By Mirabel Pelton.
As a society, we urgently need to prioritise the wellbeing of autistic people [A] to reduce suicide rates. In this blog, I update the three areas that I first wrote about for #WSPD 2019. To address this hidden crisis, I argue, we need to continue to report prevalence rates, but we also need to listen carefully to voices in the autism community who have set out a research agenda for suicide prevention. Research needs to identify what is driving suicide in autistic people and design tools and interventions to address this. I will explain how my research exploring suicide models in autistic people is striving to contribute to this.
1. Autistic people are at greater risk of suicide than non-autistic people
Autism is a lifelong condition [B] present from early childhood characterized by different social, communication and sensory preferences. Shockingly high rates of all forms of suicidal thoughts and behaviours have been reported in autistic people over the last decade. In 2021 a Danish population study reported deaths by suicide were 3 times higher amongst autistic people than non-autistic people, with the highest rates amongst women and those with mental health difficulties (1).
This fact is well known amongst autistic people and those who live and work closely with them. In 2021, a Policy Brief set out the 10 most important research priorities for suicide prevention identified from within the autism community (2). One of these is to understand how well existing models for understanding suicide apply to autistic people. So, this is where my research comes in.
2. Why are autistic people more likely to experience suicidal thoughts and behaviours?
In my 2019 blog, I reported that the focus of Joiner’s Interpersonal Theory of Suicide (ITS) on unmet social needs resonates with the experience of social exclusion reported by many autistic people. The ITS operationalises ‘unmet social needs’ as thwarted belonging (an absence of reciprocal caring relationships) and perceived burden (a false sense of social worthlessness). We found in both autistic and non-autistic people, autistic traits (personality traits similar to autism, such as a preference for routine) were significantly associated with suicidal thoughts through perceived burden and thwarted belonging (2, 3). This could suggest that the social impact of autistic traits is providing the connection to suicidal thoughts and behaviours.
However, the association of both perceived burden and thwarted belonging with suicidal thoughts and behaviours was attenuated in autistic people compared to non-autistic people. The model explained 30% of the variance in reported suicidal thoughts and behaviours in non-autistic people but only 10% in autistic people. Overall, this suggests that the model is capturing less of experiences associated with suicidal thoughts and behaviours in autistic people than in non-autistic people (3).
So, why is this? Other risk markers could be more important for autistic people. The population study I refer to above reports that risk markers for suicide in non-autistic people, such as age, being male or unmarried, weren’t associated with suicide in autistic people (1). However, before we test the role of other risk markers, it is important to know that we are accurately measuring perceived burden and thwarted belonging in autistic people.
3. How do we measure suicide risk in autistic people?
Most mental health measures are designed and validated in non-autistic people, which can create difficulties for autistic people. So, the Policy Brief has identified a further research priority, which is to design effective ways to assess suicidal thoughts and behaviours in autistic people (2). The Interpersonal Needs Questionnaire measures perceived burden and thwarted belonging and, in our design group, autistic people told us they found it difficult to select a response option because the item language was unclear, the questions over-lapped in meaning and the items weren’t relevant to their experiences. So we tested this statistically and our results confirmed that the measurement properties were not equivalent, suggesting that the questionnaire is capturing something different in autistic and non-autistic people and overall scores shouldn’t be compared (5).
… with belonging comes our being, our fulfillment, positive self worth and the richness of idea and innovation we can bring.
However, detailed inspection of our findings suggested that, whilst overall scores of thwarted belonging shouldn’t be compared, some items, such as ‘I feel like I belong’ and ‘I feel disconnected from other people’ showed equivalent measurement properties suggesting that these are similar experiences for autistic and non-autistic people. This is important because in the past unhelpful views about autistic people have suggested they don’t value social connection. Our results support the more helpful view that autistic people enjoy and benefit from social interaction but may have different social preferences.
“I wanted to belong. Back to my earliest memories. I have experienced brief delusions of it.”
So, how do we move forwards from here?
We still need to explore how other risk markers may contribute to suicidal thoughts and behaviours. I am considering the implications of my results for exploring how anxiety and depression symptoms may contribute to suicidal thoughts – these could be important risk markers as they are experienced by up to 70% of autistic adults.
We also want to understand more about how belonging and connectedness are experienced by autistic people, as they are consistently reported protective factors in many research studies but they have not yet been systematically explored in autistic people. So, we invited creative submissions on these themes for Coventry City of Culture. We are hugely grateful to everyone who has shared their words and pictures, some of which illustrate this blog. We will use them to think about future research https://belong.coventry.domains.
In summary, in the past two years, evidence has continued to confirm that autistic people are more likely to die by suicide and engage in suicidal behaviours than non-autistic people but we still need more research to understand why and need to design tools to accurately capture the experiences of autistic people. As researchers we need to continue to listen to the voices of autistic people research and embed this throughout the research lifecycle. In this way, we can produce research that can really make a difference.
For full details of the belonging project, full details of my publications please visit https://belong.coventry.domains . You can follow me on twitter @MiraPel1 and @isbelonging to stay in touch. Please feel free to email me at firstname.lastname@example.org with any comments or questions about my research.
[A] My research refers to individuals without intellectual disability who are reported to be at increased risk of suicide.
[B] We use the less stigmatizing term ‘condition’ rather than ‘disorder’ to describe autism and refer to ‘autistic people’ to reflect the language preference of the autistic community (Kenny 2016).
- Kõlves, K., Fitzgerald, C., Nordentoft, M., Wood, S. J., & Erlangsen, A. (2021). Assessment of suicidal behaviors among individuals with autism spectrum disorder in Denmark. JAMA network open, 4(1), e2033565-e2033565. https://curis.ku.dk/ws/files/256629222/klves_2021_oi_201024_1609777991.04808.pdf
- Cassidy, S. A., Goodwin, J., Robertson, A., & Rodgers, R. (2021). INSAR policy brief: Autism community priorities for suicide prevention. https://cdn. ymaws.com/www.autism-insar.org/resource/resmgr/files/policybriefs/ 2021-insar_policy_brief.pdf
- Pelton, M. K., & Cassidy, S. A. (2017). Are autistic traits associated with suicidality? A test of the interpersonal‐psychological theory of suicide in a non‐clinical young adult sample. Autism Research, 10(11), 1891-1904. https://onlinelibrary.wiley.com/doi/pdfdirect/10.1002/aur.1828
- Pelton, M. K., Crawford, H., Robertson, A. E., Rodgers, J., Baron-Cohen, S., & Cassidy, S. (2020). Understanding suicide risk in autistic adults: Comparing the Interpersonal Theory of Suicide in autistic and non-autistic samples. Journal of autism and developmental disorders, 50(10), 3620-3637 https://belong.coventry.domains/wp-content/uploads/2020/03/accepted_manuscript.pdf
- Pelton, M. K., Crawford, H., Robertson, A. E., Rodgers, J., Baron-Cohen, S., & Cassidy, S. (2020). A measurement invariance analysis of the Interpersonal Needs Questionnaire and Acquired Capability for Suicide Scale in autistic and non-autistic adults. Autism in Adulthood, 2(3), 193-203 https://www.liebertpub.com/doi/pdfplus/10.1089/aut.2019.0055