Thursday, March 20, 2008

The Last of My Autistic Allie Series...For Now

The following post is the final post for now from my series called "Journey of an Aspiring Allie." If you have just started reading, I hope you will go back and read the series in order. The first post of the series was on 1/27. The series is in the form of a guided video tour. It's just the way MY mind works.

I do also hope you will watch the videos exactly as posted in the text, as a break before reading further. I had attempted to learn to imbed videos in my posts but was unable to do so. Like recent posts in this series, this post contains a number of videos of varying lengths. I will wait a week or so to post again so that I can give folks time to get through all this.

I suspect that you may find it possible to get through this post only in parts, depending on how much time you have available to you at any given moment. __________________________________________________________

So this is the deal:

This matters.

This post is about the difference that how we view and respond to neurological diversity makes.

There is a school in MA, the state where I am now living, that practices among other abuses, electric shock behavioral management on those children with "mental retardation," "autism," and other related "issues."

What types of behaviors are being managed in this fashion? The "worst of the worst?" If you don't have time to watch the whole video that follows, watch the first 2 minutes and fifty five seconds, so you get the context of what the video is talking about, and then the last part of the video, 8:20-9:59.

We're talking about electric shock for hand flapping, as an example. Yes, that is right. Shocking children when they flap their hands as they speak. The video clip at the end is directly from the school itself.

Even non-autistic people occasionally flap their hands. Remember this video, featuring Bill Gates? Do we or do we not live in the 21st century?!

This is not an issue that can be isolated, however, to the abuses of just one school, an issue affecting a minority of children and individuals. This is a part of an ongoing but historic disregard for the humanity of individuals who do not conform to the "norm" and/or individuals with "disabilities."

The following is a video on the work of a man named Ivaar Lovaas. His story is one of a historical nature, but it continues to play out in our current times. Ivaar Lovaas pioneered an autism "treatment protocol," known as Applied Behavioral Analysis (ABA), that is still widely used and-- despite many controversies- very much considered "mainstream."

The breadth and scope of impact from this disregard for humanity can not be covered even in a series of posts. But what I can do is at least indicate the severity of the matter. This is where the pieces start to come together in a big way. Check out the following written tribute, largely highlighting DAN (Defeat Autism Now) from a magazine for which I have deep respect and for which I have even spent four or five years of my life volunteering. Note the connection between ABA and DAN:

I respectfully disagree with a great deal of the stuff written in that tribute.

On rare but significant occasion, children have died because of DAN-recommended treatment protocols (take chelation...a response to concerns that heavy metals in vaccines were causing autism). Children have been subjected to scientifically unsound or experimental and very stressful treatments (take, for example, medicinal regimens involving countless injected and oral supplements and medication...some children taking 40, 50, even 6o medications and supplements daily...along with all the side effects. Or, as another example, take hyperbaric oxygen chambers).

When I can stop crying long enough, I can sometimes laugh at the absurdity:

After all this, one has to return to the question, just what is it we are trying to defeat, anyway? Far from a turn toward reason, this question leads straight to some of the most dark and frightening aspects of the entire conversation. The following video is a marketing tool for an organization called "Autism Speaks," which contrary to its name, is not the voice of autistics speaking out in any form (if you want to know why I say that, see: and and Otherwise, proceed to the video posted below).

Last I heard, unlike the largest Down Syndrome organization in the United States, Autism Speaks (which is the largest autism organization in the United States), does not allow autistic adults to serve on its board or participate in its organization in any meaningful way other than to present to the outside world a negative view of their condition.

Now watch this. It is, at least, the voice of one autistic adult:

And think about this (image...not a video):

But worse, while this video is a powerful marketing tool for Autism Speaks, it is devastation rhetoric (to which young people as well as parents of newly diagnosed children are especially vulnerable). It contributes to the pervasive negative societal images of autistics. It contributes to those conditions in our culture that create bullying and other peer-to-peer abuse for autistics. And within days after it came out, at least one autistic child was killed by her mother, possibly after viewing the video.

Autism is not a "painful disease" as it is characterized in this film. It is a condition that makes some neurotypical folks uncomfortable, but it also represents another way of being in this world. It is wonderful there are so many diverse ways we can be present in our bodies and in our environments. What are we so afraid of? Handflapping? Seriously?!

I ask again, what is it we are trying to defeat?

Am I anti-cure? I don't know. But I do know that it matters how we view autism. It matters for all of us.

No comments: