April is Autism Awareness Month.
I became more aware of autism myself recently when someone close to me was diagnosed with Asperger Syndrome, a form of high functioning autism.
Asperger advocates compile a running list of famous people from they past they identify as having had Asperger symptoms. If you or someone close to you was diagnosed recently this should cheer you up.
People with Asperger Syndrome also have a nickname for themselves — Aspies. Sounds more like an award than a diagnosis. (Yes, I have an Emmy, two Tony’s and an Aspie.)
A lot of people think there is an autism epidemic in this country. Some blame vaccines. They’re wrong on the cause, but they may also be wrong on the epidemic part.
Fact is until recently psychologists — especially child psychologists — were not looking hard for autism. The Asperger diagnosis itself dates just from 1981. Hans Asperger himself published his first definition of the syndrome in 1944.
A big part of Asperger’s own work lay in seeing the good side of the syndrome. Among his patients was Elfriede Jelinek, who later won the Nobel Prize for literature in 2004.
What has developed since 1981 is a spectrum of symptomologies, ranging from severe autism to moderate autism, through Asperger Syndrome, to ADHD, and people can find themselves anywhere on the spectrum.
Aspects of conditions like Obsessive Compulsive Disorder (OCD), exhibited by actor Tony Shalhoub in his long-running series Monk, can also fall inside the new definitions. You can have both OCD and ADHD. You can also be an Aspie and and not be brilliant.
All this combines into an epidemic of “discovery” among school-age children. Kids diagnosed with any disability — ADHD, dyslexia, Asperger — are covered under the IDEA Act. This encourages parents to demand an evaluation, public or private, in order to gain accommodation for kids who need it.
Once you’re an adult your condition is covered by the Americans with Disabilities Act. This can prove a shock to parents. Their newly-diagnosed 18-year old darling has to be his or her own advocate, and colleges don’t have to accommodate themselves to these kids in the same way.
If you were diagnosed with ADHD as a kid, as I was, it’s possible one of your children now might be given an Asperger diagnosis. It’s not the end of the world, and it’s not that they’re so terribly different from you. It’s just a filling-out of a behavioral continuum, scientific evolution in action.
There is good news here. Aspects of autism are gradually being de-stigmatized, much as ADHD itself was a decade ago, and people with these conditions are starting to advocate for themselves.
One great place to see this in action is at Wrongplanet.net. It’s a Slashdot for Aspies launched in 2004 by Alex Plank (above), then a teenager but now a college student and advocate for the idea that you can live within the autism spectrum.
(The name Wrongplanet comes from the idea that people with Asperger Syndrome often feel they’re living on the wrong planet. They feel normal, and wonder what everyone’s trouble is.)
I have personally concluded that if this is an epidemic, it’s a good kind.
It’s an epidemic of discovery, of finding that people aren’t so easily placed into categories, of people with formerly disabling diagnoses advocating for themselves, and of parents becoming involved in loving troubled kids more deeply.
It’s an epidemic of awareness. Care to join?