Interactive Autism Network Opens Its Doors to Adults with Autism

April 2, 2009
Interactive Autism Network Launches Research Initiative for Adults, Unveils New Look for Growing Online Community

Update: 04/08/2009: NPR's Morning Edition features IAN Project

(Baltimore, MD) - The Kennedy Krieger Institute will commemorate the two-year anniversary of the Interactive Autism Network (IAN), www.IANProject.org, with the much-anticipated launch of its research initiative for adults and the unveiling of a more user-friendly, easily navigated online community. Launched in April 2007 as the first national autism registry, the IAN Project has become the largest pool of autism data in the world, with registration expected to reach 30,000 individuals during Autism Awareness Month.

Having already uncovered new insights and aided hundreds of research studies about children with autism, the IAN Project is now enrolling adults with autism in hopes of using the same proven research model to address the many unanswered questions about this underserved population. Adults with autism can now have their voices heard through the IAN Project in order to help researchers gain a clearer picture of how they are living today. Adult participation meets a significant unmet need-while the number of adults living with autism grows every day, little is known about them. There hasn't been a comprehensive, national effort to find out what services adults with autism are in need of, or to document the ways they contribute to society. In fact, there is no official estimate of how many adults with autism are living in the U.S. today.

"By expanding the IAN Project beyond children, we will provide much-needed insight that will ultimately enable caregivers, the community, legislators, advocates and researchers to better serve adults with autism," said Dr. Paul Law, Director of the Interactive Autism Network at the Kennedy Krieger Institute in Baltimore, Maryland. "By surveying and registering adults with autism, the IAN Project will be able to gain a clearer picture of how adults with autism are living today, and connect them with researchers who are working to understand the disorder at all stages of life."

The IAN Project is also unveiling a new look for its online community, which with its unique model of information exchange and community interaction has facilitated the most comprehensive collection of evidence-based information on autism available to parents on the Web to date. The new design allows users to more easily navigate through the site, and highlights the depth of resources available to the autism community. From the community homepage, users can quickly see the most recent research articles written by prominent autism experts, the latest autism news and what discussions are currently taking place in the community forums.

"We're proud of the trusted, comprehensive resource we have created for the autism community. Because of the volume of participation in the site it became important to redesign the interface to make the wealth of information available through the IAN Project more accessible. The enhanced site will make it easier for stakeholders in the autism community to locate resources and connect with others affected by autism," said Dr. Law.

Additionally, the IAN Project continues to generate new insights into autism and shed light on issues of critical importance to the autism community. Research highlights from 2008 include:

  • Defining the Spectrum: Having meaningful autism spectrum diagnostic categories is essential to treatments and research. On March 18, 2009, the IAN Project published a paper in the Journal of Autism and Developmental Disorders that described the varied pattern of autism diagnosis across the country and over time (1994-2007). This information is being used by scientists to better define the best way to diagnose autism. Better autism diagnoses will lead to better treatments and more finely tuned research.
  • Parental Depression: More than 44 percent of mothers and 28 percent of fathers of children with autism report they have been professionally diagnosed with either depression or bipolar disorder at some point in their lives, with more than 50 percent reporting diagnosis before the birth of their child(ren) with autism. This statistic is striking when compared to the estimated lifetime prevalence in the U.S. population for major depressive disorder of 16.2 percent and for bipolar disorder of 1 to 2.1 percent.

The IAN Project is funded by Autism Speaks, a non-profit organization dedicated to increasing awareness about the growing autism health crisis and raising funds for critical autism research. To register or learn more, visit www.IANproject.org.

About Autism

Autism spectrum disorders (ASD) is the nation's fastest growing developmental disorder, with current incidence rates estimated at 1 in 150 children. This year more children will be diagnosed with autism than AIDS, diabetes and cancer combined, yet profound gaps remain in our understanding of both the causes and cures of the disorder. Continued research and education about developmental disruptions in individuals with ASD is crucial, as early detection and intervention can lead to improved outcomes in individuals with ASD.

About the Kennedy Krieger Institute

Internationally recognized for improving the lives of children and adolescents with disorders and injuries of the brain and spinal cord, the Kennedy Krieger Institute in Baltimore, MD serves more than 13,000 individuals each year through inpatient and outpatient clinics, home and community services and school-based programs. Kennedy Krieger provides a wide range of services for children with developmental concerns mild to severe, and is home to a team of investigators who are contributing to the understanding of how disorders develop while pioneering new interventions and earlier diagnosis. For more information on Kennedy Krieger Institute, visit www.kennedykrieger.org.

About Autism Speaks

Autism Speaks is the nation's largest autism science and advocacy organization, dedicated to funding research into the causes, prevention, treatments and a cure for autism; increasing awareness of autism spectrum disorders; and advocating for the needs of individuals with autism and their families. Autism Speaks funds more than $30 million each year in new autism research, in addition to supporting the Autism Treatment Network, Autism Genetic Resource Exchange, Autism Clinical Trials Network, Autism Tissue Program and a range of other scientific and medical programs. Notable awareness initiatives include the establishment of the annual United Nations-sanctioned World Autism Awareness Day on April 2 and an award-winning, multi-year national public service advertising campaign with the Ad Council. Autism Speaks' family services efforts include the Autism Video Glossary, a 100 Day Kit for newly-diagnosed families, a School Community Tool Kit and the distribution of community grants to local service providers. Its government relations department, through its Autism Votes initiative, has played a critical role in securing federal legislation to advance the federal government's response to autism, and has successfully advocated for insurance reform to require insurers to cover medically-necessary autism therapies. Each year, Autism Speaks Walk Now for Autism fundraising events are held in more than 70 cities across the country, as well as Canada and the United Kingdom.

Megan Lustig
202.955.6222
mlustig@spectrumscience.com