Joshua Feder, MD, and Mara Goverman, LCSW, have disclosed no relevant financial or other interests in any commercial companies pertaining to this educational activity.
JOSH FEDER: Autistic kids and teens can become despondent or suicidal. When this happens, we need to take it as seriously as with anyone else. In today's podcast, Mara and I will explore the distinction between self-injurious behavior and suicidality in autistic children, communication patterns related to suicide, the screening process for identifying suicidality, and the different levels of care required to effectively address this issue.
Dr. Paul Lipkin joins us today to provide insights on modifying assessment approaches to facilitate effective communication with autistic individuals, in order to address this problem.
JOSH FEDER: Welcome to the Carlat Psychiatry Podcast. This is another special episode from the Child Psychiatry team. I'm Dr. Josh Feder, the editor in chief of the Carlat Child Psychiatry Report and co-author of the Child Medication Factbook for Psychiatric Practice. Second edition, 2023, and prescribing psychotropics.
MARA GOVERMAN: And I'm Mara Goverman, a licensed clinical social worker in Southern California with a private practice, and an avid reader of The Carlat Psychiatry Report. So let's start by talking about how self-injurious behavior and suicidality can be differentiated in autistic children and teens. Usually, autistic children who display suicidal behavior tend to have milder intellectual disabilities or learning disabilities.
On the other hand, children who exhibit classic self-injurious behavior typically have more severe disabilities and engage in repetitive behaviors like biting, slapping themselves, or banging their head against walls or floors.
JOSH FEDER: This behavior often stems from feelings of anger or sadness, but it doesn't always indicate a clear desire to end one's life. However, if a child explicitly talks about death or expresses a lack of desire to live, it should be taken seriously as a suicidal thought regardless of learning or language challenges.
MARA GOVERMAN: Absolutely. We also need to consider how other co-occurring conditions like depression and anxiety affect the risk of suicide in autistic kids.
In 2019, researchers conducted a study to examine mood symptoms, suicidal thoughts, and behaviors in individuals with full criteria for DSM 5 Autistic Spectrum Disorder, another group with autistic traits, and a neurotypical control group. The study aimed to identify which autistic features could predict suicidal thoughts and behaviors. The results showed a high prevalence of anxiety and mood disorders among autistic children.
JOSH FEDER: Besides depression and anxiety, autistic kids face a whole range of challenges. They deal with issues like social communication, sensory problems, motor difficulties, comprehension problems, and the unfortunate problem of social media bullying.
Social communication plays a big role in influencing suicidal thoughts in autistic children. They often have trouble using or understanding language which makes them more susceptible to bullying, feelings of loneliness, and social isolation. All of this can lead to thoughts of suicide, and on top of that, their tendency towards perseverative and repetitive thinking makes it even harder for them to shake off negative thoughts or ideas about hurting themselves once they take hold.
MARA GOVERMAN: So how do the rates of suicidal thinking and suicide in autistic kids compare with the general population of kids? In 2021, a group of researchers conducted a study that suggested co-occurring conditions are significant risk factors for suicidal thinking. According to their findings, autistic children and adults were three times more likely to engage in self-harm and have suicidal thoughts compared to those without autism.
Dr. Lipkin, I'm curious to hear your thoughts on these statistics and what they mean for autistic children and teens.
PAUL LIPKIN: Most of the data on suicide and autism has come from young adults, in fact, from large public health resources, Kaiser Permanente in the United States, England, Scandinavia, but it's mostly come from older individuals.
In children, we're just starting to collect that data. We ourselves in the Interactive Autism Network did a survey that really got me really focused on this, me specifically. This was around 2016. We wrote the survey we ran in 2017. It's not in print. It's been presented at meetings, but we had about 600 parents complete the survey, and we got numbers as high as, you know, as 40 percent of parents as a child has expressed some sort of ideation, some sort of thought about wishing they were dead.
So that's an astronomical number. The numbers that people seem to be settling on in the autism community, in children particularly, is probably more sort of at the 10 to 15%, which is still much higher than the general population.
MARA GOVERMAN: That's a large percentage. 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
PAUL LIPKIN: Language is important. The child with autism has a hard time interpreting other people's language and misunderstanding what people are saying. And at the same time, they have a difficulty expressing themselves as well. And so, they misexpress these thoughts and ideas. Either say something outwardly worrisome, “Oh, I'm going to hang myself”, without really knowing what that means. Or vice versa, just a child who is in distress and has no means for telling anybody that. So, I think language is an important component.
JOSH FEDER: Suicidal thoughts in autistic kids and teens can manifest in various ways. Autistic teens might express their feelings similarly to younger neurotypical children. However, autistic teens whose expressive and intellectual abilities are on par with neurotypical teens may experience and express suicidal thoughts in a manner similar to their peers. It's important for us to strike a balance between dismissing concerns by saying things like, “oh, don't worry about him, he's too young to understand such things”, and automatically assuming that any child expressing thoughts like, “I wish I were dead”, is at immediate risk of suicide.
