Autism National Committee conference


I’m going to the conference of the Autism National Committee next week. It’s on Friday the 8th and Saturday the 9th, in New Hampshire. I’m going with Kathleen Seidel, who’s being very nice by driving me. :-)
Anyway, if anyone’s going and wants to meet me there, let me know.

If you want to recognize me (not in any particular order):

  • Likely to be wearing green-tinted glasses with light purple plastic frames. Although I might be wearing over the top of them (rendering them invisible) a pair of black plastic sunglasses. At any rate I’m going to be wearing glasses of some kind the whole time.
  • Fairly stereotypically autistic-looking (not that this will distinguish me from other auties, but it’s unlikely you’ll mistake me for NT).
  • May or may not be in a wheelchair at any given time. If I am, it’s got a headrest on it.
  • Female (you can tell if nothing else by the large breasts).
  • Bald or nearly so.
  • Likely to be wearing the “Lights On Shirt” from this page. That’s the one with this picture in the middle, with the full shirt pictured here. It’s very purple. The artist, by the way, is autistic, and the shirt is designed (by someone else) largely for auties.
  • I’ve got one of those unibrows that is two thicker eyebrows that dip down in the middle to a slightly less thick fuzzy patch. Think Frida Kahlo if this idea confuses you.  (Larry Arnold claims this is how he recognizes me in pictures.)
  • And some scattered chin hair and such that’s unusual for women not to shave off.
  • My mouth is kind of trapezoid-shaped when open, and it’s frequently open as a default position. (One friend says she uses that, my nose, and my eyebrows as a pattern to recognize me by. I honestly don’t know whether that mouth shape alone would distinguish me from a lot of auties.)
  • I’m a bit short (5’2″, look even shorter because I bend over when I walk) and a bit fat. And white (some white people think I look Hispanic, most Hispanic people are sure I look white).
  • If standing, I may be attached by a long, flexible object of some kind to someone else as a navigational aid. (Again, not sure this will distinguish me in a crowd of auties or not.)
  • Plenty of pictures of me on Getting the Truth Out.
  • If you see someone holding and/or playing with blue rhombus pattern-blocks, it’s almost undoubtedly me, but I don’t have them out all the time (I do carry a few with me).
  • Probably wearing a fanny-pack.
  • Definitely communicating by keyboard, although may make other noises, some of which may sound like words and some of which may not. (Not is more likely than words, at least around people, but you never know.)
  • May be wearing a blue soft helmet with a rainbow-colored clasp. I hope not. I’ve already done enough brain damage recently. (Seriously, ever since a meeting a few months back with a particularly jerky guy — which meant lots of head-banging — I have felt seasick whenever I walk upright. Avoiding head-banging has been a very high priority lately.)
  • May be wearing a hat with a brim, or a baseball cap. (I often do in unfamiliar places.)
  • May be frozen in place at various times. If I am, I may still be able to hear you, just not respond too well.

So if you recognize me somehow in all this, don’t hesitate to ask whether I’m Amanda or someone else. ;-) If I don’t respond, hopefully someone near me will tell you. I hope that’s enough details that anyone who wants to (and who can see well enough to use them) can use at least a few of them to try to pick me out of a crowd of auties.

One thing I am looking forward to a good deal about this conference, despite AutCom’s drawbacks and the apparent overloadingness of the surroundings, is that AutCom is according to several people I know a place where a wide variety of autistic people are represented. As in, I’m not going to be the token non-speaking autie (or one of two or three at most), I’m not likely to be the only “disruptive” autie, I’m unlikely to be either the most obviously autistic or the least obviously, I’m unlikely to stand out much at all in fact. And it’s been a long time since I’ve not stood out even among other auties — I’m looking forward to it.

About Mel Baggs

Hufflepuff. Came from the redwoods, which tell me who I am and where I belong in the world. I relate to objects as if they are alive, but as things with identities and properties all of their own, not as something human-like. Culturally I'm from a California Okie background. Crochet or otherwise create constantly, write poetry and paint when I can. Proud member of the developmental disability self-advocacy movement. I care a lot more about being a human being than I care about what categories I fit into.

