Paul Lipkin, MD.
Neurodevelopmental and developmental behavioral pediatrician. Director, Medical Outpatient Services, Kennedy Krieger Institute, Baltimore, MD.
Dr. Lipkin has served as an advisor for EarliTec and Sarepta Diagnostics. Relevant financial relationships listed for the author have been mitigated.
CCPR: How do the rates of suicidal thinking and suicide in autistic kids compare with the general population of kids?
Dr. Lipkin: Most of the data on suicide and autism comes from young adults—Kaiser Permanente in the US and public sources in England and Scandinavia. We ran a survey in 2017 with about 600 parents of autistic children where 40% said their child had expressed suicidal thoughts or behaviors. That’s an astronomical number and skewed toward families affected by suicide. The general numbers are probably between 10% and 15%, which is still much higher than the general population (Segers M and Rawana J, Autism Res 2014;7(4):507–521). It’s important to remember that the risk of injury is higher than the risk of death in most cases. We’re not just here to prevent death. We also want to prevent injury.
CCPR: How do you think other co-occurring disorders, such as depression, impact suicide risk in autistic kids?
Dr. Lipkin: Depression and anxiety play a role. In 2019, Dell’Osso found a very high rate of anxiety disorders and mood disorders in autistic children, and in 2021, Blanchard found that co-occurring conditions are probably important risk factors for suicidal thinking (Dell’Osso L et al, Compr Psychiatry 2019;91:34–38; Blanchard A et al, JAMA Netw Open 2021;4(10):e2130272). In that paper, the odds of both self-harm and suicidality in autistic children and adults were three times the odds in those without autism.
CCPR: What is the impact of other factors on suicidality in autism such as social communication problems?
Dr. Lipkin: The social communication piece is a factor, with misuse or misunderstanding of language. Children on the spectrum are frequently bullied, and many experience loneliness with social isolation, which might lead to suicidal thinking. Perseverative and repetitive thinking are probably important too.
CCPR: How do you differentiate self-injurious behavior from suicidality in autistic children and teens?
Dr. Lipkin: Autistic children who have suicidal behavior tend to be in the mild range of intellectual disabilities or learning disabilities. Children with classic self-injurious behavior tend to have more severe disabilities and repetitive behaviors (eg, biting or slapping themselves, or banging their head against the wall). In many cases, this behavior is an expression of anger or sadness, but there’s no clear wish to no longer be alive. If a child talks specifically about dying or not wanting to live, then it needs to be taken seriously as a suicidal thought regardless of degree of learning or language challenges.
CCPR: Are there common patterns in how autistic kids communicate and think about suicide that might help us to see it from their point of view?
Dr. Lipkin: Age and language skills are important factors in the way suicide words are used. Language problems can either be receptive or expressive. The child may have a hard time interpreting other people’s language and at the same time have difficulty expressing themselves. They might say “I’m going to hang myself” without knowing what that means. Or a child who is in distress may not have the means to tell anybody. Neurotypical children at different levels of verbal expression have different ways of expressing themselves and understanding concepts. It’s hard to generalize, and the words that the children choose can steer the listener in confusing directions. An 8-year-old neurotypical child will often say things like “I wish I were dead. I want to kill myself.” At age 8, neurotypical children have a limited understanding of the consequences of their actions, of death, and of the words that we all use every day associated with death. These statements indicate distress but usually not a wish to self-harm or die. This is not the same as a 15-year-old who would say the same thing in terms of vocabulary, but with a different understanding of death and understanding of consequences.
CCPR: How do autistic kids and teens express suicidality?
Dr. Lipkin: It varies. Autistic children ages 13–18 may express themselves like younger, neurotypical children. That said, autistic teens with expressive and intellectual skills closer to neurotypical teens may have suicidal thoughts like neurotypical kids their age and talk about them in a similar way. We need to strike a balance between saying “Oh, you don’t have to worry about him; he’s too young to understand these things” and thinking that every child who says “I wish I were dead” is a suicide risk.
CCPR: Does social contagion occur in autistic youth? We have seen some of this in the general teen population associated with the recent series 13 Reasons Why.
Dr. Lipkin: We have not seen that kind of social contagion, but older autistic teens and young adults may tend toward social misinterpretation and not considering the consequences of their actions. They may hurt themselves by imitating what’s on TV. Conversely, some autistic people have a problem stepping into other people’s shoes. They can’t absorb another’s experience into their own, and maybe that’s a protective factor.
CCPR: Are there differences in suicidality in autistic kids and teens related to gender, culture, or race?
Dr. Lipkin: Suicidal behavior is much higher in Black communities than in other communities in general as well as for children living in poverty. Also, in the general population, more males tend to die from suicide attempts because they’re more likely to use firearms than girls. In the autism community, we don’t have data on firearm risks. Perhaps firearm deaths are less of a risk with more limited access to lethal weapons and more safeguards put in place by family and others, as well as frequent problems in learning and motor skills in autistic youth.