Dr. Lipkin, do you have any data on whether social contagion has any impact on autistic youth? We've observed instances of this phenomenon among the general teenage population. For instance, in relation to the recent series, 13 Reasons Why.
PAUL LIPKIN: Even though I haven't seen it, I would worry about that as well, the older teens and then the young adults. Because, again, they may have a tendency to have social misinterpretation and really not to be thinking about the consequences of their actions. And so, yeah, while I haven't seen social contagion as a factor, I'm not convinced that it's not a factor at this point in time. But, you know, one more piece of this is that some autistic people really have a genuine problem with putting themselves in other people's feet, you know, so they can't necessarily absorb someone else's experience into their own, and maybe that's a little bit of a protective factor as well.
MARA GOVERMAN: When it comes to suicidality among autistic kids and teens, there are various factors that come into play, such as gender, culture, and race. We've seen higher rates of suicidal behavior in Black communities and among children living in poverty compared to other communities. And in the general population, males tend to have a higher fatality rate from suicide attempts mainly due to their greater use of firearms compared to females. However, we don't have enough data specifically on firearm risks within the autism community. It's possible that factors like limited access to lethal weapons, increased safeguards put in place by family members and others, and the challenges autistic youths face in learning and motor skills contribute to a reduced risk of firearm related deaths.
Dr. Lipkin, I'm curious about how you and your colleagues go about screening for suicidality in autistic patients. What methods do you use?
PAUL LIPKIN: Well, at our institution, Kennedy Krieger Institute, we actually have had a staff transformation over the past five years. When we first started looking at this and thinking about screening children, there was a lot of skepticism, a lot of concern. What do we do with this information? What And again, my colleague, Susanna Repchinsky, and I shared the belief that, you know, what we want to do is to prevent injury and death. So, we are now routinely on every child who's being seen by any healthcare professional, including psychologists and, our mental health professionals in social work, every child is screened once every three to six months for suicidal thoughts and behavior. The parents, interestingly, also have sort of gone through a transformation, I think, as well. So, you know, so in the beginning, we've got parents opt out. “Oh, don't ask him these questions”, “We don't want to put thoughts in his head”, you know, “This is something we don't want to go into”, “You don't have to worry about him”, “He doesn't understand things well enough”, whatever it might be. And parents now accept it as routine as checking the child's pulse and blood pressure when they come for a visit or check and see if they've been well since the last time they were seen. So, it's become a normal screening process and I think parents have come to appreciate it because they see the stories out there. You know, it's, it's all over the media in terms of, suicide. The pandemic only highlighted that. And so, I think most parents have really come to accept it as a part of their routine of care.
MARA GOVERMAN: Which screening tools do you employ in your practice?
PAUL LIPKIN: So, we're in the midst of a project now with collaborators at National Institutes of Mental Health, Lisa Horowitz and Audrey Thurm, and we are, we are essentially revalidating a suicide screening instrument called the Asked Suicide Screening Questions, or ASK, that the people at NIMH developed, and it's been validated for use in medical settings, but the language around it and its validation has been in more typical children. We are using that instrument and a whole series of new questions that have been designed with a simpler vocabulary and a broader vocabulary to see if they are better at identifying these problems in children with autism, and we're also following up with that with a frank suicide assessment for children who screen positive. So, I think for the child psychiatrist or psychologist in practice, or, you know, any kind of a specialty pediatrician who's doing this, their means for assessing suicidal thought and behavior does require a little bit more in depth questioning. We use something developed by the NIMH group called the BSSA, the Brief Suicide Safety Assessment, and there's been some modifications made in that as well for the autistic community. So, we're still testing these out. So, for the active clinician who's out there, I would take any expression of suicidal thought or suicidal verbalization seriously, and then really do a more in-depth interview and ask about duration of thoughts, thoughts about suicide actions, any suicide preparation that they may have, same thing one would do in, in other children who express suicidal thought to make sure that they are in a safe place and see if they need any more help and more attention.
A lot of child psychiatrists are familiar with the Columbia Suicide Severity Scale (C-SSRS), and that's sort of become the national standard on this. It's really not well geared and has no validation yet in children particularly and so and we're hoping that these things that we are doing will better target children.
JOSH FEDER: So, once we've done the initial screening, the next step is for psychiatrists and behavioral health clinicians to dig deeper and conduct a more detailed assessment for children who show positive signs of suicidality. This involves asking more in-depth questions and using their expertise beyond what's covered in the ASQ, otherwise known as the Ask Suicide Screening Questionnaire. It's crucial that clinicians take any expression or mention of suicidal thoughts very seriously. They should then proceed with a thorough interview to explore things like how long these thoughts have been going on, whether the child or teen has thought about taking any actions, and preparations they may have made, and even if there are firearms in the home, as that's unfortunately the most common method of suicide. We basically follow a similar process as we would with neurotypical children who express suicidal thoughts, ensuring their safety and determining if they need additional support and attention. Dr. Lipkin, what are your thoughts on different levels of care and whether existing programs are equipped to effectively address suicidality in autistic children and teens? What's your take on that?
