Autism Wars - What is Autism? Is it on the Rise? (part two)

One of the most compelling and ferocious battles in the autism arena is... what is autism, anyway?

Back before the early 1990's, "autism" was a rare disorder characterized by specific and profound developmental challenges and behaviors.  Then, everything changed. 

The diagnostic criteria expanded to describe an "autism spectrum," including a new diagnosis called "Asperger syndrome," along with several clearly defined pervasive developmental disorders called Fragile X and Rett Syndrome.

Now, ASDs (autism spectrum disorders) could be mild or profound.  Symptoms could run the gamut from social awkwardness to extreme aggression and severe mental retardation.  Wired magazine, during the 1990's, dubbed Asperger syndrome the "Geek Syndrome," and suggested that many of Silicon Valley's best and brightest were, in fact, diagnosable on the autism spectrum.

In addition, another new diagnostic catch-all category was created: Pervasive Developmental Disorder Not Otherwise Specified (PDD-NOS).  PDD-NOS includes children (and adults) who meet some but not all of the criteria for other autism spectrum disorders - and includes both milder and more severe developmental disabilities and delays.

At the same time, in the US, a new law called the IDEA (Individuals with Disabilities Education Act) opened up the possibility of new services for children with disabilities.  A new "autism" category was created for record-keeping purposes by the Department of Education.

All these changes meant, among other things -

"Autism" (now called the "autism spectrum") now embraced many, many more people than ever before - because the definition of "autism" had changed dramatically;

Numbers of schoolchildren diagnosed with autism spectrum disorder rose exponentially, in part because they had never been counted as a unique group before;

Doctors and medical professionals were diagnosing children with autism spectrum disorders who might earlier have received no diagnosis other than "slow development" - and certainly some children who would have received ADHD, MR, or "emotionally disturbed" labels were now receiving labels on the autism spectrum.

Today, there are fierce battles over the question of just how to define autism.  Some see autism as embracing an enormous spectrum - and suggest that Einstein, Mozart, and other luminaries were (and are) autistic.  Others think of autism as encompassing only the disorder described prior to 1992.   These battles usually wind up comparing apples and oranges: "how can an adult with a job, a wife, and a graduate degree claim to speak for my non-verbal 12 year old with profound developmental delays?"   This is, in my  opinion, a reasonable question - though those who DO speak for the entire autism community would disagree.

Meanwhile, the question of whether or not autism is truly on the rise is still - amazingly - open.

There's no doubt that the numbers of children DIAGNOSED with an ASD (autism spectrum disorder) have risen dramatically over the past decade.  But what does that really mean?  ARE there in fact more children with autism than ever before?  Or are there merely more children DIAGNOSED with an ASD?  The changes in diagnostic criteria, educational policies and record-keeping described above really do create a big question mark - and competing studies in the US and the UK variously suggest that there has or has not been a real increase in the number of people with ASDs.

A study in California attempted to compare the number of children with "classic" autism over time, and came to the conclusion that there are really more.  A study in the UK looked at adults who had been diagnosed, as children, with speech delays and other similar issues and found that their symptoms would, today, have provided them with an ASD diagnosis - suggesting that the diagnosis, and not the symptoms, have changed over time.

How can we discover whether there's a "real" increase in autism? The answer is - we probably can't.  Autism is defined by symptoms, not medical tests.  And even those symptoms (lack of eye contact, idiosyncratic play, late speech) may or may not be considered pathological by individual cultures or families.

In the next year or two, changes to the diagnostic criteria may change the way we describe, think about, and measure autism spectrum disorders.  Meanwhile, we continue to battle.  Will diagnostic changes help?  Hard to know, but I suspect they'll just add a few more logs to the fire.

Source: Examiner