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Federal Advocacy for Profound Autism

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."

download OUR Autism CARES One-pager

Autism CARES Heads to the House Floor

We are grateful that the House version of Autism CARES (H.R. 7213) includes an amendment that clarifies the need to include the full range of disabilities. The inclusion of people with profound autism in clinical research is critical to their health and hope, both now and in the future. The US House will vote on the bill this week. We hope it will pass, move through the Senate, and then reach the president's desk in short order. You can help by contacting your legislator again, asking them to ensure passage.

Pass Autism CARES in the US House

Updated September 16, 2024

Clear is Kind

We are grateful that the House version of Autism CARES (H.R. 7213) includes an amendment that provides clarity about the need to include the full range of disability. The Senate version (S. 4762) does not. It is imperative that the final version Autism CARES includes language that clearly addresses the ongoing exclusion of people with profound autism from clinical research.

Take Action to Improve and Pass Autism CARES

AUTISM CARES UPDATE

US HOUSE OF REPRESENTATIVES

As Autism CARES (H.R. 7213) continues to make its way through Congress, we are encouraged that your advocacy has had an impact.

At the May 2024 House Energy and Commerce Health Subcommittee's markup of the bill, the following language was added:

"...reflects the entire population of individuals with autism spectrum disorder, including the full range of cognitive, communicative, behavioral, and adaptive functioning, as well as co-occurring conditions and needs for support and services."

The House of Representatives will consider H.R. 7213 in the coming days.

Ask Your Representative to Co-sponsor Autism Cares

US SENATE

Autism CARES has been introduced in the Senate (S. 4762) and was heard in an executive session of the Senate Health, Education, Labor, and Pensions (HELP) Committee on July 31, 2024.

Read Our Hearing recap and take action here

public Comment on Caregivers

Caregivers of people with profound autism experience unique joys and challenges and frequently struggle to access even the most basic supports. Federal decision-makers must be aware of these experiences and take action to address the isolation immediately. The July 2024 IACC meeting offered the opportunity to provide public comment on this issue.

Read Our Comments Here

Autism and co-morbid conditions

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.