Dr. Steven Gutstein continues his examination of the link between autism and suicide in part 2 of his podcast.

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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 always encourage you that growth for your child is possible. I’m Kat Lee and in this podcast, Dr. Gutstein continues with a very serious subject, Autism and Suicide. Let’s listen in.

Dr. Gutstein: Now, what I say about RDI is we don’t provide an autism treatment. That may seem very radical. We don’t do autism treatment. No. And 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 the mind-guiding relationship, they lose that opportunity. And the rest then is pretty predictable. And that our job is to… Which is the growth… Environmental 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 we… 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 upfront. It can’t be, then we have a cookbook treatment for them, because each person is then gonna be unique. The key is then we can spend the resources upfront and ongoing, but especially upfront, to try to understand what is this person as a unique biopsychosocial entity.

Dr. Gutstein: And oftentimes that will occur over time. We can get a little glimpse of who they can be or what they need or what… 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 the development of this mind-guiding relationship in there with their family. But it’s not… We don’t treat the autism itself ’cause it doesn’t make any sense, does it? We don’t communicate to that person that they are the same as everyone else who has autism because they’re not. They can be completely different in so many ways. It’s not important to us, is it? No. What’s important is that they have an opportunity, they have thousands of opportunities to develop those mental tools we need to thrive in complex dynamic environments. Adapting, to continue to grow, to continue to see challenges, problems as challenges, obstacles as challenges.

Dr. Gutstein: Continue to learn from those experiences so they can affirm themselves and also learn about themselves; their own vulnerabilities, their own resources, their own sense of resilience, their own ability to continue to cope with things and succeed. Their ability to develop different mental… Use their imagination to simulate different possible futures, possible pasts, make sense of things. To develop different mental frames so that they can say, “Well, you know, I need to change my way of thinking, you know how last time I got stuck on this thing and I didn’t look at the bigger picture”, or “I got too serious and I need to go back”, or “I can get so worried and maybe I don’t need to be worried this time”. And have that self-awareness, to have those… Ability to change the mental frame, the mental program that you would otherwise get stuck in and just continue and continue to do, even though it’s totally non-productive. So to be able to develop those multiple mental frames that they can adapt and use.

Dr. Gutstein: And on and on and on and on, we have a lot of things that you could… That you can develop, including your mindsets, including your motivations for growth seeking. So our goals are common in that respect of the… In mental development, but not for each person to turn out to be a mathematician or a computer programmer or a musician or whatever; we don’t care. Or for each person to be, whether they’re very social or less social, or wanting to be more of a risk-taker, a little bit less, because what happens is what we start to see, and we tell people this, right, is that after they’re starting to make progress, you more and more you start to see who they are, the autism. Which has been the defense mechanisms, because they haven’t had that guiding relationship, because they haven’t been able to grow, start to become less prominent, and what you start to see is them as people, as unique people. And they start to see themselves as unique people. Now, we don’t want them to forget where they came from. [chuckle] And in fact, it’s really important for our… As we talk to our young adults, they do… Will share that, they share that with married… Potential marriage partners, not necessarily with friends, but in very intimate faith of… Where they came from.

Dr. Gutstein: And but mostly with themselves, in the sense of “Look, here’s where I… Here’s where I was. Here’s the strength that I have. Here’s what I was able to do. Here’s the growth and the work and hard work I put in. And how I was able to achieve where I am now.” But they don’t identify now as autism because it doesn’t have any meaning. What would it mean? They can’t ask for autism compensations. I mean, hey might, if they wanna play the system a little bit in college or high school maybe get away with something or whatever. That’s a different thing but in terms of what they really feel they need, their needs are based on who they are, not based on their diagnosis, because their needs are gonna be very different. Sometimes people have great fine motor ability, some have terrible like me. Some people would be more visual, some… Their needs are gonna be very, very different. But they develop a sense of awareness of themselves. You can’t adapt if you don’t know you.

Dr. Gutstein: Because adapting is not losing yourself and becoming somebody different when the situation changes. Right? It’s recognizing what part of you remains constant and what part you’re willing to modify to be successful in a situation. There’s always a balance, there’s always a trade-off, there’s always a dialectic there, when we talk about adapting, right? So, where I’m getting to is that we need to do some… This is very compelling, yeah, we can look at the fact that only 15% of these folks, who are called most successful high functioning, are able to get full-time jobs in areas that have… And even the jobs for many are just not fulfilling jobs. They’re not things that really fit them, the things they had to do. There are exceptions in, and I’m not talking about the RDI world, outside of that world, where people do find the niche and we hear about them and read about them, it’s great but it’s not common. So, we could talk about that. We could talk about the lack of autonomy of not being able to do for yourself or live in an… Which is interesting because these people of course, they would know how to do a budget, they would know how to pay bills, that would know all those common life skills that are in the Vineland, adaptive inventory, as if that’s an adaptation. They would know those things, but it won’t matter because the world continues to throw curveballs at you, right? [chuckle]

