Saturday, January 14, 2012

2011 Autism Progress or Back to the Future?

Was there any progress in addressing autism disorder issues in 2011?  In the humble opinion of this father of a severely autistic 16 year old there was very slight progress on the research front, very slight, and that progress was more than offset by the regression on other fronts particularly in the area of autism awareness.  

The hard core reality is that in the six years since I began this blog and in the nearly 14 years since my son was diagnosed with autistic disorder no substantial progress has been made towards curing, treating or even understanding autism disorders.  The displacement of the original more severely autistic population with very close links to intellectual disability by Aspergers diagnosed, in some cases self diagnosed, persons with very little, if any impairment in daily life functioning has confused the public, confounded autism research and taken the pressure off of autism service providers.  

The severely autistic are still under represented in autism research which now searches Korea and the rest of the world for those who are so high functioning that they are not even noticed as having a disorder in highly structured, organized societies. Those who are barely autistic, if at all, still purport to speak on behalf of those on the spectrum who are severely affected by autism. Governments feel less and less pressure to provide services for those who most need them because autism has become autism fluffy and lite in the New York Times and other influential mainstream media outlets.  

The original severely autistic remained invisible in 2011 and with the DSM5 removal of the intellectually disabled from the autism spectrum will be forgotten completely.  Hidden out of sight in institutions, they are now out of the public mind completely which instead sees highly intelligent, highly functional "geek" populations,  as representative of autism.  Autism has become autism lite and fluffy. Autism dark and heavy remains hidden and forgotten.

For those seeking treatments and cures for autism, for the original, invisible, severely autistic population in 2011 it was just another year like those before,  just more back to the future. 


Jean Nicol said...

Harold, I so admire your continued efforts to change this situation. You can't give up as it is your son's future and that of all others with "autism". I don't have a child with autism but as an advocate would love to be able to do something to support your efforts for the many I know with autism. What more can we do?

Wouldn't it be enlightening if everyone with Asperger Syndrome could live with sa person with severe autism. Spend enough time with them to be able to truly understand, accept and support those with autism.

Bullet said...

"Wouldn't it be enlightening if everyone with Asperger Syndrome could live with sa person with severe autism"

I do.

usethebrainsgodgiveyou said...

SFARI is an autism consortium that surely gives the shivers to autism speaks. They have given over 200 million dollars to 150 researchers since 2007.

Your voice is needed here.

This confuses me...I can't begin to tell what they are trying to say in the article. Also, it seems PDD-nos is part of the deal now. Shoot...I thought my son would no longer be included. They've thwarted his chance for a somewhat normal life.

Cameron said...

Labels are unimportant to me. My girls will not be hidden away. Although their autism prevents us as a family from doing most "normal" things now. I will work my already nubby fingers to the bone to include them in this "society" and I will take advantage of it at every turn to give them what most take for granted.Thanks Howard.

Low Budget Dave said...

I think you made an excellent point here.

People are so anxious for happy news that the media (and even our friends) focus on the success stories and ignore all the "not-really-a-success" stories.

I am adding your blog to my list of frequent reads.