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Federal Advocacy

People living in the profound autism community may struggle to get to Washington, D.C., but they are still important constituents who need and deserve to be heard. We are committed to ensuring authentic, respectful, and effective representation of profound autism on the federal level.

Autism CARES

Recently, the Autism CARES Reauthorization Act of 2024 was introduced in Congress. This legislation originated in 2006 and authorizes funding for autism research and programming.

Profound Autism Alliance supports this reauthorization but strongly advocates for accountability and clarity, particularly related to the allocation of funding specific to people with profound autism who require 24/7 care.

And it's not just us who is saying this. Our advocacy aligns with the February 2024 GAO Report on Autism Research and Support Services: Federal Interagency Coordination and Monitoring Efforts Could Be Further Strengthened, which states:

To promote the health and well-being of people with autism, the National Institutes of Health helps coordinate the activities of 18 federal agencies—including research on contributing factors and training on how to screen patients for autism.

NIH has followed several key practices to coordinate agency programs and activities but could do more. For example, NIH could track its progress toward goals to help agencies better allocate resources where they are most needed.

Take Action on Autism CARES

download OUR Autism CARES One-pager

Interagency Autism Coordinating Committee

If you love someone with autism who needs lifetime, 24/7 care, then you may have experience with things like:

Seizures
Self-injury
Obsessive Compulsive Disorder
Gastrointestinal Issues
Insomnia

These are just some of the conditions that people with profound autism often struggle with.

Few answers or resources are available. Why? Because people with profound autism aren't generally included in clinical research. This means solutions that are helpful for them aren't even part of the conversation.

It's time to change that.

Recently, the federal committee that makes recommendations to Congress about autism asked to hear about these types of experiences.

After reaching out to stakeholders in the profound autism community, the Profound Autism Alliance submitted the following feedback to the IACC, directly referencing our community's experiences.

Read Our Comments Here