Opinions About "Autism Speaks"

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They are going more towrerds adults but younger ones with things like life transitions from teen to adult, a job portal that seems geered towerd stereotype programmer jobs, and extending insurence coverage. This makes sense as the people diagnosed as kids that were diagnosed when the criteria expanded are now young adults or will soon be entering adulthood. The parents of who joined them and funded them a decade ago when there offspring were children find themselves with offspring whom are young adults.

That is one reason you do see a few blogs on thier website by Autistic Adults.

They still do what in my opinion are harmful things spending very little money on services, that puzzle piece logo, the #MSSNG genetic project with google (we are not missing and what is that genetic information going to be used for?), supporting Applied Behavoiral Analysis.

They are not as evil as they once were. You do not see fundraising horror shock videos like "I am Autism" anymore and there are two Autistic people on their board.


RANT:
This did not happen by accident it was the Neurodiversity/Autism rights movement so often dispised here protesting them, organizaing a boycott of their sponsers that did get Build A Bear and Pret a Porter to drop them and got more positive influential press. They accomplished this with a fraction of the money and none of the connections of Autism Speaks. These movements have some seroius flaws but they deserve a thank you not the big f**k you they are getting from so many autistics these days

I don't have a big problem with them. I do wish (as has been stated by others) they had a greater focus on adults. What are they going to do when all these kids grow up, huh?

In my search for therapies and treatments that mitigate autistic symptoms I've found a lot of interesting stuff from them, but it's usually frustratingly vague or short on information I'm able to actually use.

I showed this forum to a very close and supportive NT friend once, he said he wouldnt be able to relate to anything on here, it was all very confusing to him. When I read others posts, most of the time I can for once in my life actually relate and "feel" their stories.

This is a forum made from us understanding eachother and then we go out into the world where we (i think? i do at least) feel like aliens.

Its understandable that say for a group of mute people they may have a NT to speak and help, or for a group of people with down syndrome they may have a NT to help them.

But autism? Autism speaks does not represent me.

Dunno what their doing....

This has been brought up before and I will say it again:

Autism Speaks DOES NOT speak for autistic people of any kind.

Autism Speaks DOES speak for the parents of autistic children.

Why are we talking about them AGAIN?

They're evil. They suck. They dehumanize us. End of story.

Goatfish57: I agree that Attwood quote perfectly describes me before I gave up and actively sought to embrace non-perfectionism. Still is a tendency, but one I fight to succeed in the NT world. Ditto for focusing on people's feelings during a task rather than solving the task problem most efficiently. I have some hilarious (in retrospect) stories of the Aspie/NT culture clash in the world of big business. I ought to write up the story about when, as in-house counsel to a business unit at AT&T, I had to spend three days with my clients at a Seven Habits seminar.

Anyway, thanks for posting the additional sites!

NAS also has some information for adolescents and adults

Is AS an international org? I wonder if their myopic view of ASD is a reflection of the US healthcare system (that leaves so many out in the cold and without any care or preventative services, with more support for children versus adults)? Either way, it's bogus to leave folks who need care without. I'd rather pay more taxes so that my friends without insurance would at least have some, and so that my parents wouldn't have to worry about end of life care, and so that everyone on this forum wouldn't have to worry about being able to get the care or recognition they need and deserve.

The Autistic Self Advocacy Network may be worth a look.

About name recognition.

My non Internet life dealing with people face to face.

Everyone knows A $, and that they are working for a cure for Autism. Most can even name Mrs. Wright by name. All know what the puzzle pieces means. All know about ABA.

Next name that comes up is David Finch. He made the rounds here a few months ago.

They know ARC. It is an association that deals with all disabilities.

They may know Easter Seals. Temple Grandin gets mentioned.

I was the person who had to add in Atwood, wrongplanet, GRASP and ASAN on the general info paper for the ASD support group my husband belongs to. None of the people (adults who had been diagnosed for a while), knew any of those. This group has been chugging a long 5 years before hand.

While ASAN, GRASP and wrongplanet.net are well known on the net, in real life it's barely a blip.

Autism Speaks has same name recognition as Race for a Cure in the general public. It takes a lot of PR to get there.

Another problem with Autism speaks is that They are rather let's say this NOT A NON-PROFIT.

IMO, it wouldn't surprise me if Autism Speaks is giving lots of money to the Trump campaign, given that The Rump believes vaccines cause ASD in children.