Clinicians often miss autistics who are suicidal

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Among people Connor’s age, suicide is the second leading cause of death in the United States, according to the U.S. Centers for Disease Control and Prevention: Approximately 6,159 people between the ages of 10 and 24 died by suicide in 2016. Suicide is the 10th leading cause of death across all age groups and one of just three leading causes of death that is on the rise, according to a June report. But it’s unclear what the statistics are for people with autism.

Studies over the past few years hint that suicidal ideation is more common in people with autism than in the general population, but the estimates vary so widely that some experts say they are meaningless. Still, there is some evidence that autistic people are especially vulnerable to suicide: One 2015 study that mined Sweden’s large National Patient Registry found that they are 10 times as likely to die by suicide as are those in the general population. (Women with autism are particularly at risk, even though men are more so in the general population.)

Even when signs of suicidality are apparent, clinicians may dismiss them.

“I think part of the problem is that we only see things we’re paying attention to,” says Jeremy Veenstra-VanderWeele, professor of psychiatry at Columbia University. “Until very recently, we didn’t expect to see it, so we didn’t see suicidality in patients with [autism]; it just wasn’t on our radar.”

Clinicians may wrongly assume that people on the spectrum don’t have complicated emotions, or may discount their outbursts, says Paul Lipkin, director of the Interactive Autism Network at the Kennedy Krieger Institute in Baltimore, Maryland. “These children feel a normal range of emotions as other children, but [they] don’t do it in a typical way, and they’re not necessarily taken as seriously because they have a wide range of emotions showing already,” he says. Doctors also misinterpret self-harm — a classic warning sign for suicide in the general population — as a part of autism.

All of that is beginning to change. Some teams are adapting tools to spot autistic people who are at risk of suicide and gain a sense of the scale of this problem. Many typical signs of suicidality — changes in sleep, appetite and social relationships — involve areas that are already challenging for these individuals. So “one can’t rely on these changes in this population,” Lipkin says. Instead, the researchers are looking at the interplay of known risk factors, such as depression, anxiety and bullying, in autistic people. And they are identifying risks unique to this population, such as social challenges, communication difficulties and a diagnosis of attention deficit hyperactivity disorder.

Children who struggle with social communication are at a high risk of suicidal behavior — even if they do not have autism — as are adolescents who have autism and symptoms of depression, according to a large study published in May in the Journal of the American Academy of Child and Adolescent Psychiatry. The researchers tracked 5,031 children in the Avon Longitudinal Study of Parents and Children, a large birth cohort in the United Kingdom. The children are either diagnosed with autism or show at least one of four autism traits: repetitive behaviors, social communication difficulties, pragmatic language problems or a lack of sociability. Those who have problems with social communication are the most likely to harbor thoughts of suicide at age 16, the researchers found.

“This is an urgent and obvious area for further research to try to prevent what we now recognize,” Veenstra-VanderWeele wrote in an editorial accompanying the results.

Other research shows that being bullied is common among young people with autism and may lead to depression and anxiety. In June, a study of the same U.K. cohort found that children with autism traits not only have more signs of depression than typical children at age 10 but that signs of depression persist for at least eight years, especially if a child has been the target of bullying. “Bullying explains 50 percent of the relationship between problems with social communication and a diagnosis of depression,” says lead investigator Dheeraj Rai, senior lecturer at the University of Bristol in the U.K. “We know that people with autism feel victimized after bullying; it’s very common and something many people and their families relate to us.”

Being bullied may also increase the risk of suicide in another way: by increasing aggression. In an unpublished study presented in May at the International Society for Autism Research (INSAR) meeting, a group in the Netherlands looked at experiences with bullying in 185 adolescent boys, 89 of whom have autism. The more victimization the teens faced, the more anger and fear they expressed. Compared with typical boys, though, autistic boys reacted predominantly with anger — a response that could lead to uncontrollable emotional arousal and raise the risk of suicide.

he hurts of bullying and social rebuffs may build up over time: Two out of three people diagnosed with autism as adults reported they have contemplated suicide at some point in their lives, according to a large study published in 2014. These adults “had been without support or understanding of autism for a long time,” says Sarah Cassidy, assistant professor of psychology at the University of Nottingham in the U.K.

Adults with autism face an elevated risk of suicide even after taking into account a number of known risk factors, such as unemployment, depression and anxiety, according to an unpublished study Cassidy presented at INSAR in May. “This suggests that there must be other autism-specific risk markers, which must be identified, that explain the increased risk of suicidality in this group,” Cassidy says.

One heavy burden for autistic people to carry is ‘camouflaging‘ — the attempt to hide their autism traits to fit in. Adults with autism who camouflage are eight times as likely to harm themselves as those who don’t, Cassidy’s team has found. Although many autistic adults do camouflage, the phenomenon is thought to be particularly common, and damaging, among women on the spectrum.

The effort involved in camouflaging contributes to anxiety and depression, compounding the risk of suicide. “

uicide is notoriously difficult to predict, but clinicians have a window of opportunity. “For each completed suicide, there are 25 attempts,” says Tami D. Benton, psychiatrist-in-chief at Children’s Hospital of Philadelphia. More than half of all people who die by suicide visit a healthcare provider within one month of their death.

In light of that fact, the Joint Commission, a nonprofit accreditation board for U.S. hospitals, recommended in 2016 that hospitals screen all clients for suicide risk, regardless of the reason for their visit.

Screening for depression and suicide are particularly challenging in people with autism, says Lisa Horowitz, staff scientist and a clinical psychologist at the U.S. National Institute of Mental Health. “We have every reason to believe that people with autism have higher estimates of suicide risk [than the general population],” she says, but “this is a tricky population to understand.”

In 2008, Horowitz led a multisite study to develop the Ask Suicide-Screening Questions tool, which has four questions and takes about 20 seconds to complete. Nurses or doctors refer anyone who answers ‘yes’ to one or more of the questions for further assessment. The tool was designed for typical youth aged 10 to 24, but last year, Lipkin and his colleagues began using it in their outpatient clinics at the Kennedy Krieger Institute in Baltimore.

The team offered the test to 317 autistic people aged 8 and older over two months in 2017. Roughly one in three of these people declined to take the test. Among the remaining participants, however, 13.7 percent screened positive for suicide risk. Autistic adults and parents of children with autism were more likely to decline the screen than were children and teens on the spectrum, the researchers reported at INSAR. The parents who did agree to the screen, however, were more likely to disclose suicidal behaviors than their children were — perhaps in part because children with autism can have trouble expressing themselves.

Another team has used the screen in the pediatric emergency room of Johns Hopkins Hospital in Baltimore. From May 2013 to December 2016, 42 percent of all autistic children admitted to the facility screened positive on the test; of these, 71 percent did not present with suicidal ideation. “We increase our detection of suicidal kids when we screen for it,” says Holly Wilcox, associate professor of mental health and psychiatry at Johns Hopkins University. “It gives us a window of opportunity to help them if we can link them up with appropriate services. Oftentimes, the suicidal individual will feel relieved that they were asked and they could disclose their thoughts.”