Meta-Synthesis of Autistic Adults’ First-Person Perspectives About Mental Health-Related Services

Abstract

Background: Autistic adults are at high risk of co-occurring mental health disorders, including depression, anxiety, nonsuicidal self-injury, and suicidality. Existing services are not adequately meeting autistic adults’ mental health needs. To better inform evidence-based care, there is a need to synthesize and integrate autistic people’s perspectives about the mental health-related services they receive. Methods: Using the PRISMA method, 40 studies of first-person experiences for autistic adults about mental health-related services met inclusion for this systematic review. Electronic database searches in PsycINFO and PubMed were conducted up to July 2023. Studies needed to be published, qualitative or mixed-methods, and had to include self-report of autistic adults who had experiences with mental health-related services. Original articles were reviewed, coded, and analyzed in line with a modified critical constructivist grounded theory approach. Results: Twelve studies inquired about participants’ experiences and needs with general services, and 28 studies explored participants’ experiences with specific services such as specific mental health interventions, support groups, or social-focused interventions. Our analyses of the 40 studies revealed five categories with regard to autistic clients’ perspectives on their mental health services: (1) to be more tailored to their individual needs, (2) to provide more accommodations in both format and content, (3) to include more practical support, in addition to emotional support, (4) for providers to have both knowledge of the heterogeneity of autism and humility in their work, and (5) to encourage and embrace a sense of autistic identity and community. Conclusion: Our results offer practical changes that clinicians can make to improve their services and create a better experience for autistic adults. Notably, our analyses highlight that too often the services autistic people receive focus on changing them, rather than on changing or coping with the environment. Diversity in participants was a limitation across our studies (participants were majority White, in a Western-based country, and did not have a co-occurring intellectual disability), and future research should ensure greater diversity in first-person perspectives. Community Brief: Why is this an important issue?: Autistic adults frequently experience mental health challenges such as depression and anxiety. Unfortunately, autistic adults are not satisfied with their care and report that their experiences with mental health services are not compatible or effective for what they need. What was the purpose of this study?: To improve the quality of care, it is important to understand what autistic adults want from their mental health services. Our purpose is to provide practical recommendations to mental health clinicians working with autistic adults. What did the researchers do?: We conducted a systematic review of 40 studies that gathered firsthand experiences of autistic individuals about mental health-related services. The studies included autistic first-person perspectives on general mental health service needs, as well as perspectives on specific mental health-related services such as counseling or psychiatric services, support groups, or psychotherapy groups. What were the results of the study?: From our analysis, we identified several categories to answer the question: what do autistic adults want from their mental health-related services? 1. Mainstream mental health services should be made available to autistic clients as autistic clients often do not qualify for such services. Clinicians should tailor services to autistic client’s skill set, needs, and age, and not based on stereotypes of autism. 2. Clinicians should offer accommodations to address the unique needs for autistic clients, including the following: Sensory needs: make changes in the environment such as lights, sounds, or offer telehealth options. Time expectations: offer longer duration of sessions or greater number of sessions given the difficulty of getting used to a new clinician. Communication needs: offer options to accommodate different communication styles such as using written or visual information or slowing down when speaking. 3. Autistic clients may need pragmatic support such as filling out a form, figuring out job benefits, or problem-solving house situations. Clinicians should be flexible in supporting their client’s practical needs or referring to services that are tailored toward practical support. 4. Clinicians should know about autism and have the humility to honor the autistic client’s lived experiences. Clinicians should understand the heterogeneity of autism. 5. Clinicians should use a strength-based approach within the neurodiversity paradigm and not a medical-based approach to help clients explore and understand their autistic identity. Autistic peer support groups and groups that are led by a neurodivergent clinician are often better at embodying that approach. What do these findings add to what was already known?: An important finding is that autistic adults want services that focus on exploring their identities and managing the stressors of living with a disability in an ableist society, instead of changing the adult’s characteristics. What are potential weaknesses in the study?: The population sample included in the study was not very diverse. Participants were majority White, in a Western-based country, and did not have a co-occurring intellectual disability. How will these findings help autistic adults now or in the future?: Our results offer practical recommendations for clinicians so that autistic adults can have a more helpful and affirming service experience.