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Take action to make sure research meets our community's needs!

August 24, 2023 | by sau1admin

ASAN logo. Text to the right of the logo reads ASAN Autistic Self Advocacy Network.

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:

  • Use the form

  • The form asks for your first and last name and an email address. You must put in this information in order to submit your comment.

  • There is a box you can type your comment in. Try to keep your comment under 1000 words.

  • You must be 18 years or older to submit a comment.

  • If you have questions about what you can say in a comment, the IACC has guidelines.

  • 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.

We also have a toolkit that goes into detail about the process in Easy Read and plain language! You can get ideas for potential topics from ASAN’s past comments. Comments are due September 28th!

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:

  • What are the biggest communication needs for non-speaking people?

  • What are the greatest roadblocks to supporting and improving communication for non-speaking people?

  • What are the highest priority research targets to advance communication for non-speaking people?

  • What are the best ways to increase partnerships between researchers and non-speaking people, to guide research projects?

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.

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