Wednesday, November 11, 2009

NYC Protest on November 17

For those who will be in the New York City area next week, please consider taking part in ASAN's protest rally against Autism Speaks' exclusionary, stigmatizing, and exploitative practices. Details are set forth in the following announcement by ASAN President Ari Ne'eman:

We'll be gathering at Seventh Avenue and 57th Street, 154 West 57th Street in New York City from 6 PM to 8 PM this coming Tuesday, November 17th, to hold up signs and hand out flyers to Autism Speaks sponsors going in to their New York City concert with Bruce Springsteen and Jerry Seinfeld. Come join us! Please RSVP to or go to the facebook event page here:

Please distribute to your friends, contacts and listservs!


1. Autism Speaks talks about us without us. Not a single Autistic person is on Autism Speaks' Board of Directors or in their leadership. Autism Speaks is one of an increasingly few number of major disability advocacy organizations that refuse to include any individual with the disability they purport to serve on their board of directors or at any point in their leadership and decision-making processes. In large part this is due to Autism Speaks' public relations strategy of presenting Autistic people as silent burdens on society rather than human beings with thoughts, feelings and opinions.

2. They use fear and stigma to try and raise money off the backs of our people. Autism Speaks uses damaging and offensive fundraising tactics which rely on fear, stereotypes and devaluing the lives of people on the autism spectrum. Autism Speaks' advertising claims that Autistic people are stolen from our own bodies. Its television Public Service Announcements compare having a child on the autism spectrum to having a child caught in a fatal car accident or struck by lightning. In fact, the idea of autism as a fate worse than death is a frequent theme in their fundraising and awareness efforts, going back to their "Autism Every Day" film in 2005. Indeed, throughout Autism Speaks' fundraising is a consistent and unfortunate theme of fear, pity and prejudice, presenting Autistic adults and children not as full human beings but as burdens on society that must be eliminated as soon as possible.

3. Very little money donated to Autism Speaks goes toward helping Autistic people and families: According to their 2008 annual report, only 4% of Autism Speaks' budget goes towards the "Family Service" grants that are the organization's means of funding services. Given the huge sums of money Autism Speaks raises from local communities as compared to the miniscule sums it gives back, it is not an exaggeration to say that Autism Speaks is a tremendous drain on the ability of communities to fund autism service-provision and education initiatives. Furthermore, while the bulk of Autism Speaks' budget (65%) goes toward genetic and biomedical research, only a small minority of Autism Speaks' research budget goes towards research oriented around improving services, supports, treatments and educational methodologies, with most funding going towards basic research oriented around causation and genetic research, including the prospect of prenatal testing. Although Autism Speaks has not prioritized services with a practical impact for families and individuals in its budget, its rates of executive pay are the highest in the autism world, with annual salaries as high as $600,000 a year.

Link to our Joint Letter Against Autism Speaks, signed by over 60 Disability Rights Groups:

Update: A news report on the protest, along with a photo slideshow, was published November 19th in the Long Island Autism Examiner.

Here is a video of an Autistic self-advocate explaining the situation to Jerry Seinfeld (first posted by Socrates at The New Republic):


Stephanie Lynn Keil said...

"Not a single Autistic person is on Autism Speaks' Board of Directors or in their leadership."

There are no neurotypical parents of severely autistic children on the Board of Directors of ASAN. Why don't you ask Harold Doherty to be on the board of directors of ASAN? This is what your request about Autism Speaks equates to. ASAN and Autism Speaks have completely different goals so why would they want a very high-functioning Asperger's person who does not want a cure for autism on their board of directors? Frankly, I think you are wasting your time with this Autism Speaks stuff, but that is just my opinion. You should just say "ASAN does speak for me!" or whatever. I don't think you are going to infiltrate Autism Speaks very well.

I don't support Autism Speaks in any way but I don't think you are really helping autistic people with these protests. I honestly think it is a waste of time and that you should spend your time doing something more productive. There are plenty of autistic people (I am one of them) who have no friends and not much joy in their lives. Organize an event for them: autistic fun day (or whatever!) Then, if you so desire, tell them about your goals and ASAN. I think if you can prove you are positive people and parents see that their autistic children can be happy the will be inclined to believe you more. You (ASAN) make many people, especially parents of severely autistic children, angry. Perhaps prove that severely autistic children can be happy as they are and they will start to believe you. Your protests really do nothing, except make those who already agree with you feel good about what they have done.

But, of course, I don't know much about all of this. This is just my opinion.

VAB said...

I could not disagree with Stephanie more. I am an NT parent of an autistic child and I believe that it is vitally important that policy and supports for autistic people be determined by autistic people. Autism Speaks seeks to influence policy, supports and attitudes regarding autistic people. It is ridiculous for them to do that without consulting autistic people. Self determination is one of the biggest factors in happiness, it is at the core of what Americans call freedom. Everyone has a right to it. Naturally, that includes autistic people.

asansouthwestohio said...

Stephanie, I think your "autistic fun day" suggestion is a good one, and ASAN chapters do have social events on occasion; we don't spend all our time waving banners at protest rallies.

Do you live near an ASAN chapter? You would be welcome to attend the social meetings, if you are interested. We don't require people to go to protests if they wouldn't feel comfortable with that.

Also, when ASAN talks about the lack of self-advocate representation at Autism Speaks, we are not asking them to put someone from ASAN or any other token autistic person on their board of directors. That wouldn't solve the problem, which is that Autism Speaks does not listen to, and does not respond to the concerns of, autistic people. Autism Speaks should not claim that they speak for us when in fact they don't.

This is a completely separate issue from wanting a cure for autism. If they had different goals that were not controversial, but they excluded autistic people from participating, they would still be wrong to exclude us even if we all agreed with their goals.


VAB said...

I didn't properly read the middle part of Stephanie's comment. Sorry about that. That makes a lot of sense to me to and, in any case, Stephanie is in a better position than me to comment.

RB said...

could you give a google map link to the protest site?

asansouthwestohio said...

It's at Carnegie Hall, two blocks south of Central Park:
Google map link