From Childhood to Independence: A Needs Assessment for mHealth Interventions for Women with Autism and Their Caregivers

Abstract

The transition to adulthood is a pivotal life stage for women diagnosed with Autism Spectrum Disorder (ASD) that is marked by challenges which include, but are not limited to, the transition from pediatric to adult healthcare, securing employment and higher education, and navigating romantic relationships and sexuality. Caregivers also play a very important role during this period, but some suffer from burnout, stress, and a lack of adequate resources to provide proper care. There is a lack of existing interventions and research focused on young female adults with ASD and their caregivers. To address this disparity and provide effective support, creating tailored interventions for these specific populations is essential. In this work, we investigated the needs of young women with ASD and their caregivers through semi-structured interviews with eleven participants, three of which were subject matter experts and eight were caregivers. The thematic analysis revealed four key barriers faced by women with ASD and their caregivers: (1) transitioning to adult healthcare, (2) navigating romantic relationships and sexuality, (3) lack of guidance on employment, higher education, and independent living options, and (4) burnout and well-being among caregivers. The findings from this needs assessment aim to guide the design of a targeted mHealth intervention for women with ASD and their caregivers.