High rates of undiagnosed autism might be contributing to suicide figures, study reveals

According to new research, a significant percentage of people who died by suicide were likely autistic but undiagnosed.

Written by Edward Gould-Brown

Last year, neurodiversity charity, Autistica [1], estimated that there are over half a million of mostly undiagnosed autistic adults in the UK. The charity highlighted that those undiagnosed autistic adults ‘are often misunderstood and marginalised, commonly experiencing mental health problems and disadvantages.' In response, Autistica started a campaign to ‘identify this lost generation of autistic adults’, so they can begin to receive professional support.

One specific obstacle to gaining a diagnosis has been the considerable waiting times from referral to assessment, which has been rising over the last few years. In 2020, a survey conducted by the charity, Ambitious About Autism [2], found that this is especially true for children and young people. The survey revealed that from referred to assessment, nearly half (46%) of parents wait longer than 18 months for a formal diagnosis for their child, with some waiting over three years.

Research [3] examining the reasons behind those varying experiences of waiting times concluded that increased awareness in neurodivergent conditions and changing diagnostic criteria has meant that NHS services are heavily oversubscribed and in some areas in extremely high demand leading to a patchy, postcode lottery of available services.

Suicide rates are unacceptably high in autistic people, and suicide prevention has to be the number one goal

The human tragedy behind these extensive diagnostic waiting times, and the resultant unsupported autistic individuals, has been revealed in a significant piece of new research [4] led by Dr Sarah Cassidy from the University of Nottingham and Professor Simon Baron-Cohen from the Autism Research Centre at the University of Cambridge.

The research team analysed the Coroners’ inquest records of 372 people who died by suicide and also interviewed family members of those who died. They found that 10% of those who died by suicide had evidence of elevated autistic traits indicative of undiagnosed autism. This is 11 times higher than the rate of autism in the UK.

An independent researcher checked these signs of autistic traits to ensure that the evidence was reliable. Then, after speaking to 29 of the families, the team found significant evidence of elevated autistic traits in more people who died by suicide (41%), which is 19 times higher than the rate of autism in the UK.

Prior research conducted by the team collaborates their findings, showing that up to 66% of autistic adults have thought about taking their own life, and 35% have attempted suicide. Hospitalisation figures further evidence the elevated risk for this ideation, as around 1% of people in the UK are autistic. Yet, up to 15% of people hospitalised after attempting suicide have had a diagnosis of autism.

Dr Sarah Cassidy commented: “Many adults in the UK find it very difficult to obtain an autism diagnosis and appropriate support post-diagnosis. Our study shows that undiagnosed autistic people could be at increased risk of dying by suicide.

"It is urgent that access to an autism diagnosis and appropriate support post-diagnosis is improved. This is the top autism community priority for suicide prevention and needs to be addressed immediately by commissioners of services and policymakers."

Furthermore, evidence of an autism diagnosis or elevated autistic traits is not usually included in Coroners' inquest in England. Although, as this study highlights, there is an urgent need for Coroners to gather evidence of autism and autistic traits in their inquests to help prevent future deaths.

References

[1] https://www.autistica.org.uk/news/partnership-improving-the-accuracy-and-efficiency-of-autism-assessment-for-adults

[2] https://www.ambitiousaboutautism.org.uk/about-us/media-centre/news/thousands-parents-facing-nightmare-waits-diagnosis-and-support

[3] https://onlinelibrary.wiley.com/doi/10.1111/cch.12552

[4] https://www.cambridge.org/core/journals/the-british-journal-of-psychiatry/article/autism-and-autistic-traits-in-those-who-died-by-suicide-in-england/04367C4DD9D8B4B3375A0D25C4764A54