Autism Research: Nothing About Us, Without Us!

A person writing in a notebook with a blue ballpoint pen.

Today, the new membership of the Interagency Autism Coordinating Committee (IACC) was announced. The IACC is a committee that advises the federal government on autism issues and oversees federal autism research spending. Since its creation, ASAN has called for greater self-advocate representation on the IACC, and urged the IACC to take action to rebalance autism research spending and direct the focus of the federal government away from unethical goals and towards supporting autistic people across the lifespan. The new membership of the IACC represents significant progress over past years, but much more remains to be done.

ASAN is excited to see a larger and more representative cohort of self-advocates than ever before. For the first time ever, one third of the IACC’s public membership are self-advocates. These self-advocates include self-advocates of color, a full-time AAC user, and a self-advocate with an intellectual disability. Many of the self-advocates are themselves also parents of autistic children or representatives of autism organizations; ASAN is pleased to report that our Legal Director, Sam Crane, has returned for an additional term. 

At the same time, the self-advocacy movement has long maintained that the membership of an advisory body regarding autism should be majority autistic people. ASAN also calls for more equitable representation of AAC users, self-advocates with co-occurring intellectual disabilities, and self-advocates of color. It should not have taken until 2021 to have any such representation to begin with. While the new membership represents real progress, it is only a first step towards creating an IACC that serves our community’s needs. Representation by itself is not enough; the IACC must also address the many serious ethical problems with federal autism research spending and policy. 

As ASAN outlined in our most recent comments submitted to the IACC, autism research spending remains heavily invested in research of dubious moral and scientific integrity, aimed at preventing autism and forcing autistic children to suppress their autistic traits. Only about 6% of federal autism research spending goes towards research to understand autism across the lifespan and support autistic people to live good lives. The autistic community has been calling attention to this imbalance for years. It is time for the IACC, and the federal government as a whole, to listen. The IACC should use its role as an oversight and coordinating body to change how the federal government funds research, and Congress should use the next reauthorization of the Autism CARES Act to do the same.

As the IACC meets for its new term on July 21st, ASAN urges the committee members to take action to ensure that autism research truly helps improve the lives of autistic people. We will continue to work with federal policymakers, Congressional offices, and autism researchers themselves to do the same. When it comes to research about our lives, the autistic community is clear: there can be nothing about us, without us!

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!