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. Read More
On August 8, President Obama signed into law the Autism CARES Act (for Collaboration, Accountability, Research, Education and Support). The law ensures the continued work of the Interagency Autism Coordinating Committee (IACC), but it also brings new opportunities to focus attention on an area of concern for many parents—what happens when their children with autism spectrum disorder (ASD) mature into adulthood?
Autism Awareness Month arrives this year with a package of new, important research findings. Below I describe a few of these. The field is moving so rapidly that, by the end of April, there will likely be yet a new crop of findings—so this is, at best, a progress report for the beginning of Autism Awareness Month.
In 2007, Caryn James wrote in The New York Times that "autism has become to disorders what Africa is to social issues." This statement was intended to emphasize the emerging public recognition of autism during the preceding decade. But it was also a prescient comparison, for in the years since 2007, autism and Africa have become highly contentious topics with emerging movements that have polarized those involved and confused the broader public.
Every year the Interagency Autism Coordinating Committee (IACC) updates its Strategic Plan for Autism Spectrum Disorder Research, identifying progress and new opportunities across the range of autism spectrum disorder (ASD) research. Each year this task gets more difficult. In 2012, the speed of progress was so rapid that each draft of the Plan was out of date by the time the IACC reviewed it. The sheer volume of research was overwhelming. According to PubMed, there were over 1,000 ASD papers related to genetics or brain imaging since January 2011 – more than three times the number of papers from the same interval a decade ago.
Last week’s autism news was about prevalence. The CDC reported a 78 percent increase in autism prevalence since 2002. This week’s autism news is about genetics—three papers in Nature describe new genes associated with autism. For many people, these two stories seem contradictory or, at best, unrelated. Increasing prevalence suggests environmental factors like chemicals and microbes changing over the past decade, whereas genes change over generations. Why is anyone looking for genetic causes when there is such a rapid increase in prevalence? Shouldn’t every research dollar be invested in finding the environmental culprit rather than searching for rare gene variants?
Autism is always surprising. Earlier today, the CDC released new numbers from their ongoing surveillance of autism prevalence, the Autism and Developmental Disability Monitoring (ADDM) Network. What was once considered a rare disorder is now reported as affecting 1 in 88 children, 1 in 54 boys. These new numbers, up 78 percent from 2002 and 23 percent from 2006, raise immediate questions. Are more children affected or more detected? Does the increase reflect a growing problem, or do these new numbers reflect an improvement in our ability to diagnose and serve those affected?
Looking back over NIMH related events these past few months, one might wonder if this has been Autism Spring. It has certainly been a busy season for autism spectrum disorder (ASD): a White House meeting, unprecedented press coverage, and the largest International Meeting for Autism Research (IMFAR) to date. But perhaps most exciting has been the early scientific harvest evident in a series of high-profile papers published over the past two months. Some of these discoveries with autism have implications for mental disorders like schizophrenia and mood disorders, which increasingly are being addressed as neurodevelopmental disorders.
Today, the start of Autism Awareness Month, inspires us to focus on the highlights of our research progress and look ahead to further strengthening our investigative efforts. The Interagency Autism Coordinating Committee (IACC) published its annual Summary of Advances in Autism Spectrum Disorder (ASD) Research today and recently posted the annual update of its Strategic Plan for ASD Research. In addition, today the Department of Health and Human Services released its Report to Congress on progress made under the Combating Autism Act of 2006, which includes information on recent activities and developments in autism research. I will summarize some of the findings in these reports. But first let's take a look at the numbers.
The National Institute of Mental Health (NIMH) has made a substantial commitment to research designed to discover autism’s causes and improve diagnosis and treatment. Not only has NIMH become the lead institute for autism research at NIH, we have become the largest single source of funding for autism research in the country.
On October 5, 2009, researchers with the Health Resources and Services Administration (HRSA), Centers for Disease Control and Prevention (CDC), and Massachusetts General Hospital published a new estimate of the prevalence of autism spectrum disorders (ASD) among children in the United States. Published online ahead of print in Pediatrics, the new estimate that roughly 1 in 90 U.S. children ages 3–17 were given an ASD diagnosis in 2007 is significantly higher than previous reports