Research should include autistic people and benefit us.
We need more research that helps autistic people live our lives. But most autism research focuses on trying to find out what causes autism, in order to prevent or “cure” it. This is not research that autistic people want. It doesn’t help autistic people that are here now. More money needs to be given to research that helps us, like research on communication, community living, education, and health care for autistic people.
Community Based Participatory Research
ASAN supports Community Based Participatory Research (CBPR). This means that members of the community help make the research projects that are about us. Researchers and the autistic community can work together to help make our lives better. To learn more about CBPR, you can visit the website of the Academic Autistic Spectrum Partnership in Research and Education (AASPIRE, http://aaspire.org), which ASAN is proud to be a part of.
Interagency Autism Coordinating Committee
IACC, short for the Interagency Autism Coordinating Committee, provides feedback on where federal spending on autism research should be spent. When public comments are open, we provide an action alert that explains how you can leave a public comment. You can learn more about the IACC and how to submit a comment with our resource, Autism Research and the IACC: Your voice matters! You can view our current action alerts here.
Statement on Genetic Research
As genetic research continues to develop, autistic people must have our say in how it should be used, and not used. ASAN is against any research that tries to find a cure for autism. We don’t think that autism can or should be cured. Instead of wasting time and money on something that isn’t possible and that autistic people don’t want, we should focus on supporting autistic people to live good lives.
Scientists should never use genetic research for eugenics. Any autism research about genetics must be lead and controlled by the autistic community. It is important to disabled people and other marginalized people that scientists never use genetic research for eugenics. We think there should be more protections against discrimination based on genetics.
For more information, you can read our full statement on genetic research here.
- ASAN’s Community Living Summit: What Autism Researchers Should Study (Easy Read) Easy Read
- ASAN’s Community Living Summit: What Autism Researchers Should Study (Plain Language) Plain Language
- ASAN’s Ethical, Legal and Social Implications of Autism Research Symposium
- Community Concerns Regarding the Google-Autism Speaks Ten Thousand Genomes Program (AUT10K)
- ASAN Comments on the Clinical Use of Human Germline Genome Editing
- Autism Research: Nothing About Us, Without Us!
It is more important than ever to make sure autism research reflects what matters to all of us. Make your voice heard by submitting a comment to the Interagency Autism Coordinating Committee before each meeting! Learn more about the IACC, and how to submit a comment, with our new resource!
For Autism Acceptance Month 2022, ASAN is releasing a statement on genetic research and autism. Written in plain language, this statement gives background information on autism research, lays out ASAN’s concerns about genetic research as applied to autism, and recommends safeguards to make sure that any genetic research on autism is done by and for…
This document is available as a PDF here. In December 2021, ASAN responded to a report by The Lancet on the future of autism services and research which included a brief recommendation to create an administrative clarification called “profound autism.” You can read that response here. 14th February 2022 We wish to address the Lancet…