As the holidays wind down, the ASAN team is reflecting on the efforts we’ve made to move the bar on autism research. Nothing about us without us applies in all places where our community goes — and that includes research about autism! The support from our community members makes this work possible, and we hope you’ll include ASAN in your end of year giving.

In 2022, we pushed for IACC, Lancet and other research organizations to put in the work to include people with developmental and intellectual disabilities in their research. This includes doing research on what accommodations people need in order to fully participate in research. Our community deserves to have our voices heard. Research institutions must be deliberate about including multiply-marginalized people as key contributors. This includes nonspeaking autistic people and autistic people with intellectual disabilities, as well as autistic LGBTQ+ people, people of color, elders, immigrants, and refugees, among others.

During Autism Acceptance Month, we published a statement on genetic research and autism. In that statement, we emphasized that eugenics is unacceptable. We talked about the fact that our genes shouldn’t be used without our express consent and there must be clearer controls around how genetic research information is stored, accessed, and used. We talked about how genetics research should never be used towards finding a “cure” for autism, and how that pursuit can hurt autistic people. We want research to focus on improving autistic people’s lives and the society we live in.

We’re grateful to all the people who have supported us this year, and as we ready ourselves to continue the fight to center the voices of autistic people in research about us in 2023, we ask you to help make this work possible. As 2022 draws to a close, you can help us make autism research work for autistic people by including ASAN in your end of year donations.

This year, we also created “Autism Research and the IACC: Your voice matters!” — a toolkit to support self-advocates submitting their own commentary and feedback to the Interagency Autism Coordinating Committee. The IACC is a federal committee that gives recommendations for how federal autism research funding should be spent. The IACC needs to hear from as many autistic people as possible about what issues impacting our community need more research.

In 2023, we will continue to push for research organizations to include our community in their work. We will not accept research that is not community-based. Autistic people’s needs, lives, and perspectives must be included in order to make any work about our community truly meaningful. 

Your support is crucial in allowing us to make these resources and push for research institutions to pay attention to and include the voices of autistic people in their work. Thank you for being a part of our fight to make our community heard and understood. 

Help us continue fighting for the inclusion of autistic people in research about us in 2023 by making an end of year gift. Together, we can continue pushing for research that improves the lives of autistic people.

Autistic Self Advocacy Network

PO Box 66122
Washington, DC 20035

 

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