Fix the charity that wants to ‘fix’ autism

[KamaAina]

http://america.aljazeera.com/opinions/2015/10/fixing-the-charity-that-wants-to-fix-autism.html

Autism Speaks is the mega-charity of the autism world. Founded in 2005, it has an annual budget of $60 million, is known for its ubiquitous awareness walks and has a handsome array of celebrity backers. In some quarters of the disability rights movement, however, it has long been reviled for silencing and shaming autistic people.

The organization is criticized for the lack of autistic people on its board of directors and among its senior leadership. Its advertising materials also present autism in the worst possible light. One video portrays autism as a terrifying stalker, saying, “I am autism … I know where you live.” Critics claim it spends hardly any money on actually helping autistic people and that it supports abusive therapies. Worst, its mission calls for a possible cure for autism, which for many autistic people is tantamount to a call for genocide.

Autism Speaks disputes all these characterizations, but well defended by its giant piles of money, the mega-charity is usually able to ignore its critics. However, when best-selling author Steve Silberman recently published a high-profile op-ed in the Los Angeles Times criticizing the group, Autism Speaks responded with a call for unity. Could its willingness to engage suggest that it is on its way to becoming a less divisive member of the disability rights movement?...

Autism Speaks’ raison d’être requires believing that there’s an autism epidemic in need of a cure. Founders Bob and Suzanne Wright started the charity after their grandson was diagnosed with autism. Bob Wright was the chairman of NBC Universal, and the couple used their media contacts and money to propel the charity into the nonprofit stratosphere. Today, they continue to promote the idea that autism rates reflect a terrifying crisis. In its “call for unity,” Liz Feld, the charity’s president, wrote, “Since 2005, the prevalence of autism has doubled.”

If anyone's gonna fix me, it's gonna be Coldplay, dammit!

[LoveIsNow]

1. Great article.

What more is there to say?

Autism Speaks takes a paternalistic viewpoint of autism.

I blame them for the fact that 98% of autism services are for children (and for the overall perception of autism as a child's disease), leaving those of us with ASD's who managed to survive our 21st birthday pretty much high and dry.

[KamaAina]

2. Thank you. As a cum laude Yale graduate, I hardly need a bloated nonprofit to speak for me.

[hifiguy]

3. I am dx'd on the spectrum

and I do NOT need to be "fixed."

To hell with these fucks, in a flaming handbasket.

[NuclearDem]

7. Well, on that we'll have to disagree.

Anyone who doesn't recognize Applejack as best pony needs some serious help.

[hifiguy]

8. LOL

The initial reason I loved the show so much was that I saw so much of Twilight Sparkle in myself. Some Fluttershy, too, at least in IRL as opposed to the intertubes, where no one knows you're a pony.

[NuclearDem]

4. Windows need to be fixed.

Human beings need to be respected.

My friends on the spectrum and our ASD DUers do not need to be "fixed."

[KamaAina]

5. In my case, some of our resident Hillary supporters might disagree.

[NuclearDem]

6. Ah, to hell with what anyone else says.

You're my kind of people, KA.

[aikoaiko]

9. I think Autism Speaks probably does need to reflect and adjust their message.

But they are a prominent group that brought attention and resources to autism.

Charity evaluators generally rate them well.

It appears, from this outsiders point of view, that something analogous to the deaf culture versus cochlear implants struggle is happening with autism.

[KamaAina]

10. Indeed. There have been Deaf speakers at Autistic events since the very beginning.