Dr. Gutstein: The world continues to be complex, meaning that… Complex means that your procedures won’t be managed through procedures or formulas no matter how complex, or algorithms no matter how complex they are, because it requires subjective judgment, which requires awareness of prior experiences that you had and who you are, and all those variables. And it requires being able to find middle grounds and sort ofs, and maybes, and best fits, right? So the world’s always gonna be doing that. And daily life’s always gonna be doing that. So, it won’t matter that you can do all those Vineland skills, it won’t matter that you can do those things. But yeah, we can talk about that, we can talk about lack of autonomous living, we can talk about poor, limited ability to have relationships and getting past the fallacy that people with autism don’t want relationships, which is a complete fallacy. And the only people that don’t want relationships are… There may be people that don’t, but it’s often because they’ve had just so many traumas around them that they feel so inadequate and it’s been so awful, that they just would rather be alone.

Dr. Gutstein: But barring that, yes, they want relationships, and they can’t have them, and it’s one of their primary issues of hopelessness and depression. But we can talk about all those things, but if we just talk about 72% of them are clinically suicidal, that should be enough to say something has to change, and we can’t keep doing more of the same, right? And that’s, up to now, the only recommendations I ever read, I ever hear about are more of the same, which don’t work, obviously. And doing more of it’s sad because it’s that idea of adapting, right? It’s that… The community doesn’t adapt, right? You see something as serious as this, and you say, “Well, maybe we’ll just do more of the things that haven’t worked in the past.” It’s very sad. It’s not right. And it gets me upset but again, what we do in our… We’re in a little minuscule part of this world, the autism world. And what we look at is we look at this larger world, which is not adapting, which resists that adaptation, the idea that, wait a minute, instead of investing in all that, we need to invest in providing opportunities for people, as soon as possible, to have the opportunity to have an environment for mental growth. Mental and self-growth which is mental growth.

Dr. Gutstein: We need to develop a mind guiding environment for them, mind guiding relationships. Where they could learn to use their mind in different ways. You learn to use your imagination, their prior experience, their potential for simulation, their potential for multiple dialogues in their voice. Having multiple voices, multiple perspectives. All those things that they can develop, but don’t. And we can go on and on this those. Self-dialogue, emotional awareness, being able to use emotions as information, yada, yada, yada. A setting where they can do that, but do that based on their individual readiness, and their unique bio-psychosocial self, right? Status self, whatever you wanna call it. That requires a very different investment of resources. It requires an investment for autism programs, to have people with autism to be able to be understood as people, as unique individuals. To understand developmental readiness. To individualize their programs, their environment, right? And to continually monitor their needs.

Dr. Gutstein: And to tailor it for their needs and to have people trained, not as technicians to deliver some kind of behavioural thing, but as more holistic or systemic ways, so they can understand the needs of each person as much as possible and as that unfolds, to develop productive growth environments for those people, and to measure those things through their mental growth. So, it requires a real dramatic paradigm change, which makes us feel often that we’re just sort of paddling against the flow of the river.

Dr. Gutstein: When you do that because it doesn’t fit like what grants are awarded for it, it doesn’t fit when you read the literature. It doesn’t fit how people think about intervention. It doesn’t fit the outcome variables that people try to measure. But what it does fit, it does fit the needs of preparing of people so that when they get to be adults, when they get to be in the world, they don’t feel like killing themselves. That’s what it fits. So they can have an idea of lifelong growth and development, so they can see themselves as continually being able to address and manage challenges and learn from them and thrive in them. So they can develop that sense of agency personally and interpersonally, so they can distinguish between that social camouflaging yourself and their core self. So they can select people who they trust and they can develop real relationships with where they can shed most of the elements of that self. It does fit that. It does fit that.

Dr. Gutstein: And that is what the essence of what we’re trying to do. Yeah, that’s right. That’s what makes us, I believe unique if we take that on and also it’s part of the, in terms of addressing the larger autism culture, it makes us stand out and sometimes in a way that confuses people or creates some entity with them or makes some… Is there confusion? Uncertainty? Scratch their head, wonder why we’re not delivering quantitative outcome data as their amount of vocabulary words they show or things like that. By the way, we can do outcome research. It just takes a long time and it takes people being dedicated to do it. But it means that where we, you know, as I’ve said for a while now, it also means that we’re having to re-conceptualize what the term autism means. It doesn’t mean a series of specific mental disabilities, cognitive disabilities.

