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Paul Collins's bookPhoto by Sharyn Morrow/Flickr, cc 2.0

The Centers for Disease Control report that 1 in 110 children in the U.S. is now diagnosed somewhere on the spectrum of autism. In other words, this is a condition that affects many lives, many families.

General reporting and publicized controversies tend to focus on the physiology and neurology of autism, or on possible causes and cures. As I’ve followed such stories, I’ve longed to understand something about the inner world of people with autism and those who love them. I’ve wanted to hear about autism in terms of spirit, intellect, and human nature. And when I discovered Paul Collins’ warm and erudite book Not Even Wrong: A Father’s Journey into the Lost History of Autism, I knew I’d found a way in.

During a routine checkup, his beloved son Morgan was diagnosed with autism at the age of two and a half. Paul then went searching for understanding in history and literature. He traced the winding process by which 20th-century physicians finally diagnosed autism after centuries in which it was conflated with very different conditions, such as schizophrenia and Down syndrome. He had previously written about eccentric characters and forgotten inventors in history, and he began to find evidence of autism in some of these figures who had already captured his attention. In his travels, he also experienced how the spectrum of autism quietly reaches into centers of contemporary invention — such as Microsoft.

Some of our programs feel like an “experience” in the making. This one did. Paul Collins and Jennifer Elder have opened my imagination about what it means to be human, as well as what it means to be autistic, without for a moment downplaying the debilitation that life with autism also entails. I had imagined this condition to be thoroughly isolating and inscrutable.

The very word “autism” comes from the Greek for “self” — autos — connoting a state of being in which a person seems quite literally to live in his or her own world. And yet Paul and Jennifer help me grasp that autism is not one thing but a spectrum on the vast continuum of human personality. Autism has deepened their understanding of disability and of intelligence, curiosity, and accomplishment.

Most thought-provoking of all, perhaps, are their stories of how life with Morgan has imparted a new generosity and respectful good humor to their dealings with each other and their families of origin. There is a documented correlation between autism and families with achievement in fields like engineering, music, mathematics, science — professions that require an aptitude for logic and a capacity for intense, solitary focus. You can read a beautiful essay by the late scientist Stephen Jay Gould about his son with autism.

Paul writes this:

“Autists are described by others — and by themselves — as aliens among humans. But there’s an irony to this, for precisely the opposite is true. They are us, and to understand them is to begin to understand what it means to be human. Think of it: a disability is usually defined in terms of what is missing. But autism is as much about what is abundant as what is missing, an overexpression of the very traits that make our species unique. Other animals are social, but only humans are capable of abstract logic. The autistic outhuman the humans, and we can scarcely recognize the result.”

There is more in this hour of radio than I can evoke in these paragraphs. And if you enjoy it, I’d encourage you to listen to my original, unedited two-hour conversation with Jennifer Elder and Paul Collins. It is full of illumination and warmth, and I didn’t want it to end.


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7 Comments

While I understand the usefulness of labels such as autism, I am grateful that we have finally gotten to a place where we are speaking of a “spectrum” of autism. I suspect that, in time, we may come to understand/accept all of humanity itself as a spectrum, and not have to use labels at all. This is what I love about the characters of Spock and Data. . .they bring to the fore the question, “What is it to be human?” They help demonstrate that humans are individuals, each giving expression to their humanity in different ways which, if we could accept, would be a giant step forward. Rather than a planet of forced/attempted sameness, we would finally welcome everyone and be that much richer for it. 

Wonderful quote in your second-to-last paragraph. 

I would also direct readers' attention to poet Ed Byrne and his wife Pam, each of whom writes about their son Alex.
http://edwardbyrnepoetry.blogs...
http://pambyrne.blogspot.com/

As a parent of a child (boy, 6 years old) with autism, I understand the desire to get rid of the labels and learn to treat our children, and everyone in our society, as human beings with important and unique things to offer.  However, I also recognize that my son has some very significant developmental delays that may make it nearly impossible to look after himself when he becomes an adult.  Having the label "autism"--however much it may be misused and abused by a small minority--allows us to learn from and connect with other families in similar situations, to get information on how best to help our son, and to learn about what his particular needs might be from those who may have helpful insights and experience.

Justin
Portland, OR
www.autietots.com (website for special-needs friendly local businesses)

 this is a plug for the autietots website...the family who runs it also has a six year old with autism, not sure if it is the same, but i am guessing it is.
if you could direct me to the scientific research on developmental markers...
who designs these markers?
from personal experience...i can imagine myself being labeled as a small child, i had a lot of these so-called symptoms...i now see that i was an intelligent and precocious child, and i have not only been very successful at looking out for myself, but i see that children's development is so varied and profoundly complex that i am forced to question the motivation behind these labels.
some children's bodies prioritize the development of different skills at different ages...(this is anecdotal, but it seems an appropriate source of skepticism)
i predict that many of these children are going to grow up, find their way out of this stigmatizing mess and rebel against this non-science.
there are many educators who have a profoundly different take on conformity, on the education of boys, on class size and educational dysfunction.
autism is a theory, and a poorly formed one at that.  demand the science!

sorry to go off topic somewhat but I wonder what the orchestra music was that punctuated this story from time to time. 

In retrospect, I have to strongly suspect that my father was on the autism spectrum. He was extremely logical and private, loved music, had ferocious powers of concentration, and seemed utterly baffled by everyday human relations. He was very often angry and frustrated and completely misunderstood his wife and children. He did seem to exist in his own world and seemed incapable of recognizing the separate inner worlds, motivations, and needs of others. Some amazing strengths but also some glaring weaknesses.

In particular, he was deaf to differences in tone of voice. To compensate, I believe he systematically studied human behavior in film, plays and literature, trying to understand intellectually what did not come naturally.

I also suspect that his condition left him vulnerable to abuse, and that he likely had been traumatised by such abuse at some point in his life. 

I wonder if there are any support groups for children of autistic spectrum parents.