Tell Autism Speaks: Nothing About Us Without Us!

*** Take Action ***

The Autistic Self Advocacy Network and other organizations representing the Cross-Disability Community are distributing this joint letter to the sponsors, donors and supporters of Autism Speaks following the organization's latest offensive and damaging Public Service Announcement, "I am Autism". If you are an organization that would like to sign on to the letter, please e-mail ASAN at info@autisticadvocacy.org before Close of Business Tuesday, October 6th, 2009. If you are an individual who would like to join ASAN's upcoming protests of Autism Speaks in Ohio, New England, New York City and elsewhere across the country please e-mail ASAN at info@autisticadvocacy.org Thank you for your support and please feel free to distribute for additional signatories.

To the Sponsors, Donors and Supporters of Autism Speaks:

We, the undersigned organizations representing self advocates, parents, professionals and allies in the Autism, Autistic and Disability Communities, are writing to you to express our concern about the recent actions of Autism Speaks. Our work is about helping empower and support people with disabilities of all kinds, including adults and youth on the autism spectrum, and we recognize that there are a wide variety of means towards accomplishing this goal. Yet, Autism Speaks’ recent choice to use fear, stigma, misinformation and prejudice against Autistic people as a fundraising tool does real damage to people with disabilities everywhere. The most recent example of this lack of ethics can be found in Autism Speaks’ new “I am Autism” campaign which states, “I am autism...I know where you live...I work faster than pediatric AIDS, cancer and diabetes combined. And if you're happily married, I will make sure that your marriage fails. Your money will fall into my hands and I will bankrupt you for my own self-gain...I will make it virtually impossible for your family to easily attend a temple, birthday party, or public park without a struggle, without embarrassment, without pain...I am autism. I have no interest in right or wrong. I derive great pleasure out of your loneliness."

Not only does this campaign rely on offensive stereotypes and inaccurate information (research indicates that parents of Autistic children are not more likely to divorce than parents of non-Autistic children), but it also does real damage to the cause of disability rights. By choosing to portray Autistic people as husks of real people, stolen out of our own bodies, Autism Speaks reinforces stereotypes and prejudice against people with disabilities that have existed for centuries and have been the source of pain, segregation and violence.

We are calling on you to end your support for Autism Speaks and to find new ways to show your support for Autistic people and others with disabilities. As the result of a pattern of unethical behavior and irresponsible governance, outlined below, we believe that Autism Speaks as an organization no longer deserves your time, energy, money and support.

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’ unethical fundraising tactics are not limited to the new “I am Autism” video. 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.

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.

Autism Speaks excludes the people it pretends to represent: 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 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, Autism Speaks’ governance policies are deeply unrepresentative and out of step with the mainstream of the disability non-profit community.

Contrary to the “I am Autism” video, which equates autism with AIDS and Cancer, autism is not a terminal disease. It is a disability, one that comes with significant challenges in a wide variety of realms. Yet the answer to those challenges is not to create a world in which people are afraid of people on the autism spectrum. The answer is not to create a world in which the word autism is met with terror, hatred and prejudice. It is to work to create a society that recognizes the civil rights of Autistic people and others with disabilities. It is to work to create a world in which people with disabilities can benefit from the supports, the services and the educational tools necessary to empower them to be full citizens in society.

We are Autism’s true voice – Autistic people and those with other disabilities ourselves, and our allies, family members, friends and supporters. Autism Speaks does not speak for us. We are not stolen – we are right here. Our lives may be difficult – but they are worth living. Autism Speaks Does Not Speak For Us and we will not work with an organization that relies on damaging and offensive stereotypes to advance an agenda out of step with those they purport to represent. We call upon you to recognize this and find better avenues for your admirable desire to support Autistic people and our families. We call upon you to end your support for Autism Speaks.

Regards,

National:

The Autistic Self Advocacy Network
Self-Advocates Becoming Empowered (SABE)
The National Council on Independent Living (NCIL)
ADAPT
TASH
Disability Rights and Education Defense Fund
The National Youth Leadership Network (NYLN)
Autism Network International (ANI)
Little People of America (LPA)

Not Dead Yet
The Bazelon Center for Mental Health Law

Autistic Spectrum Partnership In Research and Education (AASPIRE)

Autism National Committee
Mothers From Hell 2
International:
Autistic Self-Advocacy Network-Australia
Autism Rights Group Highland (in Scotland, United Kingdom)
The Autistic Community of Israel
Autreach IT in the United Kingdom
The Southwest Autistic Rights Movement (SWARM) in the United Kingdom

