By Thomas Insel on April 2, 2015
April is National Autism Awareness Month – a time when we come together as a community to recognize the contributions and needs of individuals on the autism spectrum, and renew our commitment to provide supports and opportunities that will help them succeed. This is a good time to take stock of what has been accomplished in the past year for both science and services related to autism spectrum disorder (ASD). It has been a busy and exciting year.
Last summer, The Autism Collaboration, Accountability, Research, Education and Support Act of 2014 (Public Law 113-157) (PDF File) or CARES Act was signed into law. The CARES Act renewed the Interagency Autism Coordinating Committee (IACC), the federal advisory body that coordinates autism research and services activities across federal agencies and between federal and private funders. As the previous members of the IACC completed their term of service in September 2014, we are currently awaiting the appointment of new members so the committee can resume its work under the CARES Act. When the IACC reconvenes, we anticipate that the committee will continue to gather public input and provide timely advice to the Secretary of Health and Human Services, while expanding its strategic planning and monitoring efforts to address in greater depth both the research and services needs of individuals with ASD and their families.
Since the last meeting of the IACC, there has been no shortage of new activities or public-private coordination. In September, NIMH announced 15 new grant awards for research to enhance services for children, transition-age youth, and adults with ASD. This $15M effort was launched to catalyze the services research field to focus on ASD as a new opportunity for innovation. Last month, a joint meeting of the Simons Foundation, Autism Speaks, the Autism Science Foundation, and three NIH institutes developed a joint effort for biobanking, synergizing the private Autism BrainNet with the NIH NeuroBioBank. This effort will create a national repository for tissue specimens that can be used for ASD research, fulfilling a priority identified in the IACC Strategic Plan for ASD Research. A project coordinated by the Foundation for NIH has addressed the need for biomarkers in ASD, also called for in the IACC Strategic Plan. Working with the European Union - Autism Innovative Medicines Study (EU-AIMS), a US-based group of scientists have been designing a global effort on biomarkers via a public-private partnership. Identification of biomarkers holds promise for improving both diagnosis and treatment of ASD.
What’s new from the autism research world in the past six months? Three examples suggest the complexity of ASD and the need to think about the “autisms” rather than a single disorder.
- Genomic research continues to dig deeper into the risk architecture of ASD, although the answers now emerging from whole genome sequencing mainly suggest even more heterogeneity, or diversity among individuals, than expected. The first large scale such study published in February, reported ASD-relevant mutations in 42% of ASD families, but in nearly 70% of families with two affected siblings, the siblings had different mutations. It appears that even within a family, individuals with ASD may have different genetic risk factors
- New results from the Norwegian Maternal and Child Cohort Study of over 100,000 babies recruited around 18 weeks of gestation and followed prospectively show that infants and toddlers with autism have higher rates of gastrointestinal symptoms and food allergy/intolerance compared to those without autism, though specific symptoms vary among individuals.
- A double blind, randomized, placebo-controlled study of the phytochemical sulforaphane showed positive effects in young men with moderate to severe autism. Improvement, while modest, was evident in both parent/caregiver and physician ratings of social behavior and aberrant behaviors. The mechanism is unclear, but sulforaphane, made from broccoli sprout extracts, has been used as an antioxidant. As we continue to evaluate potential therapies for ASD, it will be important to keep a long-term focus toward development of personalized treatments that will address the diverse needs of individuals on the autism spectrum.
While we celebrate Autism Awareness Month every April, our work on ASD continues throughout the year, with the intensity building each year. I suspect that some of the most important breakthroughs that will help advance autism research may come from cross-cutting projects like the BRAIN Initiative, the Developing Human Connectome Project, or new studies of environmental effects on early development—projects not specifically about ASD, but likely to yield critical tools or insights that will help us reduce the complexity of ASD.
The last few months have been an especially busy time for collaboration between federal agencies and private organizations working to advance research on the “autisms,” and more generally, neurodevelopmental disorders and disabilities. In addition, the services research and delivery field has continued to evolve. We look forward to reconvening the IACC soon to share updates and continue working together to accelerate research and strengthen services to meet the needs of the autism community.
The IACC is a Federal advisory committee that was created by Congress in an effort to accelerate progress in ASD research and services. The IACC provides advice to the U.S. Department of Health and Human Services on activities related to ASD, and works to improve coordination and communication across the Federal government and work in partnership with the autism community. The Committee is composed of officials from many different Federal agencies involved in autism research and services, as well as people with ASD, parents, advocates, and other members of the autism community. The documents and recommendations produced by the IACC reflect the views of the Committee as an independent advisory body and the expertise of the members of the Committee, but do not represent the views, official statements, policies or positions of the Federal government. For more information on the IACC, please visit: www.iacc.hhs.gov.