Mr. A, a middle-aged chemist, came to a Baltimore emergency room after a suicide attempt. He said he was “thoroughly depressed.” He had been fired after throwing a chair at his boss, not his first outburst at work. Doctors admitted him to the hospital, where they became suspicious of his rigidity, social awkwardness, and trouble making eye contact. After talking to his parents about his childhood, hospital psychiatrists settled on an unexpected diagnosis. In addition to psychiatric and alcohol abuse problems, Mr. A. had autism spectrum disorder, they said.1
Researchers and doctors alike are focusing on a link between autism and suicidal thoughts, plans, or actions. Suicide is the second leading cause of death for teenagers and young adults in the United States and abroad.2-5 In the U.S. alone, almost 6,000 youth died by suicide in 2015; many, many others thought about it, or tried to end their own lives.6
A growing number of scientists want to know more about how this public health crisis affects people with autism spectrum disorder (ASD). Studies show that people with autism are at higher risk for suicidal thoughts, plans, or actions than the general public, although how much higher varies widely among the studies.5,7-14 The evidence that suicide is a critical issue in autism is “increasingly strong,” two researchers concluded after analyzing 13 studies about it.12
“It’s shocking and sad,” said Alycia Halladay, PhD, of the Autism Science Foundation, in a 2018 podcast, “Sobering Statistics on Suicide.”
Risk Factors for Suicide in ASD
What’s behind these sobering statistics? Some of the risk factors for suicide in the general population occur more frequently in people with autism, although scientists do not know for sure if these factors have the same influence in ASD.12 For example:
- Children with autism are bullied at a much higher rate than their unaffected brothers and sisters.15 Research shows that both bullies and their victims have a higher risk of suicidal thoughts and attempts.16
- People with autism have higher rates of underemployment or unemployment than the general population.17-19
- Youth and adults with autism have higher rates of depression and social isolation than others.14,20-22
A 2015 study of adults with autism in Northern California, for instance, found they had double the rate of depression and anxiety, and eight times the rate of bipolar disorder, than adults who do not have autism. They also were five times more likely to try to kill themselves. To put that in perspective, about 1 in 56 people with autism attempted suicide, compared to 1 in 313 other adults, according to that study by Kaiser Permanente.14 A different study found that found that the risk of death by suicide was seven times higher in people with autism than in the general population in Sweden.13
Research on suicide in autism is still in its relatively early stages. Some studies are either small – which is not ideal for making broad conclusions – or focused only on adults or people with Asperger’s Syndrome, according to researchers who study youth with more severe forms of the disorder.23 Asperger’s refers to autism spectrum disorder in people who did not have significant speech and learning delays in childhood.
Scouring Through Medical Records
Some studies stand out for their size or thoroughness, especially those using national registries or medical records.
In Sweden, researchers identified 54,000 people with autism using records from 1987 through 2013, and compared them to similar people who did not have autism. (Scientists often use a comparison, or control, group to see if a particular condition or treatment affects an outcome.) People with autism had a higher risk of suicide attempts and suicide than the comparison group, even when scientists factored in the presence of depression and attention deficit disorder, according to research presented at a 2018 international autism meeting.5
In fact, their close relatives – parents, siblings, and children – also had a higher risk of suicidal behavior. Having other psychiatric problems, in addition to family risk factors, “are important explanations to the increased risk of suicidal behaviour in ASD,” the Swedish scientists in concluded.5
Among people with autism, the risk was highest for those who did not have intellectual disability, especially women, in Sweden. Other studies have shown a higher risk for depression22,24,25 and suicide13 in that same subset of the autism community – people with at least average intelligence. Some researchers speculate that those with “high-functioning” autism may have a higher suicide risk because they have more psychiatric problems, or have a greater awareness of their differences and social isolation.12,13
It’s also possible that researchers simply know more about risk in people with milder forms of autism because they are studied more often and more thoroughly than people “severely affected by autism.”26
Is Autism Itself a Risk Factor?
Is having autism itself a risk factor for a suicide attempt? Yes, according to one study in Taiwan. Using medical insurance records, researchers compared two groups of teenagers and young adults, one with a medical diagnosis of autism and a similar, or control, group that did not have autism. (In the U.S. this age group has the highest rate of suicidal thoughts in the general population.27) Neither the 5,600 people with autism nor the 22,500 controls had a history of suicidal behavior when the study began. Researchers followed them for three to 10 years, and compared the number of reported suicide attempts when the study ended in 2011. Almost 4 percent of the ASD group had attempted suicide, compared to less than 1 percent of the control group.8
Not surprisingly, the teens and adults with autism also were more likely to have attention-deficit hyperactivity disorders, intellectual disability, anxiety disorders, depression and bipolar disorder than controls.8
Because certain psychiatric conditions may raise the risk of suicide, researchers took those differences into account when assessing the youth and adults. In their analysis, the researchers concluded, having autism itself is an “independent risk factor to attempted suicide regardless of the presence of psychiatric [conditions], including depression, bipolar disorder, and alcohol and substance use disorders.”8 The Taiwanese researchers urged doctors to monitor “suicide-related symptoms,” as well as mental and behavioral disorders, in patients with autism.
