Pediatric neurologists get a primer on the state of ASD research and care

Autism spectrum disorders (ASD) took center stage for the afternoon sessions of the annual Pediatric Neurology Update in April. The meeting, hosted by the Center for Neuroscience and Behavioral Medicine at Children’s National Health System, brings together 150-plus pediatric neurologists each year to discuss critical research and clinical care of pediatric neurological conditions.

Led by the Center for Autism Spectrum Disorders Director Lauren Kenworthy, Ph.D., the afternoon’s slate of presentations sought to give broad perspective of the current state of ASD research and treatment best practices.

“We know that the brain is different in autism, but many times we continue to define autism by behavioral traits,” Dr. Kenworthy told the crowd in her introduction. “Sitting between the brain and behavior often is cognition – how do you understand your world and interpret it?”

The afternoon’s presentations were organized to provide the audience with a clear picture of many facets of ASD research and treatment. Highlights included:

• Joshua Corbin, Ph.D., director of the Center for Neuroscience Research, offered “New Insights into the Neurobiologic Underpinnings of Autism,” which mapped out some of the biological mechanisms of autism.
• Adelaide Robb, M.D., and Dr. Kenworthy presented current clinical care outlines, with Dr. Robb focusing on pharmacological therapies and Dr. Kenworthy sharing successful strategies to improve executive functioning and day to day task management for school-aged children.

Attendees also received a taste of two current “hot topics” in autism research and care:

• Kevin Pelphrey, Ph.D., presented recent findings on “Gender Differences in Autism Spectrum Disorders: Girls with Autism” calling attention to the fact that the current diagnostic standards may not capture some female-associated phenotypes of ASD.
• Julia Bascom of the Autistic Self Advocacy Network brought the autistic person’s point of view to the table via her presentation: “Autism: Society and Government Challenges and Solutions,” which focused on her organization’s efforts to improve inclusivity in advocacy and research, which she sums up as, “Nothing about us without us.”

The session concluded with a real-world focused “Autism-Friendly Hospital Roundtable,” of six panelists from the clinical, advocacy, community and technology fields, who are all involved in hands-on practices to improve medical experiences for autistic children and adults.

• CASD’s Yetta Myrick talked about her work to engage families of autistic children in discussions of research and clinical care programs, including the start of CASD’s first-ever Stakeholder Advisory Board.
• Julia Bascom talked about some of the less-often discussed challenges for many autistic people who seek medical services.
• Kathleen Atmore, Psy.D., and Eileen Walters, MSN, RN, CPN, provided an overview of Beyond the Spectrum, the clinical service at Children’s National that coaches providers and families in techniques to reduce the stress of routine medical visits for patients with autism and other developmental disabilities.
• Amy Kratchman, director of the LEND Family Collaboration at Children’s Hospital of Philadelphia, talked about some of the autism-friendly strategies underway at her institution.
• Michael O’Neil, JD, MBA, founder and CEO of the GetWell Network, Inc., previewed how GetWell and Children’s National are partnering on a new tool that harnesses app technology to bring better information to autistic children and their families after a new autism diagnosis.
• Vijay Ravindran, CEO and co-founder at Floreo, demonstrated how it might be possible to reduce stress and create a calm peaceful autism-friendly environment even in the busiest of waiting rooms, by allowing the patient to escape via virtual reality.

The roundtable showcased how Children’s National and other health care institutions are using evidence-based strategies to improve medical care experiences for autistic people and their families. Ideally any provider, including pediatric neurologists, who cares for people from the autism community, can incorporate any or all of these strategies as a way to meet the unique needs of this patient population.

The content was so timely and relevant to the audience that many attendees stayed past the official end of the meeting to continue discussing best practices with the panelists and each other.