The suicide rate for children and adults with an autism diagnosis is higher than the neurotypical population. In this special episode, Dr. Steven Gutstein talks about the idea behind suicidality and why so many young adults and adults with autism feel like they don’t want to live. 

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Kat Lee: Welcome back to ASD, A New Perspective, the podcast show where we help you understand what is going on in the mind of your child, and we encourage you, that growth for your child is possible. In this week’s podcast, Dr. Gutstein discusses a very challenging topic for those of us who are parents, autism and suicide. Let’s listen in to what he has to say.

Dr. Gutstein: I wanna switch a little bit, from the idea of completed suicides, which are very dramatic and very powerful, need to be addressed, but there’s a step before that, which is the concept of suicidality, the concept of… Or the feeling like you don’t wanna live, that life is not worth living, that walking through life, the sense of hopelessness, helplessness, depression, and things aren’t gonna get better, having some of the story that doesn’t seem to change about your life and… Well, again, I don’t wanna ignore completed suicides, they are statistically rare, they’re powerful, they’re extremely important. But they still, even though there are more of them per capita with people with autism, it’s still pretty rare event. But let’s compare that to data about suicidality, and if you look at some of the recent studies… It’s really concerning. For instance, Cassidy and Carly, Cassidy has done a lot of work on suicide and autism.

Dr. Gutstein: Now just recently, a study published in 2020 that 72% of what we call high functioning adults with autism score above the clinical cutoff score for suicidality. Suicide risk, significant suicide risk, 72%, okay. Three-quarters, basically of high-functioning adults in their sample, large sample, self-rated, rated themselves as being significantly suicidal. And again, this is not longitudinal it’s cross-sectional, but still… Very powerful statement. Similarly, when we looked at children and adolescents, a study by a psychologist named License in 2019, found that that one-quarter of parents reported that the children or teenagers engaged in some kind of significant self-harm. And of course, we talk about the numerous several studies that show that over 80% of high-functioning adults with autism report some kind of lifetime psychiatric conditions compared to about 20% of controls or comparison… About 20%… This was a study by Dow and colleagues found that 20% reported history of suicide attempts. Okay.

Dr. Gutstein: But I wanna go back to this, it’s actually the idea of suicidality rather than the completion… I’m really gonna focus on the completion, given that is significant, as someone who was a suicidologist back in the 1980s, it was very important to me to prevent that completion so that we could be able to help people, obviously. But let’s take a step back now and just look at this idea of suicidality and what it means. Why is it that we’re talking about three-quarters of a group of people, and this is different than any other clinical population that significantly considers killing themselves, these are what we think of as the most successful people in a spectrum, right. What’s going on there? And again, we take a step back from that, it’s like, why are so many people depressed, I guess anxious and depressed, but depression being huge. But why is the suicidality even stronger than the number of people who are depressed, who report depression or clinical depression, it’s a very powerful piece of information. Tells us maybe that we have to have some change in paradox.

Dr. Gutstein: I mean, just look at that one piece of data, forget about anything else. Forget about employment. You could argue, okay, well, maybe everybody doesn’t need to be happy to have a job, and doesn’t need a job to be happy, I wouldn’t agree. Or be able to live independently to be happy, can live with other people, or doesn’t have to have relationships, you can make all kinds of arguments. How do you make an argument that somebody can be… Have a good life or well-being and be wanting to kill themselves? I don’t think you can make that argument. So there’s something very fundamentally wrong when three-quarters of a population, and this Cassidy… Their group is the most reputable group in studying… They’re like the gold standard for studying suicidality and autism, so it’s not like it should be a weird thing, and they’ve been studying the phenomena since 2014 of suicidality, which is longer than anyone else really, and very carefully over the years. So we have to think about that.

Dr. Gutstein: Why is this happening? And when we think about what people… Alright. So people are alarmed by this idea of suicidality and autism, to the extent, there’s been about 30 papers written over the last five years about it, where it wasn’t talking about it all until 2014. And now it became a big topic, but it’s been dealt with in a very superficial way. Yes, it’s important, this work is important, looking at just what’s going on, but in terms of what to do about it, they hadn’t really touched the surface. One thing they realized is that… Researchers are agreed on, is that there’s something about having this diagnosis that makes you much more at risk for suicidality, than just depression itself. Even though depression is a risk factor. And there are other things that I looked at for being a risk factor on top of other things.

Dr. Gutstein: The… And there are several other things as well. But there’s something about being in this autism culture, alright… Being diagnosed with it, being served and getting intervention or not, whatever, that seems to be associated then eventually with not wanting to live anymore, right. And it doesn’t seem to me that any early interventions make much of a difference, although that hadn’t been carefully studied, but there’s no reason to think it does, or any group that does. So what’s going on? 

