My Life With Asperger's

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

How Much Asperger's Is Really Face or Emotion Blindness?

How much of what we call Asperger’s is really Prosopagnosia and/or Alexithymia ?

How much of Asperger’s is really Prosopagnosia and/or Alexithymia?

 Those two words are a mouthful, aren’t they?   Prosopagnosia is the medical term for face blindness; the inability to recognize someone from a view of their face alone.  Alexithymia is the term for people who have difficulty identifying and describing emotions.

Do you have one or both of those conditions?  If you’re on the autism spectrum, there is a good chance you do, and if you’re like me, you may not even know it.  I have always had difficulty recognizing people out of context.  I seem to need context and setting to make sense of the people in my world.  Otherwise, I’m lost in a world where every face is a stranger.

I’ll give you an example:  I see a Jaguar pull up to our service department, and I watch the owner get out.  As he emerged from the car and walks toward me I put the picture together in my mind:  The look of his car (I recognize many people by their cars.)  The day, and our schedule, may remind me who he is.  The look of the person, and how he’s dressed also gives me a clue.  Putting it all together, it clicks.  I say to myself, Doctor Parker is here to drop off his car.  He walks in and all is well.

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But put us in a different setting – walking on the beach in Connecticut that summer – and Doctor Parker and I are in a very different position.  We see each other, in bathing suits or shorts and a tee shirt.  I feel no sense of recognition.  He says, “Hi, John,” and I panic,  though I’m careful not to show it.  Who is this person?  I have no idea.  Knowing I am recognized, I say, “Hi, how are you doing?  What’s new?”  I hope his response will give me a clue as to who he is, because I have no idea at all.

I’ve been that way all my life.  When I thought about it – which wasn’t often – I just figure that was how people are.  It wasn’t until last fall – when I participated in some testing – that I learned I have a weakness in recognizing faces – one with a name.  Prosopagnosia.  I was shocked to discover how much of my recognition of the people around me depends on context.  The extent of my weakness in this area was actually frightening to behold.

Here’s what I found:  If I take a photo of a close family member – my son, for example – and render it as a black and white line drawing, then crop it so there’s nothing but the face – I will no longer be able to recognize my own son!  I was shocked to discover that, but it’s true.

I began to wonder if this was part of my autism, or a separate problem.  For clearly, it was a problem.  It’s not a huge issue most of the time, but I’ve been aware of it enough that I make an effort to hide it, so as to avoid embarrassment and humiliation.  Luckily, my efforts usually work.

Want to check your own ability to identify faces?  Try this test:  http://www.faceblind.org/facetests/index.php   When I took it, I recognized 25% of the “famous faces” I was familiar with.  According to the test site, the average person scores closer to 75%, which explains why I don’t recognize Doctor Parker – or most other people – when they appear out of context.

Alexithymia was another surprise for me.  I’ve long known that I have trouble reading faces instinctively.  However, I taught myself to compensate by learning expression and body language.  I used to logic to determine what instinct could not show me.

What I didn’t realize was that I still missed the larger emotional picture.  Knowing someone is mad is better than being ignorant, but knowing that fact does not really tell me what to do in response, and reliance on logic doesn’t work too well either, at least not compared to acting from the certainty of instinct.  Some will say "instinct isn't certain," and that's true, but confidence in one's inner feelings gives people who can read emotions a powerful social advantage over folks like me. 

Apparently there is a whole network that’s missing or broken inside my head, and it adds up to this thing they call alexithymia.   You can take a test for it yourself, right here:  http://www.alexithymia.us/test-alex.html

Here’s the interesting thing:  Alexithymia occurs in 10% of the population, yet only 1.1% of the population has autism.   So the inability to read emotion is faces is far more common that most people know, and extends well beyond those of us on the autism spectrum.

Prosopagnosia is less common, affecting 2-2.5% of the population – a percentage that’s roughly double than that of folks affected by autism.   However, unpublished research from Sapienza University of Rome suggests that only 40% of people with autism also have prosopagnosia; meaning that three-quarters of prosopagnosia people don’t have autism. 

Autism is described as a communication disorder.  Clearly, people whose communication challenge involves the ability to speak or understand language are not being affected by these conditions.  But people with Asperger’s and more social or nonverbal communication impairments may well be.

In fact, researchers of both conditions cite examples of people misdiagnosed as autistic when in face they had prosopagnosia or alexithymia.  It’s easy to see how that could happen, if the diagnostician focused on communication challenge and not the broader picture – special interests, need for routine, and other traits of autism as described in DSM or ICD.

It begs the question:  Are prosopagnosia and alexithymia independent disorders or are the what we might call proto-autistic conditions?  That fact that so many people with autism also have one or both conditions suggests there may be a close tie, neurologically.  

One might be tempted to speculate that a large fraction of the Asperger population – a group principally defined by the inability to read unspoken cues and messages in the faces and bodies of others – actually has one or both conditions as a principal disorder.

But . . .

Other studies have shown that biomarkers of autism (brain plasticity, brain imaging markers, and genetic markers) tend to be the same in people with Asperger’s and traditional autism, and those people, as a group, are set apart from the non-autistic population. 

So what might we conclude from this, and what else we know about autism today:

- Both prosopagnosia and alexithymia are more common than autism (though we seem to have misjudged the commonness of autism by quite a bit)

- Both conditions are very common but not universal in people with autism.  Are the a result of autism, or are they independent?  No one knows.

- The close association between them suggests that autism, prosopagnosia and alexithymia may share some common causative factors; even that one may cause the other in whole or in part.

I’d be very interested in studies that looked more closely at prosopagnosia and alexithymia.  They are two under-studied conditions that might shed some light on the mystery of why we are the way we are.

For further reading

Alexithymia:

http://www.psychologicalscience.org/index.php/publications/observer/obsonline/autism-research-in-psychological-science.html?goback=%2Egde_67736_member_225608641

Prosopagnosia

http://prosopagnosiaresearch.org/index/information

 

John Elder Robison is an adult with autism.  He’s the author of three books – RAISING CUBBY, LOOK ME IN THE EYE, and BE DIFFERENT.  He’s a member of the Interagency Autism Coordinating Committee of the US Department of Health and Human Services, and he’s a strong advocate for people with autism and neurological differences.

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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