Today we have two lenses with which we view autism.  The social model says autism is a difference, and any disability is an artifact of society, not the autism itself.  Proponents of that viewpoint cite the example of someone who is rejected by the group because he "acts strange."  That is a social thing, not a medical problem.  However autism is more than that.  While I agree that some disability is social in nature, I don't believe all autistic disability is social.  Autistic people with epilepsy or intestinal pains (for example) would probably say those things cause real suffering, and they are medical in nature.

According to the diagnostic standards (the DSM or the ICD) autism is a communication disorder.  What does that mean?  It’s different for everyone.  We talk about an autism spectrum because of the tremendous range of affect.  Some people are crippled by it, while others have absolutely no outward sign of difference.  Some are intellectual disabled while others show signs of genius.  Autism affects people at every point on the IQ scale. 

Doctors would say that some of autism's more severe forms of social disability have their roots in medical dysfunction which to them is more than difference.  Doctors also cite the medical conditions that so often accompany autism - anxiety, depression, intestinal distress, epilepsy, and sleep disorders to name a few.  Most autistic people live with one or more medical complications.

Today I describe autism as a mix of disability and exceptionality.  Anyone who receives an autism diagnosis must by definition have a significant degree of disability in some aspect(s) of their life.  Yet the same person may also have extraordinary abilities in other areas. For some, autism feels exclusively disabling.  For others it's very much a double edged sword.

Some people think autism has always been with us, and it’s a natural variation of humanity.  A few people think autism represents humanity 2.0.  Some think autism is the result of lead or mercury poisoning, or some other environmental insult.  Some believe it’s a combination of genes and the environment.  The truth is probably all that and more.  Science is suggesting there are many paths into autism, and they may have very different impacts and outcomes. 

Some people with autism have trouble speaking, or understanding speech.  Others miss the nonverbal signals that are such a big part of human interaction.  People who have significant language problems have been described as autistic for many years.  Those of us with nonverbal communication challenges have not been recognized until fairly recently.  The autism spectrum includes several conditions: traditional autism, Asperger’s syndrome, and PDD NOS.  The latest revision of the DSM will combine all those into one category: Autism Spectrum Disorder.

You’ll hear some people say autism is a disorder, while others say it’s just a difference – a part of the variation of humanity.  Autism is definitely a disorder for the people who feel disabled by it.  Some of those people will be disabled all their lives, but others will grow up to live independently and successfully.  For them autism becomes a difference.  The key is, autism starts out as a disability.  The degree to which it becomes a difference depends on our individual abilities and circumstances.

Our disability may be offset by one or more extraordinary gifts that are also a result of autism.  According to the latest figures autism affects slightly more than 1% of the population, and a significant fraction of us have some exceptional skill.  Many more people have some autistic traits, but they are not impaired enough to qualify for a disability diagnosis.  Scientists refer to this population as the “broader autistic phenotype.”  Ordinary people may call these folks geeks, nerds, or eccentrics.

Autism is caused by differences in the development of connections in our brains, and by differences in the development of the brain cells themselves.  Most scientists believe those differences are the result of genetic predisposition combined with environmental influences, either before or after birth. 

Kids with autism usually show differences by age five, and trained observers with good screening tools can identify autistic kids much earlier.  Autism is not a condition one “catches” later in life.   Autistic brain differences cause kids to think and respond differently from their peers, often leading to isolation, teasing, and bullying.  As autistic kids grow up, they often learn coping strategies that allow them to fit in and engage with society more successfully.  This process is what I call “emerging from disability.”

Studies are underway to develop medical tests for autistic differences but at this time the condition is still diagnosed by interview and observation.  These are the principal points used in diagnosis today, as adapted from the proposed autism definition for DSM 5:

Autistic people have problems with social-emotional reciprocity; ranging from abnormal social approach and failure of normal back and forth conversation through reduced sharing of interests, emotions, and affect and response to total lack of initiation of social interaction.

This covers a very wide range of behaviors, from walking up to someone and saying something totally inappropriate as a greeting (Hi, Bob!  Boy, you sure look fat today!) to a child sitting in a sandbox totally oblivious to all the kids around him.

We also have deficits in the nonverbal communicative behaviors used for social interaction; ranging from poorly integrated- verbal and nonverbal communication, through abnormalities in eye contact and body language, or deficits in understanding and use of nonverbal communication, to total lack of facial expression or gestures.

This means we may fail to understand some or all body language and expression.  We may not be able to distinguish praise from sarcasm, or any other emotion.  We may not show many expressions ourselves, even though strong emotion may be inside us.

