Wednesday, May 06, 2009

Repressive Autism Advocacy: ASAN Does Not Represent Other People's Autistic Children

ASAN, the "Autism" Self Advocacy Network, is more than just a network for high functioning persons with PDD's or Autism Spectrum Disorders. It goes beyond simply representing the interests of its members and insists on challenging the rights of other persons, usually children, to receive representation of their interests through their parents and other caregivers. It attacks on a continual basis organizations like Autism Speaks, as it does in this latest press release, for attempting to help persons, primarily children, with Autism Spectrum Disorders recover from, or be cured of, their neurological disorder.

Autism Spectrum Disorders is the term commonly used today to describe the category of various neurological disorders listed as Pervasive Developmental Disorders in the DSM-IV, the Diagnostic and Statistical Manual of the American Psychiatric Association. The expression contains one word which is often used by ASAN, sometimes questionably, autism. I say questionably because some of the leading lights of the ASAN organization have Aspergers Disorder, a similar but distinct, disorder from that of Autistic Disorder from which the common usage borrows the term autism.

I also say questionably because some people with Aspergers Disorder or a high functioning variety of Autistic Disorder, actually purport to speak on behalf of all children and adults with Autistic Disorder, even though those persons, particularly children are usually represented, as is their right, by parents in the first instance, grandparents and other family members or state caregivers. ASAN actually goes so far as to attack organizations such as Autism Speaks which comprises many parents and family members of autsitic chldren precisely because they seek to overcome their own children's neurological disorders.

ASAN has the right to speak on behalf of its members and to tell the world that its members do not want to be cured. They have no right to oppose the treatment or cure of autistic children in the care of their parents or other caregivers. Under the United Nations Declaration of the Rights of the Child a child has the right to available treatment for their medical conditions. The UN Declaration of the Child, 1958, expressly recognizes that the child will be represented in the first instance by his or her parents. Not by a stranger somewhere else in the world who shares the same or a similar medical diagnosis. Apart from the lack of a legal right the high functioning autistic and Aspergergian persons who comprise ASAN lack a common shared reality with many of the people who they falsely claim to represenet. They have no legal, informed or moral right to advocate on behalf of Conor Doherty or the other children of other people with whom they have little in common.

In attacking Autism Speaks, and parents and parent organizations seeking to treat or cure autistic children, ASAN is overreaching and attempting to suppress the rights of autistic children, the right to treatment and cure of their neurological disorders and their right to be represented by their parents.

In doing so ASAN betrays itself as a repressive organization.

It is time ASAN stopped pretending to represent other people's children.

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Marius Filip said...

In that article I could see the same garbage: some autistic traits are good, several talented people have them, if we cure autism we cure talent, don't we, folks?

Shameless propaganda. The truth: "autistic traits" is not the same as autism, which is a disorder. If Bill Gates likes to rock back and forth doesn't mean the wealthiest man in the world is autistic.

Secondly, the autistic people who succeded, like Dr. Temple Grandin did, succeded not BECAUSE but IN SPITE of their autism.

In the case of Dr. Grandin, I watched a film from the MIND Institute in which she witnesses of the hard work of her and her parents to make her what she is right now.

So, autism "acceptance"? Acceptance of people of autism, yes.

But acceptance of autism? God forbid!

jonathan said...

Hi Harold, have you read my latest blog post about the forthcoming article in newsweek that I had heard about? Perhaps you could consider fighting these people proactively and joining me and some other people in writing newsweek a letter saying that in all fairness they should give our side of the story equal time.

farmwifetwo said...

Did you read Gonzo's (think that's the poster) on the Hub today that pretty much says that an autistic person that is violent isn't autistic.... in his "well a Scotsman wouldn't do that so he can't be a Scotsman" post.

Fingers crossed 2010 is coming. And hopefully the Aspies and the NLD's are off the spectrum.... even if it means kicking off mine... but only until I agree to get him re-dx'd :).... in Gr 8. But I'd rather he be off that to claim he and his younger brother are the "same".

Why they think anyone should have to sit in a room, in an institution, in a group home, locked up, without friends, without communication skills, without spouse, children, job or life... is OK.... Have you read Portia Iversten's "Strange Son".. the woman that started CAN. Now, if there's a story to further therapy and cure.... it's that one.

Must be nice to forget or ignore the severe end of the spectrum to further your own POV.

Must be nice to ignore the little boy on my lap who's been ill for 2 days and home with his Mom and unable to tell me exactly where it hurts and what is wrong.... Best I can do is hand out the Motrin (fever - yes, ear - think so, tooth - lose but I don't think it's sore - have to wait until June 1 to see the Ped Dentist, sore throat - having trouble swallowing) and wait for tomorrow's Dr's appt.

But.... it's not their problem little boy can't tell me what's wrong....

I wrote a slap in's Kristina's post on "can we get along" a couple of days ago.... ASAN is DANGEROUS. Gov'ts are going to say "well in that case, let's just cut.... here".


John Best said...

Can you advise the best way to file a complaint against Ne'eman and have him investigated for fraud? If he raises any money by using the word "autism", it would have to be illegal.

Perhaps someplace from this site?

Unknown said...


Please see below.

- Katie