A Protest Against a Summit Without Us

An autistic self-advocate is arranging a protest against an “summit” that is about us without us. We are happy to spread the word about the event (this isn’t an Association for Autistic Community event, although we definitely share her values and are glad to publicize this event). We also expect many of our friends to be part of this protest.

Autistic People to Protest Autism Speaks at GWU Wednesday

Media Contact:

Autistic people are joining fellow people with disabilities and allies to protest Autism Speaks’ Policy Summit at George Washington University’s Trachtenberg Media and Public Affairs building at 21st and H Streets NW this Wednesday from 8:00am to 12:30pm.

We stand against Autism Speaks’ long history of dehumanizing rhetoric about autistic people, irresponsible financial practices, and unconscionable claim to represent autistic people without including any autistic people in their leadership. At this week’s Policy and Action Summit, Autism Speaks will once again be speaking about autistic people without autistic people. Autism Speaks is one of only a few major disability advocacy organizations that has not included a single individual with the disability it purports to serve on its board of directors.

Autism Speaks uses rhetoric of pity and fear about autistic people to raise millions of dollars that do not return to local communities and that fund research and policy agendas developed without any input from autistic people. It is long since time for the practice of speaking about people with disabilities without including us at the table to end. Autism Speaks does not represent autistic people, and we urge community members to stand against unscrupulous fundraising practices that remove money from our community and all other local communities where Autism Speaks holds Walk Now events. Only 4% of Autism Speaks’ budget goes towards the “Family Service” grants that are the organization’s means of funding services. While 44% of its budget goes toward research, only a small percentage of this research is aimed at improving quality of life for autistic people. Most of the research that Autism Speaks funds is instead devoted to causation and prevention.

We urge policymakers and community members interested in supporting autistic people and our families to support disability rights organizations led by disabled people and to reject Autism Speaks’ agenda of siphoning money away from local communities and into research that does not benefit autistic people. As autistic people, we deserve a national plan on autism developed with us included at the table at every step of the way. We deserve a national plan on autism that moves away from the language of pity, fear, and tragedy, and toward achieving equality, access, and inclusion in our communities.