P3A041: “i’m Not Trying to Be Difficult When I Can’t Do Things”: Transitioning from Pediatric to Adult Healthcare on the Autism Spectrum

Background: Individuals on the autism spectrum are significantly more likely to utilize healthcare services compared to the general population. Despite this, they report many challenges to accessibility. Struggles commonly cited by autistic adults visiting healthcare providers include difficulty communicating with the provider, sensory processing challenges in the environment, and provider misconceptions about autism and its scope of impacts. An ever-salient concern in the field of pediatric medicine is the difficulty of the transition from pediatric to adult healthcare. Late adolescence and early adulthood are developmentally vulnerable periods for typically developing individuals, and especially challenging for those on the autism spectrum. During this transitional period from childhood to adulthood, and pediatric to adult healthcare, patients need to be active participants in their healthcare and decision-making regardless of diagnosis. This requires both an accessible environment and providers who are willing and able to involve patients as members of the healthcare team. Therefore, the purpose of this study was to examine the healthcare experiences and perceptions of autistic young adults transitioning from pediatric to adult providers.

Methods: Two-hundred and thirteen autistic individuals between the ages of 18 and 26 years participated in an online REDCap survey about their healthcare experiences and perceptions of transition readiness. Quantitative analyses included descriptive statistics to characterize the sample and investigate relationships to transition readiness. Qualitative content analysis was used to explore participants’ experiences with healthcare and transition as iterated in open-ended question responses.

Results: A total of 213 individuals participated. Mean age was 22, 77.9% were white, and 78.8% reported having one or more comorbid conditions. While the majority of participants (73.2%) agreed providers overall understand their needs and abilities as autistic individuals, only 59.6% stated medical environments are accessible to them, and 36.1% said they are involved as active participants in their own care. Themes identified in qualitative coding included encountering providers with outdated or stereotypical views of autism, receiving dismissive or invalidating responses when voicing health concerns, and struggling to express themselves due to a combination of sensory overload and lack of processing time. Participants indicate a desire for healthcare providers to presume competence while recognizing their challenges and limitations as developmentally vulnerable individuals.

Conclusion: Access to and participation in healthcare in general is challenging for autistic young adults, and navigating transitions from pediatric to adult healthcare is noted as especially difficult. Providers can support patients in this period by implementing neurodiversity-affirming care that involves adolescents and young adults as active participants in their own care. Further research is needed to identify strategies that are most beneficial for providers and patients.