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Autism Policy Reform


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Unlocking Autism

The Autism Policy Reform Coalition (APRC) has been steadily working on behalf of its constituent organizations (Focus for Health Foundation, The Thinking Moms’ Revolution, SafeMinds, Defending Academic Integrity and Research Foundation, Generation Rescue, The Autism Trust, Autism is Medical, Autism Think Tank, and Unlocking Autism) to enact national policy that will have a positive effect on autism’s prevalence, severity, and its impact on both those who live with it and the society at large.

As we move into 2017, we thought it would be a good time to announce some of the achievements and advances in national autism policy that APRC was instrumental in bringing about.

It’s no secret that APRC is made up of organizations that have been highly critical in the past of national autism policy as legislated by the Combating Autism Act of 2006, and later only slightly altered by the Autism CARES Act of 2014. Among other things, we are concerned about the composition and lack of efficacy of The Interagency Autism Coordinating Committee (IACC), but perhaps the most important concern for our organizations is that science funding has never even come close to the proportions recommended in the IACC’s Strategic Plan. The proportions recommended in the Plan are determined by the members of the Committee. They are reasonable and achievable, yet every year the vast majority of spending on scientific research has gone into genetic studies that have repeatedly failed to yield any helpful conclusions. More than 100 genes have been identified that contribute to autism risk (not necessarily in a causal way), and research indicates that there could be another 700 or more genes involved. Of course, large-scale, well-designed studies have been indicating that autism is not a “genetic disorder” in the way that Down syndrome or sickle cell anemia are genetic in nature, and that the heritability of autism spectrum is really due to a complex interplay between genetic predispositions and environmental exposures. So, it should not be in the least surprising that there is no “autism gene” or even group of “autism genes.” The only surprise is that these studies continue to be funded in the amounts they are.

The IACC’s Strategic Plan has wisely included substantial funding for research into environmental factors that could be causing or exacerbating autism spectrum disorders in at least a substantial portion of those with autism. Despite the Strategic Plan, however, the science on environmental factors has been consistently underfunded to the tune of $30 million a year. Therefore, one of APRC’s major goals has been to ensure funding for more environmental causation research.

In 2016, we made major strides in that direction. While Congress is reluctant to tell scientists what they should study, we were nevertheless able to convince the Senate Appropriations Committee to include language in their Report accompanying the Appropriations Bill encouraging the National Institute of Environmental Health Sciences (NIEHS) to study environmental factors in autism causation, particularly with respect to regressive autism, and an additional $29 million was added to NIEHS’s budget. We have had discussions with NIEHS in an effort to influence the types of projects that are funded with this money, and we encouraged the members of our constituent organizations to send their suggestions and concerns to Linda Birnbaum, Director of NIEHS.

Crafting effective national policy is not accomplished overnight, and creating the kind of change we wish to see takes long-term sustained effort. We have been very grateful to receive the majority of our funding for 2016 from Barry Segal of Focus for Health Foundation. While we run a lean budget for a national lobbying organization, we have had some major impact in key areas, some of which shall be revealed at a later date. However, we are delighted to be able to report that for 2017, the Senate Appropriations Committee Report includes three different paragraphs directing the NIEHS, the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), and the National Institute of Mental Health (NIMH), to perform research that the APRC regards as important for improving the lives of people with autism, and reducing the incidence of new cases (Senate Appropriations Report 114-274).

With respect to the National Institute of Diabetes and Digestive and Kidney Diseases (page 89), the language concerns an area which many doctors and individuals have found to be of vital importance in alleviating autism symptoms and improving quality of life, but which has been largely ignored by the NIH to date, despite recent research on the microbiome highlighting intriguing new insights:

“Autism.—The Committee urges NIDDK to study the relationship between GI diseases and Autism Spectrum Disorders.”

With respect to the National Institute for Environmental Health Sciences (pages 97-98), “onset patterns” are mentioned for the first time:

“Autism.—The Committee urges the NIEHS, as the lead agency on environmental health research and a member agency of the Interagency Autism Coordinating Committee [IACC], to ask the IACC to consider research on environmental factors related to autism, including onset patterns, in the upcoming revision to the IACC Strategic Plan for Autism Research. In addition, as the lead NIH Institute on Autism Spectrum Disorders research, the Committee suggests that NIMH work in coordination with NIEHS to assure that research on environmental factors continues to be supported.”

And to the National Institute of Mental Health (whose Director chairs the IACC as autism is –  erroneously in APRC’s opinion – considered a “mental health disorder”) (page 102) the Report specifically suggests research on environmental factors related to regressive autism:

“Autism.—As the lead agency on Autism Spectrum Disorders policy, the Committee urges the NIMH to include research on environmental factors related to autism, especially regressive autism, in the upcoming revision to the Strategic Plan for Autism Research.”

While the paragraphs in this Report may not seem like a very big deal, the reality is that Appropriations are extremely important to the scientific institutes that made up the National Institutes of Health. This is where they get the money they need to conduct research. A recommendation from the Committee, especially one that comes with an increase in funding, is taken very seriously by the particular Institute to which it’s directed.

We hope that all our hard work at APRC to date will pay off with even more accomplishments to report by the end of 2017!

If you’d like to help us carry out this important mission, please consider making a contribution to help defray our operating costs.