The Autistic Self Advocacy Network strongly condemns the President’s regressive World Autism Awareness Day proclamation, and the announcement that the White House will be participating in Autism Speaks’ “Light It Up Blue” campaign. After a decade of progress in which public conversations about autism have increasingly shifted away from tragedy and fear and towards acceptance and inclusion, the White House’s actions signal a disturbing attempt to drag autistic people back to the margins. ASAN will not let our community be forced back to the too-recent time when the public consensus was that autistic people should not exist.
President Trump’s proclamation pledges that his administration will encourage “innovation that will lead to new treatments and cures for autism.” Such a goal is widely outside the consensus of the self-advocate community, which has long since concluded that the concept of a “cure” for autism is profoundly unethical and leads to dangerous and even deadly consequences for autistic people. It is also out of line with the consensus of the scientific community, which has recognized the idea of cure as scientifically implausible. Research towards “cure” does not help autistic people or our families, and after decades of protest from autistic people, the public has begun to realize that a world without autistic people is not an ethical or desirable goal. The Trump administration’s attempt to revive the idea of cure is a dangerous fringe position.
Furthermore, the current research agenda is already heavily and disproportionately skewed towards biomedical research and away from the research that has the most potential to help autistic people. In 2012, the last year for which data is available, 55% of NIH autism research funding went towards research on the biology or causation of autism. Less than 2% of NIH autism funding went towards research on services, and less than 1% went towards research on the needs of autistic people across the lifespan. The President’s emphasis on medical treatment and “cure” threatens to narrow those tiny slivers of the pie chart even further – and his plan to cut funding to the NIH will certainly shrink the size of the pie.
The proclamation also announces that the White House will be participating in Light It Up Blue, an annual event in support of Autism Speaks. Autism Speaks has no significant autistic leadership and has never been aligned with the needs and priorities of the autistic community. Autistic people do not need our government to change how buildings are lit; we need it to ensure our access to health care, education, and employment. Neither Autism Speaks nor the current administration have made our rights and our lives a priority. In its first 70 days, the Trump administration has already tried to repeal the ACA and gut Medicaid funding, policies which would leave many autistic people across the country without health care and without the services we need to live in our communities. Autism Speaks has not acted to stop any of this, but has chosen instead to ally themselves with a White House grounded in prejudice.
The White House’s actions this April only serve to shine a bright blue light on the many ways in which the administration has systematically worked to increase stigma against autism and discrimination against autistic people. A hopeful message for autistic people has nothing to do with hollow “awareness” campaigns or dated and dangerous calls for a “cure”. There are real, achievable, and affirming things to hope for in our lives. The autistic community carries a long history of abuse, institutionalization, discrimination, and other forms of violence. Our strength and our resilience have lifted us up and driven us forward for generations. ASAN works towards a future in which all autistic people are accepted and included in our communities, have access to effective communication, and live free from discrimination. We will continue in this work, even and especially when the White House attempts to turn back the clock.
The Autistic Self Advocacy Network is a 501(c)(3) nonprofit organization run by and for autistic people. The Autistic Self Advocacy Network seeks to advance the principles of the disability rights movement with regard to autism. ASAN believes that the goal of autism advocacy should be a world in which autistic people enjoy equal access, rights, and opportunities. We work to empower autistic people across the world to take control of our own lives and the future of our common community, and seek to organize the autistic community to ensure our voices are heard in the national conversation about us. Nothing About Us, Without Us!