We have problems developing and maintaining relationships that are appropriate to developmental level (beyond those with caregivers); ranging from difficulties adjusting behavior to suit different social contexts through difficulties in sharing imaginative play and in making friends  to an apparent absence of interest in people

We may not have many (or any) friends, or we may think we have friends but those we name would define us as mere acquaintances.  We may misunderstand the expectations of friendship, especially when we move into romantic relationships. 

Autistic people may also exhibit restricted, repetitive patterns of behavior, interests, or activities as manifested by at least two of the following: (quoted from DSM 5)
1.     Stereotyped or repetitive speech, motor movements, or use of objects; (such as simple motor stereotypies, echolalia, repetitive use of objects, or idiosyncratic phrases).
2.     Excessive adherence to routines, ritualized patterns of verbal or nonverbal behavior, or excessive resistance to change; (such as motoric rituals, insistence on same route or food, repetitive questioning or extreme distress at small changes).
3.     Highly restricted, fixated interests that are abnormal in intensity or focus; (such as strong attachment to or preoccupation with unusual objects, excessively circumscribed or perseverative interests).
4.     Hyper-or hypo-reactivity to sensory input or unusual interest in sensory aspects of environment; (such as apparent indifference to pain/heat/cold, adverse response to specific sounds or textures, excessive smelling or touching of objects, fascination with lights or spinning objects).

Symptoms of autism must be present in early childhood though they may not become fully manifest until social demands exceed limited capacities.  One does not become autistic as an adult though people may be diagnosed at any age.  For example, I was diagnosed at age 40.  I’d always known I was different, but I never knew why. 

To be diagnosed with autism, a person’s symptoms must materially limit and impair everyday functioning.

That is the “disability” side of autism.  What about the gifts?  Here are a few of them:

The social isolation and intense focus on topics of interest can lead autistic people to become extremely knowledgeable about areas of particular interest.  Ironically, that’s a sign of disability in children, but it can be the mark of a true expert in an adult. 

A kid who’s fixated on Harry Potter is disabled when he can’t do his schoolwork.  A scientist who lives for beetles and knows every single thing about them is a star.  In one case the fixation prevents doing what’s expected; in the latter example the fixation becomes a career.  One is a disability, the other is a gift.  The two examples may be the same person, at age ten and age forty.  You never know.

A significant number of autistic people have exceptional logical or mathematical abilities.  This may include calendar calculating, instinctive insight into complex math puzzles, and exceptional logical reasoning ability.

The affinity of many autistic people for computers, software, and video games is well known.  That fact that we may turn this into a career is not so widely recognized.  For many of us, the principal barrier to career success is limited social skill. 

The fact that we experience the world differently means we will approach problem solving in unique ways, when compared to the general population.  While we may be disadvantaged most of the time, our difference often allows us to see unique solutions that were totally invisible to our non-autistic peers.  Some say a touch of autism is essential for any brilliant scientist or engineer.

 Autistic people may have unusual musical abilities. That may include an extraordinary ability to discern differences between sounds, or to “dissect” a musical performance and listen to the individual instruments and voices.  Such an ability would be very valuable to a symphony conductor or recording engineer.

Autistic people may also have unusual talents playing instruments.  A search for musical prodigies will reveal many such people.

Here’s a simple way to sum up autistic talent:  The 99% of the population that isn’t autistic shared the standard brain wiring.  That means they will approach life and problem solving from a common perspective.  Autistic people – who see the world differently – will often be disadvantaged because we do not share that perspective.  However, when the common mindset does not lead to success an autistic person may have a unique advantage.  His ability to solve unusual problems may make him a star even if he is disabled elsewhere in his life.

As teachers, you will learn about autism when kids fail at something.  When confronted by failure it’s easy to become discouraged and imagine today’s autistic kids will never develop into independent successful adults.  Don’t fall into that trap.  It’s impossible to tell which five year old will grow up to be a star and which will be a bum.  The best thing you can do is to help your kids minimize their disabilities while building their strengths.  Never forget the potential power of Being Different. 

For another perspective read this essay on neurodiversity.  


millersrock said…
My fixation is communication,relation ,sensation,in a humanitarian global dedication,understanding,relation, so much the reality of today sedmz miniscule,and unworthy of my notice coupled by lack of devotion,people to person each with a unknowing jouney,I can only define it as Gods plan for me hoping to.escape society's punishment for irresponsibility. My faith he'll lead me unmistakably.. Amem Or maybe its The I with some kind of Autism?
Millersrock@ if the they care to advise this one with ? ugggism
The Incomer said…
I am not autistic but I feel some connection. Connections are my thing. One thousand thoughts like snowflakes land on my consciousness every day. I know how they connect but no one else can keep up. It can't be explained but I know. Most people are very simple and shut out life. I see too much and others can't cope with that. It scares them, I scare them and so we don't connect. Yet connection is my thing, I want to connect. So why can't I -that is the question.
Anonymous said…
I saw your episode of ingenious minds on the science channel. A lot of it resonated with me, but I'm obviously very different in many ways. I was looking for a way to contact you and I obviously didn't look very hard; but I saw this post and saw that I could leave a comment so here we are.

