ASAN does NOT represent the autism "community".
At best it represents some persons with High Functioning Autism and Aspergers who view autism disorders not as medical disorders but as a social club for persons at the high functioning end of the spectrum and those people without autism spectrum disorders who, for whatever reason, like to self identify as autistic. It is not even clear if ASAN is referring to autism spectrum diagnoses when it refers to "autism" since it expressly rejects the "medical" model of autism in its by-laws:
" 1 MISSION STATEMENT
The Autistic Self Advocacy Network (ASAN) seeks to improve the representation of the autistic community in public policy discussions and to advance the autistic culture movement. Based on neurodiversity and the social model of disability, ASAN seeks to promote social acceptance of neurological differences and to improve disability services and accommodations."
What the above statement indicates is that ASAN, presumably led by some persons with actual DSM diagnoses of Aspergers Disorder, and some higher functioning persons with PDD-NOS and Autistic Disorder, have started an organization which rejects the medical basis on which they have organized - their medical Autism Spectrum Diagnoses. Beyond that ASAN promotes the view that persons with autism are different but do not actually have a disorder. Accordingly no cure should be sought for persons with autism.
When Ari Ne'eman and company say WE don't want to be cured of our autism they are not talking about themselves as individuals or even about members of their organization. They object to parents seeking to treat and cure their own children and professionals who seek to help their efforts. While I acknowledge that it is Mr. Ne'eman's right to speak on behalf of himself in opposing treatment and cure for his àutism spectrum social condition, he and ASAN go further and oppose the right of parents to seek treatment for their own autistic children including those who are, unlike Mr. Ne'eman and the ASAN Board of Directors, severely autistic. They say so very expressly in the comment Autism Speaks in Columbus: Let Them Eat Cure by Meg Evans.
In the article above mentioned the author refers to several people who joined her at the ASAN protest of the Central Ohio/Ohio State University Autism Speaks walk which saw approximately 6,000 autistic persons, family members and friends turn walk to raise funds for autism research. The reality is that ASAN is a high profile extremist group which, thanks to the media talents of its very high functioning leadership, makes a big splash with autism ignorant organizations like the New Yorker and Canada`s CBC. It is too bad that these autism dilettante media organizations do not have their reporters get out of their comfortable chairs and go to events such as walks for autism research to see who actually speaks for autism ... it is the parents, family and friends of autistic children and severely autistic adults who are actually fighting to improve the lives of the truly autistic.
autism
They're also "anti-parent" and haven't clued in that that one's with the $$$ are those parents they like to trash in their blog posts.
ReplyDeleteDid you see in their "Ohio ASAN" post that 2 whole people stopped to talk to them... Out of 6,000. I haven't seen the video yet, but I have a feeling they were shunned instead of swarmed.
The simple reality is that where they posted about "Mary Antoinette and let them eat cake" in that post regarding AS, they do it for those with Autistic people.
Mary Antoinette "Let them eat cake".
ASAN "give them a few more supports".
Neither deals with the underlying issues, of true Autistic Disorder.
some of us who are higher functioning (not severe by most standards) autistic wish to improve our lives also and wish for a cure.
ReplyDeleteThank you Jonathan.
ReplyDeleteI was aware of your position but did not want to presume to speak on your behalf. Thanks for adding your voice to the discussion.
As I've posted in a comment to one of your other posts, I agree that ASAN has better things to do than organizing protests against stereotyped autism videos - online protest is enough to get the word out that at least there are other views than the one promoted by Autism Speaks, you and other bloggers. I think rather than wasting time on protests, they'd better take action that would actually improve the lives of autistic people in this world, ie. by helping to advance community services for autistic adults. It disappoints me that ASAN spends so little of its efforts on that.
ReplyDeleteHowever, as for your comment about the social vs. medical model of autism, these don't actually contradict each other. A medically, after all, has social consequences. To make a comparison, I am medically blind, but I reject the medical, cure-focused perspective on that in favor of a social perspective that emphasizes the accommodations to society that will make it easier for the blind to function. Same for autism.