What we provide in the RDI® Model is more than just a little “intervention” for autism, it’s a pathway.
RDI® is a developmental pathway to gradually moving more and more and more towards self-management and self-guiding in a dynamic world.
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 do encourage you that growth for your child is possible. I’m Kat Lee. And in this week’s podcast, Dr. Gutstein talks to us about the heart of RDI, your child and well-being.
Dr. Gutstein: RDI should stand for that, right? It should stand for providing a guided developmental pathway. And it shouldn’t matter if you’re high-functioning, low-functioning, whatever functioning, right? The idea is that regardless of that, you deserve the opportunity, you deserve the opportunity to develop, to grow, to establish as much self-management of your well-being, let me put it that way. You might have heard of self-managed well-being, right? That you don’t have to have other people managing it as much as possible, it’s a self-managed well-being. That you can self-manage your well-being in a complex, dynamic world. How’s that? Does that work? [chuckle] Okay. And I think that’s the key is, can we provide… And I think what we wanna be able to do is to provide that opportunity for growth and that’s to the degree possible to be able to self-manage.
Dr. Gutstein: So it means anyone with autism, it doesn’t mean… Of course it means anyone but anyone with autism doesn’t mean high function, low function, middle function, whatever. Because everyone, we believe, deserves an opportunity to develop their own… Develop the internal mental resources that they can, if they have the potential for, so they can self-manage, they can manage themselves in a complex, dynamic world. They can achieve autonomy, they can achieve relationship and mastery and continue to develop and grow in a complex, dynamic world. That’s what we wanna talk about. So we wanna talk about, in this series, we wanna be talking about how this is different than the current paradigm. So, it becomes so lonely initially, if you’re taking up this position and trying to deal with government agencies or other professionals or parents who don’t really understand that, who don’t understand the potential for that.
Dr. Gutstein: We wanna look at the current way we look at things like outcome. The outcome studies, the clinical outcome studies of which basically demonstrate that none of the current treatments, if you will, or intervention, whatever you want to call them are helping people with autism to achieve greater well-being. And the evidence is very clear, we have some nice now meta analysis of ABA, of Denver model, of you name it, and basically, the variables don’t… The data doesn’t demonstrate that they do. There is no data that demonstrates that they do, and it’s because there’s no emphasis of doing that, right? Also, there’s been no… It’s never been a goal of the interventions, or of any of the research, right? And it becomes a problem in terms of even… When we talk about the neuro-diversity movement.
Dr. Gutstein: Which is a big movement now in autism. The danger of course of that movement is that it becomes one where we say basically, “Provide environments for people who have autism and differences and they don’t need help to become more capable and to establish their well-being, it’s a problem that society has to change.” And I think that’s great, except there’s eight billion people in the world. And so many different cultures, societies, communities, that if you’re a person with autism and you have to depend on the world to recognize your diversity and give you what you need, you’re likely going to be very disappointed and depressed and then helpless, because you don’t have the internal sense of resources to achieve greater well-being. You’re depending on others recognizing your unique needs, which interestingly the neuro-diversity movement doesn’t understand that people with autism themselves have unique needs from each other, right?
Dr. Gutstein: There’s no such thing as autism needs as a group, but anyway, I don’t wanna get involved in one of those others, but the problem is, if we look at the autism world where there is neuro-diversity, whether it’s ABA, whether it’s Denver model, whether it’s… Whatever. There is no sense or unity of a goal being, “How do we establish… How do we provide a developmental pathway for well-being?” Now we know the types of abilities resources you need for well-being, and we’re talking about well-being in a real world, in a complex, dynamic, real world. So again, giving you eight additional IQ points isn’t gonna do it for you, it doesn’t do anything. Teaching you discrete skills doesn’t do anything for you.
Dr. Gutstein: None of the current people that talk about interventions and therapies provide anything that’s gonna give you the internal mental resources that you need to deal with those complex, dynamic experiences. How do you learn to self-manage your experience? And that’s the key. To self-manage your experience in a complex, dynamic world. Personally, interpersonally, right? To gradually learn to self-manage so that you can continue to develop, continue to grow, continue to learn from your personal experience and develop new knowledge, new skills. How do you develop the intrinsic motivation, right? People with autism, now we’re starting to recognize again. Starting to recognize people with autism can develop intrinsic motivation, it can be activated, for years that was ignored or denied. But it has to be developed. It has to be promoted. It has to be facilitated. It has to continue to develop. As well as the mindset of opportunity-seeking versus problem avoiding, right?