Dr. Gutstein: It used to. It’s funny because the period following the initial Kanner. We don’t talk about Asperger anymore, but the initial Kanner stuff, it sort of moved when the people of North Carolina and in the suburb and those people got into it became associated with intellectual deficit. And I remember Gary Mesler telling me that Steven, what you have to realize is if you’re dealing with, he used the word mental retardation, if you’re working with autism, you have to realize that 90% of those people are gonna have mental retardation. Which didn’t fit my experience at Texas Children’s Hospital, but I said, well, he’s the expert, he must be right. And again, there are some certainly people who achieve that diagnosis and have a whole variety of different significant neurological impairments that limit their learning ability.

Dr. Gutstein: But they’re very different from one another. We call them. We like to call them low functioning autism, which is, I think another tragedy, I don’t think they should be called. Personally given my background, I don’t think she should go logistic at all. I think they should be understood as much as possible. Their own neurology should be understood. Their own bisexual social needs should be understood. Not lumped together because they’re even more diverse and divergent than what we call the high functioning people. They’re extremely diverse from one another. Like each person could be their own neurological syndrome. That can be so diverse in terms of their needs.

Dr. Gutstein: When you lump them together, the autism again, what kind of growth environment are you gonna provide. And then often they get even a shorter shift of that because people then assume they all need the same, whatever that is thing. But that’s an argument for another time. But so for years we thought of that and then we changed as we learn more or whatever, we started to see that, we start to use the term Asperger’s syndrome. And then we found out that there are a lot of people who don’t get the Asperger’s syndrome, who look just in terms of their mental growth ability or their IQ, I guess, is that more static intelligence abilities were not very different from the people that we were calling Asperger’s. So we got rid of all that, and you can argue about the efficacy of that. I’m not that interested in it.

Dr. Gutstein: But we got to see that what this group of people, what was interesting or what was important about this group of people was that on one level they could learn to do complicated things. They could learn to operate in complicated ways. They could learn things like complicated flow charts and procedures and formulas and things. But we moved from complicated to complex and then the systems people make that distinction between complicated and complex. Complicated are things that eventually you can just sort of put in a flowchart. Complex or things where you don’t know what you’re gonna face when you get to point B. You can’t put in a flowchart because there’s a potential for an infinite number of things that could happen based on the forces that are involved. It’s just too complex. There’s too many potential interactions. It’s like somebody being, I talk about somebody being placed on eight different medications and they start to have side effects.

Dr. Gutstein: But they’re taking eight medications. He’s saying, “What the hell? How am I gonna figure out what this is. Is this a side effect? Is this a new illness? What is it?” It’s complex, right? Because there’s too many interactive variables, you can’t take it apart, and do a flowchart until it could be this because they can interact in so many infinite number of ways. Well, a lot of the world is like that, but what we found that these people could do complicated things. So that’s what IQ tests measure. Your ability to do sort of complicated things. But lo and behold, they didn’t understand. We didn’t use those terms, but we’ve done a… When the world became complex and dynamic, meaning not only did you encounter those strange interactions, but the interactions kept changing.

Dr. Gutstein: The amount of A and B and C and D was different as you move along, and new factors could come in. And other factors could leave, and we emphasized so that there was a dynamic quality, there was an ongoing variation quality within certain limits, not chaotic but dynamic. And so, when the world became complex and dynamic, the more the world was like that, the more these people, this group of people, were unable to be successful or effective, or to think in those ways or use their minds in ways that could be successful in those places. Now, obviously, most people don’t talk in that way, “Well, it’s my research, it’s my work. Let’s figured that out.” And of course, that’s the key to adapting in the world, is being able to do that, to be able to operate in a complex… Frankly, I guess if the world was just complicated, you wouldn’t really have much opportunity for growth, would you? If anything, you would just learn to do a bunch of procedures and formulas, and then sometimes you would get new ones updated like a computer and get through those new ones. But there wouldn’t be any sense of personal transformation or mental growth, right. The way we think about growth or evolution, right, you just sort of add new programs when you needed them.

Dr. Gutstein: So, like in the Matrix, in the movie, when they were suddenly… Got loaded with the helicopter flying program, right, we knew that, it’s complicated. What they don’t talk about is, what about the judgement you need to be a helicopter pilot? [laughter] You know, it’s experiential judgment, you can’t just be a good helicopter pilot ’cause I load you all the techniques of flying helicopters. There’s a real flaw in that movie, but it’s okay, it’s fine. [chuckle] But you’re still gonna have a big mess unless you just fly in a very simple environment with nothing there, but that’s not what they were doing. But the point is, it’s sort of like that, right, you don’t really need growth, you can just have programming, which is what we try to do with people with autism.

