Destroying the Peg

Expanding or Limiting the Definition of Autism Could Be Harmful to Children

Health officials at the Centers for Disease Control (CDC) announced last week that the rate of U.S. cases of autism had risen again to about one in every eighty-eight children.   This represents a doubling of the figure in just five years.  The CDC credited wider screening and better diagnosis for the rise.

Conventional wisdom runs that most of the new diagnoses come from the milder end of the autism spectrum – kids who, in the past, would have been assigned learning disabilities or written off as anti-social nerds and geeks.  Others, such as Columbia University Sociology Professor Gil Eyal, believe a significant number of new diagnoses come from the more extreme end of the spectrum as well.    His 2009 research found the rise in autism cases coincided with a drop in the number of diagnosed cases of mental retardation.

Up to now, the diagnosis of autism

has been blurry.  That may be about

to change.

A more inclusive definition of autism confirms some trends and defies others when crunching numbers.  Autism remains five times as likely in boys as girls.  However, an increasingly large proportion of children with autism have IQs of 85 or higher, contradicting a past assumption that most autistic kids have IQs of 70 or lower.  A study by the State University of New York Upstate Medical University, entitled Macroeconomic Environment During Infancy as a Possible Risk Factor for Adolescent Behavioral Problems, found that mothers of autistic children are fifty-six percent more likely to be under the poverty line.

Yet the widespread acceptance of autism as a spectrum disorder may be the biggest breakthrough of all.  Some applaud the new inclusivity for allowing earlier diagnosis that has led an explosion in treatments and services for at-risk children.  Others criticize including milder forms of disorders, such as Asperger’s’ Syndrome, in the spectrum, arguing this tends to trivialize very serious conditions suffered by other children.

Diagnosis of autism has long been controversial because, up until now, it was simply a subjective evaluation, based on observation of social awkwardness, fixated interests, and/or repetitive behaviors.  There is no specific test for autism because its physical causes (if any) are unknown.  That may be about to change.

A study just published in the New England Journal of Medicine by researchers at the University of California, San Diego finds autism begins during pregnancy with subtle disruption of the brain's frontal and temporal cortex.   It identifies a mechanism of abnormal gene activity causing overgrowth in the brains of autistic children that disappears by adulthood but leaves lingering effects.

The study builds on the findings of other research published by UCSD just last year.  That research found twenty-three percent of autism cases are linked to a specific combination of antibodies in the mother's blood. Women with the antibodies are ninety-nine percent likely to give birth to a child with autism.

Other experts may be busy attempting to limit the new inclusivity in autism diagnosis.  In January 2012, Dr. Fred Volkmar, Director of the Yale Child Study Center, told the New York Times a new definitions of autism  was about to come from the American Psychiatric Association that would nip the recent autism surge “in the bud.”

Such pruning would be just fine with Sociologist Frank Furedi, formerly a professor at the University of Kent in Canterbury and the author of many books, including Wasted – Why Education Isn't Educating.  Furedi contends in The Telegraph that many parents – sometime subconsciously and sometimes deliberately – are using autism as dispensation for poor performance from their children as a result of normal hardships.  He largely dismisses the autism surge as an invention of convenience.  “It is unlikely to be a genuine unprecedented increase in autism, rather an institutional use of this condition to allow people to get easier access to resources.”

It is easy to demonize Furedi as callous but he may be making a useful point.   Temple Grandin, possibly this country’s most high-profile autistic person following a widely-viewed HBO biography, notes that while an autism diagnosis might help the parents of at-risk children feel more supported and less alone, the children themselves are not necessarily helped by the new emphasis so many are placing on autism.  She frets in Salon magazine, “Now kids are getting fixated on their autism instead of [other interests].  I’d rather get them to fixate on that something that could give them a career.”

Grandin contends that many of history’s most famous thinkers and doers probably fall somewhere on the autism spectrum.  She once mischievously described society without autistics as “A bunch of people standing around in a cave, chatting and socializing and not getting anything done.”

Fellow autistic, writer Paul Collins, author of Not Even Wrong – Adventures in Autism, sums up what is at stake even more cogently.  “Autistics are the ultimate square pegs, and the problem with pounding a square peg into a round hole is not that the hammering is hard work.  It's that you're destroying the peg.”

Right now, a lot of very smarts people are hammering away at the autism spectrum.  Some are trying to smash it flat, elongating it to the greatest extent possible.  Others are banging at the ends, trying to compress it back into a more manageable length.  What all those bright minds are missing are the people in the middle, also with some bright minds of their own.  Less important than their numbers or the degree of their differences is that fact that they are simply different from the rest of us and not deficient.