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As our information moves faster, we move faster. And as more of humanity comes online (2.3 billion more people in 2016–2017 alone), it’s causing a fundamental and spontaneous restructuring of our collective behavior. The overlay of our evolving planet wide digital nervous system has taken the perennial drivers of change — human needs, politics, geography, culture — and woven […]

The genetic basis of … everything (or, Maybe we’re all autistic)

Maybe it’s because I’ve been around autism for so long now, but I can’t understand why anyone would find it so surprising that a possible “cause” of autism is a complex interaction of genes. Several recent stories (such as those documented by Kristina Chew and Mike Stanton) have made this point as if it is some new discovery. Granted, it may have only recently been scientifically validated, but this one seems to me to be common sense.

You might as well ask questions like, “What is the cause of introversion? Extroversion? Natural athletic ability?”

I can hear many people saying something along the lines of, “But those ‘conditions’ are normal.” Are they? I mean, in a statistical sense, are they really ‘normal’? I would say no.

If you look at the introvert/extrovert question, I would guess (yes, I’m guessing, no science here) the bell curve of this spectrum would have a few at either end and the rest (you guessed it) within two standard deviations of the mean. Same for athletic abilities.

If we look at autism in this way, as a spectrum across all people (and not just those we currently refer to as autistic), I propose that we might see something similar. On the left side of the bell curve, you would have those that are very non-autistic, the incredibly sociable communicative, etc etc. On the right side, you would have those that are very autistic (what we now simply call autistic). And in the middle, within two standard deviations, would be the vast majority of us showing our mix of autistic and non-autistic traits.

Why don't more people understand this yet?

One of the dangers of being too close to a topic like autism and autism awareness is that you sometimes forget that not everyone has caught up with you in their perception of that issue. Even people you think should know better by now.

An example that recently struck me was how many people still don’t realize that “low-functioning” autistics can be very intelligent.

In her new book Strange Son, author Portia Iverson describes her initial reaction to the idea of an intelligent “low-functioning” autistic:

“There’s a boy I think you should know about,” Francesca Happe began, gesturing for me to sit down. “His name is Tito.” The renowned psychologist from England, whose specialty was autism, continued: “He’s eleven years old and he lives in India. He’s quite autistic, but he can read and write and he’s very intelligent.”

She smiled at me and paused before going on, as if to gauge my reaction.

“Tito is a wonderful poet as well,” she continued. “He’s even published a book, an autobiography with some of his poetry in it.”

“And he’s autistic?” I asked in disbelief, thinking I must have misunderstood.

“Yes, he is definitely autistic. … There is only one Tito in this world, and no one else like him. He is his own disorder,” she replied with certainty.

I knew that no one had ever heard of such a severely autistic person being able to write and communicate independently. But wasn’t there even a remote chance that there could be others who looked and acted just like Tito but couldn’t communicate? At the very least, couldn’t Tito provide an extraordinary window into the most severe kind of autism?

This exchange between Iverson and Happe occurred in Spring 1999 and serves as the starting point of the story that Iverson tells in her book. Not to spoil the ending, but by the end of her story (circa 2003), Iverson comes to the conclusion that to me today seems so obvious: Tito is not one-in-a-million, he is not “his own disorder.”

Fast forward several years to two days ago. From his blog, Dr. Sanjay Gupta of CNN describes a recent meeting he had with Amanda Baggs, author of the ballastexistenz blog:

Amanda is obviously a smart woman who is fully aware of her diagnosis of low-functioning autism, and quite frankly mocks it. She told me that because she doesn’t communicate with conventional spoken word, she is written off, discarded and thought of as mentally retarded. Nothing could be further from the truth. As I sat with her in her apartment, I couldn’t help but wonder how many more people like Amanda are out there, hidden, but reachable, if we just tried harder.

Trying harder starts with getting the word out. But how to go about it? I’m glad that Dr. Gupta has written about Amanda, and that Anderson Cooper had her on his show last night (I’ve not seen it yet). Too much of the coverage of autism is doom and gloom, maybe this will help to get the word out to a few more people.

But I have the feeling it is going to be a long, hard trail, because even those that should know better by now obviously don’t know yet. Dr. Gupta captures this problem well in his closing paragraph:

I am a neurosurgeon and Amanda Baggs opened my eyes about the world of autism.

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There is also a story about Amanda posted on CNN Health.
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Update: From Anderson Cooper’s website on CNN, it looks like he may have more with Amanda on tonight’s show (22 Feb 07).
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