Introduction
Suicide is a major public health concern, and autistic adults are at a higher risk of suicidal thoughts and behaviours than the general population. However, most of the research on suicide in autism is based on the perspectives of non-autistic researchers and clinicians, which may not capture the lived experiences and needs of autistic people.
To address this gap, the author of this paper, Mirabel Pelton, conducted a participatory research project with autistic adults who have experienced suicidal thoughts or behaviours. The aim was to explore how existing suicide theories apply to autistic people, and to co-produce new insights and recommendations for suicide prevention and support.
Methods
The project involved 12 autistic adults who were recruited through online platforms and support groups. They participated in three phases of data collection: an online survey, an online focus group, and an individual interview. The data were analysed using thematic analysis, and the findings were presented to the participants for feedback and validation.
The project also adopted a partnership approach, which means that the autistic participants were involved in all stages of the research process, from design to dissemination. The author consulted with the participants on the research questions, methods, ethics, analysis, and outputs. The participants also contributed to the creation of a comic strip and a podcast to share the project’s findings with wider audiences.
Results
The project found that existing suicide theories, such as the interpersonal theory of suicide and the integrated motivational-volitional model, have some relevance for autistic people, but also some limitations. For example, some of the risk factors identified by these theories, such as thwarted belongingness and perceived burdensomeness, may be influenced by the social and environmental barriers that autistic people face, rather than by their intrinsic characteristics.
The project also generated new insights and suggestions for suicide prevention and support for autistic people, such as:
- Recognizing the diversity and complexity of autistic experiences and identities, and avoiding stereotypes and assumptions
- Providing accessible and tailored information and resources on suicide and mental health for autistic people
- Developing and evaluating interventions that address the specific needs and preferences of autistic people, such as peer support, self-care strategies, and crisis planning
- Improving the awareness and skills of professionals and services that work with autistic people, and ensuring that they are respectful, compassionate, and inclusive
- Promoting the involvement and empowerment of autistic people in research, policy, and practice, and valuing their expertise and contributions
Limitations
The main limitations of this paper are that it has a small sample size of 12 participants, which may not be representative of the wider population of autistic adults who have experienced suicidal thoughts or behaviours. It also relies on self-report data, which may be subject to recall bias or social desirability bias. Furthermore, it does not compare the findings with those of non-autistic adults or other groups of autistic adults, such as those who have not experienced suicidal thoughts or behaviours.
implications
The main implications of this paper for practice and policy are that it suggests that suicide prevention and support for autistic adults should be informed by their lived experiences and needs, and that they should be involved and empowered in research, policy, and practice. It also provides some specific suggestions for improving the awareness and skills of professionals and services that work with autistic adults, and for developing and evaluating interventions that address their specific needs and preferences.
Conclusion
This project demonstrates the benefits and challenges of working in partnership with autistic adults to explore suicide theory. It shows that participatory research can produce rich and meaningful data that can inform and improve suicide prevention and support for autistic people. It also highlights the need for more research that is led by or co-produced with autistic people, and that respects and values their voices and perspectives.
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