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Interactive Autism Network opens its doors to adults with autism
Date:4/2/2009

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 needwhile 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.


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Contact: Megan Lustig
mlustig@spectrumscience.com
202-955-6222
Kennedy Krieger Institute
Source:Eurekalert

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