A new study, led by the University of Cambridge in collaboration with Bournemouth University, 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.
The study, published in the journal Autism in Adulthood, is the largest survey of autism and suicide to date, involving almost 1400 autistic people (>90% from the UK). The research was instigated by the charity Autism Action, as part of its mission to reduce the number of autistic people who think about, attempt and die by suicide.
“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,” said lead author Dr Rachel Moseley, Principal Academic in Psychology at Bournemouth University.
“Shockingly, almost forty percent of participants in this study had attempted suicide, with most of those having attempted suicide multiple times,” she added.
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”.
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”.
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.
Finally, 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 in what the charity Autism Action describe as ‘devastating delays’ that have serious long-term effects contributing to increased risk of suicide. The charity also highlights concerns about the many autistic people, diagnosed and undiagnosed, who receive little to no support.
Dr Moseley said “Our study shows that suicide in autistic people is a public health crisis rooted in cracks in the system – gaps and inequalities in access to education, employment, health and social care – through which autistic people are at risk of falling, and which contribute to suicide and excess mortality”.
“The findings should serve as an urgent call for action for key decision-makers in government. The results indicate that reducing waiting times for an autism assessment, and providing post-diagnostic care, as well as increasing capacity for health and social care professionals to support autistic people, should be priorities for the government,” she concluded.
Tom Purser, CEO of Autism Action, said “We know that Government needs to do more to create conditions in which autistic people can live equally rewarding, meaningful and dignified lives. This is why our charity has invested in the largest programme of research into autism and suicide in the UK. This research reveals critical insights which we will be working hard to ensure are heard at the heart of Government, to drive long-overdue change.”
