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Highlights from the Autism Speaks National Conference

Parents, providers and individuals with autism wrap up meeting dedicated to improving comprehensive care and support across the lifespan
July 28, 2013


Autism Speaks and its educational partners wrapped up their second National Conference for Families and Professionals in Columbus, Ohio, this weekend. Attendees included more than 400 parents, healthcare providers, educators and individuals affected by autism. They shared information and perspectives in scientific sessions and hands-on workshops.

Titled “Treating the Whole Person: Autism Care across the Lifespan,” this year’s conference focused on new approaches to providing comprehensive lifetime support and services. This included self-directed support for teens and adults with autism as well as guidance for families and professionals helping those with autism lead healthy and successful lives.

Sponsored by Autism Speaks, the conference’s educational partners included Nationwide Children’s Hospital, Ohio State University Wexner Medical Center, the US Health Resources and Services Administration and the American Academy of Pediatrics. Nationwide Children’s Hospital and the Wexner Medical Center are members of Autism Speaks Autism Treatment Network (AS-ATN).

Embracing a family-centered approach to care
“The theme of this conference – treating the whole person – reflected our goal of helping individuals with autism have healthy and successful lives at every stage of their lives” said Peter Bell, Autism Speaks executive vice president for programs and services.

In its second year, the conference also provided a forum for families and professionals to learn, side by side, about meeting the medical, developmental and support needs of those with autism.

“Using the whole person and family-centered approach that is the hallmark of the ATN care model, this conference addressed the unique set of challenges and strengths of individuals and families,” added Daniel Coury, medical director of the AS-ATN and the chief of developmental and behavioral pediatrics at Nationwide Children's.

This approach and attitude were highlighted by the conference’s keynote speakers. On Day 1, autism self-advocate and special education researcher Stephen Shore opened the conference with his keynote address “Creating a Fulfilling Life.” At Adelphi University, Dr. Shore teaches and conducts research on meeting the needs of those with autism by focusing on autism-related strengths.

On Day 2, pediatrician Paul Carbone, presented his guidelines on “Planning for Adult Medical Issues in Childhood and Adolescence.” Dr. Carbone practices at the University of Utah’s Neurobehavior HOME Program. (Follow the keynote title links for full coverage of each presentation.)

Science and hands-on workshops
Science sessions followed each keynote address to highlight recent advances in autism-related healthcare and services. The sessions included “Genetics for the Real World,” “Advances in Understanding GI in Autism” and pediatric autoimmune neuropsychiatric disorder (PANDAS). PANDAS is an autoimmune disorder that involves production of autoantibodies that attack the brain’s nerve cells. This can produce the sudden onset of anxiety and obsessive-compulsive behaviors, or tics. (Information on Autism Speaks research on PANDAS here.)

Each afternoon featured two parallel tracks of workshops designed for families and professionals. These included training sessions on providing comprehensive evaluations, integrating complementary and alternative medicine into treatment and management of psychiatric issues, among others.

Family workshops tackled a broad range of issues, including managing challenging behaviors, creating meal plans to ensure nutrition and working with a child’s care team.

“It’s so gratifying to hear individuals, families and healthcare providers describe how this conference enabled them to think through strategies that integrate comprehensive care and services in their daily lives and practices,” says Clara Lajonchere, Ph.D., Autism Speaks vice president of clinical programs. Dr. Lajonchere also served as chair of the conference planning committee.

Complete coverage of this year’s conference – including video blogs by presenters and parents – can be found here.

The Autism Speaks National Conference for Families and Professionals was made possible by the passion of Autism Speaks’ community of families, volunteers and donors. It received additional support through the AS-ATN’s role as the Autism Intervention Research Network on Physical Health (AIR-P), a federally funded program of the Health Resources and Services Administration.