Suicide in youth with autism is much more likely to be reported in writing than to a doctor.
A research study recently found that many 10- to 13-year-olds on the autism spectrum are more likely to have suicidal thoughts than their peers. Also, nearly 1 in 5 of these teens and pre-teens would not tell a psychiatrist or other health care provider verbally that they were having thoughts of suicide or harming themselves. But they were more likely than their peers without autism to report those thoughts when responding to a screening questionnaire given to them on paper or on a tablet.
“One of our recommendations for health care centers is to have both options (a spoken interview with a health care provider, plus a written self-report) when they are working with kids who they know are autistic or they might suspect might have autism,” said Jessica Schwartzman, Ph.D., a Vanderbilt Health expert in Psychiatry and Behavioral Sciences.
Suicide in autism thoughts tend to first appear when puberty does
Health care providers who work with adolescents know that “the start of puberty tends to be associated with suicidal thoughts and behaviors,” Schwartzman said.
Suicide in youth with autism is much more likely than their non-autistic peers even at 10 years old, Schwartzman said. Self-harm – for example, cutting or burning, or head-banging – is also much more common among young teens on the spectrum than among their peers who are not.
Working with other researchers, Schwartzman wanted to find out what those thoughts and experiences were like for these youth. Prior research showed that teens, young adults and even older adults with autism are more likely to have depression, suicidal thoughts and suicide attempts than those who are not on the spectrum. Previous research showed that suicide with autism is nine times more likely than the general population.
What parents know vs. what their teens are experiencing
Before Schwartzman’s research, most of what health care providers knew about these young teens’ thoughts relied on parents’ reports. “Parent report is critical, providing a different perspective on a young person’s daily life and insights that a youth can’t necessarily describe,” Schwartzman said. “But parent report is also biased. And suicidal thoughts tend to be a pretty internal experience.”
In the past five years, several joint commissions (organizations that monitor and accredit the quality of care from hospitals) made new requirements. These new rules state that health care facilities offering behavioral health (mental health) care must screen patients for their risk of suicide.
Schwartzman wondered how well the in-person screening interview would identify these thoughts and behaviors in teens on the autism spectrum. To test it, Schwartzman worked with Blythe Corbett, Ph.D., a clinical psychologist at Monroe Carell Jr. Children’s Hospital at Vanderbilt. She is co-author and mentor of Schwartzman’s study. They looked at data from clinical interviews with both patients without autism and those on the spectrum. Some patients in each group also received a questionnaire to fill out asking about their thoughts and behaviors, during the same appointment.
The study found something significant: “Youth without autism are similar in reporting suicidal thoughts to the clinician and in the self-report,” Schwartzman said. “But with autistic youth, about 1 in 5, do not tell a clinician, and instead feel more comfortable reporting it on a questionnaire.”
Schwartzman believes the reason for the difference is that the self-reports don’t require social interaction; for many of these youth, answering a questionnaire is more comfortable than telling a doctor.
“It might be more challenging for an individual to answer questions that are intensely personal to a clinician, rather than just reporting it on paper,” Corbett said.
The discovery has huge implications for the safety of youth with autism.
“This interview will miss about 20% of kids [on the spectrum] if it’s done just on its own,” Schwartzman said. “It may be contributing to so many autistic kids slipping through the cracks in our health care system and ending up in crisis.”
Two tools are better than one
The findings prompted Schwartzman to urge health care providers and hospitals to use both tools – a spoken interview by the doctor and the self-report done on paper or digitally – when working with teens who are diagnosed with autism, and even those the provider suspects might be on the spectrum even if they don’t have a diagnosis.
“An interview is a socially based approach – clinicians ask questions and kids respond – that may be stressful and confusing for some kids and it might not align with the kid’s strengths,” Schwartzman said. “We have to access kids in a way that aligns better with their communication style.”
It’s OK to ask about self-harm and suicidal thoughts
Research has shown the importance of finding ways to ask someone — whether they are on the autism spectrum or not — if they are considering self-harm or suicide, Corbett said. Being asked can be helpful to the teen, she said; it shows that the adult cares about their well-being.
“Parents can have these conversations. ‘Are you thinking about hurting yourself?’ ” Corbett said. “There is evidence to show that asking is something we should do. There is a false belief … that the asking will put the question into their head when it wasn’t there. That doesn’t happen.”
Help for your child
The Child Development team at Monroe Carell Jr. Children’s Hospital at Vanderbilt partners with families to improve the lives of children and teens with developmental and behavioral challenges.