Supporting Neurodivergent Children in the Transition from Pediatric to Adult Healthcare

Families of neurodivergent children, such as those with autism, intellectual and developmental disabilities, attention-deficit/hyperactivity disorder and learning differences, often find themselves having to fiercely advocate for every service they need across medical, behavioral health and education systems.

Teen Transition to Adult Healthcare

When a child ages out of pediatric systems of care at age 18 or 21, it becomes even more challenging to access services. Many supports are limited or difficult to locate, and there are still relatively few adult medical providers who are trained, and more importantly, comfortable, caring for neurodivergent individuals, especially those with higher support needs.

Barriers to Accessing Care

Approximately 1.2 million autistic youth will reach the legal age of adulthood over the next decade and age out of pediatric care. 1A recent study highlights several challenges young autistic adults face when trying to see an adult provider, including deciding whether to share their autism diagnosis, interacting with medical staff who may not fully understand autism, communicating their needs effectively, and wanting their needs accommodated while still being treated as adults.2

Research with providers identifies several themes regarding barriers to access for adults with intellectual and developmental disabilities and communication differences, including:

  • Health literacy, understanding health information and screening
  • Fear and negative patient expectations
  • Impaired autonomy
  • Time constraints
  • Accommodation needs
  • Insurance coverage and financial hardship
  • Communication challenges
  • Coordination and continuity of care
  • Supporter presence and inclusion

Communication between providers, patients and advocates is a significant barrier for adults with intellectual and developmental disabilities and communication differences.3 In one study, more than 80% of providers reported wanting additional training, particularly in behavior and mental health management, and in communicating with adults with autism and intellectual disabilities.4

Ensuring Appropriate, Comprehensive Care

Research involving families and caregivers of young adults with autism and intellectual disabilities shows 82% experience moderate to high anxiety about the transition from pediatric to adult care, with 39% feeling “unprepared” for the transition.5 In many cases, families and caregivers say they are not provided with information about what to expect during the transition, how to access adult providers experienced in supporting patients with disabilities and how to coordinate care across services.

Caregivers, providers and patients with autism, intellectual disabilities and other significant support needs are seeking assistance.

Below are several ways to help ensure neurodivergent individuals receive appropriate and comprehensive healthcare as adults:

  • Free training for physicians and office staff on autism, intellectual disabilities and other neurodevelopmental disabilities
  • Sensory-friendly offices with visual supports, quiet waiting areas and other accommodations
  • Insurance incentives for providers to serve this population and promote their offices after receiving training
  • Sharing information about trained adult providers with families, advocates, support coordinators, case managers and waiver funders to help communities find qualified providers
  • Collaboration among health, disability and social services for transition planning and care coordination
  • Early transition planning with the full care team, starting at age 14

We can accomplish these goals together through ongoing collaboration among funders, providers, caregivers and self-advocates, making sure adult healthcare for individuals with disabilities is equal to the care received by neurotypical individuals. Often, it is caregivers who spark grassroots movements to make change happen. I am willing to try. Who will join me?

Amy Kelly, MBA, MNMAmy Kelly, MBA, MNM

Amy Kelly, MBA, MNM – Devereux’s national director of family engagement – is the mother to Danny, Annie and Ryan. Annie is diagnosed with profound Level 3 Autism, intellectual and developmental disabilities, verbal apraxia, and general anxiety disorder. Amy serves as a family advisor on several special needs boards in the community, locally and nationally. In addition, she participates with other self advocates and family partners in efforts supported by the Autism Care Network and serves on an executive committee and the Autism Committee for the American Academy of Pediatrics to assist children and adolescents with neurodiversity needs, advocacy and the importance of quality care.

Footnotes

  1. Anne M. Roux, Kyle Chvasta, Kiley J. McLean, Meghan Carey, Georgina Perez Liz, Liza Tomczuk, Kristina Lopez, Evva Assing-Murray, Paul T. Shattuck, Lindsay L. Shea; Challenges and Opportunities in Transitioning Autistic Individuals into Adulthood. Pediatrics November 2024; 154 (5): e2024067195. 10.1542/peds.2024-06719
  2. “I’m Not Trying to Be Difficult When I Can’t Do Things”: A Mixed Methods Look at Transitioning from Pediatric to Adult Health Care on the Autism Spectrum Authors: Briana P. Keller https://orcid.org/0009-0002-4060-3853 briana.p.keller@vanderbilt.edu, Laina Heacock, Emily Rothenberg, and Jessika C. BolesAUTHORS INFO & AFFILIATIONS Publication: Autism in Adulthood https://doi.org/10.1089/aut.2023.0093
  3. Shady, K., Phillips, S. & Newman, S. Barriers and Facilitators to Healthcare Access in Adults with Intellectual and Developmental Disorders and Communication Difficulties: an Integrative Review. Rev J Autism Dev Disord 11, 39–51 (2024). https://doi.org/10.1007/s40489-022-00324-8
  4. Urbanowicz, A., Parkin, T., van Dooren, K., Girdler, S., Ciccarelli, M., & Lennox, N. (2020). The experiences, views, and needs of health professionals who provide care to adults on the autism spectrum. Research and Practice in Intellectual and Developmental Disabilities, 7(2), 179–192. https://doi.org/10.1080/23297018.2020.1735943
  5. Culnane,E., Efron,D., Williams,K., Marraffa,C., Antolovich,G., Prakash,C., & Loftus,H. (2023). Carer perspectives of a transition to adult care model for adolescents with an intellectual disability and/or autism spectrum disorder with mental health comorbidities. Child: Care, Health and Development, 49(2), 281–291. https://doi.org/10.1111/cch.13040

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