Tuesday, June 17, 2008

Neurodiversity

I have been loosely following a debate between Autism experts and neurodiversity proponents. Essentially, the autism experts want to "cure autism" and rid the world of this disorder and its consequences while the neurodiversity proponents want to "celebrate atypical brain function as a positive identity, not a disability" (Solomon, 2008).

Education Week reporter, Christina Samuels, asked this question from an educator's perspective in her On Special Education blog:

What would that mean for educators, I wonder? "Anti-cure doesn't mean anti-progress," said one of the leaders of this movement, Ari Ne'eman. And a mother quoted in the story says that some of the treatments her son has undergone are a waste of time, and she'd like to see better services for him.

But Thomas Insel, director of the National Institute of Mental Health, cautions against "romanticizing" and "trivializing" mental disorders. Children with autism are not merely shy loners, he says.

I think we can all get behind the idea of treating a child as something more than a bundle of defects that must be fixed. Is the idea of neurodiversity and groups like the Autistic Self Advocacy Network moving too far in a direction that leads away from appropriate treatment?


I don't usually take sides on these kinds of things, but here is my response:

"I think we can all get behind the idea of treating a child as something more than a bundle of defects that must be fixed."

Thank you. I agree wholeheartedly that I and children like me, are much more than the sum of our parts - and those parts are not deficient. Autism affects my personality but it is not a defect.

"Is the idea of neurodiversity and groups like the Autistic Self Advocacy Network moving too far in a direction that leads away from appropriate treatment?"

However, this question offends me. Neurodiversity isn't simply an idea or a proposed policy - it is an actual reflection of life as it is. Human beings ARE diverse. Physical differences, mental differences, emotional differences exist and play out in myriad ways. Neurodiversity is simply another manifestation of the human condition.

There is no appropriate discussion to be had on whether groups such as the Autism Self Advocacy Network are moving in the "right" direction. Self-advocacy is, by definition, defined by those who are advocating on their own behalf. No one outside the group has standing to determine what group members feel is important to advocate. As a member of the target class, I can tell you that advocating for acceptance of who I am, as I am, is incredibly important just as it is in any civil rights struggle.

My bias in this discussion is that I am a 12 year-old kid with Asperger's/autism. I am considered "highly functioning" and a gifted learner but I do struggle with functioning in society and social situations. I failed dismally in public education. Or rather, public education failed me.

I experienced little acceptance and no respect from the educators I encountered in public school. The emphasis in all of the IEPs, behavior modifications plans, and treatments ever written on my behalf were to make me and my behavior "normal". It was more important that I appear like everyone else than it was to help me understand social conventions and determine whether I needed/wanted to conform in any specific instance. Adults are generally given the opportunity to choose from among numerous avenues of acceptable behavior within society, but children are not. Children identified as special needs have even fewer options - their only goals are defined in terms of how well they meet norms, rather than how well they develop, grow, learn and expand as individuals.

I empathize with parents whose children cannot interact or function as a result of autism or other disorder. However, respect for differences and diversity not only offers a starting place for those children to grow, live, and thrive - it also opens up a whole new realm of possibilities for achievements and accomplishments that would not be possible for a neurotypical child.

"Appropriate treatment" is not possible unless and until educators adopt a policy of unfailing respect for the individual. Progress is more important than a cure. Acceptance of difference is more important than achieving normalcy. Tolerance is not good enough because it demands change or at least movement toward an external norm.

I deserve acceptance and respect as I am.


Stephen


TrackBacks:

http://blogs.edweek.org/edweek/speced/2008/06/neurodiversity.html
http://abcnews.go.com/GMA/OnCall/story?id=5033594&page=1
http://nymag.com/news/features/47225/

2 comments:

G said...

Stephen: I am so proud of you! I love you just as you are and always
have. I've always felt a special bond with you!
I posted my blog, or think I did! I hope you get lots of responses on
this. I would even like to see you send it directly to some of the names
you mentioned! Keep on Keeping on! Love you G

Anonymous said...

Just came across this wonderfully well-put piece of writing by Stephen. How he expressed his beliefs and feelings about nuerodiversity and his and others rights to be individuals should be a simple concept but I feel and I fear that this concept is over many adults heads. Truth in its' simplest form is often hard to convey. That Stephen who is 12 years old was able to do it best does not surprise me. However, because age in our society is allowed to wrongly determine the amount of respect and credence as well as choices a person is given, being on the spectrum and young is be doubly tough. (I know it is for my 11 year old son.)

I loved that Stephen appeals to what should be our common sense of fairness. That doing more than allowing, but supporting every person (no matter what age or nuerotype) in all our differences is key to giving people the respect they deserve and need to thrive. All people deserve choice and respect no matter what kind of mind they have. This is a simple fact that may need people like Stephen to teach us.