#autcom

So… my name is [Mel] Baggs. I'm 28. I had always been recognized as different in some way (sometimes a "bad" way, sometimes a "good" way) but was not recognized as such until I was 14, when a doctor gave me the diagnosis of PDD-NOS (largely to try to prevent insurance from either deciding that providing care was futile, or deciding to institutionalize me indefinitely), and later as I hit adulthood he changed it to autism (since those were not risks for me anymore). To clarify certain experiences (which are rarely the ones people expect of an autistic person, which is why I'm mentioning them) — I was the sort of autistic person who spoke a few words and then lost them around 12-15 months. When they came back, they were echolalic. I had extreme difficulties in receptive language that were later masked by my ability to mimic sounds and match the patterns together to produce seemingly (more or less) appropriate responses. This led to a number of difficulties with expressing myself in language, because I did not learn language as a means of communicating my thoughts, but rather because I thought it was a strange thing that the world required of me. (I did not question why the world made no sense in that regard, it just didn't.) Even when my receptive language score was the lowest on a test I was given, this was simply ignored, because some of my other scores on other parts of the test were so high. The meaning to language slowly seeped in for me over time. In the meantime, I communicated in other ways that were almost entirely missed by others (they had to do with the arrangement of all kinds of things around me), and the words I had learned to say out of my mouth were assumed to be the way I communicated (sometimes they were, but that was nowhere near as often as people thought). When I first typed (which I learned the same way as all my typical classmates), I used it the same way as I used spoken language. But since I was aware of slightly more meaning when I typed, there was slightly more actual communication in my writing.

Then, when I hit puberty, I began to have more trouble with speech and voluntary (as opposed to either triggered or involuntary) motor skills. I had always had trouble in these areas, but I now had less energy to compensate and more actual difficulty also. I began to have longer and more frequent periods when I could not speak at all, and longer and more frequent periods of moving slowly or freezing in place. I had also just in the past year begun to really consistently start to understand language when people communicated with me (in fact, my 11th year was possibly the year I was best at passing for typical), and that began to fall away again. So did any pretense of understanding the academics I was being given. This was sudden at first but quite gradual since then. Unfortunately it was at first taken for boredom at school, so the more trouble I had with everything, the more difficult material I was given. Even after I'd been sent to a neurologist and neuropsychologist (who noticed many elements to autism but didn't have time to diagnose it yet) when I was 13, I was still sent to college at age 14 in the hopes of getting me less "bored". By the end of the year, I had crashed and burned badly and ended up in a series of mental institution stays over the next several years (1.5 years total in traditional institutions, another 2ish in non-traditional institutions (similar power structure but different outward appearance), over the course of about 4 years, and interspersed with each other rather than all at once).

So when I was 15, I was finally recognized as autistic, and my psychiatrist had figured out already that I communicated better with writing than in speech, and even that much of the time when I could not speak, I could still write. He had also worked out how severe my receptive language problems were, but his methods of trying to get me to understand things better (which included endless repetitions of the story of Helen Keller at the water pump and such, hoping the meaning would sink in) were not very effective. I also received a number of other psychiatric labels and learned quickly the penalties for not "living down" to the expectations of them ("You want crazy? I'll give you crazy…"). By the time I turned 18, much of my day was spent unable to speak, and I had to ration speech very carefully in order not to run out of it entirely. When I was 19, I first saw someone using an alternative communication device, and my parents bought me an AlphaSmart. The combination of spending a lot of time typing instead of speaking (which also improved my ability to understand people, use body language, and be spontaneous in the expression of all sorts of things), and being around other people whose experience of the world was similar to mine (and therefore they used words that pertained to my perceptions of the world, for the first time in my life!), meant that I finally began to make a consistent connection between words and communication. But when I tried to turn that connection towards speech, I discovered that even at my best in speech, they just wouldn't connect; communication and speech had always been too far apart, and the increase in motor difficulties meant that I just couldn't bridge that gap. Every time I tried I would end up exhausted, in pain, and with a very muzzy head. I still persisted, but speech was dwindling anyway.

