Meanwhile, in America: From “Combating Autism” to “Autism CARES,” The Language Has Evolved. What About the Substance?

News

By Alessandra Suuberg

This fall in the United States, the federal government allocated $1.8 billion to autism research, authorizing a five-year extension of the Autism Collaboration, Accountability, Research, Education and Support (CARES) Act[1].

Autism CARES is the primary source of federal funding for autism research, services, training, and monitoring in the United States[2].

The New Law

Notably, as recently highlighted by the American publication Spectrum, the new Autism CARES Act:

1. Opens the door to research on autistic individuals “across their lifespan,” striking out a previous focus on children[1,3]; and
2. Does not allocate money to providing or improving services for the autistic community[1].

Whereas in 2016 only 2 percent of autism funding in the United States was directed toward research on adults[1], in 2019 Autism CARES’ focus has been expanded by a companion bill, S.427, to cover all ages[4].

Among other changes, the companion bill made amendments to call for:

• Research into the causes, diagnosis, detection, prevention, and treatment of autism: “[R]esearch [to] investigate the causes (including possible environmental causes), diagnosis or rule out, early and ongoing detection, prevention, services across the lifespan, supports, intervention, and treatment of autism spectrum disorder, including dissemination and implementation of clinical care, supports, interventions, and treatments”[3];

• Promotion of screening and interventions for all ages: “[P]romot[ion of] evidence-based screening techniques and interventions for individuals with autism spectrum disorder and other developmental disabilities across their lifespan”[3]; and

• Information on ways to ensure that autistic individuals are living, working, and participating in their communities: “[I]nformation on how States use home- and community-based services and other supports to ensure that individuals with autism spectrum disorder and other developmental disabilities are living, working, and participating in their community”[3].

The Effect

For the next five years, the Autism CARES Act will provide an annual $296 million to the National Institutes of Health, $23.1 million to the Centers for Disease Control and Prevention, and $50.6 million to the Health Resources and Services Administration. It will be up to these agencies and to investigators to determine how the funding translates into research affecting the autistic community[1].

The Evolution of Funding Priorities

Undoubtedly the language of autism funding has changed at the federal level since 2006, when Autism CARES was first introduced as the “Combating Autism Act”[4].

But how have the goals evolved, how have they been shaped by input from the community, and how does the community feel about current priorities?

The Combating Autism Act of 2006 was pitched as enhancing “research, surveillance, and education regarding autism spectrum disorder”; authorizing “research under [the] NIH to address the entire scope of autism spectrum disorder,” including Asperger syndrome, Rett syndrome, and other developmental disorders; and authorizing “activities to increase public awareness of autism, improve… evidence-based interventions, and increase early screening”[5].

The 2019 law examines services across the lifespan; requires that Centers of Excellence include research on psychology in addition to biology; and expands programs to cover communities in rural, underserved, or tribal areas, among other changes generally expanding the scope of who and what is monitored and studied[6].

Do these changes reflect an evolution of priorities that the autistic community wants to see?

Is anything missing?

For example, Spectrum points out that “[t]he 2019 Autism CARES Act does not support quality-of-life improvements for autistic people”[1]. Is it problematic to devote $1.8 billion in funding to research on and monitoring of a community without simultaneously taking steps to provide or improve services?

Molly Candon, a research assistant professor of psychiatry at the University of Pennsylvania, is quoted as commenting on the lack of funding in CARES for providing or improving services: “Without the ability to improve services delivery, there’s no point in doing the research. I don’t think this bill can be passed in a vacuum”[1].

How Does the Community Feel?

Ultimately this is a post on an American sub-topic, shared in a UK forum, and intended for consideration by a global community sharing an #ActuallyAutistic identity.

Information about this specifically American law is relayed in order to raise broader questions for both U.S. readers affected by Autism CARES and for readers abroad, where other laws may apply:

• To what extent do the funding priorities where you live reflect your personal priorities?
• What do you feel needs funding?
• What do you feel is a waste of funding?
• What would improve your quality of life?
• Beyond participation in research, how do you make your voice heard in policy discussions?

Laws like these affect you, and you should have a say.

References

[1] Westman, N. (2019, Oct 10). U.S. funnels funds into research related to autistic adults. Spectrum. Retrieved from https://www.spectrumnews.org/news/u-s-funnels-funds-into-research-related-to-autistic-adults/?utm_source=Copy+of+Spectrum+News+(Daily+Report)&utm_campaign=37533e38d4-EMAIL_CAMPAIGN_2019_10_09_07_00&utm_medium=email&utm_term=0_5d6f652fd5-37533e38d4-168420941

[2] Autism CARES Act. (n.d.). Retrieved from https://www.autismspeaks.org/autism-cares-act

[3] S.427 – Autism CARES Act of 2019. Retrieved from https://www.congress.gov/bill/116th-congress/senate-bill/427/text?r=29

[4] Fact Sheet: Autism CARES Act. (2019). Retrieved from https://www.autism-society.org/wp-content/uploads/2019/05/Autism-CARES-Act-Fact-Sheet-2019-2.pdf

[5] Fact Sheet: Combating Autism Act of 2006. (2006, Dec). Retrieved from https://georgewbush-whitehouse.archives.gov/news/releases/2006/12/20061219-3.html

[6] Detailed Summary of the Autism CARES Act of 2019. (2019, Oct 1). Retrieved from https://www.autism-society.org/wp-content/uploads/2019/10/Detailed-Summary-of-the-Autism-CARES-Act-of-2019.pdf
Author Bio

Alessandra Suuberg works part-time as a healthcare attorney and part-time as an ABA therapist, among other roles, and has previously worked for research groups interested in the genetics of autism. In transition from a career in patent law to healthcare, her goal is to be an effective advocate for clients by interrogating the laws and programs that affect them from multiple angles.

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