PAUL LIPKIN: Yeah, I got into this actually because of an experience with someone that I knew who had a 17-year-old with autism and had perseverative suicidal thought. She was a teenager who by typical measures was really quite successful. She was close to graduating high school with a high school degree and could go on and probably do some degree of undergraduate education as well, but she was really having these perseverative thoughts about harming herself. She was hospitalized. She just turned 18 so, she was hospitalized on the adult psychiatry unit; at one of our local hospitals, and they had no idea how to work with her. That was really striking to me because we in Baltimore have a really excellent hospital, excellent professionals, and lots of resources available; and yet, these parents could not find the right kind of professional who really could understand their child. But, I worry less about people in New York, or Baltimore, or San Diego, and, you know, and worry more about children in the heartland. Where there aren't such specialized resources available, and so I, I think an important reason why I'm here talking with you is I think the messaging here is really important that they really need to not just look at the person's language but look at their disabilities and their complexities as they evaluate this.
So, I think inpatient units need to have somebody who has some knowledge or experience or interest in this to help guide care and as children who are coming in, you know, especially because. You know, I'm becoming convinced that these children are at a much higher prevalence of frequency of these problems than other children. I think in terms of outpatient care, which most of the children will end up being referred to, this is something we deal with every day, I don't think that we still have a clear sense as to what the best means of care. We're delivering traditional care with these children. So, a psychiatrist may make decisions about the child's appropriateness for medications or other things related to impulsivity or mood, anxiety. I think the therapists are trying to figure out themselves in real time how to deal with these issues, what the right approach is. You know, we are involved in this other study with Brenner Maddox and colleagues on figuring out the best...how do you create a safety plan for Children? When one is convinced that they do have suicide thought.
So, you know, we know how to work with a typical 14-year-old child and creating a safety plan. How you do, who you talk to, who you report to, when you have these concerns how you express it, how you reach out, and you know, we make sure that harmful things aren't available to them, and we do some of that with the children with autism, but we have to be cognizant that they may be expressing it differently, and they may need an alternative means for expressing their thought and for responding back to them about ways to prevent them from worsening.
MARA GOVERMAN: How do you decide what level of care is needed for a suicidal autistic patient?
PAUL LIPKIN: Well, we do make some judgment about acuity. So, there are children who express past suicidal thoughts or episodic suicidal thoughts, but no active ideation. Any child with active ideation, if it's judged that we think that they may do something that day, if given the opportunity, we will typically send them for further evaluation at a hospital where they can be seen by a psychiatrist. The children who have thoughts, but no active thoughts of harming themselves, we will tend to try to ensure, one, that they have mental health providers already. Obviously, if they do not, we want to connect them as soon as possible with a psychiatrist and therapist for their need.
We have a skewed sample. Most of our children already have those providers, and when a child does already have such a provider, and many children with autism will, we feel it's important to contact those providers to make them aware. They might not be aware themselves of these suicidal thoughts, and so they can actively address that, and not just be on the lookout anymore, to have a discussion with the child and with the parents on a regular basis about these thoughts.
MARA GOVERMAN: What do you see as the role of schools when an autistic student talks about suicide?
PAUL LIPKIN: I'm at a point. Where I'd rather err on the side of over concern rather than under concern. Because I think those of us who are healthcare professionals, our prime responsibility that we sometimes forget is to prevent death. So, schools are never going to be equipped to adequately do this, and they are on the front line seeing these children every day. So, I would rather the school act upon those issues, meaning...pushing the family to be seen by a health care professional, whether that's their general pediatrician or whether that's a psychiatrist or a psychologist who's treating them, someone who should take responsibility and making that judgment and doing that, and then can put this to school at ease, or at least can inform the school as to how to take these comments that the child makes.
JOSH FEDER: Before we wrap up, Dr. Lipkin, do you have any concluding thoughts on this topic or an overall message for clinicians?
PAUL LIPKIN: I'm hoping there'll be a generational shift with some of this. You know, I think that the younger physicians might more readily take this on than people who are older in the field and have never gone in that direction.
One more final thought. We talked about suicide in the context of death, but I'd like to emphasize that probably with children, injury is probably as important and maybe a more important risk than death. So, it's not just preventing a child from dying, but it's preventing a child from harming themselves physically in some way. They end up not dying from their attempt, but they still have the possibility of doing themselves significant harm. So, we're not just here to prevent death, we're here to prevent injury. That's what I tell parents all the time that we're asking these questions. Really, because we just want to prevent children from harming themselves and hurting themselves.
JOSH FEDER: The newsletter clinical update is available for subscribers to read in The Carlat Child Psychiatry Report, hopefully people will check it out! Subscribers get printed issues in the mail and email notifications when new issues are available on the website. Subscriptions also come with full access to all the articles on the website and CME credits.
MARA GOVERMAN: And everything from Carlat Publishing is independently researched and produced. There's no funding from the pharmaceutical industry.
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MARA GOVERMAN: As always, thanks for listening and have a great day.
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