32 responses »

  1. Maybe and maybe not. (Depends on something that’s happening with another speaker. I wasn’t planning on doing so, but have been asked by a speaker whether I want to, but it’s complicated so I might or might not. I’d like to, but doing so might cause other problems. So waiting to hear back from people.)

  2. I would like to go to one of those conferences one day. Hope you have a nice time despite inconveniences of probable overload. Eagerly expecting reports and social commentaries.

  3. I hope someone will take pictures. It’s wonderful that Kathleen is taking you. I hope John goes and actually learns something.

  4. Amanda, I’ve tagged you for one of those meme things about books. Go to my website and have a look – it’s just a series of questions about books you like basically.

  5. I’m curious about the green tinted glasses. Is that your favorite color, or does it help you see better. I know that certain tint sunglesses really help me see better, but I have never seen or tried green.

  6. They’re prescription, but the tint also helps me see better in a way that clear glasses don’t. I got them from Zenni Optical which sells cheap (generally between $9 and $20) prescription glasses that they can tint any number of colors.

    I was going to keep buying a new pair each month to see which tint worked, but I decided to start as close as I could to my first pair of Irlen lenses from years ago (which are immeasurably more expensive than these, and I can’t afford them). So I got a shade of green as close as I could to my green Irlens (IIRC neither the darkest nor the lightest shade, somewhere in between), and have been too happy with them to get around to ordering more.

  7. Funny, I was just thinking this morning about how cool it would be to meet you in person. But it won’t be in New Hampshire, my dear! Finances are keeping me around the greater Chicago area for the time being.

    I was terribly proud to find the combination of blue and brown lens tint that best worked for reducing glare in darkness and in light, hiding my eyes, and keeping my mood generally pleasant (though the pair cost me bloody near four hundred bucks), but I chose frames that are just a bit too conspicuously fabulous, so I can’t wear them often without somebody giving me crap. ; )

    To bring the “disruptive autie” discussion here for a minute, if I may (ya think Joel will mind?): Yeah, there’s a fine line between being disruptive and being disrupted . . . if a behavior on one person’s part that seems subtle – or even appropriate or acceptable – to the majority sends another person into overload, and the result (whether it’s loud or violent or not) is seen by the majority as disruptive, then it unfortunately becomes a case of Majority Rules. There’s also the question of whether the disruptive behavior is that person’s “fault” – and then suddenly there’s a question of ethics, and of what kinds of behaviors can and can’t be helped, and whether the behavior is a result of someone being too sensitive to other’s actions or *not sensitive enough* to others’ feelings.

    And the level of irritation that an individual is provoked to has just as much to do with his/her own perceptions, of course, as it does with the offending individual’s behavior, and it really, upon first reaction, doesn’t necessarily coincide with perceived morality. Example, ‘cause I know that last clause makes no sense to readers without it: On the bus recently an innocent soup-slurper nearly drove me to tears, but a woman chattering endlessly on her phone while totally ignoring her crying child merely struck me as offensive after I considered the “wrongness” of her behavior. And still more exasperating was my friend’s response to me telling him about the chattering woman: “Wow, usually those buses are really nice.” I couldn’t get him to make the distinction between the bus itself – which *was* quite nice – and the people who happen to be on a particular bus at a particular point in time, and who finds what offensive and harmonizes with what kinds of people etc. etc. . . .

    I’m fascinated and mortified at the number of variables, internal and external, that affect whether one person’s set of behaviors can jive with another’s; and for that matter, Amanda, while I was thinking how cool it would be to meet you I was also thinking that my movements and speech and general mannerisms, often perceived as particularly abrasive and overbearing, might be sufficient to induce headbanging.

    I’m definitely excited to hear about your trip.

    Re: convention for folks with Tourette’s, the nuances as regards “disruptive” are so complex as to overwhelm me into inarticulation (yeah, that’s not even a word, according to the dictionary) for the moment, and now trying to assemble the concept into words is actually making me itch, but I think the variable in this – “even the ones suddenly yelling extreme obscenities weren’t shunned” – is the word “extreme”. As in, who decides what’s extreme? (Shiny NTs?)

