Monday, April 27, 2009

The look of autism

I posted this story on my Psychology Today blog, where it generated a number of comments. I've repeated it here . . .

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.

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.

Last week 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?

32 comments:

Tate Lowe said...

Hi John, I just read your book "Look me in the Eyes" and loved it. I am a father of an 11 year old girl with Aspergers. She has read the book as well and it helped both of us understand certain things better.

Having a daughter, and an undiagnosed stepfather and brother in law, with aspergers has let me recognize the trait in strangers as well. Especially children but that might be becasue most of my experience is with my daughter.

For some reason I have always been a people watcher and observed how people talk and behave from afar. It is like you say a gut instinct but I think that is just our brain instantly comparing those tiny nuances and making a split second analysis about them and their relation to others. It is hard to put into words though.

If I had to try to describe it i would say it is not just seeing someone making the wrong expression (because I don't always know the situation they are in when I see them) but sometime it is an exaggerated, or ever so slightly distorted expression.

My daughter has always had the hardest time making a proper smile for the camera to the point where she had to practice in a mirror to make it better for school pictures. And today it is still...off. I wonder if the facial muscles are "clumsy" like i know a lot of other aspergians major muscles are. Or the controls to them are I guess I should say.

So maybe the relaxed state of these muscles is unique, or maybe they are always a little tensed up or something. Not sure just thinking this up as I type.

Anyway, again I loved the book. Entertaining, informative, and funny to boot.

Eric said...

I agree wholeheartedly with everything you said John. After discovering that I had Asbergers, I started talking about it with family and friends. Almost to a tee, they all said that "I knew there was something different about you, but I couldn't pin it down. I could see it in your face". I was rather amused about it at first, but when I gave it some thought, I realized that they were right. I especially noted it in any picture taken of me, I have never been able to offer a convincing smile at request. I do laugh and smile when I am amused or happy, but changing my facial exressions at will to adapt to a particular situation is impossible. I can't fake my feelings. It made things rather amusing when I was selling cars in Northhampton. The dealer I worked for wanted cars moved at any expense, regardless of their present condition. Didn't work for me. I had to be convinced of the car's worthiness myself before I could successfully sell it to a customer. Being less than 100% honest was impossible. That total honesty got me in trouble on more than a few instances. I always said the first thing on my mind, whether it was good or bad. And the facial expressions went along with that. I have since found that this trait is part of any person that I have found with Aspergers. It is very difficult to create a desired look for a particular situation. Except that now, I find it amusing. And now that my family and friends realize why I always did it, they also have accepted it. Makes for more than a few jokes at my expense, but now it is good-natured. Thanks so much for the book, the blog, and everything else that you are doing for the cause. I wiggle my ears in anticipation of your new book. Woof.

GrandmaD said...

Hi John, I met you last week when you were at the University of Missouri. Your latest post regarding facial characteristics I found very interesting. My son, age 30 now, would never look people in the eye, or respond in what mainstream society would consider "normal" ways. I felt his pain, as he tried to develop friendships throughout school. Reading your book, and other information you have made available through the internet, has given a voice to those individuals and their families whom have endured the complex mix of
misunderstanding and ridicule
Perhaps you have opened a door for others to see into.....I loved my son unconditionally, and was his strongest advocate, hopefully with a better understanding and research, children will not have to suffer the consequences of this complicated condition. Thank you for your time and experience to this very worthwhile cause.

Amanda said...

Like you say, as a mum of two autistic girls I can pick another autistic kid at 50 paces in an instant. I never used to be able to do that, pick the odd one out, but since having my own I seem to pick up on the way a person holds themselves, their posture, their context more than anything I suppose. Is this because I've trained myself to pick up on my own girls' moods and needs?

denise said...

i am having problems with my 2 sons they are getting treated horrible by there school and there saying they have ADHD when i think they have aspergers. my email addy is pinkrose212000@yahoo.com. my name is denise mcginnis. i dont know where else to turn but someone who knows what i am going through. if u could give me some help i would be so greatfull. i was going to buy your book but dont have the money. thanks for your time

Michelle O'Neil said...

