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Autism caucus holds briefing on the importance of early intervention

October 28, 2015

At a congressional briefing hosted by the Congressional Coalition for Autism Research and Education, experts discussed the importance of early intervention for children with autism and Sesame Street’s new character with autism, Julia.

The briefing, moderated by Angela Lello, Director of Housing and Community Living at Autism Speaks, highlighted the importance of early intervention for children with autism spectrum disorder (ASD). The briefing also examined the science behind early intervention and other tactics to address the daily challenges for children with ASD and their families. The briefing also went behind the scenes in Sesame Workshop’s three-year process to create Julia, the first character with autism, whose story went viral after her announcement on October 21st.

Expert panelists included Dr. Jennifer Stapel-Wax, Psy.D. who is an Associate Professor in the Division of Autism and Related Disorders Department of Pediatrics at Emory University School of Medicine and Director of the Infant and Toddler Clinical Research Operations Marcus Autism Center at Children’s Healthcare of Atlanta. Also on the panel was Dr. Jeanette Betancourt, Ed. D., Senior Vice President for U.S. Social Impact at the Sesame Workshop.

The panel addressed the growing prevalence of children diagnosed with ASD and the significant strides in scientific research that permits earlier diagnosis and interventions. The Centers for Disease Control and Prevention (CDC) estimates that 1 in 68 children have been identified with ASD, a 30% increase since the last report in 2012. The CDC also reported that intervention has the greatest impact on autism if it begins before three years of age, yet 80% of children who could benefit from early intervention are missed.

“Early diagnosis and intervention are critical in addressing the developmental needs of children with autism,” said Lello, “unfortunately, children with autism and their families still face significant barriers to accessing inclusive high-quality early intervention and childhood programs.”

Expert panelist Dr. Jennifer Stapel-Wax, Psy. D. emphasized the critical need for early intervention based on her two decades of experience in clinical work. Dr. Stapel-Wax also discussed barriers to early screening and detection, the core components of intervention for infants and toddlers, different types of intervention, and best practices. Dr. Stapel-Wax explained that early intervention can reduce the cost of lifelong care by two-thirds for an individual with autism. She also mentioned that access to early intervention before the age of three makes it more likely for a child with autism to enter into typical educational settings, which could lowering the cost of education over the lifespan.

Senior Vice President for the U.S. Social Impact at the Sesame Workshop, Dr. Jeanette Betancourt ED.D., shared the process for creating the character Julia. The character was introduced alongside the program called “See Amazing in All Children,” an initiative headed by the nonprofit educational organization, behind Sesame Street, called Sesame Workshop, that helps to provide support to families, teachers, and caregivers around the country.

“See Amazing in All Children” aims to increase understanding, reduce stigma, and demonstrate the commonalities that children with autism spectrum disorder (ASD) share with all children. Sesame Workshop also develops tools and resources for families of children with ASD to help them reduce the stress of everyday routines, such as brushing teeth, getting dressed, trying a new food, or playing with other children. 

“To have true inclusion, you must first begin with understanding and awareness from the earliest of ages,” said Dr. Betancourt, “you cannot have prevention without education”.

In April 2014, Sesame Workshop joined forces with Autism Speaks and other like-minded partners, to develop the community engagement initiative to help reduce the stigma surrounding children with autism. The same year, Sesame Street’s Abby Cadabby joined Autism Speaks co-founders, Suzanne and Bob Wright, to light the Empire State Building blue for World Autism Day.

Co-chairs of the Autism Caucus, Representatives Chris Smith (NJ) and Mike Doyle (PA), requested the Obama Administration establish an initiative designed to achieve a goal of lowering the national average age of diagnosis for children with autism. Legislative offices in attendance were asked to support this initiative and educated on possible actions to support early intervention programs and autism awareness.