Identifying Health Disparities in Young Women with Autism Spectrum Disorder through Patient-Centered Research

Background: Autism spectrum disorder (ASD) currently impacts 1 in 59 youth. Within this population, an estimated 450,000 youth with ASD ages 16-24 in the United States transition to adulthood. While ASD is thought to be more common in males than females, emerging literature shows that females with ASD may be under-diagnosed and receive much later diagnoses. This absence or delay in diagnosis can potentially result in severe consequences to health outcomes of females with ASD. Further impacting their health outcomes are the limited resources and treatments available upon transitioning to adulthood. Few studies have examined gender differences during transition to adulthood. Moreover, the existing studies predominately utilize quantitative methods. Thus, young women with ASD and their experiences are often unheard.

Objectives: The purpose of this study was to engage young women with ASD, caregivers, and stakeholders to identify health disparities encountered during the transition to adulthood.

Methods: A Patient-Centered Outcomes Research (PCOR) design was used to develop research capacity and build the infrastructure necessary to conduct future research responsive to the needs of females with ASD. Caregivers and females with ASD ages 15-32 were identified using purposive sampling to participate in monthly engagement groups over 12 months. Each engagement session included 8-14 females with ASD. Discussions centered on the unique challenges to females with ASD during the transition phase. Researchers collected field notes during engagement groups to capture the young women’s perspectives. An advisory board of patients and stakeholders met monthly to provide project guidance. Advisory board members included females with ASD, psychologists, healthcare providers, educators, caregivers, and researchers.

Results: Results of this study highlight the process of engaging young women with ASD, caregivers, and stakeholders to identify health disparities. Findings indicate disparities in the following domains for females with ASD transitioning to adulthood: mental health, LGBT, and gender-based healthcare differences. Participants also identified several patient-centered comparative effectiveness research proposals to address these domains, including better screening tools, peer navigators, and mentor models.

Conclusions: Healthcare transition from childhood to adulthood can be difficult for most, but especially for females with ASD. Little is known on gender-related differences during transition to adulthood and subsequent impacts on health outcomes. Findings from this patient engagement study are an initial step towards better understanding these disparities and overcoming them from a patient-centered outcomes research perspective. Results of this study have the potential to create change for young women with ASD within the healthcare field through patient-informed care. These findings are expected to form the basis for future research aimed to improve health outcomes of young women with ASD.