Autistic Adults’ Experiences Seeking and Receiving Support for Mental Health and Suicidal Thoughts and Behavior
Bibliographic record
Abstract
Background: Autistic adults have a high incidence of mental health challenges, including suicidal thoughts and behavior (STB). Our objective was to gain a nuanced understanding of autistic adults’ experiences in seeking and receiving support for their mental health, including STB, presented in a format that could be operationalized to improve service provision for autistic adults. Methods: We applied an integrated codesign approach involving autistic adults at every stage of the research, acknowledging them as experts on their own lives. Thirty-three autistic adults with a history of STB participated in semi-structured narrative interviews, discussing their experiences seeking and receiving support for their mental health. We analyzed data using reflexive thematic analysis. Results: We constructed an overarching theme, “We Don’t Know What We Don’t Know,” representing the bidirectional misunderstandings that occur between health care providers and autistic people. Within the overarching theme were four central themes: (1) Communicate with Me (understanding the uniqueness of autistic communication); (2) Understand Me (developing a nuanced understanding of autism and being autistic); (3) Help Me to Understand Myself (developing self-understanding); and (4) Support Me (empowerment when supported). We constructed an underpinning theme, “Trust and Safety,” representing the need for psychological safety in all domains of mental health care. We centered the lived experiences of autistic adults to acknowledge the need for autistic people to feel safe and for service providers to build trust to effectively support the mental health of autistic adults. Conclusions: Our analysis demonstrates the need to facilitate access to mental health care and improve the quality and effectiveness of service utilization for autistic adults. Recommendations include improving understanding of and communication with autistic people, embedding education, cultural humility, and psychological safety, acknowledging power imbalances, adapting interventions, and validating autistic experience. Our thematic map serves as a framework to inform and improve health care services for autistic people. Community Brief Why is this an important issue? Autistic adults often experience great difficulty accessing services for their mental health. They may also not benefit from health care services as much as nonautistic people if the services are not suited to their needs. This is important because autistic adults can experience more mental health challenges than nonautistic people. Compared with the general population, autistic adults also experience more suicidal thoughts and behavior. This includes higher rates of suicide death. Improving mental health services for autistic adults may improve their quality of life and prevent suicide. What was the purpose of this study? We wanted to understand the experiences of autistic adults when they looked for support for their mental health, including experiences of suicidal thoughts and behavior. We wanted to find out how to improve support for autistic adults with mental health challenges. What did the researchers do? We asked 33 autistic adults who had previously experienced suicidal thoughts or behavior about their experiences seeking support for their mental health. We asked them who they reached out to for support, what the experience was like, and what could be improved. An autistic researcher analyzed these conversations to identify common themes between the research participants. We looked for problems with health care services that might make it difficult for autistic adults with mental health challenges to access and receive appropriate support. What were the results of the study? We found that challenges accessing health care services included: (1) communication between autistic adults and service providers, (2) (mis)understanding of autism and autistic people, (3) difficulties autistic adults experience in understanding themselves and their support needs, and (4) finding appropriate services and supports. We found that misunderstanding between autistic adults and health care service providers was common, and that autistic people may not feel safe when using mental health care services. This made it very difficult for autistic adults to receive the support they needed for their mental health. What do these findings add to what was already known? Our findings build on previous research through our development of a new framework. This framework can be used to identify gaps between what is provided by health care services and the unmet needs of autistic adults. We suggest that health care providers can use this framework to critically assess their service offerings from the perspective of people with lived experience. What are potential weaknesses in the study? We excluded autistic adults with intellectual disability and complex communication needs from our study. Our results might not apply to autistic people who have those challenges. We also excluded self-identified autistic adults, even though this group also experiences more mental health challenges than nonautistic people. How will these findings help autistic adults now or in the future? Our findings can be used to help health care service providers to better understand and meet the needs of autistic adults.
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How this classification was reachedexpand
Full frame machine prediction
Teacher imitationNot calibrated prevalence, not ground truth. Human validation pending. The Gemma side is a direct model label for every work in the frame, read from the title-only record. The Codex side is a classifier learned from the 10,348 direct Codex labels and calibrated to design-weighted sample rates; fields without enough sample support carry no Codex call. Candidate is the union of the two sides; consensus is their intersection. These outputs are machine_predicted_unvalidated and are not human labels.
Distilled classifier scores by category (both heads)
| Category | Codex | Gemma |
|---|---|---|
| Metaresearch | 0.001 | 0.004 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.000 | 0.000 |
| Bibliometrics | 0.001 | 0.000 |
| Science and technology studies | 0.003 | 0.002 |
| Scholarly communication | 0.001 | 0.001 |
| Open science | 0.000 | 0.003 |
| Research integrity | 0.001 | 0.001 |
| Insufficient payload (model declined to judge) | 0.002 | 0.000 |
Machine scores (provisional)
The two teacher heads of the student model, read on this work. A score orders the frame for review; it never asserts a category, and the validation status ships verbatim with every row.
Baseline scores from an immature model (maturity gate not passed, 7 training rounds). Scores rank; they never assert a category.
score_only:v0-immature-baseline · verbatim from the scoring run: score_only means the number may rank works, and no category label ships from itClassification
machine, unvalidatedMachine predicted; a candidate call from one source (direct Gemma or distilled Codex), not a consensus.
How this classification was reached, model by model and score by score, is at the end of the page under "How this classification was reached".