Disclosure and Being an Autistic Cog-Sci Major

[[Crossposted from my Tumblr.]]

Well, I’m out as autistic in the group for disabled students at my university.

I wish I could be out everywhere. But I’m in a major that’s happier with us being studied than being the ones doing the studying. I’m at a university with a professor who describes autism as “a cruel disease that afflicts children;” who claims that we “completely withdraw from the world socially;” who asserts that mirror neurons are behind what makes us human while claiming that autism is characterized by a loss of mirror neurons. I know this professor is famous and respected around the world, and only rarely criticized for his rhetoric.

He’s not in my department’s faculty, but he works with someone who is. It’s a small, close-knit department. What would the rest of the faculty think of me if they knew?

I’m not certain.

I’m not asking. I don’t need my fears confirmed. I don’t need my identity torn away from me by people who have spoken to me for five minutes. (Because that’s what being told “You can’t be autistic!” feels like to me. It’s not a compliment. It’s not a relief. It’s “You’ve been lying to everyone you trust for seven years and you never belonged at the one place you felt halfway safe.”)

And if I were believed? I want to go to graduate school. I need research experience. Given what they think of us, how likely would I be to get it?

But if I have to conceal why I’m interested in this field, am I really better off? I don’t want to lie outright, so all anyone gets when they ask me why I’m a cognitive science major are evasive, overly general statements. I can’t answer questions about which particular aspects of the major I’m interested in.

They think we’re not whole people. And because they think that, I can’t be. Not in public, anyway. I’m all facades and plausible-sounding excuses. People tell me I should get more involved in things — that new experiences will bring me out of my shell. And all I can think is that I should get involved — the experience will give me more stories to tell, more fuel for conversations, more ways to talk about what I’m doing so I can escape talking about who I am. It’s how to succeed.

Right now, I don’t want to succeed. I’d rather be. But I don’t know how to do that.

Still Alive (but no promises)

Because when I make promises of future activity here, none seems to follow. There might be some, there might not.

Anyway, I'm still alive. A lot has happened since I last posted, most of it good, some of it rather less so. I moved to Silicon Valley in summer of '09 and have been attending community college there. I submitted my transfer application to UC San Diego's Cognitive Science program last month, so if nothing goes wrong, I should be there come next fall.

Meanwhile, my body decided this spring that I should join the subset (10-20%?) of people with cystic fibrosis who develop diabetes. I didn't find out until July, didn't get any actual practical advice until November, and didn't start actually taking insulin until yesterday. So now I'm preparing to go to a Christmas concert while my body keeps trying to head towards hypoglycemia.

And I had a two-month relationship with another autistic person which I ended (in part) for reasons that the people who go on about Cassandra Syndrome would likely consider impossible. Or possibly they would just claim that I was "too severe" and that he was "not really autistic."

Read this.

From Asperger Square 8: Neurotypical Privilege.

I've been thinking for months that something like this needs to exist, did the barest beginnings of typing a list up in late June, but then realized that intersectionality was getting in the way of declaring many things autistic-exclusive. What Bev and several people in the comments have compiled is really what I wanted to get at.

That's not to say that autistics are the only ones who lack many of the privileges listed, but there's a specific way of phrasing things here that's useful and doesn't demand all the parenthetical remarks that I was inserting.

Diagnosis and something that sounds a bit fishy.

I took the ADOS today. I'm now autistic rather than "Asperger's." I don't feel fundamentally changed.

I'm being told that it's best I start the Regional Center application process tomorrow.

The fishy-sounding thing is this: I'm being told that I need a guardian appointed through the Regional Center in order for anyone to get Power of Attorney if I'm unconscious and unable to make medical decisions for myself. I questioned whether this was really necessary, as non-disabled people are able to sign forms to grant others Power of Attorney. Apparently I can't do this as a disabled person unless I have a guardian? That sounds really bizarre to me, and given what I know of guardianship/conservatorship, I don't want to rush into it. But I'm being told I must do it before eighteen or it will get too difficult.

Does anyone know if the statement I heard on that topic is accurate?

Eep.

I was on vacation and came back to my Statcounter to find a surge in people coming to my blog. It's less nerve-wracking now than before I determined the cause. I'm also a bit relieved that I never modified those posts. After my mother read those particular entries last fall, she told me it would have been better if I acknowledged that such "intentional communities" are good for some people and that I was only speaking for myself. I couldn't do it. It might have made the post more palatable to some people, but the particular power structures involved are wrong no matter who's concerned.

On another topic entirely, I'm very tired of how phone-focused many doctors are. I've not been able to email my medical doctors or my psychiatrist (I don't even have their email addresses) and it's made certain things very difficult. Speech may be supposed to be more authentic, but when I speak in medical or psychiatric contexts, I tend to end up reciting stored dialogue about how I'm fine when I'm not "fine" at all. There's a psych med I started a few weeks ago that I'd really like to get off of (Lamictal), but the only way I have of contacting my psychiatrist between appointments is by phone (she claims that she gets a better handle on how I'm "really" doing that way), and that's not workable for me at this point in time.

I had to climb out from under the virtual rock I've been hiding under for this!

Most of the World Autism Awareness Day articles I've read have felt like a slap in the face. I thought that I would take a break this morning by reading skeptic blogs instead of media hype, but I ended up reading about the details of Jenny McCarthy's latest nonsense and where infectious disease outbreaks would be most likely to occur in California. It wasn't exactly the most uplifting experience!

I burrowed under term paper duties for most of the rest of the day (after affixing an "I am not a puzzle" button to my backpack, which will remain there for the rest of the month). Then I searched out the official site. From there I found a link to Obama's statement on World Autism Awareness Day.

I'm stunned, and, for once, it's in a good way.

"We celebrate the contributions of individuals with autism, their families..." We're mentioned first. Not as an afterthought, not forgotten entirely. First, and not as burdens.

There's emphasis on barriers, stereotypes, and discrimination before treatment. That's as it should be. The first three are what hurts, rather than the mere fact of being.

"Self-advocates" in the first paragraph. Not just helpless children. Self-advocates. We have agency. I knew that, but it's been acknowledged publicly as part of an awareness event, by a major public figure (understating here, I know!).

There's mention of treatment and more person-first language than I'd like, but it's still something I never expected that I'd see. And the fact that I am seeing it has me far happier than it should.

Also.

I'm attending AutCom in Ann Arbor.

If anyone is actually interested in meeting me, the identification information in my post about Autreat is still a pretty good guide to recognizing me. Two things though: my hair is dramatically shorter than it was at Autreat and my stepmother Michelle will also be there. Much of the time, it's likely that I won't be accompanying anyone, as we're going to split up on Saturday to cover as many tracks as possible. (Though if there's a talk that I think is especially important, I might drag one of them to it.)

I'm sorry.

Anyone who's been witness to all of my online decisions these past couple of days has probably come to the conclusion that I'm panicky and quick to make hasty (and often bad) choices.

I won't say they're wrong, because they're probably not.

Anyway, what happened was that either my mother or my stepfather discovered this blog (and all my others) on Tuesday night, and I panicked. I didn't want them having access to my identity like that, so I re-named some accounts, closed others, opened others, and locked this blog. At the time I intended the lock to be permanent.

It's not now. After three days, I'm much calmer regarding the whole situation. I may be careful about what I write here in the future, but I certainly won't make my archives inaccessible. I don't think I have anything major to fear, at least from reactions to anything written on this particular blog.