Autism and Quality of Life in Adults
Right now, if you look at the majority of adults with autism you overwhelmingly see that there is a failure to achieve what we would call well-being in their lives. And we know that because the rate of other diagnoses or disturbances such as anxiety, depression, failure to thrive, etc., is higher in this population.
In any other area of medicine, psychological areas, there would be a revolt, in a sense, of people saying, “Now, wait a minute, the outcome data does not support what you’re doing, you have to really rethink what you’re doing.” But with autism, we just continue with the same “treatments” the same therapies, the same thing over and over again and guess what, It’s not working.
In this podcast episode, Dr. Steven Gutstein talks about RDI® as a model for remediating autism, what makes it different from other available models and the outcomes you can expect.
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 week’s podcast, Dr. Gutstein talks about why RDI and what is it? Let’s listen in.
Dr. Gutstein: Is that the majority of adults, right, we know very clearly, the majority of adults with autism, let’s not worry about low functioning or high functioning or this functioning or that functioning, fail to achieve what we would call well-being in their lives. And we know this because the psychiatric rate, the rate of psychiatric, what we call psychiatric disturbance, is extremely high in the population. And yes, more so even in the population of people who are called high functioning. And again, I think that’s a really poor term. People who have, I guess, I would call more… Who test out with more traditional intelligence, IQ, call them what you will, I don’t think high functioning is a really great term for them. But they are especially vulnerable, they are especially high degrees of psychiatric illness. And that’s not psychiatric illness from birth, that’s a result of their lives not working out well, and things being not good for them, having poor well-being.
Dr. Gutstein: And then of course, the second area that we know about is the suicide issue and the rate that they are completing suicide. Again, the people who appear to have more mental resources, which is sort of paradoxical, not really, have about a seven times greater chance of suicide than their neurotypical peers, or their non-autistic peers, I should say, and that’s really unconscionable. It should never be happening. It really should be a warning sign, that we have to fundamentally do something different. It hasn’t been seen that way, unfortunately, but it should be. Both that the employment rate remaining under 20%, for reasonable employment, that the independent Living rate being so very, very low, the fact that depression and anxiety is so very, very high, all tell us that something is not working. And this is despite over 40 years, 50 years, almost, of interventions that claim that they have effectiveness.
Dr. Gutstein: In any other area of medicine, psychological areas, there would be a revolt, [chuckle] in a sense, of people saying, “Now, wait a minute, the outcome data does not support what you’re doing, you have to really rethink what you’re doing.” We’re not seeing that yet. But RDI is an attempt to rethink it, what we’re doing based on this, and also based on other things that we know. And so we know that none of the… So that’s indisputable. That’s just data we have, evidence we have. We’re not talking about… [chuckle] Unless you get into false history and fake news, we know that this is not good. Right now, yes, we have… There are percentage of people you hear about, a smaller percentage, that they’re successful, they seem to have a good life, but that’s the strong minority of people. And it shouldn’t be that way, it should be the other way around. It should be the vast majority, with a small minority having more difficulty. With the case of autism, it’s the other way around.
Dr. Gutstein: So, that’s indisputable. The second fact is, what’s indisputable is that none of the current interventions have been effective in addressing this. And that’s just based on reality. None of them even look at this data. There’s not been a single one of these programmes that has actually looked at whether they increase the ability for well-being for people with autism, not one, not one study. People say, “Why don’t we have research on studies on RDI?” And the fact is there’s been a lot of studies on anything, and whoever is doing these outcome studies isn’t really doing outcome studies. And I can’t force them to look at something like RDI, or I can’t force them. Right now, there’s a huge trend in the autism literature, there’s been articles saying, “Look, it doesn’t make any sense for the people who are developing a model to be the ones testing it. It needs to be independent. There’s too much potential for bias.” And if you look at all the ABA studies and all the other, that’s all that’s done, is by people who have a stake in it, a huge stake in it.
Dr. Gutstein: And so if you look at that and say, “Well, how do we… What do we do? Do we pay somebody to do it?” Well, that sort of defeats the purpose again. There is a lack… There are an enormous lack of people interested in the field in doing real, real world outcome-based studies of what happens to people and what the effectiveness of different programmes are, and there’s nobody doing it. It takes a longer time to do it, right? Although some can be done retrospectively now. You think about the thousands and thousands of children who have undergone ABA and now grown up, even if you were able to contact 10% of those people, and have 10%, you’d get an enormous amount of data. And yet nobody has sought to do that with the most popular of all those interventions.
Dr. Gutstein: So the odds of doing that with RDI, I think are much lower. Maybe that will start to happen. The little bit of data we do have says that none of those programmes are making any positive difference. Whether there’s some negative impact, it’s possible, none of them are having any positive impact, whether you’re talking about teach, floortime, ABA, you could say that about RDI, too ’cause we don’t have the data on it. But at least, as I will argue, really seeking to address the obstacles that are preventing people from having well-being or some people call it quality of life, if they have autism. But anyway.