    Pardon my muddledness. Yeah, that’s evidently not a word either.

  8. So cool about the Zenni Optical link. I looked at it and didn’t see anything about the tints though, how do you find out what choices they have. I have always wanted to try Irlen (but again for me too it was too expensive.) So this would be great.

  9. Also (I wrote this as a separate comment so you can just delete it when you’ve read it, it doesn’t have to show up on the web page):
    What email are you using? I thought it was maybe the wesite name with @ intead of . or maybe the one you used on the lists (autuniv-l and Kalen’s executive function one.) But when I wrote to you on those, it never got sent back but I’m assumeng you never got it either? If you get a chance maybe you could let me know the email (you can email it to me at my email address if you don’t want to post it on this blog – I read gthis blog alot because it seems like alot of things you say are thinks that really are thought provoking, and also a few put into words things about myself I had never known how to say or heard anyone talk about, I think it is just so amazing to hear that I’m not the only one whose skills don’t go together logically, even though it sounds like we don’t have a totally similar profile of strengths and weaknesses. (For example you seem much better at writing and expressing a point about a important opinion, I struggle with that. But I can talk and somewhat appear NT at times, ahtough it is hard and exhausting and I can’t really express everything in real time even to close friends, I am so thankful for email because it gives me time to think although I don’t write that clear, kind of rambling.) I had always felt like I was worthless and the only person who wasn’t smart enough before reading this (for having trouble with self-care yet not being mentally retarded.) So thanks for writing this blog, it really helped me to read your ideas and even when something isn’t exactly how I think or feel, it is INTERESTING and also gives me words to describe things, that i never knew of before. (I usually don’t know how to talk about things unless I’ve heard others talk abaout the idea, and can reword it.)

  10. To Amanda :

    I had always felt like I was worthless and the only person who wasn’t smart enough before reading this (for having trouble with self-care yet not being mentally retarded.)

    Clarification on that sentence: I read it and realized that could come across it wrong. I was just saying I felt that way about myself, NOT that i would ever feel that way about someone else. fWhat i was trying to say is it made me feel like I was a “person” after reading someone else having trouble with executive/self care too because then sinnce I wans’t the ONLY one, i didn’t feel like I was some weird non-person like i had been made to feel for not being good at these things. Sorry for sayig it confusing the first time! I don’t mean ANYTHING offensive, so if it comes across that way, sorry. I’m more used to jsut copying NT words and stuff not talking about truly important stuff alhtough i would like to do true commucating (ie what I think) not just wahat i’m supposed to say.

  11. FYI, I’ve been extremely interested (ok perseverant) in PECS lately. When I was a child, I saw this game:… and wanted to play it very badly. It was on an Amiga IIRC or Commodore 64 in the 80s (when our family was relatively still not well off enough for me to have anything like this). It looked like a communication system I would like to use. Ironically, I would find others who played it IRL…even after I had my eurekas over discovering I was autistic.

  12. Oh!!! I want my husband to be able to try those glasses! I have heard about colored lenses for concentration and other things (what do they do for you? i mean how exactly do they help you see better?) in Britain and of course our American optometrist here says it’s bunk so he won’t deal with it. So now I know where to look! This is VERY COOL.

  13. When you order, there’s a question about tint. If you click on the question mark or some other “help” type button next to tint, it gives you the names and colors of all the tints. (You can get to this without ordering, just click on a pair of glasses and look at lens tints. This is not “glasses color” which is usually one or two colors, it’s something like 32 different tints.)

  14. n., I think it’s just as much a personal preference thing as it is a “tested” thing. Reading a couple paragraphs or otherwise studying what one often visually studies through clear colored plastic sheets (like the kind for report covers) can give a general idea of what works best, though of course tints vary and of course are not the same as report covers — and you won’t know for sure until you’ve got the glasses in-hand; that’s one of the drawbacks to ordering from afar — but hey, for the price it’s worth a bit of chance.

    Amanda, thanks! Never in my life have I found prescription glasses this cheap. (I splurged a little on the tint and the anti-reflective coating, thirty bucks!) And evidently my pupils are unusually far apart, like I’m some kind of herbivore . . .

