Mental Healthcare Experiences of Autistic Adults: Using First-Hand Perspectives to Inform a Clinician Training Program

Background: Many autistic adults struggle with psychiatric disorders; however, little is known about their personal experiences navigating the mental healthcare system and their satisfaction with services. Oftentimes, these adults face a “services cliff” when they exit high school, with limited options for treatment. A shortage of trained clinicians is one of the most commonly reported barriers to quality mental healthcare for adults on the spectrum. No prior studies have interviewed autistic adults about their recommendations for improving the mental healthcare system to meet their needs.

Objectives: The objective of this community-partnered study is to learn from autistic adults about their experiences with mental healthcare, in order to inform a training program for clinicians working with this population. We aimed to obtain an in-depth understanding of specific clinician characteristics and actions that contribute to negative or positive mental healthcare experiences for adults on the spectrum.

Methods: To date, we have completed semi-structured interviews with 15 autistic adults spectrum (12 male; mean age 36 years, age range 19-56 years). By December 2017, we will have a final sample of 20 adults; this target sample size is considered more than sufficient to reach thematic saturation in qualitative research. All participants are age 18 years or older with the verbal abilities to complete a one-hour interview. The interview questions ask about the adult’s experiences and needs related to mental health treatment, along with recommendations for training clinicians to better serve this population. All interviews are audio-recorded and professionally transcribed for analyses. Analyses are guided by grounded theory, which provides a rigorous, systematic approach to collecting and analyzing qualitative data.

Results: Participants expressed varying degrees of satisfaction with their mental healthcare experiences. Preliminary data provide important insights into difficulties with finding quality psychiatric treatment, particularly in community mental health settings. A common theme is the perception that clinicians rely too much on pharmacological treatment. Participants offered recommendations for clinicians to improve their interactions with adult clients on the spectrum, including modifying the environment to account for sensory sensitivities, using concise and direct language, being comfortable with silence as the client may need additional time to process information, and providing more psychoeducation about emotions. Almost every participant shared stories about not feeling understood, validated, or respected by mental health providers. For example, according to one young woman: “I think a lot of people that I know on the spectrum have this experience of feeling really invalidated. The therapist thinks that the way to go is to make us more typical. . . That's not helpful.”

Conclusions: This study is one of the first to obtain first-hand perspectives from autistic adults about navigating the mental healthcare system. These findings directly inform priority training needs for clinicians working with this population, with a focus on better understanding how core autism symptoms affect in-session interactions and treatment progress. Effective mental health services could significantly improve the quality of life for many adults on the autism spectrum.