Dr. Gutstein: And right now, for many people with autism, because of their experience, life is about avoiding problems, avoiding uncertainties. Not looking for opportunities, not looking for new challenges. So, those are things that have to be gradually guided and developed, right? To be able to self-manage in a complex, dynamic world. And it has to be, to learn how to use your experience, along with your personal experience to manage. Learning to you use your imagination, your creativity, your past experience to allow you to simulate the future, simulate what other people might be experiencing, the ability to regulate and co-regulate, in different areas, and just a number of different things that we talk about in terms of dynamic intelligence along with the habits, along with the mindset, along with the motivations, right? We know that those are the resources you need to achieve well-being in the real world.
Dr. Gutstein: But there’s been no emphasis on first of all identifying those things which we have. And then, how do we develop those things? With none of the current models of interventions, whatever you might call them, whatever you wanna call them, seem to even try to do that. They each sort of have their own definition of what they want to achieve, the outcome based on what they do, and it’s sort of circular issue. “My outcome for success is what I’m teaching you. Whether it means anything in the real world, if there’s any external validity, in terms of well-being, is irrelevant.” It’s that, “Here are the factors that I’m gonna teach you, so therefore those are my outcome variables.” That was where ABA got into their average IQ points, that they were able to raise IQ points about seven or eight points. That became their great outcome and convinced people that was really gonna make a difference except it doesn’t make a difference in the world, right?
Dr. Gutstein: Anyway, so you can come back, Kat. You can come back now, I’m not sharing my screen. And so what we wanna do is we wanna revolve around those areas and ask other people to participate, ask them, the consultants to participate around these areas. We wanna look at some of the… And in different topics, we’re gonna wanna look at some of the actual outcome studies that have been done now, meta-analysis of ABA and other things. We wanna look at what well-being means in the real world, and what we know about how to provide a pathway for well-being, for people. But it is… What I wanna emphasize is that if you’re in the autism community, involved… You’re gonna be very lonely initially, if you think this way.
Dr. Gutstein: In most communities. In the autism community ’cause it’s not the way that either, the parent community or the professional community is thinking. There’s a lot of self-fulfilling, self-generating misinformation, and self-justifying efforts around continuing to do what they’re doing. Whether that’s providing grants for that, funding for that, and government paying for that, insurance companies, right? Paying for providing services that do not necessarily have anything to do with increasing well-being for people or providing a pathway to develop self-managed well-being. And that’s the key to me is the self-management part. It is not depending… Yeah, if there’s a… Everybody could use an ideal environment for them, or an understanding boss, whatever, that provides you with the right niche for you to be most effective, and efficient. But you can’t depend on that in the world. You can’t teach somebody to say, “Okay, that’s gonna be the solution for you.”
Dr. Gutstein: Because you’re gonna… Most of the time you’re very disappointed and despondent. And what we see, and interestingly enough, when we survey adults with autism and they say… The survey of suicidal adults which are unfortunately about one-third of all people, all the adults with autism, high functioning adults with autism actually, are pretty high in suicidality. What they say they need, most of them is support. The right kind of support. And it sounds great, but it’s to me, that’s exactly the problem. It’s the question of, “I can’t do anything myself to remove myself out of this certain situation, to improve my situation. If I don’t get the right type of support from the outside, then I can’t make a difference in my own life. Then nothing’s gonna change.”
Dr. Gutstein: Why do we have such a high rate of suicide? If you think about it, it gets rarely connected to that. Once again, if I feel my life is miserable, my day-to-day life is miserable, and I don’t feel like, internally myself, I have any way to make it better. And then I don’t achieve wonderful resources from the outside, then what’s the point of living? So for those people with autism lucky enough to get those success stories you hear about, and people get great jobs and support, that’s great, I’m glad they get them and hopefully they can keep them, ’cause we don’t always know if they’re gonna keep them. But assuming they do, that’s great, but that’s not the majority of people. The majority of people are in environments where things are not… Their niche is not perfectly designed for them.
Dr. Gutstein: The world is not designed for them. And if they don’t have a way to self-manage themselves in complex, dynamic environments, world, then… And their… Their life isn’t going to be good, they’re not gonna be able to be autonomous, they’re not gonna be able to get good employment and keep it, they’re not gonna be able to live independently, they’re not gonna be able to manage reciprocal relationships, real reciprocal relationships. And what they’re gonna experience is that the outside world is disappointing them, isn’t providing for them, and is uncaring, which is largely true, and never even consider that they could develop the internal resources to improve their lives, right? That there’s a pathway for them to do that. There’s a way for them to be able to achieve more management, more self-agency in their relationships, in their jobs, in their… That they don’t have to be stuck.