  15. Actually, that’s one thing that doesn’t really work. Glasses people prefer are generally for whatever reason not whatsoever the same tint they use for reading. (I use purple for reading, green for glasses, for instance.)

    One good way to experiment for low cost though is to go to a dollar store (if they have things like that where you live), and buy all different tints of sunglasses, then when you get a tint that’s sort of close to what you like, start ordering the glasses that are closest to that and see which work best. (This can take a long time, but in all the cost is still going to be less than an Irlen lens evaluation.)

    If you have the money to fork out, you can go to the Irlen institute or any “Irlen screeners” and get tested, they have a huge long systematic way of doing it.  But the trouble is, you get a lot of screeners who won’t let you do unconventional things, and it costs a lot, and a lot of them focus entirely on the printed word rather than letting you look around at objects and in different lighting to see what is less overloading.  Try to find a screener (like the one in Modesto, California, who I’d highly recommend) who is willing to be unconventional and who wears tinted glasses themselves.

    But you can do the whole thing for less money, it’s just that it’s way more work and time-intensive.

  16. Okay, fine, listen to Amanda; she’s probably right. ; ) I use glasses for everything *but* reading, so I should shut up. (I suppose you could actually try sunglasses out *in* the store too — though I’m quite sure I’d manage to get myself kicked out very quickly for that.)

  17. ok, after writing i just remembered that i saw some colored sunglasses in the GOODWILL this weekend!! Going back there, soon.

    of course it turns out my husband is skeptical about the different colored lenses (although he got sunglasses to wear inside?! but i guess light sensitivity is a different issue)… well, we’ll see if any experiment turns up a good result. Anyway thanks so much for the glasses link… will try for him and plus whenever I ever get around to getting another eye exam, i think i will order my next ones there.

  18. Are the prices for these glasses for “real” (lol). I am very nearsighted and have not been able to afford a pair of glasses in years because the lenses cost so much even though mine are all scratched. I don’t think I have a current prescription though – but it would be nice to order them over the internet. I dislike going to the optometrist because they always want to touch by your eyes or else I think about all the other people trying on the frames.

  19. (i mean prescription sunglasses to use not only in the sun but indoors too.)

    the reason i don’t understand this first-hand is i seem to always want extra light… i can’t even put down the windshield visors when i’m driving in the sun, becos they feel like giant eyelids closing off half my vision and making me feel sleepy. i think this is not normal.

  20. oh sorry but one other thing. i was thinking that the thing of auties who give each other sensory overload is one way it would be useful to have the “types” of autistics, but only if you had to make arrangements about living together, in which case it might not be types but just some lists for each person: “what things you can’t stand” and “what things you need to do” and if the persons weren’t compatible in these lists well they would maybe need more rooms…

  21. Hi, Amanda. We met at the Autism National Committee Conference. It was an honor, as I consider your “Getting the Truth Out” site to be very important in the effort to educate people correctly about autism.

    I teach an online course for teachers of students with autism and would be honored if you would be a Chat Guest. That would require you to log on to the course at an agreed upon time–if possible between now and December 9–and respond to typed questions by students for one hour. Unfortunately, I cannot pay you, but you will have the opportunity to educate teachers. The current unit is “Critical Issues.” Here are the four we focus on:

    • When you don’t know something important for certain, what assumption will you make as you decide how to proceed?

    • The terms “high functioning” and “low functioning” are widely used by professionals in the field of autism. What do they mean? Should we be using them?

    • How is autism presented to the public? What kinds of public attitudes about people with autism does this type of presentation engender?

    • Autistic neurology is different from typical neurology. People with autism cannot, therefore, understand exactly how we neurotypicals perceive the world. Can we understand exactly how people with autism perceive the world? Because they cannot understand how we perceive the world, does that mean they also do not understand how they themselves process their emotions and their thoughts?

    Students’ questions are likely to be focused on these issues, though not necessarily. I would ask them to view your website prior to the Guest Chat. I would also ask them to read anything you would want to send in advance.

    I look forward to hearing from you.

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