Monday, May 18, 2009

A Crash Course in Neurodiversity

I've been kind of taking it for granted that most people who seek out this blog know what the heck "neurodiversity" is. Lately, I've been thinking that is a faulty assumption on my part. Luckily, there are two very recent items I can point people two that can give folks a basic grasp of the concept of neurodiversity.

First, I want to point you to this week's edition of Newsweek, featuring my friend and colleague, Ari Ne'eman. Ari is a founder and president of the Autistic Self Advocacy Network (ASAN). Here is an excerpt from the article Erasing Autism by Claudia Kalb:
Ne'eman is officially studying political science at the University of Maryland, Baltimore County, but he also runs the Autistic Self-Advocacy Network, a nonprofit he founded in 2006, the year after he graduated from high school. The task he has taken on is daunting and controversial: he wants to change the way the world views autism. Autism is not a medical mystery that needs solving, he argues. It's a disability, yes, but it's also a different way of being, and "neurodiversity" should be accepted by society. Autistic people (he prefers this wording to "people with autism," a term many parents use, because he considers the condition intrinsic to a person's makeup) must be accommodated in the classroom and workplace and helped to live independently as adults—and he is pushing to make this happen for everyone on the spectrum. They should also be listened to. "We're having a nation-al conversation about autism without the voices of people who should be at the center of that conversation," he says.
Read the rest of the article. It's worth your time and effort.

Meanwhile, on another continent, my friend Kev Leitch has written a FAQ on Neurodiversity. Kev is a parent of a child with autism. Like many of my contacts in the autism community, we met through the shared experience of tragedy and outrage over the death of Katie McCarron. As Kev's disclaimer clearly states, there are other descriptions of neurodiversity and he doesn't mean this to be the last word. But it's a good place for beginners (and a good read for the rest of us, too).

Excerpt:

Proviso: I am not a spokesperson for any other person and/or group. The term ‘neurodiversity’ did not originate with me. What follows is my personal opinion and what I believe the concept of neurodiversity represents. I believe I voice opinions common to many in the neurodiversity group but I may well be wrong. Sometimes I refer to ‘we’ and sometimes ‘I’. When I refer to ‘we’ I think I am repeating the consensus of neurodiversitiy opinion but bear in mind I could well be wrong.

1) Neurodiversity proponents are anti-parent.

False. I’m a parent. I’m parent to 3 kids of whom two are NT and one is autistic. I’ve never felt anyone in the ‘neurodiversity crowd’ is anti me. Kathleen Seidel is a parent. Camille Clark is a parent. Anne Bevington is a parent.

2 comments:

sanda said...

I went to the links. The article on Ari was really good.

Question:does Neurodiversity only refer to people with autism?

Anecdote on "different wiring". My spouse had difficulty learning to read. Still has trouble. Got a PhD in science. As an artist, I observe. It seemed to me, he and I are "wired" differently, and more people are "wired" (brain)like me, than like him. The bias is towards people who were "wired" like me. In this society, I was
considered "gifted" when young. (As a disabled adult, with cognitive aspects to my illness,
CFS/ME, I have been observing my own brain work and recall reading how neurological testers of people with my disability, in the last decade, were so surprised that many had considered themselves intelligent, since on the IQ tests they were taking, after onset of CFS/ME, the scores were much lower.) And my spouse's work was in brain neurochemistry, but not in any way that related to my brain.

I can also relate to the genetic aspect in the article and Ari's response. I have allergic asthma and remember when there were articles on "should women abort pregnancies with genetic markers, should they be found, of family asthma". Having a family with obvious genetic linked asthma/allergy, I wasn't thrilled at the thought of not being born. I do want to point out, that the grandfather from whom I appear to have inherited my asthma from (who died young, long ago, from the disease) was an artist (brass craftsman, which no doubt helped hasten his end). My childhood asthma was mild and undiagnosed, went away, and didn't reappear until my mid-30s.

I had an odd exchange with a friend about asberger's a day or so ago. The friend was "diagnosing" someone (in his 90s) based on something that had been in the NYTimes. I pointed out that when I read symptoms of different things, I can see myself, often. I was being as subtle as I could.
I think that bodies/brains do a whole range of things, in terms of symptoms and bodies/brains can only do what they do. I suggested some things are on a continuum.

I remember interviews with Temple Bledsoe, the scientist, who has said she is autistic, asperbergers. Wrote books. As a very visual person, I was fascinated by her description of how she thinks in pictures, not words. I think mostly in pictures/images, as does my brother.

Stephen Drake said...

sanda,

The term "neurodiversity" was coined to be inclusive of a wide range of cognitive/neurological styles present in people and considered "abnormal." The term and concept offers an alternate way of viewing the wide range of neurological styles to be found in humankind. --Stephen