Dr. Gutstein: Well, one of the things that’s been discussed is this issue of camouflaging. I don’t know if you know that term, it’s a very unclear term, it’s used in a number of different ways. And let me explain what I believe how camouflaging plays a role here. We all camouflage, we all… If you think about camouflaging, is we have a social self that we employ when we’re with certain… In certain interactions, certain transactions, whether you’re at the bank, or when you’re waiting the elevator, going to a job interview, etcetera, etcetera, etcetera. Sometimes just at work period, your work self, various levels of social self, which is… We ourselves identify that, at the same time we’re doing that, we make a distinction between our social self, that what we’re projecting and who we really are, our authentic core self. And we don’t find it exceptionally pleasant to be out there with our social selves, at least most of us don’t, right. But we do it and we learn to do it and we learn you have to do it, right. But while we’re doing it, we don’t mix that up with who we are. So in that respect, everybody camouflages. And some people think about camouflaging if you have autism is, not stimming, or not doing certain things when you with certain people, but we all… Again, we all have to do that to some degree, in certain situations.

Dr. Gutstein: But for people with autism… I wanna take you back to Donna Williams, who is now deceased, but for many years, who really tried to help people understand this dilemma a little bit more, camouflaging. What she talked about was when I’m with others, there is no self. So she took camouflaging to that level, which is that, what happens when I’m in a social domain is there’s only what’s happening with you, and the me is gone. And then after I’m with you, the me stays gone, I don’t know how to find me again, I lose me. There is no me. It disappears. Which is really scary. And very few of us have that experience of… We know that when we’re doing that social dance with people who we’re not very intimate with, we know that that’s a little thing we do. As we say, we put on our social self, and that we can go back to being ourselves after that transaction or when that’s not happening with other people. And we desire relationships where we don’t have to do that with people. Not that we are going to be mean or rude, but we don’t have to put on that camouflage, they can affirm who we really are as people. But what happens if you don’t know… What happens if your social life, your entire social world becomes one of camouflage, becomes one of a social self and there is no sense of you being you, your real you, your core you with another person? Okay, imagine having a life where that’s true.

Dr. Gutstein:: Imagine going through the days, going through your life where no matter what the relationship is, it’s one where you are not you. You are what you think that person wants, you are some type of camouflage, you are some type of… Imagine the emptiness there, imagine the stress and the strain of that. Very different, yeah, it can be stressful to know you gotta be a certain way with the boss or certain colleagues or in the elevator or whatever, but there’s nothing like the stress of knowing that your entire life, any kind of encounter, any kind of interaction, that it’s all gonna be that. And not only the stress of it but the emptiness of it, the lack of pay off of it. The idea that, what’s the point of living in a world where it’s all about camouflage where there is nothing else? There’s nothing deeper, there’s nothing… Right, there are no relationships because there is no me. And how do I develop a sense of me and me is continuing but also evolving and growing and changing and adapting, right? Well, you don’t.

Dr. Gutstein: So one critical aspect here we don’t really consider is this concept of camouflage in a maybe a different way than some of you thought about it. And it clearly is a factor in suicidality and autism. And it’s also, when you think about it, it also runs into a lot of what we do to try to provide support to people with autism. Now, I wanna move it a little bit off that topic a little bit because I think there are certainly two trends in how we try to deal with providing what we might call support to teenagers, adults, people who are now moving out of that system of compensations, if we’ve set that up for them into the what we call the real world, right. And one is, we might try to provide counseling, job coaching groups, whatever support, I call it that. The other is what we might think of as neuro-diversity… Some aspects of a neuro-diversity movement where we encourage people to assume a primary identity of having autism. And then we expect or require or try to lobby the world to adapt to whatever that means to us, to those common characteristics, which I don’t know if they exist, of people with autism.

Dr. Gutstein: Now, here’s the danger here. Okay, so let’s assume now that we go that route, that’s the other route of… And I’m just using that term neuro-diversity for the sake of it. I don’t wanna get hung up on it. So now instead of having this social identity, I have an identity of being autistic, you can see that that really leads you into the same trap, there’s several things about that are problematic. One is that it has nothing to do with who I am as a person. It’s a piece. Just like I have ADD, it’s a piece of me, but it’s not me, and certainly not the part of me that I wanna be the central part of me. I don’t want the central part of me that I’m part of this club of people with ADD in the world, and that’s who we are. I don’t necessarily have anything to do with those people. And some of those people and it doesn’t… It distracts me from the idea of understanding me. Yeah, it tells me a little bit about… In terms how the ADD manifests, bio, psycho, socially for me, some of my needs, some of my vulnerabilities, maybe you could argue some of my resources, but maybe not, but other than that, if that becomes the primary way I identify myself, then it cuts off any opportunities for self-growth and self-development, self-understanding, that’s one issue.