CCPR: How do you and your colleagues screen for suicidality in autistic patients?
Dr. Lipkin: At Kennedy Krieger Institute, we now routinely screen all children for suicidality every three to six months in both medical and behavioral health programs (Rybczynski S et al, J Dev Behav Pediatr 2022;43(4):181–187; www.tinyurl.com/34znxsh4). Over the past five years, it has become a normal part of our practice. Most parents now accept it as routine just like checking the child’s pulse and blood pressure when they come for a visit and often appreciate it because they see the stories about suicide in the media. The ideal with children is asking them separately from their parents.
CCPR: What screening tool do you use?
Dr. Lipkin: We use the Ask Suicide Screening Questions (ASQ), which the National Institute for Mental Health (NIMH) developed for neurotypical children (Editor’s note: See “Suicide Assessment Tools for Autistic Adolescents and Teens” table). A lot of people have been afraid to ask these questions because they’re afraid of putting ideas in children’s heads. There’s no evidence to support this conception. The fear of initiating suicidal thought and behavior is unfounded. But on the other hand, we know that children who have never been asked before are reporting these thoughts.
Table: Suicide Assessment Tools for Autistic Adolescents and Teens
(click to view full size PDF)
CCPR: Do you modify the ASQ for autistic kids and teens?
Dr. Lipkin: In our research, we are validating a modification of the assessment for youth with autism or developmental disorders. We are testing a version using simpler vocabulary along with questions to learn about their understanding of death. We are also comparing the ASQ and our modifications for the autism community to the NIMH Brief Suicide Safety Assessment (BSSA) (www.tinyurl.com/bdfeddk5). We hope to have enough data to share these in about a year. Many child psychiatrists know the Columbia-Suicide Severity Rating Scale (C-SSRS), which has become a national standard; however, it’s longer and has more complex language, so it may be less useful for autistic children. We are also comparing the ASQ to the Suicidal Ideation Questionnaire (SIQ) for children in our sample of children with autism and other developmental disabilities.
CCPR: What comes next after screening?
Dr. Lipkin: For children who screen positive, we follow up with a more detailed suicide assessment and suicide safety planning by psychiatrists and behavioral health clinicians. This does require more in-depth questioning and more clinician experience than the ASQ. For clinicians, I would take any expression of suicidal thought or suicidal verbalization seriously and then do a more in-depth interview and ask about duration of thoughts, thoughts about suicidal actions, any suicide preparation that the child or teen may have, and presence of firearms in the home since this is the most common cause for death by suicide. This is the same thing one would do with neurotypical children who express suicidal thoughts to make sure that they are in a safe place and see if they need any more help and attention.
CCPR: Can you talk about the different levels of care to treat suicidality in autistic children and teens?
Dr. Lipkin: Yes. I had an 18-year-old autistic woman hospitalized on an adult psychiatry unit, and they had no idea how to work with her perseverative ideation. That was striking because in Baltimore we have excellent hospitals and professionals. And I worry even more about children in the heartland where there aren’t such specialized resources available. In any treatment setting, we need to look beyond the person’s language and consider their disabilities and their complexities. In outpatient settings, we are delivering traditional care related to impulsivity or mood or anxiety and trying to figure out what the right approach is. We know how to create a safety plan for a neurotypical 14-year-old. We make sure that harmful things aren’t available and help them express their thoughts. But autistic children may need an alternative means such as visual picture stories or discussions through play for expressing their thoughts, and we may need similar ways of responding back to them.
CCPR: How do you decide what level of care is needed for a suicidal autistic patient?
Dr. Lipkin: For any child with active ideation, if we think that they may do something that day if given the opportunity, we send them for further evaluation at a hospital where they can be seen by a psychiatrist or behavioral health clinician. For children who have general thoughts, but not active thoughts of harming themselves, we try to verify that they have mental health providers already, and we contact those providers so that they are aware. If they do not, we connect them as soon as possible with psychiatrists and therapists. And we emphasize discussion with the child and the parents on a regular basis about these thoughts (Jager-Hyman S et al, J Autism Dev Disord 2020;50(10):3450–3461).
CCPR: Do you have guidance when schools want you to “clear” an autistic child to return to school after talking about suicide?
Dr. Lipkin: I’d rather schools err on the side of over-concern rather than under-concern, making that judgment to prompt further clinical evaluation. When the child seems safe, it can put the school at ease and inform the school as to how to interpret the child’s comments. This includes recommending good supervision to prevent bullying that might trigger the suicidality.
CCPR: Thank you for your time, Dr. Lipkin.
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