Dr. Gutstein: Alright, so we know that there’s research that says there is a diversity among people with autism from birth all the way through life. They have different issues and different problems. And the question is… There’s even been the discussion of, “Should we even have the diagnosis, ’cause there’s so much diversity?” and I would argue strongly for, yes, we do need it, but only if we understand what really is universal, what really is the common bond that, A, unifies people with ASD and distinguishes them from people who don’t have the disorder.
Dr. Gutstein: And right now, the criteria don’t do that, even the DSM-5 criteria don’t do that. There’s a lot of folks with other problems or disorders who could fit into that as well, but that’s a different discussion. But despite their diversity, so what hangs them together, what is it that when we’re talking about autism, when we talk about the thing that prevents them, so many people with autism from having experience of well-being in their lives, what is it? And what the research is very clear about is the common factor is their inability to manage, engage successfully, and learn from situations that we would call complex and dynamic, situations that have a significant degree of complexity.
Dr. Gutstein: I’m not gonna get into what complexity is today, but that’s a separate discussion, we can talk about that, and dynamic qualities, which again is important to understand, but I don’t think I need to… If we have time, I’ll go into that. But the more… What researchers say is the more they take their research outside of a controlled lab situation and into more of what we call the real world, into more of the less predictable, less repetitive, complex situations, increasingly of our real world, the more difficulty, the more impaired people with autism look, in a similar way and their inability to manage those, that complexity and the dynamic qualities of those situations. The more situation… In my use of the word situation, I may talk about an event, a problem, a task, you name it. We have to use one term for it, everybody uses different terms, I’m using the word situation. So the more a situation resemble something that is complicated versus complex… Complicated means you can take it apart and do a flow chart, for example, you can do it step by step.
Dr. Gutstein: Complex means there’s so many variables that are interacting in unknown ways that you can’t do that, you have to use what we call judgment, [laughter] judgment instead of analysis. And judgment is considered more experience-based, intuitive, than analysis. And the more that something is considered, it is… It’s experience is dynamic, meaning, there’s only partial predictability over time, meaning that there’s a potential for emergence or something really new occurring that can’t be predicted, and we’re only getting into that right now. The more that any situation has those two qualities, the more difficult it’s going to be for people with this diagnosis. That’s undisputed. And people talk about that all the time. It’s clear from the research. When I say people, I mean researchers who’ve study this are clear about it. Those are not disputed facts, those are not controversial. They just don’t filter into the intervention research at all, it’s like they don’t exist, but they’re there, okay?
Dr. Gutstein: So that is the unifying factor. The unifying factor is their inability to successfully manage… And I wanna say not just manage, but learn from, ’cause if you’re gonna manage complex dynamic situations, you have to learn about yourself in them. You have to learn about them, you have to learn about yourself in them, and then if you have to learn of course in the future, that the future variations, future situations are going to contain elements of what you’ve experienced in the past, but they’re also gonna be novel. But you have to be able to have experiential judgment to manage them. You have to have other things, too, but we’ll just talk about that. Okay, so what is the deal? Okay, so what we also know, and people who have studied things like future prospective experiential knowledge or future thinking, episodic memory, improvisational ability, imagination, sort of dynamic co-regulation, what they conclude is that people, that the…
Dr. Gutstein: Whether it’s teenagers, adults, whatever, children, have not developed the mental resources needed to function in the CD situations. The experiential base, the ability to learn from experience effectively, how it affects you, to personalize that learning. There’s a variety of things, and I’ll talk about that later if we have time. But there’s a collection of mental resources between the motivation, the intrinsic motivation, growth-seeking motivation, including the mindsets, including these beliefs and expectations, the mental skills, the mental processes, the knowledge that you need to be successful in CD situations. And so we have this other line of research, and again, it’s not in dispute. It’s very clear that they’re not developing. The reason they’re failing, and it’s obvious, would be logical, is they’re not developing enough resources needed to succeed. What other reasons could there be? But it’s not just a short… It’s not just specific static skills, it’s a whole range of mental resources. I would call it mental operating system that continues to develop and adapt, okay?
Dr. Gutstein: So where are we? And that what we know is that those mental resources, if you will, that are associated with traditional IQ tests, academic achievement tests or even academic success to a certain degree, do not provide… Are not going to be sufficient to manage CD situations. They’re not the right… It’s not the right operating system. And so no matter how many more IQ points I give you, or how many more subjects you take in school, it doesn’t work. Now, the reason that’s confusing for us is that for many neurotypical people, not all, but for many, the way they develop, and those things develop in parallel, remember it’s not that one develops before the others, many people have at least a certain degree of dynamic… What I call dynamic intelligence that develops alongside there, what I call static, complex, complicated static intelligence.
