Thinking person's guide to autism

Why Doesn’t Respect for Communication Diversity Include Non-Speaking Autistic People?

Photo © Pier Paolo Tosetto | Flickr / Creative Commons
[image: Photo of a young child wearing a white baseball cat
crouching down and talking at a brown bunny.]

Emily Paige Ballou
chavisory.wordpress.com
One day, when I was 15 or 16, I was making my way through the crowded halls of my high school as I did most days, wondering for nowhere near the first time in my life how it could possibly be that I felt so isolated and cut off from most of my peers. Even ones I considered friends, or generally got along well with.
There was some quality of their relationships with each other that just wasn’t there when it came to me. Everybody seemed to know things I didn’t, all the time.
And finally, that day, I thought, “It’s almost as if I’m blind and deaf.” Not in the literal sense of not being able to see or hear, but in that it seemed like something important was being communicated in some way, on some kind of channel or frequency, that I didn’t have access to.
Well-meaning people would probably have tried to reassure me that no, of course that’s not what’s happening, everybody likes you, what are you talking about?
But by that point I was pretty sure I was picking up on something real, and that even if people weren’t deliberately trying to exclude me, they were communicating in ways that I had no idea how to perceive or interpret.
These days I’m told very frequently that I need to realize that “Some autistic people just can’t communicate.” But the thing is, I don’t believe we—me or anyone else or we collectively as the autism community—need to accept that at all.
In fact, I believe we are morally obligated not to accept that. And not only does personal experience tell me that just because a form of communication isn’t easy to see or hear doesn’t mean it’s not happening, I believe that even a cursory look at the diversity of communication and language as we know it exists in the world right now should make us highly skeptical of insistence that we uncritically accept that. Rather, it should humble us at the possibilities of what we don’t yet know how to see or hear, when it comes to people whose communication we don’t easily perceive or understand.
Human clinicians and researchers have developed systems to allow dogs to express themselves in English to us, and to allow horses to answer fairly sophisticated questions about their preferences using symbols. Researchers have decoded enough prairie dog language to know that they can communicate about abstract qualities like shape and color and distinguish individuals of the same species from each other. We know that whales have different dialects depending on where in he world they’ve lived and traveled. We can read honeybee dances. We know that crows can identify and remember individual humans, and convey information about dangerous humans to their flocks.
We even know now that trees and plants, even of different species, communicate with each other about danger and stress through chemical signals along fungal networks.
To make the movie Arrival (which I really highly recommend if you haven’t seen it), multiple artists, designers, and linguists collaborated to imagine how we might learn to communicate with alien visitors in a language that works profoundly differently from any language known on earth through the application of math and linguistics.
We sent the Voyager craft’s golden record out into the universe in the wild hope of making ourselves understood to another civilization that probably doesn’t communicate anything like us at all, encoded with instructions on how to read it and tell how much time has passed since its launch.
We have conducted extensive, interdisciplinary study on how best to communicate about the danger of radioactive waste to humans 10,000 years in the future, when modern English will likely be at least as incomprehensible to them as proto-Indo-European would be to most of us. And linguists have reconstructed the proto-Indo-European language itself not from any preserved written evidence but from artifacts of its grammar and pronunciation distributed throughout dozens of its descendent languages.
There is even preliminary evidence that some patients in comas, with locked-in syndrome, or previously believed to be in vegetative states, may be allowed to communicate via fMRIs.
And none of that was easy or magical. Humans don’t just come naturally wired for comprehension of the sounds with which crows and prairie dogs communicate to each other. It took years and years of observation and research and good experimental design and people committed to setting aside their assumptions and prejudices about what kinds of thought and expression non-speaking and non-human creatures could be capable of.
Indeed, just this week, the release of an innovative research study on non-speaking autistic people who use a letter board to communicate, has provided support to the position that those non-speaking people are communicating their own thoughts, and not being directed by their assistants.
So the thing is that, knowing what I do about the diversity of non-speech communication that exists here on earth, and about the innovation we have already shown in enabling communication by unconventional means, no, I cannot sit here and accept without serious question the presumption that “Some autistic people just can’t communicate at all.”
And often when I ask whether a child has had an AAC evaluation, or whether they’ve had access to a keyboard or letter board or ASL, some understandably frustrated parents will say “No, you don’t understand, we tried all of that and he can’t use it” but I’m really asking people to look even more deeply and broadly than that. Not only because it may truly be the case that some autistic people will never be able to use a device or master a sign language, but because some of the communication I’m talking about might not be the kind that can be readily translated by a machine or into conventional language.
Autistic people find ourselves reminded often that an estimated 80% or so of human communication is non-verbal, and that’s why we have so much trouble understanding neurotypical communication if we’re trying to rely on what people say out loud. As I intuited when I was a teenager, the "out loud" is only a fraction of the communication occurring, like visible light in the electromagnetic spectrum.
But somehow we’re not supposed to believe the same thing about autistic people—that there may be huge swaths of someone’s expressive communication that isn’t literal spoken or written language. When it comes to non-speaking or non-verbal autistic people, suddenly we’re supposed to believe that the impairment or absence of that verbal 20% means that the other 80% isn’t there at all. And that’s an assertion for which we don’t have an evidence base that makes me confident in our ability to write off the possibility of improved communication with some of the most vulnerable autistic people among us, in good conscience.
What I am not saying is that with the right technology, every non-speaking autistic person would be able to communicate articulately or even conventionally in verbal language. What I am saying is that we can and must do better than we have been for people with the least well-understood needs for communication support. For some autistic people, that may mean giving someone the means to access more or less conventional verbal language. For some, it may mean that we need to vastly broaden our own range of perception for what the expressive medium of their communication may be.
When we fail to consider that someone’s communication may simply be completely opaque to us, particularly in light of research showing that autistic people’s neurologies may all be utterly unique, not only between autistic and non-autistic people’s on average, but completely distinct even from each other’s, then “Some autistic people can’t communicate at all” isn’t something we have the basis to know.
When we are far more willing to believe in the capacity for communication of animals and aliens than we are in that of non-speaking and intellectually disabled autistic people, and extend our research and creativity towards mutual understanding, no, I have to reject the assertion that “Some autistic people just can’t communicate,” or at least regard it with the utmost skepticism. I believe that to be a failure of imagination, ethics and research priorities on our part, not a fact.Original Article

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