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Autism: A New Perspective
Our Goals in RDI®
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Join Dr. Steven Gutstein and co-host Kat Lee as they discuss goals in the RDI® Model, for children, parents and professionals.

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Full Transcript

The awareness that is so important to bring to people about what we’re learning about ASD from our research which is often very impenetrable, it’s often difficult to understand it. I find that outside of the people doing the research almost nobody knows about the research which is very odd isn’t it? They hear snippets here and there but it’s not being communicated to the professional autism community. And that’s really sad because it’s the way we understand what is going on with people who have this disorder and how to help them and what their biggest needs are.

And if we don’t have that awareness, so if you use that word awareness, we really need to be able to dramatically increase awareness of how we understand the disorder of autism spectrum disorder based on what we are learning and what we have learned.We need to be able to translate that to both other professionals in the field and also to parents and educators so that we can really rethink what we’re doing and even how we measure success or how we measure improvements.But mostly what we’re aiming towards. What’s the ultimate thing we’re trying to do to help people with ASD to have a better quality of life. I’ve talked already about the sub negative side which is that the research is saying to us, there is no research that is saying that things are getting better for people with ASD in terms of how, any of these of these interventions , early interventions or others, are helping people to do better. I think that there are some societal things that are improving the lives of people with ASD in certain areas. We’re not institutionalizing them as we used to. The stigma is not there. We’re not hiding, parents don’t need to hide their child from the world as much. And so there are some things that are improving in terms of awareness of ASD and it’s not necessarily hopeless, it’s not necessarily people with ASD.

I think one thing that’s changed is the old stereotype that we used to have of children or people with ASD was that of rainman. Was that of someone who was really mentally impaired, cognitively impaired, somebody who could not really functionally be in the world, who had little hope for recovery.

I mean if you think about improvement, you think about that movie Rain Man and you think about the ending of it, he sends them back to the institution. The belief in that movie is that’s the best thing for this gentleman you know. And it’s sad because what happened is he becomes institutionalized, it’s not about his autism and that’s what the movie implies, it’s about the fact of having grown up in an institution he’s dependent on. Just like people who wind up going to prison or spending years in any institution. But hopefully we are getting past those stigmas and I think that sometimes that gets overplayed by a few example cases of people with ASD who are doing better but I do think that is a positive thing.

But what we’re not addressing is what in the daily lives of people, children, adolescents, adults, What should we be doing to help to improve their life. What is it that they…Not that we should be doing it for them, in other words not how much compensations, things to change the environment for them , what should we be doing for them in terms of their own mind, in terms of their own ability to think and solve problems and to have a sense of agency, influence over their own life and be able to function in a relationship, obtain their goals, their desires.

What should we be doing to help them to have that kind of autonomy, help them to have that type of effectiveness in the world? What is it that is getting in the way? What are the things that we know are universal for people with this disorder that are the biggest obstacles for them. That if we could help them develop these mental tools, if you will, then they will be able to function in the world in a way that would be effective, that would leave them feeling competent, leave them to be able to meet their goals whatever those goals may be. I don’t think that there is an awareness of that.

I think that get past the stereotype of people with ASD don’t talk, they don’t really know what to do and then people used to call them mentally retarded, intellectually deficient which we know their not. Then things start to get very muggy. Even though the research is getting clearer, the common perception of what gets in the way get’s very muggy. And people don’t understand what it is that we should be doing to help people with ASD to develop their own mental, emotional capacity to function autonomously on their own.

You know the proofs in the pudding cause the outcome studies that are done on the population, they’re not done, there are no outcome studies of any treatment in terms of functional effectiveness in life. There’s none. In terms of friendships, in terms of work, relationships, in terms of employability, in terms of independence. There’s no correlation, there’s not even a single study that says ok if you do this treatment it improves this in terms of employability, relationship, whatever. But we see that in general, we’re not seeing that adults, or young adults or teenagers are doing better.Are getting more, having more, are increasing their potential to have the quality of life that they all want.

We see the psychiatric disorders of ASD, I think we’re getting better measurements now , 75 to 80% severe depression and anxiety disorders that are not necessarily, you’re not necessarily born with those just because you have ASD. I think that’s misknown (?) I think it’s a result of having, living in a world where we’re not making sense of things , you’re not able to extract meaning from your experiences that helps you. You’re not able to imagine your potential futures and plan and prepare and predict so that you’re ready to face what may happen.

You’re not, you know, you’re not able to recover from things that don’t work out well for you and have that flexibility and that resilience. I think that the psychiatric disorders are secondary to those things.and the repeated sense of failure that often you know , experience.

So we see that the suicide rate of people with ASD being seven times that of the neurotypical (not understanding word here) and that’s not part of being ASD. We see the employability that each year someone with ASD is out of the formal educational setting, their odds of them being able to have gainful employment goes down each year. So what that’s telling us is once they move out of that sort of dependent environment, where people are compensating for them, they are not able on their own to increase their competence.

They’re not learning, they’re not getting better at whatever they’re doing, they’re not able to solve the problems that they have to deal with in their day to day lives and make the decisions they need to make and use the judgment that we require of people to succeed in the current work environment. What we know is that, what the research tells us is there are several areas that are universal, are universally impaired for people with ASD. And they are major areas. But they’re not, those areas do not get communicated to our professionals or to our parents or to people with ASD themselves. And the first, look at them in different ways, there’s severe impairment and self awareness and being aware of your own feelings and be able to use emotions as information that can help guide you and help you make decisions and judgements. I’m not talking about emotions that you react to but emotions as information, there’s a severe impairment there. Impairment and self aware and self understanding, in learning what you need, in learning who you are, in learning what works for you , in learning how you’re perceived by others, severe impairment. Severe impairment in learning about yourself and being able to use your own experience on a moment to moment basis.