Dr. Gutstein: Here’s the key, the key is, we can… Human beings can tolerate enormous amount of misery in their daily lives, as long as they can believe that they have some potential to make things better, okay? And you could say, “Well, as long as they believe that, the world is gonna make things better.” Only to a certain extent, because the problem is in reality, you may have to wait a long time or forever for the world to make things better. But if you believe you possess, within yourselves the resources to improve things, then there’s a reason to wanna keep living, that you can tolerate an enormous amount of misery in your current life where things are not working or setbacks or failures, because you have that belief. And a key of that belief is being able to learn from those experiences, right? That you know that you have the capacity to have failures, setbacks, obstacles in your path, and to be able to take something from those and to be able to use those.
Dr. Gutstein: Use your experience in a productive way, right? That’s what development’s about, that I have the ability then to take those experiences and turn them into knowledge, turn them into increased awareness of things, and different strategies, different ways of approaching things. That I can cope with those adversities. Not only just cope with them, but instead learn from them. And without that, you’re basically a victim, right? Why is there so much PTSD? [chuckle] Why is there so much suicidality? Why is depression so common in the higher functional group? Well, it’s not… It’s not… Again, it’s not because their life… You could say, “Well, it’s because their unemployment rate is so high. It’s because they’re living… They can’t live independently. It’s because they don’t have relationships.”
Dr. Gutstein: I would say, “No.” That’s only a piece of the story. It’s because they don’t have any way of feeling or believing that they have the ability to change that. To make their life better, that… If all they believe is that it has to come from out there, then they’re gonna be helpless and a victim. And again, that’s what the world keeps telling them. “You need the services, you need to get in touch with the right services.” Right? “And things will get better.” Right? “You need somebody to support you.” That’s what the world keeps telling you. Not that you have this capacity, you have this agency, you have this way of turning adversity into strength, problems into opportunities, right? World doesn’t tell people with autism… They don’t learn that about themselves.
Dr. Gutstein: That certainly if I can learn to self-manage my experience in a complex, dynamic world, I can learn to get better at it and better at it and better at it. As I said, if you take that position now… And then by the way, that is what the key of well-being is. So clearly, if things don’t ever get better, then you lose that. So I’m not suggesting that’s it, just… But that belief is only gonna be there, you can temporarily handle a lot of adversity, a lot of misery. But of course, eventually you have to see that you can get better, and that things do get better. And you gotta look at small things and say, “Hey, I’m… ” You also have to be able to track that and say, “Hey look, things aren’t where I want them now but there’s a trend here. [chuckle] I’m moving in the right direction, right? Through my own efforts, not through the miraculous idea.”
Dr. Gutstein: And again, if you read these stories of some employer, father, whoever sets up jobs for people. It’s great, I mean I’m not suggesting that they don’t do that, but what if that person can’t continue to do that? So you’ve provided these jobs in the current economic insecurity, what if they go bankrupt, what if they have to close down, what if they die? What happens to those people? Because if what they attribute is, “Their success is to the beneficence of this person”, then now they don’t have it, what are they gonna do? But those are the things you read about, right? Either you read about people who, we don’t know why, but they’re very successful in whatever, and that’s wonderful. Or you read about somebody who provided these opportunities for people with autism as coders or whatever it is they are. I’m not saying that’s a bad thing, obviously. But it’s dangerous, isn’t it? And it’s not gonna be there for most people, and if it is there, it may not be permanent. And then I’ll tell you what happens when that person isn’t able to do that anymore. What happens to the employees, right?
Dr. Gutstein: Do they along the way develop that self-management, the ability to handle the changes in the world without that beneficial person? Anyway, so that’s gonna be the goal of what myself and a small group of people are gonna try to do on Facebook and other platforms. And the idea is to start enlarging this community in the autism world and providing, I guess, alternative community that’s centered on well-being and growth, and providing a pathway and self-management for growth. And when you think about that, it doesn’t matter if you’re high functioning or low functioning, people who have more neurological side co-occurring things, they should have opportunities as well for as much self-management as they’re capable. And we don’t know that until we provide that opportunity for them and provide the families with the guidance or a way of guiding them through.
Dr. Gutstein: And it’s a pathway, what we provide is more than just a little intervention, it’s a path or a curriculum, if you will, or a developmental pathway to gradually moving more and more and more towards self-management, self-guiding, if you will, self-management in a complex, dynamic world. And I think that’s the key. We’re trying to be preparing people to live in a real world, complex, dynamic world and to be self-managing in that world and experience well-being.
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.