Dr. Gutstein: The second issue, which is a danger, is the idea that I would then expect the world to adapt to me, and there is an element in the neuro-diversity movement is we will lobby the world to compensate for us to come in environment or niches where we can thrive. There’s several problems with that, and one problem that’s a huge problem with that is that the world isn’t gonna do it, most of the time. Yeah, we read about exceptions and they’re really exciting and very nice, and we see certain… Employers at certain places that do that, 99.9% of the time, the world isn’t gonna adapt to you and you’re gonna be disappointed. But there’s a second part of that, which is that if that’s your primary expectation or belief in how you could be successful in the world, then you have no sense of personal… You don’t have to develop any sense of personal agency yourself and efficacy, the sense that you can develop the resources to be competent in a multitude of different environments, that you have to have some kind of outside force to create an environment for you, and that’s really different than, you have the capacity to understand yourself enough to find a good niche for yourself.

Dr. Gutstein: Now, I’ve been talking with Rachelle and other people about some of our successful young adults, and we have a number of them, and what’s interesting to me is none of them is very involved in that movement, not one. They only know they have ASD, no denial, but not one of them is involved with any kind of online meetings or, they don’t identify at primarily… They know they have autism, it’s part of them, but they don’t identify as that is primary who they are, they have… And they’re very different from one another, in terms of everything. In terms of their things they enjoy. The things that they do for a living, from musicians to creative artists, to bank managers, to security, to aerospace consultants, to… You name it, we have a variety of young adults who are doing just a number of diverse things, and they can be very different, some are outgoing, risk… More risk-taking, more… Managing uncertainty, some are a little bit less in that respect.

Dr. Gutstein: One guy said to Rachelle… A kid he was saying to Rachelle, “I wanna be a beta tester for software when I grow up ’cause I love to figure out what’s wrong with the programs, I’d love to do that.” He sort of knows himself, like that, and now you could say, “That’s a known of autism.” But it’s not you see, of those other adults we talk about, none of them actually wanna be beta… They don’t wanna do that, that’s not their inclination, you start stereotyping people with autism, you see what it does to them. It limits them in a very dramatic way, and it gives them the impression that they’re trapped, that somehow autism is something that entraps them, is something that is there, that keeps them from doing something. It’s not them.

Dr. Gutstein: And again, what do we know about autism, bio, psycho, socially. It’s very heterogeneous… The thing that’s in common is that people with autism very early on lose the opportunity for a type of growth, in critical part of mental growth, that mental and neuro growth for a variety of different reasons, vulnerabilities, and therefore what we wanna do is provide them opportunities for growth, but that is it… That’s what they have in common. Right, in terms of the specific vulnerabilities, their resources, their strengths, the interest, is just like anybody else, any other group of people.

Dr. Gutstein: But anyway, that’s what we see is that’s… So offering generic types of support is one solution that’s being offered, everyone with autism should have a job coach or this or that, and then the other is what I call the neuro-diversity movement, which is then you lobby for the world to become more comfortable for you or more suited to you. I wish… And that’s great. I’m more interested in understanding that they’re looking for niches that fit our unique needs and desires, but I’d like the world to be more comfortable for me too, we all do, but we can’t… But when we assume that that’s the primary route for our having a quality of life, for our well-being, then we’re in a real trap, right? We’re in a real, we have a real problem because we expect the world to adapt to us, we don’t expect that we’re going to adapt in many ways to the world, and again, there’s different ways to adapt, sometimes we can’t expect the world to adapt to us our needs, but often, we can’t be sure of that.

Dr. Gutstein: Sometimes adapting means figuring out the right niche between the environment and your own, knowing yourself well enough to find the right fit or the best fit possible between your resources, your personal resources, your personal vulnerabilities, and what the environment has to offer you… But often it becomes a matter of you being able to grow, to develop in a certain way, or grow in a certain way so that you can thrive in changed environments. Now, there’s another sense that often, very frequently people are thinking about adapting, which is like a more of a survival sense. I have to change my behavior to fit in, a fitting in piece, gets back to camouflaging, fitting in. The problem with that concept of adaptation is that it really is extremely limiting, it means I have to the alter behaviors to do things. It has no concept… There’s no concept of growth in there. To me, humans, when we talk about human adaptation, we talk about… I believe it has to be connected with growth.

Dr. Gutstein: Yes, you can talk about survival, you can talk about adapting on a day-to-day basis so you can get by. But ultimately, that leads us to the same dead end. That leads to the place where life doesn’t become worth living. To me, the unique element of human adaptation is our ability for personal evolution, the ability that our minds continue, that we have this extended period through a mind-guiding relationship. And eventually through finding other guides, peers, our own self guiding, for lifelong mental, self and relational growth. And we’re built to grow. When we stop growing, we might as well stop living.

