Autism research often focuses on what non-autistic people think is important. While self-advocates have been calling for more research that could materially improve the lives of autistic people, research funding on autism still disproportionately focuses on behavioral therapies, biomedical studies, and causation and “prevention.” Research priorities should reflect what the autistic community needs — and this month, we have the opportunity to tell the government what research should be prioritized, and where the gaps in funding are.
You can do this by submitting a comment to the Interagency Autism Coordinating Committee (IACC) by November 30th! Every year the government distributes funds for research on autism. The IACC makes recommendations about where those funds go and what research should be prioritized. The IACC is currently accepting comments on its strategic plan, asking for your thoughts on the research areas that IACC currently prioritizes — including which ones are most important to our community and need more funding, and which ones our community is concerned about. The autistic community needs to make our voices heard in these decisions. Nothing About Us Without Us!
Here is how to submit a comment on the IACC’s strategic plan:
- Use the form here
- There is a series of questions. You can answer the questions you want to answer. You don’t have to answer all of the questions.
- Use the navigation buttons to move between questions. This will let you edit your answers if needed.
- Your comments will only be recorded once you hit “Submit” at the end of the form.
- You will see onscreen a confirmation that your answers have been submitted
- You will not receive any email response or feedback from IACC right away.
If you need some ideas about how public comments sometimes look, you can check out ours for the most recent IACC meeting here!
It is critical to make sure autistic voices are heard in these discussions. IACC comments are often dominated by non-autistic family members and researchers, as opposed to autistic people ourselves. Research priorities should reflect our priorities — this is funding that should help us understand our community and how we can better support autistic people living our lives.
Submit your comments to IACC by November 30th. Your voice can make an impact that shapes how research works for our entire community.