Daily Archives: March 31, 2007

The real barrier to communication.


One of my online friends has obtained text-to-speech software for her laptop and is going to try to use it in everyday conversation.

I am excited for her. I remember when I first found out about communication devices. Through the years, even when it was noted that at the times when I could not speak I could still often write (if anyone bothered to get me the materials to do so), nobody had suggested a communication device. And even when I had noticed that my communication was better in typing even when I could speak (or make speech sounds, which is not the same thing as speaking for communication, although at the time my typing wasn’t always communicative either), I didn’t know that there was any way to act on this knowledge to become a better communicator. It wasn’t until I saw Cal Montgomery switching back and forth between speech and typing at a conference that I got the idea, although it was hard to work up the courage to actually use that idea.

My parents bought me an AlphaSmart at that point in time — the AlphaSmart doesn’t have speech output (at least not without an add-on) but it is portable and cheaper than most text-to-speech devices. My friend (who is visiting right now) bought me a small Remington portable typewriter. I carried the AlphaSmart with me everywhere and used it some of the time. The typewriter, while portable, couldn’t be taken everywhere, but I was astounded to find that often when my mouth was babbling off on some irrelevant tangent that had nothing to do with what I was thinking, I could run to the typewriter and my hands would bang out clearly and coherently what I was really thinking about, even instructions to myself on how to do things. Knowledge I didn’t know I had, because I was so used to “thinking” meaning “scrounging around for phrases to use in speech” (and I then used typing merely to duplicate that feat, which was a waste of typing) that I didn’t realize I had a much more direct line to my thoughts in typing even when speech was technically available.

Once I became accustomed to typing as a means of communicating my everyday thoughts, the speech I had (which had been diminishing over the years in both quality and quantity) became obvious as both redundant and counterproductive. It caused far more pain, far more difficulty functioning, far more of that buzzing in my head that at the time was so common that I thought it was normal (and that I now instead of getting it every day only get after extremely stressful events like conferences or being filmed), and far less communication (when there was communication at all). The last straw for me was a telephone call in which I was attempting to use speech but could only reproduce the word “potato” over and over because the person on the other end of the line had been talking about eating a potato for dinner. And even the “potato” thing was taking maximum effort, the kind of effort where the entire world goes black and silent because you’re concentrating so hard only on getting a word out. Why make the entire world disappear to say “potato” when I didn’t mean “potato”, when it was possible to type complete sentences that more or less reflected my thoughts?

When I recently appeared on CNN, someone who’d met me shortly before I first got a communication device of any kind, told a friend that she hadn’t known me to be as articulate as I was on TV. I’m not too surprised. The level of precision and accuracy in my communication (as in, actually hitting the target I intend to hit, as well as actually reflecting what I’m thinking instead of something else entirely) as well as my clarity of thought in general (even if I don’t perceive myself thinking, it’s obviously clearer now than the muddle I was in before) have increased drastically since using communication devices, and even more drastically since using them full-time. Optimizing communication has meant that I have far more energy to put into everything from basic perception to complex writing.

My online friend can speak most (but not all) of the time, but she finds that typing is more accurate to what she is thinking and takes far less exertion, exertion that she could be using on other things. This is very common among auties. In fact, in 2000, there was a workshop at Autreat called “On Paper I’m Free,” the title taken from a poem by Donna Williams. It was an exploration of the use of writing by autistic people, many of whom could speak with superficial fluency, some of them all the time, but still they had better communication in writing. I submitted my old paper on part-time use of a communication device to that, which described among other things how much more spontaneous and fun my friends found me when I could use a much richer communication system than the speech I had been attempting to use. I was not able to attend, but they apparently read my paper and lots of auties had similar experiences.

The trouble is she’s somewhat afraid to use a device for communication even with the many positive aspects of it. She’s afraid that people will assign motivations that are simply not there: wanting attention, wanting to seem special, and so forth. She of course views it as I do — no different from riding a bicycle instead of walking when the bicycle would be more efficient. Professionals, though, could easily see what she is doing as a step backwards instead of a step forwards. To many people, normalcy is forwards and anything not considered normal is backwards, and the only reason a person capable of appearing normal would do something “abnormal” is for various bizarre motivations that always (for some reason) have to do with how others will see them. But as far as my friend and I, are concerned, the goal of communication is not to appear to be doing something in the normal way, it’s to communicate your thoughts in the most efficient and accurate manner possible. Which is undoubtedly a step forward no matter what that form of communication takes.

Other people might view my friend as doing this to make them see her in a different way. But the only way my friend is taking into account how others will see her is in her fear of taking this step towards communication because she’s afraid others will see her in a very negative light because of it (and will invariably interpret her actions as being about making a particular impression on them, when really it’s about optimizing her communication). I wonder how many other auties could benefit from alternative communication but will not use it because they’re afraid that they already look too normal to “get away with it,” afraid that others will regard them as seeking attention or special treatment, because they’re afraid of how their employers will react, because they or those around them have views that it’s only when communication completely and totally breaks down entirely that a person should have a way to communicate better than they already do.

I’ve watched a few auties now learn of and use alternative communication, and I have never seen it do anything less than enrich their lives greatly, whether they could speak (by which I mean “put their own thoughts into words”, not just “generate plausible sentences”) all the time, part of the time, or none of the time. The only barrier to them doing this successfully has been the attitudes of other people towards their use of the communication devices. Attitudes of disapproval, condescension, and accusations of manipulation. If people would stop reacting this way when other people attempt to communicate more efficiently, then thousands if not millions of people would be able to communicate far better than they do right now. I wish my friend all the best of luck, and I wish anyone who gives her trouble over it to shut up already and get over themselves, and better yet to learn about how much more enriched her life is going to be by this method of communication.