Autism and Suicidal Thinking: ‘Alarming’ New Insights

For years, researchers have had few clues about how often young people with autism experience suicidal thoughts and behaviors. Much of that has to do with the fact that traditional suicide risk-screening tools are inadequate for people with autism—which can include significant communication differences.

So when researchers at Baltimore’s Kennedy Krieger Institute surveyed over 950 caregivers of children with autism spectrum disorder, they were just trying to gain a basic scope of the problem.

They did not expect the startling results: Of the nearly 400 autistic children who did report wanting to die, a staggering 35% experienced onset at 8 years old and younger. In addition, 18% of those reporting such thinking also had a suicide planned, according to the findings published in JAMA Pediatrics.

That rate is “significantly higher” compared with the age group’s neurotypical peers—and means urgent work must be done to better equip researchers, doctors, and caregivers to help vulnerable children, says Benjamin Schindel, a fellow in neurodevelopmental disabilities at the institute and lead author of the paper.

What have been the assumptions about suicidal thoughts among children with autism?
Historically, the assumption was that an intellectual disability was a protective factor against suicide—because people with intellectual disabilities were not cognitively able to have a conception of death or have a conception of suicide. We’re learning that seems to not be the case.

How has recent research sought to broaden an understanding of these risks?  
The Kennedy Krieger Institute has started administering more specific screenings with a national network of caregivers. That has included a questionnaire on mental health and suicidal behaviors—which just directly addressed the onset of and the presence of suicidal thoughts and some suicidal behaviors in our sample of individuals with autism.

What surfaced from your questioning? 
The questionnaire asked a sort of binary question: “Has your child ever expressed feelings of wanting to die, not wanting to live anymore?” Those who answered affirmatively then answered a follow-up question about the age at which those feelings started. 

That was the part that blew us away—because it turned out that the common age of onset of those suicidal thoughts was 8 years old or younger. I don’t think any of us really expected that.

>How does that compare with this group’s neurotypical peers? 
Previous research we cite shows that among children younger than age 10, the prevalence of suicidal thoughts is less than 1%, and then it rises pretty steadily in adolescence.

So for us to have 35% of our sample at 8 years old or younger beginning to have suicidal thoughts differs quite a bit from the neurotypical population. 

What factors are driving this high rate? 
That is not entirely clear just yet. But what is clear is that this onset is just happening so much younger and the frequency is much greater—so the factors that we have to think about here with this population seem to be pretty unique.

One consideration is the importance of communication differences. It’s possible that because of language and communication difficulties, a person with autism will report suicidal thoughts differently than a neurotypical peer might.

The other interpretation is that we know that individuals with all sorts of disabilities—including autism—are susceptible to bullying. Things are just more difficult for them on account of the discrepancy between their capacity and their environmental demands.

 We don’t know exactly how to interpret these findings, but it would be a mistake to disregard these warnings.

What do we know about how these thoughts translate to risk of death? 
There are some data suggesting that young people with disabilities like ADHD might have elevated risk of suicidal behavior and death by suicide. But by and large, the data are pretty scarce on suicidal behaviors and death by suicide in individuals with developmental disabilities; that is an area we want to expand our research.

What are other next research steps? 
I see three areas. We need a real sense of how sensitive and specific our suicide screening tools are for people with developmental disabilities when it comes to predicting suicidal behaviors and deaths by suicide in the same way as they do for individuals without disabilities.

The second focus is creating a validated screening tool for people with disabilities, since current screening tools just don’t exist for individuals operating with cognitive or communicative limitations.

The third thing we need to do is drill down into the particular ways various disabilities and functional deficits can contribute to suicidal thoughts and behaviors.

How can caregivers help children who are at risk? 
The reality is that individuals with disabilities do indeed develop suicidal thoughts. We think that they do act on suicidal thoughts. And the ages appear to be younger than among neurotypical peers. 

I think any caregiver would rightly be concerned about these facts—but it’s not a hopeless situation.

The most important thing is to check in with these children and just ask. Don’t assume that a person’s cognitive or language limitations preclude them from having the capacity for suicidal thoughts or suicidal actions. Not taking seriously a person’s suicidal thoughts could be a potentially deadly mistake.

It’s important to be specific and concrete with our language. Someone might not understand a question like, “Have you recently thought about killing yourself?”—if terms like “recently” haven’t been defined.

And we want to make sure that there’s a safety plan in place: If there are guns in the house, they need to be locked up, and medications should be out of reach.

Kate Harrison Belz is a freelance journalist and editorial specialist based in Chattanooga, Tennessee. 

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