Autism Sneaks

This section is a “Hall of Shame,” reserved for those organizations and individuals who seek to misrepresent and/or exploit Autistics for their own dubious purposes … or who, at the very least, persist in getting the facts very, very wrong.

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For openers, let’s start with the obvious:

“Autism Speaks”

Below is my short-form assessment (with minor edits) of the organization that calls itself “Autism Speaks,” recently posted on page three of this discussion at WrongPlanet.net.

[Posted: Sat Mar 01, 2008 3:38 pm ]

I think it speaks volumes about “Autism Speaks” that they gave their donors’ money to a gold-plated NYC lawfirm to threaten a fourteen-year-old autistic girl with a frivolous $90,000 lawsuit over her creation of a fair use parody of their own website. That’s beyond pathetic.

Then, of course, there’s the now infamous “documentary,” Autism Every Day, which blatantly angled to portray autism in its worst possible light, including a histrionic display from their very own Senior Vice President, Alison Tepper Singer, in which she whined that she was tempted to KILL her autistic daughter.

In light of their origins and “star-chamber” roster of insiders, it should come as no surprise that “Autism Speaks” has been overtly hostile to anyone who has dared to question their agenda. But there is no segment of society to whom they have been more inexplicably hostile than they have been to Autistics themselves. The perspectives, feelings, opinions, deliberations and knowledge expressed by Autistics are of absolutely no interest or value to the self-proclaimed messiahs of “Autism Speaks.” Their only use for us is as mute and obedient “poster children” in their vainglorious campaign to cash in on manufactured pity.

Imagine, if you will, the “good” that would be done if N.O.W. and the N.A.A.C.P. were headed by Trent Lott and David Duke, and staffed exclusively by rich white men … you get the picture.

Where autism itself is concerned (as opposed to their core mission of fear-mongering and exploitation), the only hint of sobriety I’ve seen come out of “Autism Speaks” came with their eventual refusal to sign on with the anti-vax “autism-is-mercury-poisoning” zealots. Otherwise, when considering their complete track-record, there is nothing they have ever done that was so benevolent as to make for even a marginally equitable trade-off.

In other words, no, “Autism Speaks” will not be allowed to get away with purporting to speak for me. No-can-do.

David K. March

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[update: 10/08/09]

http://www.autisticadvocacy.org/modules/smartsection/item.php?itemid=61
or
http://tinyurl.com/yc2le2s

[ASAN website copy contains additional supporting links and background info; will fix links and formatting below as soon as I can]

Letter to the Sponsors, Donors and Supporters of Autism Speaks
Published by [ASAN] Admin on 2009/10/7

The following letter from over 60 disability rights organizations has been sent to numerous national sponsors of Autism Speaks. Individual signatories can show their support by signing the petition at
http://www.ipetitions.com/petition/AutismSpeaks
Please feel free to distribute this to your networks.

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.

National and International Organizations:

The Autistic Self Advocacy Network

Self-Advocates Becoming Empowered (SABE)

The National Council on Independent Living (NCIL)

ADAPT

TASH

The Arc of the United States

Disability Rights and Education Defense Fund (DREDF)

The National Youth Leadership Network (NYLN)

Autism Network International (ANI)

The Autism National Committee

Little People of America (LPA)

Not Dead Yet

The Bazelon Center for Mental Health Law

National Coalition for Disability Rights/ADA Watch

The Autistic Spectrum Partnership In Research and Education (AASPIRE)

Mothers From Hell 2

The Center for Self-Determination

Disability Rights Advocates

Kids As Self-Advocates (KASA)

Service Dog Central

MHONA International

The National Empowerment Center

Disabled Youth Collective (DYP)

The National Coalition of Mental Health Consumer/Survivor Organizations

Feminist Response in Disability Activism (FRIDA)

The ICORS Asperger’s Listserv

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

The London Autistic Rights Movement (LARM)

