ASAN’s Letter in Response to Autism Speaks’ Exploitative Practices

2 Oct

The Autistic Self Advocacy Network is gathering support from multiple disability groups to protest recent actions by Autism Speaks.

Blogged at LBnuke and Autistic Self Advocacy Network, SW Ohio

ASAN is calling for more organizations to sign the joint letter:

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 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 Thank you for your support and please feel free to distribute for additional signatories.

And here is the letter:

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.



The Autistic Self Advocacy Network
Self-Advocates Becoming Empowered (SABE)
The National Council on Independent Living (NCIL)
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)
Mothers From Hell 2

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:
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

Ari Ne’eman
The Autistic Self Advocacy Network

10 Responses to “ASAN’s Letter in Response to Autism Speaks’ Exploitative Practices”

  1. Anna Hayward October 2, 2009 at 09:02 #

    As I frequently find myself saying on various autism sites “If you prick us, do we not bleed?”

  2. Rick Colosimo October 2, 2009 at 16:32 #

    First off, I’m wholly supportive of the self-advocacy community. I can’t imagine what life is like for them. Self-determination is among the fundamental human rights, and the entire community of parents should be aiming to give our children (young and old), the skills to help them claim these rights and exercise them as they, not we, see fit.

    The $600,000 salary figure is misleading, perhaps unintentionally. Autism Speaks posts their IRS Form 990 submissions. Here is the 2008 form, the most recent available:

    In this filing, Dr. Dawson is identified as having a salary of some $360,000, with a significant $270k in “other compensation.”
    Reviewing the notes, p.55 of the PDF, it is disclosed that she received a “one-time relocation payment of $269,721.”

    Now, $360k in salary for Dr. Dawson and the organization’s president, Mark Rothmayr, may well be high, and a $270k relo payment may be unusual for a nonprofit, but commingling/confusing/obscuring the numbers does not help ASAN’s argument.

  3. Roger Kulp October 2, 2009 at 19:01 #

    Yet another disgusting effort by ASAN and the neurodiversity movement to deny that there are seriously disabled autistics out there,who do see their condition as a terrible cripppling disease.Autistics who cannot function enough to become self advocates without a great deal of biomedical tratment.

    ASAN and Ne’eman are a disgrace,who want severely disabled autistics shut away from society.

  4. Kev October 2, 2009 at 19:19 #

    And your evidence for any of those assertions Roger? Or is this just hit n run bullshit?

  5. Dedj October 2, 2009 at 19:53 #

    Roger will not be able to come up with a single scrap of evidence.

    Lets see, who is usually thrown into the ‘ND box’ by the Kulp Krew?

    Arnold, who is involved with several autism charities, including at least one that provides services to serverely autistic people.

    Stanton, who has worked with people on the special needs spectrum, including people with autism.

    Murray, who has campaigned on the national stage for assistance devices for non-verbal people, including autstics.

    Mottron, who has more research hours to his name than Roger has had vitamin meds.

    Dawson, who has fought for recognition for people with autism on the national stage.

    I can think of sundry other ‘nd’ people, myself included, who have professional level experience of working directly with people with autism (and dual diagnosis like schizophrenia and stroke), often in the clinical or institutional environment.

    The total amount of experience of the ‘anti-ND’ movement can be summed up as: one of them went to a institution for people with autism a couple of times.

    Anyone who thinks the ND movement – as a movement – is denying the existance of severely autistic people clearly has no clue as to who the ND movement is made up of and what they do for a living.

  6. bensmyson October 2, 2009 at 20:23 #

    I got an email the other night in response to some of my earlier posts regarding this topic and the email stated that autism was a mind evolving into a superior form and should be left alone.

    I’ll be sure to tell that to John Travolta and his wife Kelly the next time I see them.

    Some of you folks are way out there, good luck with all that!

  7. Nostrum October 2, 2009 at 20:35 #

    That video is the stupidest thing I’ve seen from them in a long while. It deserves all the backlash it gets, and more.

  8. Stephanie October 3, 2009 at 01:10 #


    “Anyone who thinks the ND movement – as a movement – is denying the existance of severely autistic people clearly has no clue as to who the ND movement is made up of and what they do for a living.”

    I would also add that they either do not realize or do not care that people with autistic traits that significantly interfere with functioning in a neuro-typical world need to be recognized as people with the rights, privileges, and accommodations they need to enjoy a quality of living consistent with their community.

    As much as I feel the need to advocate the cause of neurodiversity for the benefit of my older son who is now (after treatment) high-functioning so that he can attain his potential; I feel it is even more important that I advocate the cause of neurodiversity for the benefit of my younger sons who are not high-functioning (yet) so that they can attain their potential without being stripped of their rights.

    I don’t stalk ASAN and don’t claim to know everything they believe, but self-advocacy shouldn’t be dependent on level of functioning nor should self-determination. People are people are people, no matter what label you put on them. Unfortunately, people need to fight for the right for autistics at all levels of functioning to be treated as so, or else they won’t be treated as so.

  9. Bob King October 4, 2009 at 20:14 #

    I can’t think of a better illustration of the bromide that “we have nothing to fear, but fear itself.”

    There is nothing more dangerous than a herd of xenophobes aiming to “cure” you with baseball bats. I speak metaphorically, of course.

    Fear and panic sure seems to appeal to a certain, easily exploited demographic. It’s become pretty obvious that Autism Speaks appeals to Social Conservatives, or rather, that segment of the population who tend to be fearful and who therefore tend to be social conservatives, people who seek comfort in authoritarian structures.

    Autistics and aspies cannot and will not “fit in” to hierarchical structures, cannot easily adapt to that sort of social matrix, do not respond well to “traditional discipline” – frankly, we put the question to their entire world-view simply by walking and breathing. It gets a lot worse when we learn to talk. :>

    Anyway, I don’t want to threadjack – but I do want to point out that this actually does fit into a larger social context and it’s probably productive to keep it in mind in order to craft productive responses. As my socially-clueless reaction is to jam a thumb into the inflamed reflex point – I think the best thing I could do at the moment is to stop. right. now. 😛


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