Well, I do think there are many, many children on the spectrum who are exceptionally beautiful. My Riley included!

: )

If only we could get the pediatricians to recognize a "look of Asperger's." Kids might get better early intervention instead of having their parent's concerns dismissed.

polyrhythmia said...

Is the look of autism more than just the look of a face that doesn't have that much facial expression? Maybe I don't really have autism, but just a stack of emotional problems that sorta resemble it. As far as being physically attractive, I'm certainly not that. It will probably turn out that some with autism will have that certain look, while others will not.

The River Otter said...

I call it "A-dar." Like, Gay-dar for Aspies/Auties.

Albrights said...

I am a special ed teacher in KY and my book group is reading your book for our next meeting. I feel like I meet people and peg them as being on the spectrum. I have always wondered if that is fair. I gather you think it is ok, as long as it is not a negative judgment, which it is not. I think that it would allow the person to understand themselves better. Thank you for writing the book!!!

The Girl from the Ghetto said...

Jon, I agree with you, but I need to vent something off of my chest. My stepson clearly has Aspergers, and has been told this by his school, and two doctors. His mom took him to a center (Who missed it last time he was tested) and they again think that he doens't have it, and now his mom thinks that he doesn't either. I am so frustrated by the lack of information out there, and I appreciate all of your work spreading the word. How can i know this about him when other trained medical professionals don't?

http://www.thegirlfromtheghetto.wordpress.com

John Elder Robison said...

Girlfromtheghetto,

There is no way for me to know who's right. You see what they can't, or you are mistaken.

It does nto really matter, if you apply lessons like in my book, and life goes better for the kid.

You should just do what works and learn as you go.

I'm not sure if that's a "look of autism" issue or something else, though

John Elder Robison said...

Albrights, I did not render a judgement about "pegging people on the spectrum."

Actually, it never occurred to me to question if it was good or bad. To me, it just IS. Is is neither good or bad.

Don't confuse a moral judgement with an evolved sensitivity. That's what I am discussing here.

John Elder Robison said...

River Otter, A-Dar is a great name

Kathy said...

I think you are on to something John-
I don't know what it is-but I can see it in a heartbeat-this "look of autism"-and it would be GREAT if it were something others could perceive as well-to know that the person is on the spectrum-and to not read their behavior in negative ways-as often happens

Barbara said...

I, too, can spot it in other people. My son has NLD (which is very similar to Aspergers) and I'm very intune to it. Part of it is that you can just see it in the mannerisms and in the look and facial expressions, and part of it is just intuition I think. As a mother of a child who is different, I spend a lot of time just watching him and so I can just see it in other people. However, I can't say that I can tell if someone is Aspergers' or NLD, or some other similar syndrome, I just know that they have something that is along those lines.

The Logans said...

John- are you familiar with Malcolm Gladwell's "Blink"? He addresses what you are talking about, making snap decisions, etc.

Osh said...

Interesting...at school last week another student made a comment about a kid looking autistic and my son (who has Asperger's) declared "Autism doesn't have a look!"

wrongshoes said...

Have you seen this?
3D face scans spot gene syndromes
http://news.bbc.co.uk/2/hi/science/nature/6982030.stm

I bet there's a genetic component to the "look" you're detecting. Perhaps there are several genetic differences that can all cause Asperger's (or something similar), each with a different "look." That might explain how some people have it and some people don't.

My son definitely has a different look (that I also had as a child). He still looks like a baby at 4 years old, with a large forehead and sort of sunken, enlarged eyes.

Incidentally, I read somewhere that autism can be detected by forehead differences (usually a protrusion where the frontal lobe is enlarged, I believe.

Moz said...