Dr. Gutstein: We lose the capacity for growing, we lose the capacity to extend what we do into new places, to expand our mental tools or capacities in new ways, to transform in certain ways without losing our core sense of self. When we lose that, then life becomes pretty dull, two-dimensional, hopeless. But within that, we have to just maintain a sense of self-agency, a sense of self-efficacy, a sense that we can manage situations, we can cope with situations. We have to develop the experiences, we have to be able to use those experiences, to be able to retrieve them and have them so that we can perceive ourselves as not being afraid of new challenges, that adapting becomes something that whether we want to or not, whether we have to or we choose to become experiences that have the potential for growth.

Dr. Gutstein: What’s interesting is when we go back to the autism literature, if you ever do that, take a look, do a search, take a look for either growth and autism. The people with autism, not coping, not compensating, not support, not learning skills, but growth, personal growth, life-long growth. You’re not gonna find much of anything about growth. What is growth? Growth depends on, not survival, not fitting in, it depends on having opportunities. And we all know this, they are just a little bit ahead developmentally of where you are now, in terms of your competence, in terms of your capabilities, and having an environment where you can take that risk, where you can take that leap without catastrophic consequences, it requires a growth environment. Growth require… Sounds like a tautology, growth requires growth environments. But growth environments require… If we’re gonna set up growth environments, what do they require? They require a large investment upfront and understanding that in person, not as… In autism, but as an individual, as a biopsychosocial entity.

Dr. Gutstein: What do I mean by that? It’s biologically someone who has their own set of limitations and resources, some of which can be expanded, some of which can grow, some of which can develop, some which are pretty fixed. Psychosocial, psychologically, someone who has their own psychological history when we start with them, some sense of beliefs or expectations when we begin, some of which are productive, some which are not productive. As their own set of mental tools were not… That we have to understand before we understand how to improve those. Socially is in a certain social milieu, has a certain social history, has a certain social cultural world that they live in, that they inhabit that provides resources also has limitations as well.

Dr. Gutstein: So here’s the deal, to be able to create growth opportunities so that people can learn to adapt and grow throughout life, we have to provide growth environments, and these are long-term growth environments. We don’t do that for people with autism, we don’t provide growth environments. We provide certain discrete skill environments, we provide “support”, whatever that means. But all of that is based on the fact that your identity is one as someone with autism, that’s who you are, you’re an autism. So we do autism treatments, autism interventions, autism support, autism groups. What’s interesting is that when we deal with young children, we’re seeing in our culture to provide lots of money upfront for hours and hours of teaching skills that they’re already gonna develop anyway. We do that for several years, then when that ends, we provide little short-term… The only thing that’ll get funded is little short-term groups and skills for little discrete things along the way, support or social skills or whatever job skills, whatever. But neither of those has anything to do with mental growth or self-growth, no.

Dr. Gutstein: And so there’s no reason for people to expect the people with autism, high functioning, are gonna even understand the concept of growth or perceive themselves as individuals who are able to maintain continuity while they grow. They’re able to balance those two things throughout their lives. Or have had even experiences in that. So when they’re faced with challenges, they don’t have any history of that. They don’t have the skills. They don’t have the history. They don’t have a sense of self of it, and so things feel pretty dead, feel helpless, feel if they can’t change. Now, what I say about RDI is we don’t provide autism treatment. That may seem very radical. We don’t do autism treatment.Dr. Gutstein: In fact, I think that’s a very bad thing to do. What we do do is we understand autism, people who have that, and we understand that because of no fault of anyone, they are unable, they don’t get the benefit of a guiding relationship, what I call a mind-guiding relationship. They lose that opportunity. And the rest then is pretty predictable. And that our job is to, which is the growth environment, mental and self-growth environment. So our job is for each one of those people to provide that. The thing we do the same is, the goal is the same, which is to provide those growth opportunities for everybody we see, if possible. But then we don’t want to treat them as autisms. We have to then, and this is where the investment has to be up front. It can’t be, then we have a cookbook treatment because each person’s then gonna be unique. The key is then we spend the resources up front and ongoing, but especially upfront to try to understand what is this person as a unique biopsychosocial entity? And oftentimes, that will occur over time. We get a little glimpse of who they can be or what they need. And as they develop, as they start to grow, we start to see more and more of them as unique entities, unique systems involved in a unique system, and we can tailor what we’re doing based on that and continue to support the development, curate whatever development of this mind-guiding relationship with your family.

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Kat Lee: Thanks for joining us for this special edition of ASD, A New Perspective, the podcast show where we help you understand what is going on in the mind of your child, and we do encourage you that growth for your child is possible. I’m Kat Lee. See you next time.

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