The one thing that struck me more than anything is what you said about looking people in the eyes. It's even in the title of your blog. Even when I try to look someone in the eyes, I'm not really doing it. I'm either looking past them, through them, or I'm concentrating on one eye at a time and I don't get what looking people in the eyes is suppose to mean.

My mother would be the best example of aspergers syndrome as you describe it. I used to be just as bad, but I became functional because I always managed to have jobs where I was forced to talk to people on the phone. When I'm in a social situation and I'm comfortable, however, I always have a knack for something the most perfectly offensive thing even though I never think or say these things in my day to day life. I don't usually have problems when I'm at work because my brain seems to realize and force me not to be inappropriate at these times.

Relationships are impossible as I really can't afford to let anyone see the man behind the curtain. It's like the person I portray to everyone else is an elaborate act that I just keep perpetuating. People have found it weird that if I ever need to get anything off my chest, I have to go to a keyboard and type it out instead of just talking to people. There is some level of disconnect between my brain and my tongue when it comes to matters of the heart.

One of the other things in the episode that struck me was how you said that you felt like things were in black and white and you would get angry when people would tell you that they were actually in color. This is kind of the way I feel about love. I know that I love my parents, my family and my couple of close friends, but that word itself doesn't have much meaning to me. I think more along the lines of I affection you, mom, because that is the closest thing that I can relate it to.

** I got caught by the character counter, you can see the full message at my wordpress blog site ***

Well, this has dragged out a whole lot longer than I wanted to. I will give you one of my email address if you wish to contact me ( I don't wish to reveal my name because I'm paranoid about this world that we live in. I'm not on facebook and I'm not on twitter because those are social networking sites and I don't feel like socializing. It feels good in a strange way when someone from 10 years ago sees me and tells me that they tried to find me but couldn't. If this is some form of the autism spectrum, then consider me autistic. I can portray to everyone else that I am living a normal life. I've been doing it since middle school. I was just struck by some of the similarities that I share with you and thought it might be interesting to pick your brain. I see that you have comment moderation turned on. This means that you don't have to post this comment. Contact me, don't contact if you too busy; I'm not going to feel badly if you don't. I'm just talking to the Internet right now. I have a hard time sleeping more than 4 hours straight and I needed to do something semi-constructive.

Have a good day and I hope you are recovering from your ordeal well.
Anonymous said…
This is by far the best description of autism I have read. I have bookmarked this page so I can return to it when I feel confused or disheartened by what is being said about my son. Thank you.
Unknown said…
I agree with the above commenter in that this is the best, most encompassing description of autism that I have ever read (or heard). I am a direct support professional, mainly with adults with intellectual disabilities, but a significant percentage of the people I support also have autism (or one of the things now encompassed in ASD). In the people with autism that I work with one tends to see more of the disability side of autism and less of the gift side, at least as far as what's apparent. I think that has made it very difficult for many of my coworkers (and myself) to even begin to understand how they experience day-to-day life and how to best support them. I devoured your book, "Look Me in the Eye"-- I cherish first-hand accounts from people with life experiences different from mine, and then as a DSP it truly is a gift to have that glimpse. Thank you for sharing your experiences, and your gifts.
Unknown said…
I am not an asperger's. I am French and I just read "Look me in the eye". I am 62 years old and have 10 grandchildren. I want to thank you for all your comments and experiences. I devoured the book. Knowing two children around me with asperger's I wanted to try to understand and everything became more clear to me. My heart goes out to you all.
Marianne Schneider
Ryan Lambert said…
You created a really, really good post. I love reading the words of someone that has a personal, internal experience with Autism Spectrum Disorder. The ABA therapy center that my wife and I set up in Austin, Texas is designed for younger children on the spectrum, many of whom are non-verbal when they join us. I want to understand them better - to have them have a way of sharing their thoughts, feelings, and experiences with us.

If you find yourself in Austin, please look us up. We'd love to learn from you. Our center is called Action Behavior Centers (Action Behavior Centers and is located in North Austin. We have a lunch room for the kids. One of our staff painted something I thought was really beautiful on the wall. It was a quote from Winnie the Pooh - "What makes me different is what makes me."
2rongz said…
I so much agree with your comment. My adult son is on the spectrum and after reading part of this amazing blog...I think I also am somewhere on the autism spectrum. I am buying 'Look me in the eye'. Really want to read this and the rest of this blog. J E is an amazing individual.

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