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This study illuminates the experiences of adults diagnosed with autism spectrum disorders (ASDs) and intellectual disabilities (IDs) and their challenges and successes in receiving quality healthcare services. Individuals with developmental disabilities often experience health issues associated with aging at earlier ages and at higher rates than the general population. This population has a higher incidence of chronic health conditions that require regular medical attention.

The intent of this project was to learn directly from adults and their caregivers how well healthcare providers understand autism, explore their experience with how well their care is coordinated between primary healthcare and other specialty services, and identify factors which could impact access to care and to discover what other barriers which may potentially influence health outcomes for ASD adult.

A qualitative study conducted with semi-structured interviews with 12 adults diagnosed with ASD and/or their guardians/caregivers.

Some of the adults interviewed experienced negative health outcomes and suboptimal relationships with healthcare providers; others seemed to have positive relationships. Clinical and communications accommodations were necessary to make healthcare provision more comfortable. Barriers to accessing healthcare services existed in many forms.

The healthcare needs of the growing population adults diagnosed with ASD/ID are anticipated to be significant. This challenge is further exacerbated given there are few trained healthcare providers who are prepared or dedicated to serve this population. Continuing to build awareness of the health needs of the ASD/ID adult population is critical.

This project is highly innovative as it is the first attempt to understand how the adult autism population accesses care and perceives their healthcare interactions. This study serves as a starting point to suggest new opportunities for further research for this growing population.