Welcome back to Reading the Research, where I trawl the Internet to find noteworthy research on autism and related subjects, then discuss it in brief with bits from my own life, research, and observations.
Today's article is a step forward in describing what exactly autism is... and possibly a step back in terms of autism advocacy.
This study, and others, aim to identify subgroups in the autism spectrum. I've complained in the past about how diagnostically useless the word autism is. The same word encompasses me, a highly verbal and seemingly normal-presenting biologically female adult, as well as an entirely nonspeaking six year old boy.
This is kind of a stupid state of affairs. Saying "I'm autistic" or "my kid is autistic" conveys almost no immediately usable information if the listener knows the vastness of the spectrum. Having subgroups would help give the listener a better sense for what that means. It could also mean more targeted therapies.
So, for example, pretend type C autism was the type that denotes nonspeaking autistics that show strong signs of having the ability to learn to communicate via voice. You would try to get speech therapy for people in this subgroup, in hopes of nurturing their ability to communicate that way. Whereas that would be a waste with someone like me, because other than slurring my words and not enunciating as much as I should, I don't really have verbal communication problems. It would also likely be a waste with people that don't show signs of trying towards vocal communication, because the effort would better be spent teaching sign language, communication via keyboard or text-to-speech, or a pictoral communication system.
So, theoretically, having subtypes of autism would be great, right? Well... given the current state of the autism community, it also worries me. There's basically an ongoing argument between some autistic self-advocates and some parents. The self-advocates say, "Hey, I have similar experiences to your kid, you should listen to me so we can make the world better for all of us." And the parents say, "You don't speak for my kid, only I can do that and as their parent I know how best to advocate for my kid."
Basically, those parents proceed to ignore pretty much everything self-advocates have to say. I'm not going to claim that any given self-advocate has all the answers for any given parent, but I do think it's really dumb to ignore first-person sources on a subject when they're right in front of you. But that's exactly what happens, and as a result, autistic voices are silenced.
Splitting the autism spectrum into subtypes is likely to fuel that kind of rejection and silencing. To get a sense of why I'm sure this will happen, here's a rainbow.
Autism is a called a spectrum. That word is also used to refer to light. The rainbow is a spectrum, showing all the colors our eyes can process. When we talk about color, we have distinct words for each hue in the rainbow. No one confuses orange with blue (unless color-blindness can do that), because they're so obviously different colors. We don't consider them similar colors. There are no blue carrots, and the sky is not orange unless the sun is rising or going down.
The thing is... the rainbow is part of a much, much broader spectrum: the electromagnetic spectrum.
Look very carefully here. See where the rainbow, the entire of the human ability to see, fits into the broader picture? It's a really small nubbin of a region in the overall picture. And this graph is actually erring on the side of being readable, because those exponents (10^6) mean the difference between them is huge.
The difference between 10^2 (100) and 10^3 (1000) is 900. The difference between 10^2 and 10^8 is 99,999,900. See how ridiculous this quickly gets? The rainbow of colors that we interpret our world through is a minuscule fraction of the visible spectrum. All the poetry humanity has written about color and light can be summarized into a barely relevant splinter on the spectrum of light.
The color blue, then, has far more in common with the color orange than it has with any radio waves and xrays. But because we see them as so distinct from each other, and can't see the riot of other light beyond the visible spectrum, we treat them as very different colors.
I'm worried, honestly, that if we divide the autism spectrum into these colors, that people will immediately fixate on those seemingly obvious differences, and ignore the vast and sweeping similarities that bind the autism spectrum together. And in doing so, they will silence self-advocates more than we are already, insisting in an ever-louder voice that we have nothing to offer the other subtypes of autistic people.
(Pst! If you like seeing the latest autism-relevant research, visit my Twitter, which has links and brief comments on studies that were interesting, but didn't get a whole Reading the Research article about them.)
Today's article is a step forward in describing what exactly autism is... and possibly a step back in terms of autism advocacy.
This study, and others, aim to identify subgroups in the autism spectrum. I've complained in the past about how diagnostically useless the word autism is. The same word encompasses me, a highly verbal and seemingly normal-presenting biologically female adult, as well as an entirely nonspeaking six year old boy.
This is kind of a stupid state of affairs. Saying "I'm autistic" or "my kid is autistic" conveys almost no immediately usable information if the listener knows the vastness of the spectrum. Having subgroups would help give the listener a better sense for what that means. It could also mean more targeted therapies.
So, for example, pretend type C autism was the type that denotes nonspeaking autistics that show strong signs of having the ability to learn to communicate via voice. You would try to get speech therapy for people in this subgroup, in hopes of nurturing their ability to communicate that way. Whereas that would be a waste with someone like me, because other than slurring my words and not enunciating as much as I should, I don't really have verbal communication problems. It would also likely be a waste with people that don't show signs of trying towards vocal communication, because the effort would better be spent teaching sign language, communication via keyboard or text-to-speech, or a pictoral communication system.
So, theoretically, having subtypes of autism would be great, right? Well... given the current state of the autism community, it also worries me. There's basically an ongoing argument between some autistic self-advocates and some parents. The self-advocates say, "Hey, I have similar experiences to your kid, you should listen to me so we can make the world better for all of us." And the parents say, "You don't speak for my kid, only I can do that and as their parent I know how best to advocate for my kid."
Basically, those parents proceed to ignore pretty much everything self-advocates have to say. I'm not going to claim that any given self-advocate has all the answers for any given parent, but I do think it's really dumb to ignore first-person sources on a subject when they're right in front of you. But that's exactly what happens, and as a result, autistic voices are silenced.
Splitting the autism spectrum into subtypes is likely to fuel that kind of rejection and silencing. To get a sense of why I'm sure this will happen, here's a rainbow.
The thing is... the rainbow is part of a much, much broader spectrum: the electromagnetic spectrum.
 |
| A graph: linear vs exponential |
The difference between 10^2 (100) and 10^3 (1000) is 900. The difference between 10^2 and 10^8 is 99,999,900. See how ridiculous this quickly gets? The rainbow of colors that we interpret our world through is a minuscule fraction of the visible spectrum. All the poetry humanity has written about color and light can be summarized into a barely relevant splinter on the spectrum of light.
The color blue, then, has far more in common with the color orange than it has with any radio waves and xrays. But because we see them as so distinct from each other, and can't see the riot of other light beyond the visible spectrum, we treat them as very different colors.
I'm worried, honestly, that if we divide the autism spectrum into these colors, that people will immediately fixate on those seemingly obvious differences, and ignore the vast and sweeping similarities that bind the autism spectrum together. And in doing so, they will silence self-advocates more than we are already, insisting in an ever-louder voice that we have nothing to offer the other subtypes of autistic people.
(Pst! If you like seeing the latest autism-relevant research, visit my Twitter, which has links and brief comments on studies that were interesting, but didn't get a whole Reading the Research article about them.)
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