Congressional Staff Learns About the "Future of Autism"

“The Future of Autism” was the topic of the recent briefing held in cooperation with the Congressional Children’s Health Care Caucus and the Congressional Autism Caucus. Congressional staff who focus on health care issues were able to hear from experts in the field who provided and overview of autism spectrum disorder (ASD) and shared examples of how treatments and testing are changing as parents, pediatricians and other childcare professionals are learning more about the condition.

Joining Lynda Honberg, director of strategic partnerships for Family Voices, at the front of the room were:

  • Susan E. Levy, MD, MPF, FAAP, acting chief of the division of developmental and behavioral pediatrics at the Children’s Hospital of Philadelphia,
  • Jennifer L. Stapel-Wax, PsyD, associate professor, Emory University School of Medicine; director of Infant Toddler Clinical Research Operations, Marcus Autism Center, and
  • Bryan H. King, MD, MBA, professor and vice chair of Pyschiatry and Behavioral Sciences; director, Seattle Children’s Autism Center; director of child & adolescent psychiatry, University of Washington & Seattle Children’s Hospital

Starting with Ms. Honberg, each speaker discussed the types of challenges families face when caring for children with ASD. These challenges can be as simple as early diagnosis and intervention to assisting children as they transition to young adulthood.

The CDC estimates that about 1 in 68 children in the U.S. has been identified with ASD. Unfortunately, there is a serious gap between the number of available providers in the U.S. to treat these children. An estimated 1 in 3 kids must travel 40 miles or more to see a developmental behavioral pediatrician. To add to the travel issues, children must wait an average wait of 14.5 weeks before seeing a specialist.

With the median age of diagnosis at five years-old, studies show that 80 percent of children who are in need of an early diagnosis are missed. To help combat this issue, Stapel-Wax shared some new technologies that are being used to test children as young as 10 months for signs of autism. From there, pediatricians and other experts in early intervention can develop an intensive and individualized treatment program that could help change the developmental trajectory of these children.

With the lifetime of cost of care for a child with ASD estimated at $3.5 million, King and his colleague are trying to find ways to help children transition to adults as smoothly as possible. Recognizing that services need to change as children get older, King spoke about how teens graduating from high school have a tendency to fall between the cracks as they switch to adult medical care. To help close these gaps, Seattle Children’s Hospital opened the Alyssa Burnett Adult Life Center as a resource.

Overall, with the breakthroughs in both science and intervention, the future of autism looks brighter than it has ever looked. As each of our panelists pointed out, we must continue to educate and to help close gaps within the system in order to ensure a healthy future for our children.

Follow @SpeakNowforKids on Twitter for information about upcoming briefings and twitter chats focusing out pediatric health care issues.

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