Sunday, November 22, 2009

Autism Speaks' Bob Wright Speaks Autism Truths

"The protesters are lucky. They're well off enough, healthy enough, to do it. I wish my grandson were able to join them."

Bob Wright, New York Post, November 19, 2009

Bob Wright of Autism Speaks has called out the handful of protesters, barely autistic members or followers of the Autism Spectrum Self Advocacy Network, who made yet another attention grab by protesting a celebrity benefit held to raise funds and awareness for autism disorders. Autism Speaks has critics from various points in the world of autism but its events are attended by thousands of participants while ASAN is lucky to haul an even dozen away from the comfort of their keyboards.

These very high functioning, self identified, autism "spectrum" dwellers don't appreciate how lucky they are and go all out to disrupt efforts to help all persons on the autism spectrum including the low functioning, severely autistic children and adults who actually need the help. Self advocacy? Far from it.

ASAN is an oppressive group. Its barely autistic leaders identify with the "autism spectrum" concept and want to promote a view of autism which supports their own self image. To that end they suppress any portrayal of the negative realities that afflict those with severe, low functioning autism disorders.

ASAN protesters advocate against the rights and interests of the severely autistic, those who would have been diagnosed as autistic BEFORE the expansion of the diagnostic definitions of autism disorders in 1993-4. They seek to prevent research that could lead to treatment or cure of autism disorders. They, the very high functioning barely autistic, do not need treatment to attend university, establish corporate organizations, meet with high level politicians, write lengthy essays and of course, pose for photo ops and interviews with high profile, but autism ignorant, mainstream media publications like the New Yorker, the NY Times, Newsweek and the CBC.

ASAN does not want research to be conducted that could help cure those autistic persons, including children, who suffer from severe self injury, lack understanding of language, wander off into dangerous traffic, drown in neighborhood pools or live their lives in institutional care after their parents can no longer care for them.

Like Bob Wright I wish my son was able to join them in their protests. I wish my son was able to understand why they feel that their self identification with the word "autism" is so important that they are entitled, under the pretense of "autism spectrum" self advocacy, to suppress his rights and interests.

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Anonymous said...

I am extremely excited to hear of a new treatment for MS which looks at the vascular issues associated with the disease. I hope that they will soon look at autism the same way - with a new perspective. Possibly it is the vascular blood flow that is creating the inflammation and toxins in the brain with the build up of iron that is causing the dysfuntions we see in autism. MS and autism are similar in many ways; they create Virchow robbins spaces, they are thought of as autoimmune diseases, NS has the highest rate of MS and autism in all of Canada. The doctors have to look outside the box instead of focusing all the time and money on genes they may never find.

Stephanie said...

I, too, wish that the more severely affected could all be high-functioning.

Some severely affected as children end up becoming high-functioning and some remain low-functioning, although we obviously don't know why.

This is why any and all research is needed that is specific to those with LFA, the ones most deserving of help.