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Autism Awareness Month

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April is Autism Awareness month. Here at NIMH, autism is a year-round priority. We’ve been busy on multiple fronts, from keeping track of existing programs, to planning the next set of initiatives, to working with our federal and public partners to ensure coordination of efforts. We are working hard because we know individuals with autism spectrum disorder (ASD) and their families are counting on us. I thought I would take some time during Autism Awareness Month to highlight some of the things we’ve been doing over the past year.

Autism coordination across the federal government

The Interagency Autism Coordinating Committee (IACC) continues to play an important role in ensuring open lines of communication across federal agencies and between the public, academicians, and government. Under the leadership of Dr. Susan Daniels, the NIMH Office of Autism Coordination (OARC) supports the IACC. Last year, the IACC released its 2016-2017 Strategic Plan for ASD. I encourage you to take a look at this document, which articulates many of the challenges faced by the autism community, current federal efforts in services and research, and gaps in knowledge and care that deserve our attention. The IACC called for additional resources to cover these gaps, and for continued cooperation and communication within and across agencies and with the relevant stakeholders.

Of course, communication is not enough. Accordingly, the Autism CARES Act of 2014 established the position of National Autism Coordinator to ensure that IACC recommendations are acted upon effectively. The National Autism Coordinator was also explicitly tasked with reporting to Congress on federal investments focused on people with autism transitioning from childhood to adulthood. This report, Young Adults and Transitioning Youth with Autism Spectrum Disorder, was released last summer. Kudos to then National Autism Coordinator Dr. Tom Novotny, and to Dr. Daniels and the NIMH staff who worked with Dr. Novotny in compiling the report, which outlines the need for research and services devoted to this crucial period in the lives of people with ASD.

Since that report, Dr. Novotny retired from federal service, but I am pleased to announce that NIMH’s own Dr. Ann Wagner has been appointed to succeed him. Dr. Wagner is the chief of NIMH’s Biomarker and Intervention Development for Childhood-Onset Mental Disorders program and serves as the Chair of the internal Trans-NIH Autism Coordinating Committee, which oversees autism-related research across the whole of the National Institutes of Health (NIH). Her expertise and knowledge about ASD will be of critical importance as she takes on this additional responsibility.

Early causes inspire early screening

A lot has been going on in the research world in terms of enhanced understanding of the origins of ASD. Last year, I wrote of the genetic and neuroimaging data providing evidence that autism starts early, most likely during early fetal development but certainly within the first year of life. In the past year, even stronger evidence has emerged in support of this hypothesis. In July, we learned that machine learning algorithms can analyze neuroimaging findings in 6- to 12-month-old infants at risk for autism and predict whether these children will go on to develop ASD. And in February, a comprehensive genetic analysis demonstrated overlap between risk genes for ASD and other psychiatric disorders. Of course, it is not just about genetics—environmental factors also affect risk, and also point towards neurodevelopment during gestation as the key period where the neuropathology of ASD likely begins.

These findings lead directly to our next steps. To ensure that we can translate these genetic, neurodevelopmental, and environmental clues into actionable knowledge, we need to be able to study individuals at risk from ASD as early as possible. Moreover, we know that early identification and enrollment of children with ASD into treatments and interventions increases the chances of better developmental outcomes. Both these goals will require early screening methods that will allow us to identify children at risk during their first year of life. With this in mind, NIMH brought together experts in studying early life correlates of autism to a February meeting to inform NIH staff on the most promising techniques for identifying ASD risk during infancy. This information on the state of the science will inform future NIMH-sponsored research efforts.

Autism in girls and women

Not only is April Autism Awareness Month, but on April 2, 2018, we recognized World Autism Awareness Day as proclaimed by the United Nations. Of note this year, the theme of this event is “Empowering women and girls with autism.” Although current estimates indicate that males are approximately 3-fold more likely to develop autism than females, the increasing recognition that autism and its symptoms and causes may manifest differently in females has drawn attention to the need for targeted research in this area. Accordingly, NIMH’s OARC, joined by our Office of Research on Disparities and Global Mental Health, sponsored a panel discussion on Autism in Girls and Women this past September. We have also made research on the subject a priority by renewing funding for an NIH Autism Center of Excellence with a specific focus on studying ASD in females.

These and other efforts underscore NIMH’s commitment to increase our understanding of ASD, with a laser focus on using this understanding to improve the lives of all those affected by autism.