I understand what you mean about a look. It's not a bad look or even a strange look. It's just a different look and after working in mental health for 25 years and doing lots of training for autism, I am getting good at spotting kids on the spectrum. We identified a 15 year old yesterday who had never been considered to be aspergian before. You have really taught me a great deal about life on the spectrum as well. Thanks for your wisdom. Keep on teaching!

Jen said...

I think you bring up an interesting point, I have been told that I have "A-dar" by fellow colleagues. I think I am just aware of the differences of the slight looks and behaviors because of what I have learned from my own son with Aspergers. Interestingly enough, in college, I was told I had good "gaydar" too.

Ghost said...

It's the posture and the way they move: there's something always just a little "off" about it. I don't usually look at people's faces, but I'm pretty good at spotting the Aspie. It's like a little popup alert in my head: "hey! That one's like me!"

Baloney said...

I like the A-dar name. I know exactly what you're talking about. I'm so used to seeing it on my son, especially in pictures.
How nice it would be if others could be trained to recognize it and automatically understand!

Queenbuv3 said...

I suspect I have Asperger's and I always feel like people are looking at me funny because I'm "off" in some way. Either my timing in the conversation is off, I go off subject, get into too much detail, make the wrong expression, am overly expressive with my facial expressions or talk too loud with too much emotion, move in a methodical way, etc. I always feel like people are staring at me and when I look at their faces they look at me like "what's wrong with her?" or like they are amused by me in some way that I wasn't aware was amusing to other people. I always ask my husband if he notices people staring at me and being the wonderful hubby that he is, he always says it's because I'm so good looking. Nice thought, but I don't think that's it, LOL!!

I have learned to make eye contact although it is more like a stare that is hard to stop and harder to start again once I have disengaged. I have learned to not say exactly what is on my mind some of the time. Very hard to do! As "Eric" was saying I am very honest and it's hard to lie. I find it so natural to be honest and blunt that I would rather have an argument about the truth than try to lie.

My son is Autistic so I can usually spot people who are Autistic or Asperger's in a heart beat. My husband and I are probably Aspie so I'm sure that has something to do with it also. There is definately something that we are all noticing.

Queenbuv3 said...

By the way, as far as people on the spectrum being beautiful, my son has the face of an angel : )

John Elder Robison said...

Queenbuv, you do sound Aspergian to me. Time to read up, I suppose!

Woof.

And thanks for your thoughts on the look. I'm sure there's a lot there if only we can unravel it . . .

Coach for Aspergers said...

Hi John,

I love your blog and your book. I'm looking forward to your next book.

Paul Ekman has made a career of studying faces and how they communicate emotion. His book, Emotions Revealed, is filled with photos showing the very subtle differences between different emotions, and how changes in one part of the face change the meaning entirely. The amazing thing is that we can often recognize these signs automatically. I wonder if you're noticing something along those lines?

karmamama said...

The mothers of the children that my son played with, said that he was "more introspective" than the others. He also circled the group a lot, rather than immersed himself within the group.

I didn't fully notice his "look" until I was in the hospital a year ago and was away from him for many days for the first time. When he came to visit, I saw it perfectly clear for the first time.

It's like he's far away and deeply within himself at the same time. It's kind of "other-worldly". He's just a step farther apart than the rest of the normals.

I think that it's a result of taking so much in and needing to process more deeply. It's a look of deep awareness and the way that he copes with constant over-stimulation.

I see it now all around me.

Inexperienced people might confuse it with looking "checked out", but that doesn't quite capture The Look.

At the risk of sounding too out there, I think austistic people exist in a different dimension withtin the prevailing one. You see more, experience more, and don't naturally lie or distort what you experience. It's a lot. Hence, the Look.

Correct me if I'm wrong, pet me if I've hit upon anything that resembles your experience.

sylvia said...

Just reading your blog today (and enjoying it). In terms of "The Look of Autism" I read that there is some research that shows that when we (as in all young teens) hits puberty, the brain starts 'pruning' its connections. However, in the Aspy case, the pruning does not stop where the typical NT pruning does.