Dr. Gutstein: So usually, if you have somebody with a high IQ, they at least have some degree of dynamic ability, complex dynamic ability. And so they often are, to at least some degree, correlated neurotypical development. What’s important to understand about autism and what makes it unique is that it’s not correlated, is that you see the development, the potential, not for everybody, of development of that traditional IQ or achievement and analysis-based, complicated level flow chart-based, procedural-based without the development parallel, in parallel of that dynamic ability. So I want you to consider that that’s a unique characteristic of people with autism, okay, and that’s important, and to differentiate it from other issues.
Dr. Gutstein: When we talk about, again, what’s missing, we’re not just talking about certain skills, we’re talking about some really more sophisticated judgment processes, feeling sampling, awareness processes, self-communication processes, imaginative or improvisational thinking processes, innovative thinking processes that have to be managed and not just being creative, it’s not just having memories, it’s being able to develop those tools, so they can be tools for the real world, those, what I call, experiential tools. But again, I can’t get into that today. It’s a very different operating system. So we’re talking about the fact that people who get diagnosed with autism do not develop the complex dynamic operating system, the ability to shift into that system when they encounter situations that have a significant degree of complexity and dynamic qualities. They continue to try to use the mental resources they have, ’cause it’s all they have, that are effective when situations are more static and not dynamic, and are more complicated, but not complex, okay?
Dr. Gutstein: And they fail because of that, and then they don’t know why they fail. And then, this is just to the side, and then they go and the help that people provide, give them more of those static skills, [chuckle] social skills, employment skills, they just provide even more of those things that are gonna not be helpful, and that’s the saddest, that’s one of the sad parts of this, okay? So what do we know about these mental resources? So now, let’s shift now away from autism research, that’s what we know from autism research. What do we know from things like educational research developmental psychology is that these resources, these mental resources, don’t develop through instruction, they don’t develop through reinforcement, whatever. They develop, over the period of years, through what I refer to as a mind guiding relationship, which starts out with parents or people who are assuming a parental role, and then can be extended to other people and eventually could become a self-learning process as well, over time.
Dr. Gutstein: But it’s very gradual developmental process, experiential experience-based through co-experiencing with a more experienced guide, alright, later through experience sharing, even when we go off and come back, and you share those experiences and have someone help you interpret and make sense of them. But for the first years, it’s co-experiences, it’s being in the world together and learning how to think, use your mind from somebody who’s more experienced. And the thing is, in typical development, it occurs without people even really knowing that they’re doing it. If you’re a parent, you sort of realize you’re mentally doing it, but it’s not something you wanna leave up to the school, where they’re more instructional, static intelligence-based. It’s something that really has to occur through more of the day-to-day family-based, hopefully, guidance, if that’s available. But it takes a number of years, and it’s a gradual process, and it’s not always perfect and successful, and it’s very intuitive, because it’s people are not really… Sometimes, often not even aware they’re doing it, they’re engaged in it, but it starts very early on, and it keeps going.
Dr. Gutstein: But the thing about it is, it’s really the development of a sort of parallel operating system, mental operating system. It’s as if we have the ability, and I think we do have the ability. Well, our brains do rapidly perceive which operating system is gonna be more effective and sometimes we might start out with a task or a situation, where we perceive it as something that it’d be simple or we can do it in a sort of step-by-step way, and then we start encountering information [chuckle] that says, well, it’s not gonna work that way, and then we make a shift, sometimes right away, we realize that shift. But from very early on, what’s clear to me is, and in fact, when we look at infants, they really are starting to develop that dynamic, what I call the dynamic intelligence operating system, first, actually, before they move into that static more instructional-based system. But anyway, it’s a years-long process, and this is what we know from education, will tell you this developmental psychologist… Once again, there’s no controversy here, there’s not debate, there’s no fighting about it.
Dr. Gutstein: People aren’t fighting about it, they fight about other things, they’re certainly not fighting about this, that’s family-based, parent-based, it’s a gradual process it’s a, what we call, scaffolding process of co-experiencing, scaffolding, of curating experiences for their children based on things that they feel is one step ahead of, sort of intuitively, where you sense that they are. And it’s not perfect but it’s a… But remember, it’s a process that… Remember, one of the things that’s really clear that developmentalists will tell you, it’s a process that requires the active engagement and motivation of both the adult, more experienced adult, and the less experienced, what I call mental apprentice that guides them in the life as an apprentice. Okay. And it’s not an apprenticeship to learn how to make pottery. It’s not an apprenticeship to learn how to chop wood, it’s apprenticeship learning how to use your mind, use your prior experiences, use your imagination, use your internal, your feelings, your self-communication to be successful in complex dynamic situations, so it’s a mental apprenticeship.
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.