Tuesday, September 29, 2009

Has Autism Speaks Abandoned Severely Autistic Persons and Their Families?

I am not an Autism Speaks basher.

I have criticized specific decisions it has made such as the funding of research by Dr. Laurent Mottron who believes that the idea of curing autism is nonsense. I am appreciative though of the great work Autism Speaks has have done in raising awareness of autism around the globe including its work, in conjunction with the State of Qatar, in creating World Autism Awareness Day. A couple of days ago I thanked Autism Speaks on this blog site for the I Am Autism video which speaks some of the harsher truths about autism, particularly the severe ... and original ... autism.

But Jonathan Mitchell, at Autism's Gadfly, and Roger Kulp, who commented on this site, are correct. Autism Speaks has "kowtowed" to the Neurodiversity movement led by a gentleman with Aspergers and some Aspergers and High Functioning Autism followers. Autism Speaks has removed the I Am Autism Video from their main web site pages.

The barely autistic have once again succeeded in suppressing free expression about the harsher truths of autism, the harsher realities confronting those who would be classified as autistic BEFORE the DSM definition was expanded to include those with good or excellent intelligence, good command of language and who can have good social skills. These are the people who rise up in protest and condemn parents such as those who actually created the "I Am Autism Video" ... because they dared speak the truth. They are the people who do not want the world to know about the original, now barely visible, autistics with severe autism challenges.

Autism Speaks did not stand behind the parents who created the Autism Speaks video. By "kowtowing", as Autism's Gadfly put it, Autism Speaks has taken a huge step toward abandoning the severely autistic and their families. I have been a supporter of Autism Speaks but that support is beginning to fade as this once helpful organization aligns itself with those who do harm to the interests of the severely autistic that Autism Speaks once helped.

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farmwifetwo said...

So far we're simply lucky that on a local level they haven't realized the crap that goes on with the bigger picture.

How long until the Asperger's/HFA/NLD's demand the true autistics are dx'd with simply being "retarded" and demand they be tucked out of sight because THEY are the true autistics??

Anonymous said...

RimlandFan says:
Autism Speaks are nothing more than a made-over NAAR on steroids. Their mission sounds sooooo good on TV and they have excellent marketing skills- to lure families into ‘walking” for them and raising money. I wish the corporate sponsors would dry up and parents would wake up, because they make me want to throw up.

AS is nothing more than a front for a bunch of pharmceutical reps (remember kids, Peter Bell comes from a high paid job in pharmaceutical industry).

Dawson (an extremely overpaid psychologist) never did the UW any favors- and the UW autism center in itself is a waste of time (they don’t take medicaid, they don’t offer ABA at home- which is the scientific model, they spent 6 million giving first class intensive ABA therapy to infants who don’t even have autuism to make sure they don’t get it- while 14,000 kids in WA state can’t get any ABA due to inaccessible costs, and if you dare use them for an evaluation for your child, they will not stick up for your child at school- they back down and side with the schools, no matter how terrible the educational program is).

Bob and Suzanne Wright have done nothing to advance autism- all they have done is make a whole lot of autism enterpreneurs rich off the backs of families keeling over from the strain of autism. They have run over many smaller autism organizations that were trying to do the right thing. Autism Speaks has stolen the future of hundreds of thousands of families with their super sized organization. They use their influence and money to lobby the lions share of research money, then use their NAAR-headed science directors to hunt for the elusive missing autism gene, and fund studies to see if drugging the crap out of our kids works (nope, not Celexa, nope, not prozac either).

In fact they run their organization must like Pfizer- and have the funds to buy themselves out of trouble (just like Pfizer).

AS has never, ever, ever helped a family in need that I know of- unless of course the family needed a T-shirt- and they only give those out of you can fleece your family for funds to support them!

This is one organization that won’t get a glass of ice water from me or any of the families I know. Stop giving your money to this crappy self serving front group and finance groups and research that count: Generation Rescue, SAFEMINDS, Autism Research Institute, Nationla Autism Assn, or Autism One- these are all worthy organizations helping families pay for treatments, get information to treat their kids, support to keep families together- REAL help.

Wade Rankin said...

Autism Speaks cannot abandon those that they never served in the first place. The good intentions with which this organization was founded have been wasted from day one.

Anonymous said...

Autism Speaks will "kowtow" to whomever gives them the most money to line their own pockets. It simply amazes me that anyone would donate to them, however I hear parents are wising up and finally understanding that Autism Speaks and their foot soldiers are nothing but a bunch of hacks.

Sandy Crux said...

My son with autism is 44. I am in the process of going through the intake process to get him and his developmentally disabled wife into supervised housing. To suggest that the problems he has faced all his life and will continue to face are not a disability is to cause me great pain.

Moreover, the supposed new definition is sick and completely unprofessional.

By the way, Dawson is NOT a psychologist. How she justifies her credentials I have no idea. But, as far as I know, she has no such training which makes her declarations that much more suspect.

Harold, you are right, Autism Speaks has definitely abandoned people like you son and my son -- who is only considered moderately autistic.

I simply cannot fathom what parents of the severely autistic are feeling -- but one thing I do know is that it is long past time we took back the definition. Meaning, if someone is high functioning, they are not actually autistic.

Bottom line: There is no reason we have to allow this redefinition to continue. As a retired special education consultant and learning specialist (and yes with a Ph.D on the topic), if there is any type of advocacy campaign, I'm with you and so is Crux of the Matter!