From John Elder Robison's Blog
By John Elder Robison
October 6, 2014
"As the neurodiversity activists say, nothing about us, without us."
This afternoon, a group of MIT and Mass General researchers released a study called “Autism as a disorder of prediction.” In this paper, they argue that autistic people “experience things they don’t understand,” because our predictive ability is impaired.
Read the Paper Here.
Interesting as this sounds, a close reading reveals the premise as totally at odds with my lived experience. I think of myself as a friend to those engaged in autism research, and I hate to come out in criticism of a newly released piece of work, but in this case I feel their conclusion are just wrong.
Anyone who has observed the prowess of a young Asperger video gamer would realize what a fool he'd be to bet against a kid like that's predictive ability. But that's not all. The hypothesis of this study does not hold up any better in my "real world" experience.
I do have some social disability, even now. My problem is that I cannot read the unspoken cues from people around me. My ability to evaluate what I do know – and to predict from it – is not weak at all. In fact, as a logical thinker it might even be stronger than average.
In other words, I have a weakness in data input, when it comes to human-on-human engagements. Too much of the wrong data and not enough of the right data equals trouble, even with the best predictor in the world.
No wonder we stim and compensate. They nailed that.
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Otherwise, with all due respect, this paper seems to be a perfect example of what happens with autistic behavior is interpreted by neurotypicals, as opposed to having the behavior explained by those who live it.
The study’s authors spend many pages expounding on an explanation of behaviors such as I describe in my own books and essays (Look Me in the Eye is one of their citations) when a conversation with an intelligent, insightful autistic adult could have set the whole thing straight.
Allow me to offer a comparison to put this in perspective. Imagine that an alien social scientist observes a human population and notes some puzzling and different behaviors. Some of the people eat some meat, but no pork. They call themselves Jews. Some of the people don’t eat meat at all, and they call themselves Vegetarians. Some of the people don’t eat bread, and they call themselves Gluten Intolerant. Some Gluten Intolerants eat meat, and some don’t.
Then, there are the ones who call themselves Catholics, and their strange seasonal aversion to meats. They refer to the aversion as Lent, and researchers scratch their heads to determine who’s the borrower and exactly what was loaned, to render Catholics unable to eat like the others.
Why the different behaviors? After careful observation, the researchers concluded that the Gluten Intolerants had the answer. They admitted to a biological deficiency; they cannot eat the foods others consume with gusto. Researchers hypothesized that Vegetarians and Jews were similarly affected but their food limitations were subtler. They even suggested some meats may be toxic. After reading about empathy, one researcher concluded the Catholics lent some un-discovered digestive process to their fellow men for a period, so they too could be healthy.
Their paper describing these discoveries was published to wide acclaim on Alpha Centari, but the humans mocked its conclusions when they read it back on Earth. The humans in the Alpha Centari zoo just snarled. The researchers wondered why.
An old Gluten Intolerant offered them a piece of wisdom. “Did you ever ask one of those Jews or Vegetarians about eating meat? I’ll bet they could give you the answer, and it isn’t what you think. It may be a mystery to you, but it’s no secret at all to them.”
The thing is, as aliens, they had absolutely no concept of religion. And the only thing they could conceive for Vegetarianism was the general concept of disability. The idea of a life choice was too strange to consider.
To an Autistic like me, this news is much the same. What it shows most of all is not insight, but the obliviousness of the researchers. I do not have a disorder of predictive ability. I've met many other autistics and I can't think of a one with predictive disability.
These researchers cited a line from my book as support for their hypothesis, when in fact the whole book expanded on my thoughts at considerable length, and made amply clear why I have trouble in social settings, and it's not poor prediction capability. How about you?
Having said that, I concede that there may be differences in how I predict things as compared to how neurotypicals predict. But this study does not answer that possibility, nor does it present any new evidence for what a difference might be and how it might happen. The autistic narratives the researchers cite don't distinguish input problems from processing problems in most cases. In any case, their interpretation takes those writings quite far from the context in which they were intended.
As an autistic person I don’t perceive the same things as neurotypicals. I make my decisions based on different incoming data. It stands to reason that my predictions will be different because the inputs to my predictor are not the same.
What’s the takeaway here? Bring the members of a community you want to study into your process at the beginning. Be guided by their knowledge, culture, and wisdom. Don’t let ignorance of another culture lead you down a wrong path. It’s wasteful at best, and can make you look like a fool.
As the neurodiversity activists say, nothing about us, without us.
John Elder Robison is an autistic adult and advocate for people with neurological differences. He's the author of Look Me in the Eye, Be Different, Raising Cubby, and the forthcoming Switched On. He serves on the Interagency Autism Coordinating Committee of the U.S. Dept of Health and Human Services and many other autism-related boards.
He's co-founder of the TCS Auto Program (A school for teens with developmental challenges) and he’s Neurodiversity Scholar in Residence at the College of William & Mary. The opinions expressed here are his own.