Undiagnosed Autism and Suicide

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Undiagnosed Autism and Suicide

Jim Windell

           Autism is a lifelong developmental condition diagnosed on the basis of difficulties in social and communication skills and in adapting to unexpected change. Furthermore, people diagnosed with autism have heightened sensory sensitivity, unusually deep interests in specific topics, and a preference for predictability.

           Both in the U.S. and the U.K., there are many barriers to obtaining an autism diagnosis, including limited availability of diagnostic services, leading to long waiting lists. Even post-diagnosis, there are insufficient support services for autistic people. 

            Previous research by a team of researchers 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, has shown that up to 66% of autistic adults have thought about taking their own life. They also found that 35% of autistic adults have attempted suicide. Around 1% of people in the U.K. are autistic, yet up to 15% of people hospitalized after attempting suicide have a diagnosis of autism. In the U.S., it is estimated that 2.2% of adults are autistic. Although studies done in Norway and Australia reveal that individuals with a diagnosed autism spectrum disorder have an increased risk for suicide attempts and suicide deaths, similar studies have not been carried out in the U.S.  

            Also, prior research in the U.K. has also found that both diagnosed autistic people and those with elevated autistic traits are more vulnerable to mental health problems, suicidal thoughts and behaviors. Now, new research from Dr. Sarah Cassidy and Professor Simon Baron-Cohen goes beyond previous studies by examining coroner’s records related to people in England who have ended their own life. Cassidy and Baron-Cohen analyzed coroners’ inquest records of 372 people who died by suicide and also interviewed family members of those who died. Their research was recently published in the British Journal of Psychiatry.

           The research team first examined the coroners’ inquests for each death by suicide for signs of elevated autistic traits indicating possible undiagnosed autism, or a definite diagnosis of autism. Evidence of autism was then checked by an independent researcher to make sure that these decisions were reliable. The researchers then spoke to 29 of the families, to gather further evidence to corroborate the elevated autistic traits in those who died. After speaking with the families, the researchers found 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 U.K.

           The study indicates that a significant number of people who died by suicide were likely autistic, but undiagnosed. It also found that 10% of those who died by suicide had evidence of elevated autistic traits, indicating likely undiagnosed autism. This is 11 times higher than the rate of autism in the U.K. 

           According to Dr. Cassidy, “Many adults in the U.K. 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.” She added that this is the top autism community priority for suicide prevention. “It needs to be addressed immediately by commissioners of services and policy makers,” she said.

           Professor Simon Baron-Cohen pointed out that, “Even a single suicide is a terrible tragedy for the person and a traumatic loss for their families and friends. Suicide rates are unacceptably high in autistic people and suicide prevention has to be the number one goal to reduce the worrying increased mortality in autistic people. Autistic people on average die 20 years earlier than non-autistic people, and two big causes of this are suicide and epilepsy.”

           This finding seems to highlight the urgent need for earlier diagnosis of autism or autism spectrum disorders as well as the need for tailored support for suicide prevention. 

           To read the original article, find it with this reference:

Cassidy, S., Au-Yeung, S., Robertson, A., Cogger-Weed, H., Richards, G., Allison, C., Bradley, L., Kenny, R., O’Connor, R., Mosse, D., Rodgers, J. & Baron-Cohen, S. (2022). Autism and autistic traits in those who died by suicide in England. British Journal of Psychiatry; DOI: 10.1192/bjp.2022.21



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