Revitalizing the Federal Response to the Autism Crisis:
It’s Going to Take a Village and All of the Villagers

By Lisa Wiederlight, M.P.P., SafeMinds Executive Director

During two weeks of Summer 2018, the Autism Action Network (AAN), SafeMinds, Talk About Curing Autism (TACA), and the Thinking Mom’s Revolution (TMR) asked autism community members what they thought of the Federal Government’s response to the autism crisis, primarily through the Interagency Autism Coordinating Committee (IACC), which is leading the charge to address it. There really wasn’t any way for us to imagine just how ineffective, unaccountable, and exclusionary the autism community believes the IACC to be. The 2018 IACC Stakeholder Survey reaffirmed a lot of what we already thought was problematic.

Since the Federal Government began facing the autism crisis directly in 2000, autism has increased over 120 percent, from 1 in 150 American children, to 1 in 59 today. Also since 2000, there have been no causes of autism identified, and no treatments found, either. One wonders what benchmarks for performance have been set for the IACC, and how it could be allowed to continue just by preparing reports and a research strategy that has no clinical implications or focus on patient outcomes. Especially given the costs of failing to address autism—a University of California-Davis study found that autism is on track to cost up to $1 trillion by 2025 in medical, nonmedical, and productivity losses.

I’m not a researcher, but I am a mother of a young adult with autism, and I hold an advanced degree in public policy. I am particularly frustrated when I attend IACC meetings. It seems like there is no consideration for what families go through to help their children thrive; no urgency in addressing the commonly co-occurring medical conditions that result in a decreased average lifespan for people with autism; and no care for people with autism who are self-injurious, who need safe and affordable housing, who lack appropriate jobs, who need safe and affordable transportation, who require appropriate training for public safety and criminal justice system professionals; and who need good healthcare options. It would be so easy to design goals, objectives, and outcome measures in a National Autism Strategy that can be reviewed and updated annually, given all the problems our community faces
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The IACC, for the first time, is providing a way for people to provide remote public comment at its January 2019 meeting, after actually discussing SafeMinds written testimony at its last meeting. The testimony reported our Survey findings, including that people did not provide public comment at IACC meetings because they could not afford to travel to Washington, DC, and because they could not find child care for their loved ones with autism. Change can happen slowly—but we need drastic change because of the urgency of the problems we face.

Now that autism affects 1 in 59 Americans (or 1 in 40, depending on which agency does the counting), the time for a Federal response that focuses primarily on activities such research coordination is over. The U.S. General Accounting Office (GAO) has issued two critical reports, one in 2013 and one in 2017, which reinforce that it’s time for an inclusive, proactive, accountable, and effective response for addressing the crisis.

When asked if the IACC’s work was improving the lives of people with autism and their families, over 56 percent of respondents in our 2018 IACC Stakeholder Satisfaction Survey stated “no,” and approximately 38 percent said that they did not know. When asked if the IACC members represented their interests when it comes to addressing autism in the United States, nearly 60 percent of the 1,402 respondents answered “no.” While 33.38 percent of respondents said “I don’t know,” only seven percent stated “yes.” It’s probably because they haven’t been asked.

We need a new solution.

First, we need congressional hearings on the Federal response to the autism crisis before discussions continue on the reauthorization of the Autism CARES Act in 2019. Sallie Bernard, SafeMinds board president and co-founder has stated, “the IACC has failed to produce a response to the current autism crisis commensurate with its scope and depth. Accordingly, our country now has many more Americans with autism, and less resources with which to address their needs.” We need to review what has and hasn’t worked, and re-assess resource allocation for this growing number of people who have complex needs.

Second, the autism community needs a full-time autism coordinator to focus on addressing the autism crisis. Given that autism is not only a health issue, but also a housing, education, public safety, education, criminal justice, employment, and homeland security issue, it isn’t appropriate for this person to work for the U.S. Department of Health and Human Services. Instead, this person should work for the agency-neutral Executive Office of the President. This will minimize agency turf battles, and facilitate effective coordination.

Third, the autism coordinator should lead a small Office of National Autism Policy Coordination, which can be staffed with detailees from other Federal agencies. Also placed in the agency-neutral Executive Office of the President, the Office would be responsible for producing a National Autism Strategy, with measurable goals, objectives, and outcomes. The Office will report annually to Congress on its progress in addressing the autism crisis, as defined in the Strategy document. The Strategy will focus its policy and research on prevention, treatments, and services for people with autism and their caregivers. The IACC, or its support organization, the Office of Autism Research Coordination, can support the Strategy’s development relating to autism research recommendations.

It’s Going to Take A Village, and All of the Villagers

Revitalizing the Federal response to the autism crisis will take time, energy, and passion. Join us, stay tuned, and we’ll let you know soon how you can be a part of the solution.. Thank you for your support.