Self-Disclosure Angst

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:

  1. Think that I’m way less capable than I am, even more so than if I’d told them I had Asperger’s;
  2. 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.

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5 Comments

Filed under Being Weird, Practicing Law While Weird

5 responses to “Self-Disclosure Angst

  1. LWY

    For what it’s worth, I’d say that you come off as intense and passionate – you’re definitely a ‘character’ – but (to someone who is relatively unfamiliar with these disabilities) I wouldn’t have pegged you as autistic. I’d say that you display an exceptional level of thoughtfulness and emotional maturity.

    • Twitchy Woman

      Thanks L! I don’t think there’s necessarily a conflict between being thoughtful and emotionally mature and being autistic (I spent the better part of my teenage years obsessively thinking about how to understand people, which I guess is common among teenagers in general to some extent), but it’s a common perception and I’m always worried that people will hear “autistic” and assume I don’t have those traits. My main continuing issues are sensory and attentional, and to some extent not picking up on the ways social conventions differ in new contexts.

  2. Gallian

    I’d have to look back at the feed to be certain, but I’m pretty sure you introduced yourself as having “multiple disabilities” and didn’t mention an ASD specifically until your point about self-care (do I eat processed food because I’m a career woman with no time or because I’m autistic with no coping skills) – a point I thought was very well argued.

    Re: stimming. I wasn’t obsessively watching for it, but I was idly curious about the visual presentation of all of the self-advocates, and I didn’t notice any significant stimming from anyone. If always seems like it must be worse and more noticeable when you’re the one “in the hot seat.” do remember though that my visual processing skills are crap, so if the video feed tells a different story, don’t blame me.

    I also came away from the symposium energized, though in different ways than you. My LJ is friends only these days, but if you’d like to see what I wrote and don’t have access, let me know and I’ll send it to you.

    • I think I said something like “multiple disabilities, including autism.” I noticed myself saying that because I thought immediately afterward “agh, people-first language is wrong in this context!” and worrying that the sentence structure made it sound like I was actually saying I had an autism diagnosis rather than an ASD/Asperger’s diagnosis. I was tripped up by the parallel sentence structure. Apparently it was not as noticeable as I thought though!

      My stimming may have been partially hidden by the laptop in front of me, but the camera had a different angle and wasn’t blocked by the laptop (although often I appeared to be behind other participants).

      I tend not to read LJ much these days but I think that I have access as your friend… I will check it when I get home tonight.

  3. Hi S. I was live-tweeting the whole thing for The Thinking Person’s Guide to Autism. Remember bits of your talk — but not much as I was busier writing things down rather than processing.

    This post reminds me that I need to watch some (not all) of the presentations again, or preferentially, read the transcripts.

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