What About Social Communication Problems?
Although the Taiwanese study found that having autism raised suicide risk, a British study said it did not. In fact, British researchers found that having certain characteristics common to autism, but not necessarily autism itself, increased a teenager’s risk. Those scientists followed more than 5,000 British youth from birth through age 16. By age 16, youth with poor social communication skills had a higher risk of suicidal thoughts, plans and behaviors than teenagers who did not have those deficits.9
Having a social communication problem is one of the two major symptoms of autism, but it does not mean someone has autism. The researchers found “no evidence” that having an autism diagnosis raised risk, but the number of youth with a medical or school diagnosis of ASD was low, making their analysis admittedly “imprecise.”9 In general, studies using many participants are more likely to detect differences between them than studies using just a few people with a certain trait, in this case, autism.
Perhaps not surprisingly, given what doctors know about depression, the study found a link between depression and suicidal behavior. Children with poor social communication skills were more likely to have symptoms of depression at age 12. That, in turn, raised their risk for suicidal behavior by age 16.9
Studying Those Receiving Psychiatric Care in Hospitals
In the United States, another group of researchers looked at a subset of the autism community that might be expected to be at greatest risk: youth with autism who have been admitted to a hospital for psychiatric care.23
Those researchers examined information supplied by parents of the 107 youth, who all could speak. The families reported that 22 percent, or about 1 in 5, of these youth had talked about death or suicide “often” or “very often” for several days at a time. Many of them also had a mood disorder or anxiety. All had been admitted to a psychiatric unit in a hospital that participates in the Autism Inpatient Collection (AIC) research project.
Of course, these results may be different in youth with autism who have not been admitted to a hospital for mental health reasons. For example, some studies of youth outside hospital settings showed lower rates of suicidal thoughts, according to the AIC researchers.28,29 It’s also possible that some youth spoke frequently about death as part of an autism-related preoccupation, rather than a suicide wish, they acknowledged. Having an intense focus on a topic or object is a symptom of autism.30
Finding Those with Autism Who Need Help
Some of the same researchers are working on another study that could shed more light on suicide risk in autism – and could help doctors identify people who need mental health treatment.
In an interview, clinical psychologists Lisa M. Horowitz, PhD, MPH, and Audrey Thurm, PhD, of the National Institute of Mental Health, said they are planning to test a questionnaire to see if it would accurately assess suicide risk in autism.
The questionnaire, the Ask Suicide-Screening Questions, or ASQ, has been tested successfully for use with typically-developing children and teenagers. Dr. Horowitz led the research team that, in 2012, determined that a four-question ASQ could identify the suicide risk in children who came to hospital emergency departments.31 For example, youth are asked if they recently wished they were dead, felt they or their family would be better off if they were dead, or have been having thoughts about killing themselves. If patients answer “yes” to any of the first four questions, they then are asked if they are having thoughts of suicide “right now.” Youth who say “yes” to any of the questions require a brief suicide safety assessment.
“During that study,” Dr. Horowitz recalled, “I got a call from a psychologist in Toronto who wanted to know if we had included patients with autism spectrum disorder and intellectual disability in the study. I told her we had not. She reported her great need of a screening tool in these populations. We decided we needed another study to find out if the ASQ would work well in people with autism.”
Kennedy Krieger Institute, a hospital for children and young adults with developmental and nervous system disorders, conducted a preliminary study using the ASQ in 2017.32 Nurses offered suicide screenings to patients ages 8 and older during appointments at outpatient clinics. (Parents could answer for the child or could refuse screening). If the screening showed a risk, then a doctor or nurse practitioner performed a more detailed assessment or consulted a psychologist or social worker.
Suzanne V. Rybczynski, MD
Almost 14 percent of the patients from the autism clinic screened positive, compared to about 5 percent of the patients in clinics for youth with other medical conditions. “I was surprised how much higher the rate was for the autism clinic compared to the developmental pediatrics clinic and the neurology clinic,” said one of the researchers, Dr. Suzanne V. Rybczynski, the Institute’s medical staff services director and medical director of the Pediatric Rehabilitation Unit.
Dr. Rybczynski said some parents expressed concern that asking about suicide would cause their child to contemplate it. However, she said, “The research says that is not the case. Just talking about it doesn’t mean you’re planting ideas of suicide in their head.”
What Should You Do If Someone Talks About Suicide?
Dr. Horowitz urged parents to take note if a child mentions suicide. “We need to take all talk of suicide seriously, and pay attention to it,” she said. “While suicide is a very rare event, if a child is talking about thoughts of suicide or wanting to kill themselves, it’s important to say to him, ‘You mentioned that you were thinking you wanted to die, or kill yourself. I’m glad you are telling me – I take this very seriously. My first priority is keeping you safe, and I want to be able to help you.”
