They deserve the “same level of care that any other person deserves”: Caregiver perspectives on healthcare for adults on the autism spectrum

Abstract Background Adults on the autism spectrum are at high risk for co-occurring conditions and poor health outcomes, yet they often experience significant unmet healthcare needs. A better understanding of potential gaps and barriers is essential for improving the healthcare system. This mixed-methods study was conducted to better understand the healthcare needs and experiences of adults on the autism spectrum from the perspective of parents and caregivers. Method Twenty-four caregivers of adults on the autism spectrum (21 mothers, 2 fathers, 1 non-parent caregiver) completed surveys and participated in one of seven focus group interviews to share their perspectives regarding healthcare needs, experiences, and suggestions for improvement. Results Survey responses indicated general satisfaction with primary care; however, in-depth qualitative data analyses revealed four primary themes and 10 subthemes. The first theme focused on barriers to healthcare access and included insurance coverage, geographic distance, waitlists, and provider shortages. Caregivers also expressed dissatisfaction with healthcare quality (Theme 2), particularly a lack of provider knowledge resulting in inadequate treatment. Participants also emphasized the need for comprehensive and coordinated healthcare services (Theme 3), and described pressure on parents to advocate and coordinate care. Finally, caregivers stressed the importance of person-centered care (Theme 4), particularly the need for accommodations and rapport for adults on the spectrum. Conclusions These results indicate that the nature and quality of current healthcare services may not be adequate to meet the needs of adults on the autism spectrum. The suggestions provided by caregivers should be used to inform strategies for healthcare improvement.