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The autistic and nonspeaking communities are often left out of setting priorities for funding research. This means that research often doesn’t reflect our entire community. Research about us should benefit us - we’ve got two ways you can help make that happen.
One way is to submit comments to the Interagency Autism Coordinating Committee (IACC)! The IACC advises on federal funding for autism research. They make recommendations on how autism research funding is prioritized.
Here is how to submit a public comment to the IACC:
The other way we’re encouraging you to share your opinions is writing in response to a request for information from the National Institute on Deafness and Other Communication Disorders (NIDCD).
The NIDCD is looking for people who care about communication for AAC users and nonspeakers to respond to these questions:
You can answer some questions, or all of them! Answers can be from a personal, service delivery, or research perspective. This request for information is inclusive of nonspeakers who are not autistic as well.
We encourage people submitting answers to review Communication First’s Plain Language explainer about research, including research about AAC.
Communication First also made a guide sharing why the request for information matters to AAC users. It has questions to help you think about what you’d like to say. It also explains how to submit your answers.
Submit your input. If you can’t use the form, it provides an email to send your answers.
Comments are due September 15th.
Autistic people, nonspeakers, and autistic nonspeakers’ input in what should be researched is long overdue. Let’s make sure the IACC and NIDCD know - when it comes to research, there must be nothing about us, without us!
To learn more about The Autisitic Self Advocacy Network (ASAN) check out their website.