I had begun to use a wheelchair part-time to help me get around during times when I could not walk, and to help me conserve energy a lot of the rest of the time. I was now also dealing with a situation where all I could do when I spoke was use words other than I meant, and I couldn't even speak that often. So eventually I ended up using my communication device full-time. A few years later I ended up using a wheelchair nearly full-time too, and by now I am about to get my first power wheelchair. Because typing was a motor skill that had almost always been of the "triggered" sort, and therefore one I excelled at, I can still type on a keyboard, in fact when they measured my physical stress levels at MIT, the only movement (besides rocking and other automatic movements) that did not cause me stress was typing! So I mostly do that totally independently. But when I am moving more slowly and freezing a lot, or having problems with muscles clenching or loosening, I sometimes need someone to support my arm when I type. I also may need someone to remind me where my arm is when I would otherwise be frozen at that time. This evolved out of necessity and usually happened out of someone's automatic and intuitive response to my situation, rather than because anyone has been formally trained in the methods usually called FC. (Because of that I'm often reluctant to use the term.) But for much longer and in many more areas, I have been using the same kind of assistance when I move in other ways: Even when I can't respond (or respond in a very bad way) to a verbal prompt to brush my teeth, I can respond to someone handing me the toothbrush. And my cat has long known how to get me out of a freeze by running all over my body and nudging the parts that I need to move (she's qualified as a service animal because of this, and she and I have a far more deep and intense relationship than I have with any human — we know each other's patterns in so many ways I can't even name them).

I gave all that history because people often ask me questions like "Who facilitated you before you learned to type?" "When did you learn to type?" and other things that have no simple answer because, if I just give a time frame, they think they know everything there is to know about my speech and language development, even though it's obviously far more complicated than that, given that I actually learned the mechanics of speech long before I even knew what a word was, let alone what it meant.

While my history is not the one people expect of a person on the spectrum, I have encountered people who have had similar experiences. Usually I identify most with people who spent a good deal of their childhood either unable to understand language or able to understand only a little, totally regardless of whether they had speech or not during that time (since speech with little to no receptive language is a highly superficial thing as viewed from the inside, despite its great importance to how people on the outside treat you — and I do acknowledge that having speech, even meaningless speech, gets you treated better overall). Because of that, I identify to greater and lesser extents with Anne Corwin, Donna Williams, Jim Sinclair, and Sue Rubin's descriptions of their early experiences with (partial or total lack of) language comprehension. Of those four people, Anne Corwin, is the closest in terms of other aspects of autism. She did a three-part interview (http://www.existenceiswonderful.com/2008/07/interview-on-growing-up-autism-and.html; http://www.existenceiswonderful.com/2008/07/interview-on-growing-up-autism-and_5644.html; http://www.existenceiswonderful.com/2008/07/interview-on-growing-up-autism-and_28.html) *. In the second page, question number 6 asks about her language experiences, which are very similar to mine. But even other aspects of her are similar enough that when her boyfriend met me he swore we were separated at birth. This despite the fact that many people would put us into very different autism categories than each other based on superficial things, including the fact that I get my daily living skills problems taken care of through government-funded services while she gets her equally severe problems taken care of through her boyfriend! We're still not sure how many of the differences that do exist between us are innate or the result of different environments growing up. I also relate well to people who have a very unusual way of understanding the world, again whether they have the superficial capability of looking typical or not. (I know those superficial capabilities can mean the world of difference between being written off and being considered capable, but from an internal perspective of what our real experiences are like, they're close to meaningless, just a bunch of things moving around so high in the sky as to be lost to view.)

On the other hand, I have a lot of trouble relating to people who may superficially resemble me but whose internal experiences are utterly different, like people who always had an understanding of the world, and/or of words, that closely matched that of non-autistic people, but were unable to communicate about it because of speech difficulties. Even if they resemble my superficial appearance as an adult (which is, in terms most people would use, a person who looks "low functioning" and "retarded" to most people, who either has a lot of unusual movements or doesn't move enough, who has a lot of trouble with daily living skills, and who almost never uses meaningful speech), they still might have nothing in common with my experience of the world. So, I'm all about our internal realities, not our external appearances. Even though I know our appearances (or what others decide our appearances mean) play a huge role in how we are treated. I just don't think someone's resemblance to someone else's appearance means they resemble each other inside at all, so I've never put a lot of stock in categories that people use to define us entirely by a small number of externally visible traits.