The Aspergers Network in the United Kingdom

Local, State, and Regional Organizations:

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

The Disability Activists Work Group (DAWG) in Oregon

APSE-Oklahoma

North Carolina Disability Action Network

Access Living of Metropolitan Chicago in Chicago, Illinois

Topeka Independent Living Resource Center in Topeka, Kansas

Disabilityworks in Chicago, Illinois

Ardinger Consultants & Associates in Maryland

Statewide Parent Advocacy Network of New Jersey

Wisconsin Family Assistance Center for Education, Training and Support

Aspergers Young Adults of North Alabama (AYANA)

Access to Independence of Cortland County, Cortland, New York

Youth Power, New York

The New York Association on Independent Living

Self-Advocates As Leaders (SAAL) in Oregon

Green Country Independent Living Resource Center

Elementary Inclusive Education Program at Teachers College, Columbia University

Beyond Compliance Coordinating Committee at Syracuse University

Green Mountain Self-Advocates in Vermont

Advance Youth Leadership Power in Chicago, Illinois


Ari Ne’eman
President
The Autistic Self Advocacy Network
http://www.autisticadvocacy.org
info@autisticadvocacy.org
732.763.5530

—–

[to be continued…]

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4 Responses to Autism Sneaks

  1. Luce says:

    Hey, Mr March,

    Autie here. Looking for a comprehensive assessment of Autism Speaks poison for an article – can you point me in the right direction. I just discovered you blog and am enjoying it very much.

    Thx,

    • dkmnow says:

      Hi, and sorry for the delay.

      Enormous numbers of bloggers have posted extensively on the harm done by Autism Speaks. Links to a few such posts can be found on my own post, here:
      https://dkmnow.wordpress.com/2009/10/10/disability-rights-community-vs-autism-speaks/

      As for comprehensive, I’m not sure, but I think the statement from ASAN, reprinted above, is among the best I’ve seen. Although it was written as a response to the infamous “I Am Autism” video, it does a very good job of covering the key points concerning how autistics have been treated by Autism Speaks. The full statement, “Letter to the Sponsors, Donors and Supporters of Autism Speaks,” is still available on ASAN’s website. The current link is here:
      http://autisticadvocacy.org/2009/10/letter-to-the-sponsors-donors-and-supporters-of-autism-speaks/

      For a quick rundown of the problems with Autism Speaks, ASAN has also made the following PDF flyer available:
      http://autisticadvocacy.org/wp-content/uploads/2012/05/Autism_Speaks_Flyer.pdf

      I hope this helps, and again, I apologize for the delay in my response.

      Best wishes,

      –DKM

      • Luce says:

        Thx Mr March,

        Useful.. but I’m still looking for a catalog of their campaigns.

        Hmmm… wasn’t it their representative that said that autism is worse than cancer because cancer at least is terminal? Now I have to remember where I saw that!?

        BTW, you may enjoy the fruits of my researches here: http://auticulture.wordpress.com/

        Jason is posting a series about rampage shooters and the zeitgeist that is linking autism with planned violence that may become part of a book. He’s going to be looking for people’s accounts of their perceptual anomalies for that, if you care to contribute? Come join in!

        And thanks again for the links!

        PEACE,

        Luce

      • dkmnow says:

        I remember the “cancer” reference all too well, though not its source. Even before Autism Speaks, different versions of such littered the web for years. The specific reference is something I can easily imagine having come from Portia Iverson, Suzanne Wright, Allison Tepper Singer, Kim Stagliano, or any number of others in the anti-autistic community, past & present. But I would be hard-pressed to even know where to begin in finding the original reference portraying the lethality of cancer as making it preferable to autism.

        But yeah, that kind of crap is absolutely unconscionable. And as more & more research and writing on autism is coming to take the autistic and disability rights point of view seriously, Autism Speaks is being forced, however gradually, to re-evaluate its approach. We still have a very long way to go, but our message is being heard, just a little more every day.

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