Dr. Gutstein: So, we found out that there were this group of people that were… And then we started to re-define autism. If you look at most of the research, in fact all of the research now, it’s with those people, because they fit the anomaly, they fit the sense of, how come they’re not doing well. I mean, the people that have more neurological damage, we call low functioning, we understand why they’re not doing so well. Their brains are damaged in certain ways, they’re limited in certain ways. Now, there are certainly times when you misdiagnose people who we think are clinical low functioning really aren’t, and they’re able to… But by and large, there are a group of people who have what are still medically mysterious syndromes that we lump into this low functioning category. But these other people, because of the way we measure functioning, they don’t make sense, right. These high functioning people with autism don’t make sense because they passed the IQ test, they have the language, they… And if you look at it that way, you say, “Well, they should be okay”. But then three quarters of them wanna die, right, don’t wanna live. And they can go to high school, they can go to college, they don’t wanna live.

Dr. Gutstein: And so, they become a real anomaly, right, so they come up with solutions like getting more support or neurodiversity and blah-blah, blah. And what they don’t think about is the need to change the way we understand and autism, and the way we understand the mind and the brain, right, which goes along with that, which is that… Developing a brain that can do complicated things is only partly sufficient in a complex dynamic world. There’s parts of the world that are complicated. We need to do procedures and you need to do formulas and you need to… I mean certainly. And probably until recently… Well, I shouldn’t even say that… Maybe there were more of that. Maybe there was more of a need. I don’t know, it isn’t really important. The point is that the world we’re facing is more and more dominated by being complex and dynamic, and those two get real intermixed. Unfortunately, when we move to social situations, it’s completely intermixed, but anyway.

Dr. Gutstein: And so, what happens is then we start thinking about autism as, these are people who are doomed to live with complicated abilities in a complex dynamic world, that’s how they’re treated. So, we can give them support, we give them job coaching, we give them the groups, right, and we say, “Well, good luck”. That’s it. Or we say, “Well, the world needs to adapt to you.” And again, not surprising, only three-quarters of them wanna die. And they don’t even know it. They don’t know what they’re missing. They know they’re missing something. See, that’s the other thing, thinking about suicidality, you know that you are inadequate in terms of the world and what the world requires of you, and nobody… You have never any idea what it is and what you can do about it. And then if you think you’re autistic, it’s like, “Well, I guess I can’t do anything about it.” But even if you don’t do that, you’re just a total mystery. Well, why are… Think about how bad that feels? “Well, how come everybody expects that I can’t be? I went to college, I got my intervention and blah-blah. How come I’m failing? How come I’m not able to manage it in the world? How come I wanna die? I must be really screwed up because look at my IQ, and I still can’t make it.”

Dr. Gutstein: So, in that sense autism becomes like a life sentence, it becomes like, “Okay, nothing we can do”. You can’t grow, you can’t develop, you can’t change, because autistic people, they say, well, they can’t do the imaginative things and they can’t do this and that. And, well, then if you can’t do the things that… Or you don’t even know what those things are, you see. Most of the time, you don’t even know it, you just know it’s not working, what you’re doing is not working, and you have no idea if there’s anything else. You know other people do other things, but you can’t. And it’s like a mystery, and so it’s hopeless. But what do we do that’s different? We say, well, wait a minute, because you have this diagnosis doesn’t mean your brain is shaped already in a way, or it can’t be… It’s so rigid or so non-plastic that you cannot develop or grow mentally in many ways. But just like anyone else, it only occurs… That type of growth has to have a certain growth environment, and it has to take time. It’s not a six-week course.

Dr. Gutstein: It’s not a skill. It’s an environment where you gradually nurture, you gradually curate it as a curator, if you think about it, who curates gradually and knows… Begins to know you more and more about who you are, and helps you continue based on your readiness to move to the next step, ang next step, and next step. And guess what, if you’re outside of where we are, that never happens for people with autism. They never get that, do they? And they don’t even know it’s possible. So anyway, that’s why I think it’s useful to focus on even just one thing like that, like suicide. It’s shocking, it’s amazing, it’s surprising. But it’s not, and the point I want to make is, it’s not inherent in being autistic. It’s got nothing to do… It is entirely do with the culture of how we manage and treat people with autism from early on. It’s got nothing to do with a disorder. It’s got everything to do with the culture that we’ve created that we must change. We’re gonna make a difference.

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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