So now that that's all out of the way… As far as what I do and all that… I have certain principles about ethics that are very important to me, rooted in my deepest experiences of how the world fits together. Then I apply those ethics to various situations. And that's how I approach things like disability advocacy, of which I consider autism-related advocacy only one piece. Despite my frequent loathing of words, I write a whole lot. Less lately because of health problems and offline obligations, but a lot of the work I do is still through writing. I don't believe that there's such a thing as what Peter Singer would call a "non-person" (he believes that you need certain cognitive skills — having a sense of yourself through time, being able to think in certain ways, etc. — to be a person, and given that I remember myself before I had those skills, and that I know I was a person then, I totally disagree). And a lot of my advocacy is built around the fact that we are all people and we all have certain basic rights.

Nobody is unimportant or expendable, and there ought to be no division between those a society goes out of its way to take care of (those currently considered non-disabled) and those it doesn't or those whose needs get considered "special" (those currently considered disabled) because everyone ought to have their society go out of its way to make sure they can continue to live the best life they can. That's how I approach life and so that's also how I approach disability advocacy. I hope that one day the services I receive (which are considered special and often expendable when budget cuts come around) will be seen no differently than most people's ability to get the services they need without it being considered a big deal with degrading tests, etc. etc. etc. There's a whole lot more to say, but my brain is running out of words and there was a request for us to get our responses in this weekend, so I need to save the rest of my words for my response to the question."

-Mel Baggs, What We Have to Tell You: A Roundtable with Self-Advocates from AutCom

“Barb Doesn’t Talk” ~ Emma

I have a friend who, when they met over a year ago, Emma observed, “Barb doesn’t talk“.  “Doesn’t talk” means she doesn’t talk with her mouth, but boy, can she write.  Her name is Barb Rentenbach and she and her therapist, Lois Prislovsky wrote a book, I Might Be You.  I’ve written about Barb and Lois before, ‘here‘, ‘here‘, ‘here‘ and ‘here‘.  If you haven’t read their book, you must.  (Continue…

I went to Autcom, a conference where autistic voices are valued and heard. There were autistic presenters who type, presenters who speak; some were college students, some were parents; some can, and do work, others need a support person.

A few presenters were neurotypical. It was a diverse group and the presentations were great.

The environment was autistic friendly. I did not see flashes from cameras, nobody complained when I, and others, got up during a keynote and paced a little; we flapped our hands instead of clapping and there was a crash room.

It was a safe space for autistics and it was welcoming. But at the very end, something happened and it was not nice.

Ableism is ugly. It is imposing and arrogant. It makes me feel powerless. It saddens me more than it angers me.

I feel especially sad about what happened at Autcom because it was about an autistic adult being ableist towards an autistic child. And this is not ok. What happened is that, during a short movie the kid made some noises. Maybe he got upset because of a technical problem that made the screen go dark; maybe he was tired; maybe that’s his way of communicating. The autistic adult next to the kid did not like the noise and said the boy had to leave because he could not behave. He said that it was a “formal” gathering.

There was a little discussion between the man and the boy’s mom until, I think, someone suggested that the autistic adult changed seats.

I was sad because, for a moment, that very nice conference was not welcoming, nor safe, for a young autistic boy who probably heard, many times during the weekend, about advocacy and acceptance.

I feel bad because I did not say anything, I did not advocate and I did not show that child that it was ok for him to be himself, in that room, at that moment. I feel bad because I did not tell him that it is ok to be himself.

At that moment, bad memories came back to me; I was, once again, a student who was forced to go to events I did not like and told to “behave”. I wouldn’t “behave” because I couldn’t control my body, because I would get anxious and overwhelmed. Then I was called names. Those memories made me unable to react.

Autcom was welcoming to me; it was safe. I saw and experienced neurotypical people striving to be respectful and accommodating to the needs of many autistics. Then I saw ableism coming from an unexpected place.

We want and deserve to be understood and respected for who we are. We hope that young autistics today will be proud of themselves and without shame. The message that boy received at that moment was the opposite of acceptance. It was ableist and it came from someone who is part of our own community.

I hope the young boy understands that the majority of us still accept him as he is. And I hope the autistic adult realizes that we are all in this together, even if some people need a different kind of understanding. We can’t ask for accommodations and for a safe environment for ourselves if we are not willing to offer the same safe space and accommodate the young autistics.

Little friend at Autcom: it is ok to be yourself. Most of us do respect who you are.