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Calls to Action

NAAR Active in Federal Autism Initiatives

The National Alliance for Autism Research (NAAR) is playing an active role in two significant autism research initiatives being sponsored by the federal government, including the National Institutes of Health (NIH).

The first project is an autism summit that takes place in November 2003, which focuses on developing a national agenda for autism research and services. The second initiative is the development of an online resource for the autism community being designed in partnership with the design group, CYKE.

Autism Summit

In a joint effort, the U.S. Department of Health and Human Services (HHS) and the U.S. Department of Education (DOE) have recently announced the agencies are sponsoring a conference entitled, Autism Summit Conference: Developing a National Agenda. The conference is scheduled to take place on Nov. 19 and 20 at the Washington Convention Center in Washington, D.C.

NAAR is playing a pivotal role in the planning of this conference. Andy Shih, Ph.D., NAAR's director of Research and Programs, has been named as a panelist of the summit and is helping to develop the biomedical research session of the conference.

In response to growing public health concerns regarding rising rates of autism, HHS and DOE are co-sponsoring this conference to engage in a public dialogue concerning issues such as implementation of optimal services, early screening and diagnosis, and biomedical research. The conference will include general keynote sessions from public officials, as well as targeted sessions to cover specific content areas.

This conference complements the activities of the several government organizations that have been participating in the Interagency Autism Coordinating Committee (IACC) since its inception in 2001. The IACC was formed in response to a mandate of the Children's Health Act of 2000 and will hold its regularly scheduled semi-annual meeting on the NIH campus on November 21.

Summit organizers are still developing details of the event, however the following sessions were agreed on at a planning committee meeting held on Sept. 12:

- The National Institute of Mental Health (NIMH) will coordinate a biomedical research session focusing on a research matrix featuring basic neuroscience, early diagnosis, and causes of autism.

- The Centers for Disease Control and Prevention (CDC) will coordinate a session on early diagnosis and examine early autism screening, diagnosis and treatment and the review the "ChildScreen" program.

- The Interagency Autism Coordinating Committee (IACC) and Department of Education (DOE) will coordinate a session on autism services, with focus on providing autism services throughout the lifespan.

NAAR will post and distribute more information on this important conference once it becomes available.

Online Resource for Autism

Dr. Shih has also recently been recruited to join some of the country's leading autism researchers as a member of the NIMH's CYKE Advisory Committee, which will help the Institute develop an one-stop, online resource for autism.

The NIMH has recently awarded the design group, CYKE a contract to create an Internet resource about autism. This website will serve as a central portal for information about autism that will be of primary interest to families, educators, and clinicians.

Joining Dr. Shih on NIMH's CYKE Advisory Committee are:

- David Amaral, MIND

- Dan Geschwind, UCLA

- Judith Grether, California Department of Health

- Lee Grossman, ASA

- Patricia Juhrs, CSAAC

- Gary Mesibov, UNC

- Nancy Minshew, University of Pittsburgh

- Joe Morrissey, UNC

- Donna Noyes, New York Department of Health

- Cathy Pratt, Indiana University

- Fred Volkmar, Yale University

NIMH Officers for this project are Dr. Enid Light and Dr. Ann Wagner.

Dr. Shih and other members of the advisory committee will help NIMH and CYKE develop and implement the new autism website and information portal. CYKE will work with NIMH and the Interagency Autism Coordinating Committee (IACC) to consolidate information about autism into a user-friendly, one-stop resource. In addition to the IACC, CYKE will coordinate information efforts with the American Academy of Pediatrics (AAP). During a previous project, CYKE produced an immunization information website for the AAP. Information about autism and immunizations were high areas of inquiry on this site.

Founded in 1997, CYKE is a media design company dedicated to the emotional and physical health of children that creates Internet sites, CD-ROMs, books, and videos for kids and the important adults in their lives (family, teachers, and health professionals). The firm was established through a grant from the National Institute of Child Health and Human Development (NICHD) and has received additional funding and contracts from the NIMH, the National Institute of Alcohol Abuse & Alcoholism, and the American Academy of Pediatrics to create useful, innovative resources for children and families. CYKE stands Cyber Knowledge Emotion.