Tuesday, December 11, 2018

Autism Speaks on the record

As many people know, autism speaks dropped the word 'cure' from their mission statement about two years ago.  Until today.  I was unaware they'd given an explanation for this.  They address this issue and other statements in the link I gave in a statement entitled "for the record".

They state that there are multiple autisms and no single cause.  Ergo, there can't be a single cure for autism.  They state science has proved there could never be one cure for all autisms, but they offer no proof for this speculation.  By some convoluted logic that escapes me, they claim because there is no single cure for autism that we should not look to cure anyone's autism at all, even if this were possible.  Why can't we just find a cure for each and every individual that is autistic?

They also dropped the words 'global health crisis' from their mission statements.  Does this mean because there are different autisms, some of them are global health crises and others are not?  Why wouldn't each and every single instance of autism, not be a global health crisis, so why would they drop these words as well?

In contrasting their past mission statement with their present one, it would seem they dropped any indication of autism being any sort of bad thing.  Just what the anti-cure, pro-neurodiversity people would want them to do.  

It's also an interesting coincidence that autism speaks changed their mission statement shortly after the Los Angeles times published a scathing op ed piece about them in the los angeles times, written by neurodiversity advocate and writer, Steve Silberman.  This is also when they put two pro-neurodiversity anti-cure autistic self-advocates, Stephen Shore and Valerie Paradiz, on the board amidst complaints of not having any autistic people on their board of directors.

It's likely the real reason for dropping the word 'cure' from their mission statement is they wanted to appease noisy neurodiversity protesters and they were also worried about their bottom line.

They also stated in their 'for the record' that they had these two autistic members on their board.  Valerie Paradiz was not diagnosed until about the age of 40, many years after her own son was diagnosed, despite the fact she hung out her shingle as an autism consultant, and advertised herself as some sort of autism expert.  It's strange she would not recognize the disorder in herself for so long.

They say they employ a variety of autistics in various positions in their organization, but there is no transparency in who these people are and in what capacity they've served autism speaks.  A couple of persons involved with autism speaks have told me AS does not want to violate these individuals' privacy.  This is despite the fact that they found persons to interview for their autism in the workplace video, publicly showing autistics in a variety of jobs.  This was apparently done to encourage employers to hire autistic people, yet they did not comment on what they did in their own organization.

Another statement in this also caught my eye:

Autism Speaks supports everyone affected by autism and recognizes the diverse viewpoints within our community. By fostering acceptance and understanding of autism, our goal is for all people on spectrum, no matter how they self-identify, to be appreciated for who they are and for the contributions they can make to society.

I'm curious as to what AS means by the statement no matter how they self-identify.  Does this mean that autism speaks supports self-diagnosis and anyone calling themselves autistic, despite lack of clinical symptoms, has a viewpoint they will support?

Another point to ponder is if they support everyone affected by autism's point of view, why would they put two anti-cure pro-neurodiversity individuals on their board and not the pro-cure pro-treatment Roger Kulp who contacted them and wanted to make a contribution, but who was ignored completely?

One of their talking points was that they wanted ASD people to be the best they could be-with autism.  So this means they want people to remain autistic and handicapped.  I want people to be the best they can be WITHOUT autism.  They can never be the best they can be with autism. 

They've also stated in this piece that they oppose aversives as a treatment for autism and do not support or endorse organizations that use them.  However, they have allowed the judge Rottenberg center to advertise their services at their walks. The judge Rottenberg Center has been notorious for being the main practitioner of aversive therapy for autistic persons. Matthew Israel, its founder, was expelled from the Autism Society of America for practicing clinical psychology without a license.   It's possible AS allowed the JRC to advertise at their walks before they wrote 'for the record' and then stopped this practice, but otherwise, this would be an outright fabrication on AS' part. 

Based on these talking points, is Autism Speaks a charity worth supporting and donating to?  Autism's Gadfly does not think so.  


Anonymous said...

If they removed "cure" simply because it won't be possible for a century or two to rewire a person's synapses past 25, or grow a person's brain tissue from scratch, to make it as if the person never had Autism, if that's what they said, it'd be different.

But there is no mention of a want for "practical/functional recovery" via medical treatment, or even prevention, whether you believe those terms are euphemistic or empty, not saying it says something too.

Emily said...

I just found this blog today and I want to say thank you because now I feel a little less alone

haroldldoherty said...

Will they be changing their name to "AutismS Speak"?

Anonymous said...

Imagine if Jonas Salk were alive today, and spent his resources on studies on children with polio doing a puzzle with a purple soccer ball. He wouldn't be working on the vaccine.
That's the direction it's been heading. That's Simon Baron Cohen's research.

Truly anonymous said...

Anonymous there is one flaw in your idea. Polio is a disease. Autism is a disorder. There's a difference you know.

Anonymous said...

The point I tried to make is research is done to write a book and get fame, not help anyone now or in the future. It's a metaphor, don't take it literally.

Simon Baron Cohen is not looking to help anyone, he just likes writing armchair theory books and articles.