Tag Archives: I am Autism

Letter from ASAN regarding “I am Autism”

Last week, Autism Speaks continued their pattern of exploitation of Autistic people and our families by releasing the video “I am Autism”, in which Autistic people are portrayed as stolen children and burdens on our families and on society. Contrary to some claims, Autism Speaks continues to promote the video on its website and through youtube. In addition, this is just a small part of a long history of problems with Autism Speaks.


Autism Speaks uses unethical fundraising tactics relying on fear and devaluing the lives of Autistic people: 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. Autism as a fate worse than death is a consistent theme in Autism Speaks’ fundraising.

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 returned to services, supports or educational initiatives that have a practical impact on the lives of Autistic people and our family members,  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 goes towards research (65%), only a small minority of Autism Speaks’ research budget goes towards research oriented around improving services, supports, treatments and educational methodologies available to Autistic adults and children.

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 of our own, Autism Speaks’ governance policies are deeply unrepresentative and out of step with the mainstream of the non-profit and disability communities.

Autism Speaks funds eugenics: A major portion of Autism Speaks research agenda is oriented around genetic research with eugenic implications. One of Autism Speaks major priorities is the identification of genetic biomarkers for the autism spectrum, thus allowing the prenatal identification and potential selective abortion of Autistic fetuses prior to birth. We are not opposed to genetic research and we take no position on the broader abortion issue, but we are deeply concerned about the potential for eugenics in Autism Speaks’ research. The refusal of the organization to consider the ethical, moral and social implications of what it funds is deeply concerning, particularly given the 92% rate of selective abortion for the developmental disability Down Syndrome. Rather than fund research and services that can help to improve the quality of life of Autistic adults and children, Autism Speaks funding is primarily directed towards preventing our very existences.

For these reasons and others, we assert that Autism Speaks does not speak for us. ASAN is organizing protests all over the country, with a successful one in Portland, Oregon having already occurred. If you’d like to participate in the protest, e-mail us at info@autisticadvocacy.org. Together, we can take action against an exploitative organization and reclaim our voice.


Thank you and, as always, Nothing About Us Without Us!

Ari Ne’eman
The Autistic Self Advocacy Network