory issues or effects it had on executive functioning or how it flavored my every experience.

Maybe it was difficult to see how to explain it to a teenager who was also dealing with some personal issues and hitting high school. Mostly, I think the people explaining it to me didn't see it as a disability. My 504 plan in high school (a step below an IEP), from what I knew of it, sought to ease my passage through high school. And it did, enough that I didn't have to self advocate very much or recognize that I had a disability. I just thought “Wow, I suck with people, this must be why,” and left it at that.

No one explained a social model of disability to me that would have helped me understand the impact it had on me. One of my acquaintances looked up my diagnosis on Wikipedia, and that was how I understood it for the next several years. I already knew I had ADHD, so maybe I was just used to being told I had this and that.

It's not enough to tell someone their diagnosis and expect them to find out everything on their own. I mean, Wikipedia was the extent of knowledge found on my own. Some people may call that handholding, but I call it decency and saving someone a lot of pain and trying to find themselves. As it was, I didn't figure out anything about autism until I went to college and met a couple more autistic people, one of whom was already into neurodiversity.

I'll say that again:

It's not enough to tell someone their diagnosis and expect them to find out everything on their own.


Telling people they're autistic / autism is a disability

Social model