Have you heard this as well? I found it quite interesting. I cannot remember which book I read it from.

I have an Aspy son (17) and a husband who is not diagnosed, but responded "This sounds like me" when he read our son's psych evaluation. I am probably what you would term extreme NT, as well as our 14-year old daughter; makes for an interesting mix.

dawn said...

Hi John! I've been enjoying your blog. Thought about responding to your Cubby posts, but everybody else has already said what I would have (way to go, Cubby!), and this thread is so far the most personally intriguing.

My son Elliot, almost 5 and diagnosed as PDD-NOS, get lots of "looks", and sometimes laughs, when we're out. He's a beautiful kid, as strangers frequently point out, but he also moves about in a sort of swimmy/floppy way, a sashay of sorts, that marks him as different.

I see many Aspergian traits in Elliot (and in my dad, my uncle, myself), but since Elliot can be rather outgoing and dramatic, he doesn't easily fit the ASD stereotype of the quiet introvert and has more than once received the "he doesn't have any autism, he's only ADHD" comment by people who barely know him.

But what I mainly wanted to say is that, in my experience, people on the spectrum tend to gravitate towards others like themselves, or--as is the case with my dad and mom--to neurotypicals who are so extremely trustworthy and goodhearted that they can serve as guides in an otherwise threatening world.

I know that I naturally gravitate to people who are "different" in Aspergian ways, perhaps because we have an intuitive understanding of each other.

Elliot gets along wonderfully with an 8-year-old Aspergian son of friends of ours, and he has a brother-like bond with a six-year-old who shows every sign of being Aspergian but has not been diagnosed.

I look forward to meeting you when you come to Defiance in September. As soon as I finish my creative writing syllabus, I'm sending it on to my students along with encouragement that they both read your book over the summer and investigate your blog for themselves, not in an "you'll get extra credit if you write to John" kind of way, but just in a "John is really an interesting person--I think you'll like his perspective" way.

Marita said...

Hi, I've come to your blog via a link at Wrong Planet forums. Just wanted to say thank you for the insightful entry it has certainly made me think about this issue in another way.

Crystal said...

First off, I love your book! I just finished writing a book about my journey through autism (my son is autistic). I'm trying to get it published.

I notice a lot of autistic children right off the bat because of their actions and behavioral symptoms. I can't say that I can tell a physical difference, though.

Again, I really enjoyed your book. Check my blog out if you get a chance. :)

Lai Ming said...

My son was diagnosed with autism at 4yrs. I honestly didn't suspect anything, but his dad insisted I take him in to the pediatrician. After working closely with my son and also becoming acquainted with many of his classmate in Special Ed, I'm pretty much spot on in identifying other autistics. Over the years, my husband has made the assertion that our son may get some tendencies from me (!). Well, I thought that was a stretch until I read your book. Now I do see a lot of Aspie traits in myself, tho prior to your book, I had no knowledge about what I considered "the other autisim" heheh. What to make of it? For me, I suppose it's like when I begin to consider purchasing a certain type of car. Suddenly, the road is filled with Land Rovers, when yesterday I saw none. But as for my husband, perhaps he has an A-dar because he has some kin on the spectrum? maybe he just fell for my good (Aspie) looks.
Here's a thought I'm having about the "beautiful people" factor that you might like... anthropologists say that we are unconsciously attracted to a mate based on indicators pointing to the best chances of survival or perpetuation of species. For example, a woman with long, thick hair may appear fertile ("a picture of health") and therefor desirable. A muscle bound hunk was the "gold standard" at one time, tho his brawn may be obsolete in the present technological age. I know that this theory is a buzz-kill for all those romantics out there... BUT let's apply it here anyway, for fun. What if the features of Aspies and autistics have, through some force of natural selection, drawn us in because they are in fact the next big thing that mankind has to offer?
I apologize in advance if my assertion is offensive to some... most of mine are.. ~ MJ