I just spent a long weekend up in Cambridge, MA, where I participated on ASAN’s symposium on the Legal, Social, and Ethical Implications of Autism Research. It was a great experience and I enjoyed the opportunity to meet some old and new friends. Discussion topics included bias in interpretation of research, issues in allocation of research dollars, ethical implications of genetic research and interventions designed to make individuals more compliant and less “autistic-looking,” and approaches to underdiagnosed populations such as adults and women. The symposium will be posted online soon (both transcript and video).
This was the first time I actually stated, in front of an audience, that I was Autistic (and, I think, only the third time that I said, at a public event, that I had any sort of disability). I was nervous at the time and am still nervous now. I don’t think I knew, when I signed up for this, that the whole thing would be webcast and put on YouTube for all posterity to see. That means I can’t really take it back. I had no plans to, but the finality of it is sort of frightening.
Moreover, for political reasons, like everyone there who was on the Autism spectrum, I referred to myself as “Autistic” (because, once people reach adulthood, it’s often very difficult to tell the difference between Autism, PDD-NOS, and Asperger’s, and making distinctions can create perceived hierarchies among diagnoses). But the rest of the world does think that there’s a significant difference between “autism” and “Asperger’s,” and might either:
- Think that I’m way less capable than I am, even more so than if I’d told them I had Asperger’s;
- Think I’m totally exaggerating or making up my disability because they think I’ve got “mild Asperger’s” and that autism is “way more severe” than that.
Finally, I am very self-conscious about how much I was fidgeting and stimming throughout the thing. I basically can’t sit still for more than about 20 minutes before I start fidgeting in some way. While I have some strategies for making this less noticeable in professional situations (like if I’m in a courtroom), I didn’t inhibit it that much while on this panel because, hey, they already know I’ve got a disability so it seemed silly to spend lots of effort concealing it. That said, I tried to keep it from showing up on the webcast because I didn’t want potential non-allies seeing it. I had a laptop in front of me that was showing the live video feed and I tried to only fidget when the camera was not on me, but the feed was on a bit of a delay so sometimes it was a few seconds before I realized I was again visible on camera.
I understand that I am lucky in that I can conceal my disability somewhat, or at least the nature of my disability. Others can’t. Still, any possibility of losing that advantage is scary. I was particularly unnerved by the (Autistic) participant who kept asking how I could possibly be an attorney with “all of your social skills problems.” I don’t think I had any notable social issues at the conference (besides acting nervous when people were being very chaotic and loud while milling around, something I felt entitled to do given the context), so his assumption that I was horribly socially incompetent probably just came from the diagnosis itself. If that’s what my own community assumes about me, what can I possibly expect from everyone else?
Edit to above: I should acknowledge that it also really felt good to be able to speak openly about my disabilities and still have my opinions heard, and to be able to sit on a panel without having to worry all that much about fidgeting, tapping, scratching, or whatever. If I didn’t find it somewhat rewarding, I probably would never have done it. Especially when I was there, and surrounded by awesome people who actually got it, it felt great to be authentic and open. Nevertheless, it was (and is) also pretty scary.