The lived experience of autism

As a pediatric intensivist, autism, and autistic children, are not in my field of expertise. But I do care for a large number of children with brain problems, and the research on autism has always interested me. Anyone who pays attention to the condition knows there is a great deal of controversy about autism, particularly its causes and treatments. One major controversy is if the true incidence of the condition is increasing, or if the increase in diagnosis is the result of increased awareness of the condition.

Current estimates from the Centers for Disease control are that 1-2% of all children show some evidence of autistic behavior. The standard reference for mental health disorders, the Diagnostic and Statistical Manual of Mental Disorders (the DSM, currently in its fourth version with the fifth to come out soon) defines those behaviors in this way:

  • Impairment in social interaction
  • Impairment in social communication
  • Restricted, repetitive, and stereotyped patterns of behavior, interests, and activities

That’s a pretty broad definition, one that uses terms that are inherently subjective. And 1-2% of children is a lot of children. To a non-expert like me, it makes we wonder how many of those children overlap what we would otherwise call versions of normal. Still, many autistic children clearly have severe problems interacting with the rest of us in ways that make their lives, and those of their families difficult.

Temple Grandin, a professor at Colorado State University, has long been a leading voice in understanding autism. She is autistic herself, and her descriptions about how she regards the rest of us, whom she terms “neurotypical” are fascinating. She was featured nearly two decades ago in neurologist Oliver Sack‘s book, An Anthropologist on Mars. Doctor Grandin has her own excellent website about autism here.

She has now published a fascinating new book about what it is like to be autistic: The Autistic Brain: Thinking Across the Spectrum. If you want to get a good sense of what the book is about you should read Jerome Groopman’s insightful recent review of it in the New York Review of Books here.

Professor Grandin points out many of the inconsistencies and false trails autism researchers have followed in their quest to figure out what is “wrong” with the “autistic brain.” I like her term “neurotypical” for non-autistic persons, since it implies “non-neurotypical” for persons like her. In her words:

What a neurotypical person feels when someone won’t make eye contact might be what a person with autism feels when someone does make eye contact…. For a person with autism who is trying to navigate a social situation, welcoming cues from a neurotypical might be interpreted as aversive cues. Up is down, and down is up.

Groopman’s conclusion:

The Autistic Brain convincingly speaks to a nuanced understanding of people with autism, and the imperative of situating each person in as productive an environment as possible.

For anyone interested in autism, and that should include most of us, I highly recommend taking a look at least at the review.


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