Thursday, June 12, 2008

Autism pride

A recent ABC news story showcases the Autism Self Advocacy Network:

...[A] non-profit group aimed at advancing autism culture and advocating for "neurodiverse" individuals.

Their message, according to ABC:

Stop the search for a cure and begin celebrating autistic people for their differences.

In the words of founder Ari Ne'eman, a 20-year-old man with Asperger's Syndrome:

We believe that the autism spectrum and those on it, are important and necessary parts of the wide diversity present in human genetics.

The Autism Self Advocacy Network increasingly includes parents, like Kristina Chew, mother of a severely autistic boy named Charlie.  Quoting ABC:

  Chew now believes that autism treatments and so-called cures are a waste of time. She said she'd rather see Charlie, now 11, benefit from better support services and education.

In Chew's own words:

My son is who he is. He's not going to change; he's always going to be Charlie. And at the same time, I loved him just for what he was.

But isn't autism a severe disability?  To this, Ne'eman retorts:

Where does disability come from? It comes, in many respects, from a society that doesn't provide for an education system that meets our needs. From people who often discriminate or bully or even injure us, and from a society that is largely intolerant.

OILF's assessment:

1. Autism is an extremely heterogeneous disorder.  Those most able to speak out and self-advocate represent only a tiny portion of the spectrum.

2. In particular, such people cannot represent the interests of those with more severe autism, or the concerns of their parents.

3. Many parents do spend too much time pursuing fruitless "miracle cures."

4. Some are too quick to give up on more promising treatments like education.

5. Except that, as Ne'eman notes, and I've argued here, here, here, here, and here, we have an education system that decreasingly meets the needs of those on the autistic spectrum.

6. Which, in turn, exemplifies how society discriminates, in particular, against those at the milder end of the spectrum, via bullying by peers, excessive labeling and medication by professionals, and marginalization of their analytical and calculation skills in math and science by so-called education experts.

The Autism Self Advocacy Group should steer clear of those for whom they cannot speak, and focus its efforts on points 5 and 6.

1 comment:

Catherine Johnson said...

Temple (Grandin's) take on this is similar to yours; she says the goal of treatment for severely autistic kids & adults should be to become high functioning adults.

She's not authoritarian about it; she's not remotely against somebody finding a cure, and probably supports somebody finding or developing a cure.

But she thinks something vital would be lost if autism genes were to disappear.

I agree.