Local and Regional:
ADAPT-Montana
The Center for Disability Rights in Rochester, NY
The Regional Center for Independent Living in Rochester, NY
The Michigan Disability Rights Coalition
The Institute for Disability Access in Austin, Texas
The Maryland Coalition for Inclusive Education
The Paraquad Center for Independent Living in St. Louis, Missouri
The Lonesome Doves in Pennsylvania
TASH-New England
Together Enhancing Autism Awareness in Mississippi (TEAAM)
Wesleyan Students for Disability Rights at Wesleyan University in Connecticut
Tangram in Indianapolis, Indiana

Comments

[Carol Thompson - Lubbock]

What a shocking article! Autism Speaks is criminally discriminatory, and banally cruel. Autism Speaks "sounds like" those against health care reform in "DC" - are they one in the same?

This has, indeed, broken my heart for many days to come - how anyone, or any group in the nation could put out such hostile and harmful words is beyond my comprehension. Most of us know that serious discrimination does exist, and hate often prevails with those fearing our live-styles, but to become a group, and “go public” is felonious.

We all try so hard to live, daily, and to help one another - Autism Speaks must have their 501c3 revoked, now, and be censured by the State Attorney General in the state is was charted, now!

[Patricia Sprofera]

I echo the sentiments of my fellow poster, Ms. Carol Thompson.

[Jacob Wang]

Where do I sign?

[Chickie]

I don't know that Autism Speaks is the enemy. Is do know AUTISM IS THE ENEMY.

[Anonymous (In honor of ASPIE)]

My own group know as ASPIE (Adult Autism Supports and Programs Implemenatation Effort) would like to join the list of organizations against this b.s. Where do we sign?

[Ari]

ASPIE,

You should e-mail info@autisticadvocacy.org to sign on behalf of your group.

[Sandy Hubbard]

Ya'll are reading this all wrong. I am a parent of an autistic 18 year old. THIS IS AUTISM!!!

“I am autism...I know where you live...I work faster than pediatric AIDS, cancer and diabetes combined. And if you're happily married, I will make sure that your marriage fails. Your money will fall into my hands and I will bankrupt you for my own self-gain...I will make it virtually impossible for your family to easily attend a temple, birthday party, or public park without a struggle, without embarrassment, without pain...I am autism. I have no interest in right or wrong. I derive great pleasure out of your loneliness."

They are not talking about THE PERSON! They are talking about autism and what it does to your life! It does make marriages crumble, it does make it hard to take your family anywhere, it is more prevalent than the diseases mentioned. Not once does it talk about an individual. Read it the right way and you will understand it.

And as Jacob Wang wrong earlier...Autism is the enemy.

I am with someone with the disability of Autism 24 hours a day and THIS IS AUTISM!

[Thomas C. Weiss]

In response to the production, 'I Am Autism,' I have written an article that is now posted at Disabled-World.com. You can find it here: http://www.disabled-world.com/editorials/autism-speaks.php

I find it to be a dismal portrayal of Autism and misrepresentative of people with Autism. While I am sure that Autism Speaks had intentions that included making money to support persons with Autism, their approach was absolutely horrendous.

Thomas C. Weiss

[Sandy Hubbard]

I am going to make one more comment, because this has really made me angry...View the video before your speak!!! http://www.youtube.com/watch?v=HDdcDlQVYtM

I AM AUTISM!!!! This ad campaign portrays Autism and what it does to the individual, to the mothers, the fathers, the brothers, the sisters. We are AUTISM!!! If the truth is known, most of you who made comments and want to sign this so called petition probably have never even been blessed to have someone with Autism in your life. You need to look for that blessing! I was lucky enough to get that blessing.

[Grew up with Autism]

If my sister didn't have autism and i didn't know what it is or how it makes one with it act, i would be completely horrified by this campaign. It would scare the crap out of me and make me honestly scared to be around anyone with it. BUT seeing as i HAVE grown up with it in my life because of my little sister, i can see that they are trying to spread the message from the mouth of autism itself. But that is the thing. NO two cases of Autism are exactly the same, it is so different from case to case and this is sadly just a true fear tactic that really does need to be stopped, and i find it absolutely repulsive that this would be used actively to bring attention to autism. this is nothing but negative and is nothing more than slander and degradation for those who have Autism in any form.

[Tiffany L Daniels]

I AM SOMEONE WITH AUTISM!! How dare you say I don't! And this video is dead wrong! It is insulting, discriminating, and protrays us as husks of people, robbed of are full personhood, when that is not the truth! I have Asperger's Syndrome, that does not make me any less of a human being then anyone else!

[Curtis Maybin]

Great stuff on autism looking forward to more.

Thanks

Curtis Maybin