‘Preventable deaths will continue’ without action to make NHS more accessible for autistic people, say experts

Life-saving opportunities to prevent suicide among autistic people are being missed because systemic barriers make it difficult for them to access NHS support during times of mental health crisis, according to new research.

Autistic people experience poorer mental and physical health and live shorter lives than the general population. They are significantly more likely than non-autistic people to die by suicide. Recent estimates suggest that 1 in 3 autistic people has experienced suicidal ideation and nearly one in four has attempted suicide.

In a study published today in Autism, researchers from the University of Cambridge and Bournemouth University found that of more than 1,000 autistic adults surveyed, only 1 in 4 reached out to the NHS the last time they experienced suicidal thoughts or behaviors.

Among those who did not seek NHS support, the most common reasons were that they believed the NHS could not help them (48%), that they tried to cope alone (54%), or that they felt there was “no point” due to long waiting lists for mental health services (43%). Many participants commented that the NHS’s limited range of mental health services was not suitable for “people like us.”

Just over a third (36%) of participants who did not seek NHS support reported previous negative experiences with the NHS, while a similar number (34%) said they had had bad experiences specifically when seeking help for suicidality—and more than 1 in 10 (12%) said they had been turned away or had a referral rejected.

One in four participants (25%) said they feared consequences such as being sectioned. Others highlighted practical barriers, suggesting they could not face trying to get an appointment with their GP (34%). No participants said they didn’t want to be stopped.

This study also corroborates findings that certain gender groups may experience even greater barriers to accessing NHS support. Analysis by the team at Bournemouth and Cambridge showed that among the participants, cisgender women and those who were transgender or gender-divergent were more likely to have had negative experiences, while transgender and gender-divergent autistic people were especially likely to fear that they would not be believed by NHS staff.

Co-lead author Dr. Tanya Procyshyn from the Autism Research Center at the University of Cambridge said, “Our findings make it clear that autistic people do want support when they are struggling with suicidality, but many have been let down by a system that they experience as inaccessible, unhelpful, or even harmful. Without urgent reform to make services trustworthy and better suited to autistic people’s needs, preventable deaths will continue.”

This study offers new insights on significantly higher suicide rates among the autistic population, a stark reality recognized by the Government’s inclusion of autistic people as a priority group in the 2023 Suicide Prevention Strategy.

The authors note that policy commitments must lead to meaningful service changes, such as autism-informed training for health care professionals, alternatives to phone-based appointment booking, and flexible, autism-adapted mental health services. They stress that these changes must be co-designed with autistic people to ensure acceptability and rebuild trust.

Co-lead author, Dr. Rachel Moseley from the Department of Psychology at Bournemouth University, said, “We know from other research that health care professionals don’t receive sufficient training to help them work effectively with autistic people. Our work shows that when faced with autistic people in crisis, clinicians often overlook these signs, or react in a way that causes further damage.

“For these reasons, it’s imperative that the government takes steps to address inequalities that prevent autistic people from accessing health care that could save their lives.”

Professor Sir Simon Baron-Cohen, Director of the Autism Research Center at Cambridge and the senior author on the team, added, “There is a mental health crisis in the autism community, with one in four autistic adults planning or attempting suicide. This is unacceptably high.

“Although the UK Government has finally now recognized autistic people as a high-risk group in relation to suicide, the essential changes that could prevent these unnecessary deaths are not materializing fast enough.

“We are glad that Autism Action, the charity that funds a number of our suicide prevention studies, is translating the research into policy and practice, but we need to see a massive injection of funding into support services to avert multiple future tragedies.”

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.

Tom Purser, CEO of Autism Action, said, “It is unacceptable that our health service fails autistic people at the time of their greatest need. Autistic people want help but barriers in the form of inaccessible systems, poor attitudes and lack of training are preventing this, and in one in ten cases people are being turned away or rejected.

“The recently published ‘Learning from Lives and Deaths’ report, focused on people with a learning disability and autistic people, highlighted that a lack of access to the right support is a massive factor that leads to premature deaths. We know a better system is possible—the Government must now lead the way to save lives.”