Thursday, June 21, 2007

When words (on t-shirts) fail me

Dear conference attendee,
In case you didn't know, I'm autistic. You say you have a child who is autistic? Or you work with autistic people? Yes, I know, you call us "people with autism", that's what you've been taught is correct, and I can't blame you if you haven't heard that this is not the preference of most autistic adults. I have a copy of Jim Sinclair's Why I Dislike Person First Language for you. Here you go, no charge. I've printed out lots of copies, along with other information which I fully expect to see lining the trash bins later. A few of you will read it, and that's all I can reasonably hope for.
Oh, you didn't know I was autistic? I wondered, with all that experience between the 600 or so of you, if you might not recognize it. Maybe the way I walk is like your son or the way I stare at the pattern in the carpet is like one of your students. Just in case, though, I wore a shirt with a statement of my identity in very large letters. No, it wouldn't have been considered rude to comment of that. You see, I have some problems initiating conversations. I have a hard time standing up in a group to say, uninvited, that some of the things I'm hearing are missing the mark by a mile. I don't always come across as intelligent or sensitive when speaking, either. Maybe you've noticed this about someone you know, too? Maybe that person can write pretty well, and you don't even know it yet, or maybe she will develop the ability to communicate well in this way. That's something I would think might encourage you.
From what I've seen, you could use some encouraging. And so could I. I'm going through a bit of culture shock right now, though I've been to several of these conferences before. This year is different, mostly because I have spent the past several months communicating with autistic people via the internet, and also with a very small number of autism professionals (N=3) who have supported the idea that my views about my own cognitive and social differences do count for something and are worthy of respect and discussion.
Yesterday, I attended the panel of family members. Where, I wondered, were the autistic members of these families? Why were we not represented by even one voice on this panel of "experts"? Whose needs are being served by this? There were questions which seemed to baffle the parents. They knew a lot about negotiating the IEP process and finding respite workers, but I might have been able to clarify some things about bullying, depression, and friendships for people on the spectrum. Did you think of asking the autistic adult in the room? Yes, I could have spoken up, but I am not likely to do that without being asked. Remember what I said about the trouble initiating?
Can I tell you what this was like for me in a way that might make sense to you? It was much like you were discussing the rights of a racial minority in front of a member of that group, while pretending she wasn't sitting there. I was hearing words like "burden" and "imposition" used about my people by those who are closest to the individuals being discussed.
Maybe the problem is that I seem too "high functioning" to have anything relevant to say. I know some of you think that anyone who drives a car, lives somewhat independently, has a job, goes to college, etc. could not possibly understand what your child or student or client is going through. You may be right. I'm betting, though, that my brain is more like his brain than yours is. I might know something you don't about what it means when he says that line from a movie, always in a certain type of situation. I might have a clue why she seems so angry all of the time.
This is your invitation to ask. If you are reading this because I gave you my card with the name and address of this blog, thank you for visiting. Your comments and questions are welcome here. I will also be at the Provider's Expo later today. The directors of this conference have allowed me a table to recruit subjects for research and to distribute some literature on the rights and concerns of autistic adults. I hope you stop by and talk with me. It may be difficult, yes, I might seem uncomfortable and so might you. That's nothing to worry about, it just means we are trying something different. It might be a good place to start.


  1. This post rocks. You are so exceptionally polite, too.

  2. Bev, love your blog, as always. You are definitely helping me shape my perspective on my son.

    Don't be too concerned if NT parents don't always reach out for your help. I know have my own social anxiety issues. I often see myself reflected in my son; I don't think it's an accident (or a vaccine) that gave us the commonalities we have. I'm sure it would be nearly impossible for me to approach you at a crowded conference and talk to you IRL.

    Best to you!

  3. Good post... I hope some folks will take you up on your offer!

  4. As VAB says, this post rocks.

  5. mpj, I could've written the same. "painfully shy" is no joke.
    and Way to put yourself out there Bev!

  6. youre link to "Why I Dislike Person First Language " seem to no more work, maybe this one will work better:

    and here a traduction in french (from myself, i don't have the rights, so if there is a problem with that i could maybe remove it... but i hope there will not be a problem):

  7. Bev, much of what you describe of yourself led some family members to think that I was on drugs when I was young. To me, it was so irritating. I still get angry when I think about it to this day. And no, I was not on drugs. But I guess that us how in their minds they could fathom that I would act in such ways and do such things.

    Autism was taboo and considered a stain in the family make-up.

    It boils down to shame, lack of understanding and a lack of acceptance.

  8. Bev, regarding your references to an inability to initiate action: In my earlier years, I was often told by my significant other that I lacked spontenaity. I still battle that, but not quite as much.

  9. Bev, you have some awesome insights. I think that NTs will often seek NTs because they feel more comfortable around NTs and then it's like: Let the commiseration begin! And oh what a victim and a martyr they are by having to put up with autistics. Poor them. Woe is them. And misery likes company. And then more people join the club and it grows to be one big dysfunctional family.

    Of course, this probay leads to finding productive ways to deal with the pesky sides of autism, especially in a way that would be in the best interests of those of us who are autistic ourselves.

    Instead, it can turn into a misery remediation session for the caregivers wherein the caregivers and their quality of life comes first. It is no wonder many autistics are overly sedated by their "caregivers" as it becomes more a matter of convenience, rather than actually getting to the root of the matter and seeing how quality of life may be improved for the actual autistic.

    And finally, of course, NTs are the majority, and it becomes the tyranny of the masses. An exclusionary one at that.

  10. Envision a boss introducing an employee as "Everone, meet Jane, she's a pain in the ass. But I want you to accept her." Hookay...

  11. I've come to the conclusion that labels aren't particularly bad, but they're kinda like your privates. You don't just whip them out in standard conversation. IMHO one would really need to be intimate with someone, and they would have to be worthy of your intimacy, before you were to expose yourself that much.

    So, I don't go around telling strangers, work colleagues, acquaintances and heaven-forbid, not the boss. It would need to be a boss one could really really trust. One that would truly classify as a very close friend. That is more the exception than the norm.

    And. I would never equate autism as a hemorrhoid, as there's nothing good about a hemorrhoid! Autism has its goods and bads. I don't care much about the bads, the quarks I can put up with, and the goods I happen to love and would never want to do away with.

    But, even if my eyes were blue, I wouldn't want to be introduced as such. As in, meet so and so, he's got blue eyes. (What the heck?)

    Tho I get the impression that some introducers are trying to forewarn of danger. As in, meet my crazy sister, she is brandishing a butcher's knife! lol


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