“Do not leave him alone, and if you’re concerned about his safety, take him to a hospital emergency room,” she advised. People also can contact suicide prevention help lines that are open 24 hours a day, seven days a week, she said. (See the Additional Resources section for numbers to call or text, or to start an online chat.)
Families are not the only ones being urged to pay close attention to depression and suicidal thoughts in people with autism. Health care providers should be “vigilant for suicidal behavior” in their patients with autism, according one research article.5
Physicians can be proactive with these patients, said Paul H. Lipkin, a pediatrician specializing in neurodevelopmental disabilities. “They should consider screening for suicide in order to identify problems early, and initiate mental health treatments before problems escalate,” said Dr. Lipkin, who directs the Interactive Autism Network and has been involved in suicide research.
Certainly, social and communication problems can make it harder for those on the spectrum to request help, or to have their difficulties noticed by others. “It is incredibly heartbreaking to think that individuals with autism feel trapped by social communication impairments and are unable to reach out for help, and do not have the same social support structure as those without autism,” said Dr. Halladay, chief science officer of the Autism Science Foundation.
The Road Ahead in Autism Research
Autism researchers Darren Hedley and Mirko Uljarevic, who reviewed 13 studies on the topic, concluded that more research is needed into what causes the higher risk.12 They also called for more study into the role of ASD severity – and IQ – in suicide risk, to confirm whether people with “high-functioning autism” have a higher risk than those with other forms of autism. Future studies also could sort out conflicting reports about whether suicide risks differ between males and females on the spectrum. And they concluded that more research is needed into what supports or help would reduce suicide risk for people with autism.12
“We must figure out what scientists can do to better help those in crisis,” agreed Dr. Halladay, “because we can’t assume that the strategies for helping those considering suicide are the same for everyone [with autism].”
Additional Resources
See the following resources for 24/7 help:
- The U.S.-based National Suicide Prevention Lifeline provides 24/7, free and confidential support for people in distress. Call 1-800-273-8255 or visit their website for a chat feature. The lifeline also has prevention and crisis resources, and information for professionals.
- Text TALK to 741741 in the U.S., to be connected by text message to a crisis counselor at the Crisis Text Line.
- The Canadian Association for Suicide Prevention has a help line.
- The International Association for Suicide Prevention publishes information about crisis centers on every continent. (Click on the links under the heading “Categories,” under the map).
- Be the One to Save a Life has resources to help people in crisis, and people concerned about them.
- U.S. Centers for Disease Control and Prevention’s (CDC) online resources on suicide prevention.
- Suicide prevention information from the U.S. National Institute of Mental Health
- Download the CDC’s report, “Preventing Suicide: A Technical Package of Policy, Programs, and Practices.”
- Download a poster by Interactive Autism Network researchers on “Suicidal Ideation and Behaviors in Children, Youth, and Young Adults with ASD.”
- Read Interactive Autism Network articles on “Diagnosing Depression in Autism” or finding a mental health provider experienced with ASD, “Help Wanted: Mental Health Provider, Autism Experience Preferred.”
- World Health Organization’s Preventing Suicide: A Community Engagement Toolkit
This article has been reproduced with permission of Kennedy Krieger Institute, Baltimore, MD. This information appeared originally at https://iancommunity.org/aic/link-between-autism-and-suicide-risk.
References
- Spencer, L., Lyketsos, C. G., Samstad, E., Dokey, A., Rostov, D., & Chisolm, M. S. (2011). A suicidal adult in crisis: An unexpected diagnosis of autism spectrum disorder. The American Journal of Psychiatry, 168(9), 890-892. doi:10.1176/appi.ajp.2011.10091261 [doi] Abstract.
- National Center for Injury Prevention and Control. (2018). Suicide rising across the US: More than a mental health concern. Retrieved from https://www.cdc.gov/vitalsigns/suicide/
- World Health Organization. (2018). Suicide: Key facts. Retrieved from http://www.who.int/en/news-room/fact-sheets/detail/suicide
- Centers for Disease Control and Prevention (CDC). (2018). National suicide statistics. Retrieved from https://www.cdc.gov/violenceprevention/suicide/statistics/index.html
- Hirvikoski, T., Boman, M., Chen, Q., D’Onofrio, B., Mittendorfer-Rutz, E., Lichtenstein, P., . . . Larsson, H. (2018). (2018). Suicidality and familial liability for suicide in autism: A population based study. Paper presented at the International Society for Autism Research 2018 Annual Meeting Program Book and Abstract Book, Rotterdam, Netherlands. Retrieved from https://insar.confex.com/insar/2018/webprogram/Paper26787.html
- National Institute of Mental Health. (2017). Ask suicide-screening questions toolkit: Screening youth for suicide in medical settings. Retrieved from https://www.nimh.nih.gov/labs-at-nimh/asq-toolkit-materials/index.shtml
The complete list of references can be found at https://iancommunity.org/aic/link-between-autism-and-suicide-risk.
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