My Life With Asperger's

How to live a high-functioning life with Asperger's.

It's the look of Autism . . . but what is it?

Do people with autism have a distinctive facial structure or expression?

The look of autism . . . what is it, exactly?

I see certain people, and I think, "He' looks Aspergian." Often, if I talk to them, they'll say, "Yes, I have Asperger's too." Exactly what am I seeing?

And I'm not the only one. Many moms with a kid on the spectrum have a very good instinct for spotting other autistic kids. Some psychologists and mental health workers have this ability too.


If I ask other people what it is they see, they often give a convoluted explanation of all the things they observe to justify their conclusions. Yet I doubt what they say . . . I make those judgments in a moment when I see someone, and I've observed many others who do the same. There's no time for all the so-called observation. Somehow, it's a gut level thing.

Those of you who've heard me speak may have gotten some of my ideas on how we do this. I think there are clues in our facial expressions. We Aspergians all remember making wrong expressions at inappropriate times. But wrong for whom? Our expressions seem wrong to observers who don't have autism, and who read some totally wrong negative meaning into our look.

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But between Aspergians, are our expressions still wrong? I don't know the answer to that, because I didn't knowingly know any Aspergians as a kid. And now, being older and better trained, I don't make those "inappropriate expressions" very often.

But I still recognize fellow Aspergians, in fact I do so more effectively with every passing day.

So I wonder if those different expressions serve as a subconscious signal to between Aspergians . . . "he's like me." In the past few months I have devoted a lot of thought to this question. I'll be writing about it in Beyond Normal, my next book.

Yesterday I spoke at the Thompson Center, an autism research facility at the University of Missouri. I met Judy Miles, a geneticist who's studying the same question, but from a different perspective. She said something fascinating to me. "In the 1940s, Kanner wrote about beautiful children with autism." Later readers have taken that as a metaphor, but what if he meant it literally? As she says, there are some kids with profound autism who are also have beautifully sculpted faces. Could there be a connection?

Before you dismiss that idea out of hand, consider that there are facial markers for any number of other differences. Down's syndrome comes to mind as another condition with a distinctive look.

She's using a system from 3DMd that employs four groups of cameras to make a full view of the subject's head, which is then rendered in 3d in the computer for analysis. I've got some research papers on her work, and I can't wait to learn more about it.

My life experience tells me there is a distinct look to "people like me." I can't say if it's in our facial structure, or our expression, or both. I also can't say it's "one look fits all." I get that "he's Aspergian too" feeling often enough, but there are also times when someone approaches me and says, "I have Asperger's," and I don't get any connected feeling at all. But perhaps another Aspergian would say, "he's like me" to that same person.

What's the value of all this, you ask?

Recognition of a look of autism would be one more step in the evolution of society. I often say, knowledge is power, and that's a potentially powerful bit of knowledge. It could certainly help me understand other people, and I'm surely not alone in that.

There are those who will certainly differ with me, saying such recognition could be used to discriminate against autistic people. I can't deny that may happen. But in the end, I think the benefits of greater insight like this triumph over the drawbacks based on misuse.

What are your thoughts? 

John Elder Robison is the author of Look Me In The Eye: My Life With Asperger's, and Be Different, Adventures of a free-range Aspergian.

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