Autism, Speech, and Assistive Technology

I walked into the autism center at my university, hoping that they would be able to help me with many of the pressing problems in my life at the time -- many of which ultimately kept me from being able to attend university as it's currently set up, and still keep me from living without assistance. I carried a keyboard, which I had obtained recently for the purpose of communication, because I often have trouble with speech.

I can't remember if that was the day I spoke or the day I used the keyboard, but I do remember one statement made by the local Autism Expert ^TM. "Maybe we can help you reduce anxiety so you won't have to rely on your keyboard." That's when any remaining ideas in my mind that this person was a real expert on autism fell apart.

I like my keyboard. I've spent my whole life struggling with speech, and I like to have an alternative means of communication. I often feel more comfortable when I use my keyboard, because it does not involve the painful and complicated process of speech in addition to language. My friends even tell me I'm more spontaneous and expressive when I don't speak. And here was someone, supposed to be an expert in the field of autism (I've since learned what autism "expert" means) telling me that if I reduced "anxiety", I wouldn't have to "rely" on this wonderful device so much.

(As a note: my speech problems have little to do with anxiety. I have problems with speech and with expressive language in general. Some are intermittent, while others are constant. This is different from anxiety, although stress and anxiety certainly don't help any -- particularly, I might add, stress that comes from dealing with autism "experts" who want to take away my keyboard.)

I'm reminded here of people who use wheelchairs to get around. Many get upset if you refer to them as "confined" to a wheelchair. To those people, a wheelchair is freedom. And to me, my keyboard means freedom. I don't "rely" on it -- I use it so I don't have to rely on my limited speaking abilities.

I'm trying to picture someone who had a condition that made it painful to walk all their life, but who managed to walk places for limited distances but never enjoy it, finally being offered a wheelchair to get around as an adult. They could now go out and it would no longer be a painful chore, but something they could maybe even begin to enjoy. In their place, I would be glad to have that new freedom. That's how I feel being offered assistive communications technology (i.e. my keyboard). I can enjoy things I could never fully enjoy before, because of the emphasis on speech. (I even more enjoy, a lot of the time, being in a language-free environment, but so far I have no way of applying that to everyday communication situations.) The point is, I am now more free than I was before -- I am no longer dependent or reliant on a voice that works sporadically and often painfully. And I enjoy that freedom.

And here, again, was someone trying to take this freedom away from me, under the assumption that if I could speak sometimes that I must always be able to speak, and that the only thing that could prevent me from speaking would be anxiety. Not only that, but it assumed that speech must be my goal, that I could not be happy without speaking, that I was comfortable when I did speak. Since I have never been particularly happy speaking, I find it difficult to imagine that concept. But there it is.

Why is speech supposed to be the ultimate goal of so many autism therapies? Because it is ingrained into so many neurotypicals that speech and language are necessary to be whole, alive, and functioning as a human being. I have attended so many psychology and linguistics classes which put forth speech and language as the only way to be a truly thinking being. I must not be a truly thinking being then, according to them, because I don't use language in my head.

(When I point this out, of course, I am told that since I am using language to communicate I am talking nonsense, or else that I am some kind of "exception" who doesn't deserve mention in the class -- or in the definition of "thinking being" for that matter.)

So language is extremely valuable to most neurotypicals, and speech in particular. Other modes of communication, when used by autistic people, are still not usually "good enough" for such neurotypicals. An autistic woman making her needs known through ways other than speech, rather than being congratulated on her ingenuity, is worried about by her teachers -- because she may not learn any new words if she can already communicate. Autistics successfully using pictures to communicate are also considered "not good enough", and speech and language are emphasized. Autistics using written, typed, or signed language are urged to speak, because speaking is somehow considered "better" (I note this occurs a lot with deaf people too). Autistics who can speak sometimes but not others are urged to speak all the time, and if they have difficulty when they do speak, that is ignored.

In some cases, an autistic person may want to speak. If that's so, then they should be given every opportunity to learn. However, a lot of us have other ways of communicating. With a keyboard to type on, I feel a lot more free than I do talking or being expected to talk when I can't communicate adequately that way. There are other times when I can't use language at all, and I am having a really hard time finding assistive technology to deal with that. But the fact that I am having a hard time finding that technology doesn't mean I shouldn't.

I have a right to communicate in whatever means is possible for me to communicate (within the bounds of not hitting or throwing things at people, although I've often had urges to do that to autism "experts".) And not only do I have that right, but I have the right to choose what means of communication is appropriate for me. If I am unable to speak, I should certainly be given other options.

But also (and this is what a lot of people, even those who get that first part, miss) if I am able to speak but it is painful, difficult, and draining, I should also be given and allowed those other options. People have a right not to just be alive, but be able, to paraphrase a famous document, to pursue their own happiness. That is, people have a right to not only have enough assistance to stay alive and function minimally in the world, but to enjoy being alive as well.

I have rarely, if ever, been unhappy directly because of trouble speaking. I have quite often been unhappy because of not having those other options for communication (not being able to communicate can definitely be frustrating!), and because of all the assumptions that caused that not to happen for so long. And I am still unhappy to see that the first order of business for "helping" an autistic is so often to attempt to take those options away.

A M Baggs, 2000

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