The first batch of research commissioned by Autism Action into understanding why the risk of suicide is higher in autistic people and, crucially, what we can do about it, was released last week.
The research, led by the University of Cambridge in collaboration with Bournemouth University, has been published in the journal Autism in Adulthood, and is the largest survey of autism and suicide to date, involving almost 1400 autistic people (>90% from the UK).
Underlying drivers of suicidal thoughts and feelings
The study shows that autistic people identify loneliness, hopelessness and feelings of worthlessness and failure as key factors underpinning their suicidal feelings. Individuals who highlighted being unable to access the support they needed were more likely to have attempted suicide. Autistic women and gender minorities were disproportionately over-represented among those who struggled to access support.
Lead author Dr Rachel Moseley, Principal Academic in Psychology at Bournemouth University, said:
“We know from previous research that the number of autistic people attempting suicide is unacceptably high. Whilst one in 37 non-autistic people ever attempt suicide, approximately one in four autistic people do so.”
“Shockingly, almost forty percent of participants in this study had attempted suicide, with most of those having attempted suicide multiple times.”
Where participants had identified mental illness, loneliness, hopelessness, and feelings of worthlessness as driving factors in their suicidal experiences, they had a lot to say about where these feelings came from. Many spoke about “traumatising” school days where they were victimised and lacked appropriate support, which continued into adult difficulties entering and staying in the workforce.
Key factors mentioned by participants were the strain caused by “inconsistent and unpredictable” health and social care, and battles with the “demeaning” and “cruel” benefits system – this left many feeling like a burden on their loved ones. The broader way that autistic people are stigmatised within society came to the fore in feelings of “sadness for the way you’re looked upon by others”. One person said they felt “too defective to live”.
Challenges when seeking help
Participants said that they were often misunderstood, disbelieved and invalidated when they tried to seek professional support, and that these experiences, where they were unable to access help, contributed to feelings of hopelessness and despair.
Those who highlighted these difficulties accessing help were most likely to have attempted suicide, pointing at the impact of negative experiences with services that are meant to be there to help. These problems were especially prominent for autistic women and for gender minorities such as transgender men and women, backing up previous findings that autistic women and gender minorities have more difficulty accessing services and having their needs understood and met by professionals.
Professor Sir Simon Baron-Cohen, Director of the Autism Research Centre at Cambridge University, and senior author of the study, said:
“These findings suggest that many autistic people feel lost in a world which they feel does not care about or actively rejects them, and where they objectively do not have equal access to many of the things that people consider essential for good mental health”.
Long waiting lists for autism assessment and support
Participants said that having been overlooked for a diagnosis as a child was an important factor in their suicidal feelings, leaving them feeling “broken” and “different” throughout their lives. They highlighted that long waiting lists for assessment, and the absence of any post-diagnostic support, contributed to the hopelessness underlying suicidal thoughts.
The researchers conclude that these are sobering findings in relation to UK waiting times for autism assessment, with children and adults waiting years that have serious long-term effects contributing to increased risk of suicide.
It doesn’t have to be this way – we’re working hard to drive change
This research is part of a bigger body of work commissioned by the charity in 2022, when a suicide prevention project team was established, bringing Autism Action together with expert researchers and those with lived experience of autism and suicidality.
In 2024 Autism Action commissioned over £500K of suicide prevention research project with the Cambridge University’s Autism Research Centre. Working in collaboration with the autism community, our aims are to:
- Understand the link between autism, mental health and suicide.
- Understand autistic people’s priorities for suicide prevention.
- Use that learning to develop new interventions and/or ensure existing interventions are well-evidenced and become more widely available, to support more autistic people and reduce suicide rates.
Tom Purser, CEO of Autism Action, said:
“Behind every statistic and research finding are real people who have suffered real loss, loss that should never have happened. It is critical that we learn from these experiences to save people’s lives. We also need to be hopeful and work together to build a society where autism is understood and celebrated.
“It’s why we’re calling for urgent, widescale improvements to make systems and services fit for purpose for autistic people. The Government must significantly increase the evidence and data that underpins this, and then take meaningful action informed by an understanding of why autistic people can have such negative experiences of health and wellbeing services.
“The overdue ‘Learning from Lives and Deaths’ report issued last week – over 10 months late – is another woeful example of how little the Government understands the issues. Sitting by and waiting for things to improve by themselves over the coming years, whilst more people die preventable deaths, is just not good enough. We want action to change this.”
Reference
The research findings appear as: ‘“A combination of everything”: a mixed-methods approach to the factors which autistic people consider important in suicidality’. It is published today in Autism in Adulthood, found here: “A Combination of Everything”: A Mixed-Methods Approach to the Factors that Autistic People Consider Important in Suicidality | Autism in Adulthood (note that we will update this with a free-to-access link when it becomes available).
