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SALT LAKE CITY — University of Utah researchers recently published a study which revealed that individuals diagnosed with autism in Utah are more likely to die by suicide than peers who don't have an autism spectrum disorder.
The Centers for Disease Control and Prevention have reported that one out of every 59 children in the United States is given a diagnosis with autism spectrum disorder. Despite decades of research into the condition, very little understanding of it has become clear.
Dr. Anne Kirby is an occupational therapist and researcher at the University of Utah, and most of her research has involved individuals with autism. In her work with autistic adults, teenagers and their families, Kirby encountered mention of mental health and suicidality. Around the same time, she began to hear discussion about suicidality among autistic individuals in scholarly literature.
“There’s only been one study up until the one that we did that had looked at actual suicide death outcomes among people with autism in a population-based way,” Kirby explained.
The study, conducted in 2016 in Sweden, had revealed that suicide was a leading cause of premature death among individuals with autism. Additionally, it showed that women with autism were even more likely to die by suicide than males. This sparked Kirby’s interest and, along with her team of researchers, she began a retrospective study to look over a 20-year period and see what suicide rates in Utah among Autistic individuals looks like.
“We have a unique opportunity in Utah to look at this question because we have autism surveillance data and the state tracks suicide pretty well in order to inform suicide prevention programs,” Kirby explained. “We were able to cross-link those two data resources and find out the incidence of suicide among people who had an autism diagnosis.”
They studied suicide rates among those with autism from 1998 until 2017, looking at five-year increments to address the fact that it is a rare outcome among a relatively rare population. “Over the 20-year period, there were 49 people who had an autism diagnosis whose deaths were classified as a suicide,” Kirby said.
The following are warning signs of immediate risk. Call 911 if you or someone you know is experiencing the following:
- Threatening to hurt or kill themself or talking of wanting to hurt or kill themself
- Looking for ways to kill themself by seeking access to firearms, available pills or other means
- Talking or writing about death, dying or suicide when these actions are out of the ordinary
Additional Warning Signs:
- Increased substance use
- No reason for living, no sense of purpose in life
- Anxiety, agitation, unable to sleep or sleeping all the time
- Feeling trapped — like there's no way out
- Hopelessness
- Withdrawal from friends, family and society
- Rage, uncontrolled anger, seeking revenge
- Acting reckless or engaging in risky activities, seemingly without thinking
- Dramatic mood changes
Courtesy of the Utah Suicide Prevention Coalition
According to a University of Utah press release, seven of those individuals were female and 42 were male. In the final period, the cumulative incidence of suicide among autistic people was notably higher than their non-autistic peers, with 0.17 percent compared to 0.11 percent of the non-autistic population engaging in suicidal behavior. The increase appears to have been motivated by suicide among women with autism, which was higher than the non-autistic population by 0.12 percent.
“It’s interesting because autism is much less commonly diagnosed in females and suicide is generally much less common of a way of dying for women than men,” Kirby said. “We saw here that females with an autism diagnosis were over three times more likely to die from suicide than other (non-Autistic) females.”
Currently, the researchers don’t have any data points that indicate a causal reason for the increased suicide rates. Kirby did note, however, that their findings were consistent with the Swedish study. Currently, any potential reasons behind the increase are speculative. “There’s some conversation happening around social isolation, but there could be an array of genetic, biological, social or environmental factors impacting the results,” Kirby said.
Kirby noted that there is research being done on masking or “camouflaging”, which is a tendency for autistic individuals to try and act “typical” in their day-to-day lives. She said that some studies have shown that camouflaging may be associated with suicidality, and another demonstrated that women with autism may be more likely to camouflage.
As Kirby launches into her next phase of research, she is starting to “work with autistic adults to generate additional hypotheses and research perspectives that we can look into.” They are also trying to access medical records and data on some of the individuals in this study so they can learn what potential co-occurring conditions they might have had. This will help them determine if autism is the cause of increased suicide rates or comorbid conditions like depression and anxiety. Kirby wants to find if there are certain risk factors or sub-groups that are in particular need of support.
“My hope is to be able to take what we’re learning and transfer it into better services,” she said.
Crisis Hotlines
- Utah County Crisis Line: 801-691-5433
- Salt Lake County/UNI Crisis Line: 801-587-3000
- Wasatch Mental Health Crisis Line: 801-373-7393
- National Suicide Prevention Lifeline: 1-800-273-TALK (8255)
- Trevor Project Hotline for LGBTQ teens: 1-866-488-7386
Online resources
- NAMI Utah: namiut.org
- Utah Chapter-American Foundation for Suicide Prevention: afsputah.com
- Suicide Prevention Lifeline: www.suicidepreventionlifeline.org