News and Knowledge

You very likely know someone diagnosed with autism spectrum disorder (ASD); you also are likely to know of someone who has died by suicide. Unfortunately, it is possible that these two people may be one and the same. People with ASD may have an increased risk of suicide and suicidal behavior for reasons we hope to understand through more focused research. To date, studies have been sparse and have not been fully inclusive of the ASD population. Factors such as higher cognitive capacity and life stressors may increase the vulnerability of adolescents and adults with ASD to suicidal thoughts and behaviors.

ASD is a condition that continues to be poorly understood, in terms of the wide variability in symptoms that we see, the changes that occur in diagnosed individuals throughout the lifespan, and most certainly, the inner thoughts of many individuals with this diagnosis. Studies reveal that as individuals with ASD get older, there is a greater risk of other psychiatric problems developing, like depression and anxiety, compared to the general population. These problems may occur because of loneliness, low self-esteem, and the stress and difficulties of engagement in work and other community activities. Regardless of the reasons why they occur, they are all risk factors for suicidal thoughts and behaviors.

Most people, with or without ASD, feel uncomfortable talking about suicidal thoughts. Often, if a trusted adult or health care provider doesn’t ask a person directly, “Are you thinking about killing yourself?” the individual may not reveal suicidal thoughts. While talking about suicide is challenging for many people, it may be particularly difficult for individuals with social-communication impairments to feel comfortable and able to convey these thoughts to others, since social-communication difficulties often include limitations in ability to describe feelings.

Both suicide and ASD are topics surrounded by stigma. This stigma diminishes effective media coverage and dissemination of information critical to empowering and allowing individuals to get help. This stigma may also be one of the reasons why very little research has been done to even begin to understand how common suicidal ideation, suicidal attempts, and completed suicides are among people with ASD. The limited research suggests that this problem may not be fully recognized. That means that some people with ASD could pass through the healthcare system without detection of their suicidal thoughts or behaviors.

What we do know is that suicide is a major public health threat; the National Institute of Mental Health and the National Action Alliance for Suicide Prevention have a goal of reducing suicide by 20 percent by 2025. In addition, in 2012, the Office of the U.S. Surgeon General called for suicide risk screening for the general population. In fact, suicide is now the tenth leading cause of death for adults in the United States and the second leading cause of death among youth and young adults aged 10 to 24 years of age.  While a large-scale study in Sweden recently found that suicide was among the top three causes of premature death in individuals with ASD, more research is needed to understand where suicide fits in with causes of death in the ASD population as a whole.

Finally, we know that simple suicide screening questions used in medical settings can be helpful for detecting youth at risk for suicide. More hospitals have started screening for suicide risk because the accreditation board, The Joint Commission, issued a Sentinel Event Alert in 2016 recommending that patients in medical settings be routinely screened for suicide risk and treated as needed.

While it is important to include individuals with ASD in screening initiatives, there are no suicide screening tools designed specifically for people with ASD. We do not know if available tools, like the Ask Suicide-Screening Questions (ASQ), work well in identifying suicide risk in the ASD population. Researchers are now testing how the ASQ screening tool works in people with ASD, and what, if any, modifications are needed.  Continued research is also needed to better understand the prevalence of suicide thoughts and behavior in the ASD population and to understand exactly what causes increased rates.

In conclusion, people with ASD may be at higher for suicide than the general population.  With greater research, we will learn more. In the interim, if you are experiencing suicidal thoughts or are concerned about someone you know, regardless of their age, diagnosis, or any other factor, there are resources available for help. The National Suicide Prevention Lifeline (1-800-273-8255) and the Crisis Text Line (text HOME to 741741) are available to provide support and resources 24 hours a day, seven days a week. Speaking up and asking direct questions about suicide can save lives.

Dr. Horowitz and Dr. Thurm are leading a study to adapt the ASQ for use with people with ASD.

Audrey Thurm, Ph.D. is a clinical psychologist and staff scientist within the Intramural Research Program of the National Institute of Mental Health, where she is director of the Neurodevelopmental and Behavioral Phenotyping Service of the Office of the Clinical Director. Her research focuses on developmental and behavioral evaluations of individuals with a variety of neurodevelopmental problems, including young children and individuals of all ages with significant cognitive or social impairments. She has published extensively on longitudinal studies and behavioral phenotyping studies of autism spectrum disorder.

Lisa Horowitz, Ph.D., M.P.H, is a staff scientist/pediatric psychologist in the National Institute of Mental Health Intramural Research Program at the National Institutes of Health (NIH). She serves as a senior attending psychologist with a specialty in pediatric psychology on the Psychiatry Service in the Hatfield Clinical Research Center at NIH. Dr. Horowitz’s major research focus has been detection of suicide risk in the medical setting. She is collaborating with hospitals and outpatient pediatric clinics around the country, assisting with implementation of suicide risk screening.

Note: This work was written as part of Dr. Thurm’s and Dr. Horowitz’s official duties as government employees. The views expressed in this article do not necessarily represent the views of the NIMH, NIH, HHS, or the United States Government.