Similar of course is a severe impairment of awareness of others and of course those go hand in hand, what we know from our research in child development is that they go together , our sense of self our internal world, others internal world are things that co develop and so we’re not that surprised when we see what we used to call or we still call theory of mind deficits or the inability to understand other people’s intentions or their goals or expectations and what they may be thinking about and what their beliefs are and also what they may be feeling and how you’re impacting what they may be feeling in real world environments.

So we have that tremendous impairment and many many studies have been done in both of those areas and we have a third area of the inability to benefit from your own prior experience. The inability to learn about yourself, to extract meaning about who you are, what you are from your experience in the past as you go through life and the ability to engage also in what we call mental time travel where you re-experience things and that has enormous impact because you can’t re experience then say oh wait a minute I don’t want to do that again. You can’t get personal significance unless you have some emotional state in what you’re reflecting on. The other thing is that you can’t translate prior experience into the future, which is really a disaster for people with ASD. And what we had research on and it’s very good and it’s universal is the inability with people with ASD to use that prior experience and to project themselves into future situations. How do you plan, how do you prepare yourself for the future unless you can do that. How do you and you know think about it if we can’t use or we can’t extract things from our prior experience, how in the world can we prepare for the future? Otherwise the future is like unknown. And so it’s a huge huge impairment there and so we see also that’s how we learn about ourselves by reflecting on our prior experience.

So we know that those are just three barriers self emotional and mental self awareness, thinking about the awareness of others and the concern for others which is what we call empathic concern and there are mental states and their emotions and the inability to engage in what we call mental time travel to be able to really extract meaning from your own experience, to see it as yours, right. Those three areas are solidly demonstrated as universal. Doesn’t matter what your IQ is, other issues, those are things that every person with ASD suffers from. Not having that and when we take that, it’s hard to imagine what’s that like if you take that away. You take away your personal task, your personal potential future, your ability to reflect, your ability to be aware of yourself, your ability to be aware of others in ongoing interactions. Take that away and how do you expect someone to function in the real world, right.

So the thing that doesn’t get disseminated is that’s what’s going on but the other part that doesn’t get disseminated is why is that happening? Why are those impairments happening? There are others as well which we don’t have time to get into but those are huge and the mistake I think people make is assuming that that’s just part of autism, we’re just born with that so you just have to live with the inability to do those things.

And there is no reason to believe that extreme but that gets very, it’s very accepted because it’s oh we just have to compensate for that which you can’t do, You can’t compensate for that. You can’t, you know we don’t have metal implants that can compensate. So we do is we wind up offering people (not understanding 14:49) a pretty minimal life without those things. You can’t handle stress, you can’t handle change, you can’t handle complexity, you can’t handle unpredictability. You’re really unable to handle anything that is challenging in the world without the ability to draw on your experience, project it into the future, become aware of yourself and others and process them in an ongoing basis.

So the question is, Why do people with ASD have this? And this is where research, the ASD research is really flowing down because they don’t ask that question. They study it, they say oh here’s a impairment and so the implication is well oh to bad if you have ASD this is it or we need to just teach them how to do these skills which you can’t do because in typical development these things are occurring, these are developing from very early on over years and years and years from parent child relationship, not from groups. You can’t make up for that in a ten group right.

But what we do know is when I go to now the typical development, I ask the question which the ASD researchers haven’t yet gotten to that, well ok if this is true and these are the impairments, how do these things develop typically? What do we expect to happen? I mean where do we expect to happen, you’re not born with it, babies don’t have these abilities, infants don’t, early infants, it develops over a period of years.

Well the research is very clear especially when you look at these three areas, there’s a very solid link that they develop in the families through parent child relationships through what we call a guiding relationship , Not necessarily guiding participation, you need to be careful because that’s a very specific term that’s used about instructing certain skills and problem solving but usually we’re getting a guiding relationship where parents are involved in what I call mind guiding in developing the mental and emotional and self elements of their children and they’re doing this intuitively in the world but their doing it. And the research on when we look at those areas that are talked about , those impairments and you look at typical development, what we see is that there is a strong body of research that’s accumulated over the last 40 years demonstrating that these areas, these mental tools if you will, are directly the result of hundreds if not thousands of hours of play and conversation and working together and various other elements and joint reminiscing between parents, and parental figure, grandparents, parents and be shown in typically developing children and without that these things will not develop. Okay. They’re not just going to happen. So what are the implications of that for ASD? Well there is research and it’s getting stronger all the time and really accumulating that shows that the guiding relationship does not form between infants who on to be diagnosed with ASD and their parents. There’s a disruption.

The parents are certainly capable of providing the guidance, but the vulnerabilities of these infants and toddlers who go on to be diagnosed with ASD as such that they are unable to participate. They are unable to provide the energy that they need to provide to make the guiding relationship work because it requires both the infant and the parents to be able to do this. And unfortunately the only studies that have been done on disruption up to this time, used to only focus on parents who were mentally ill or parents who were neglectful or you know had attachment problems. And it’s only recently now that we see and hear and talking about good parents, normal parents that have the potential, good enough I is the word, I like to use parents but potentials to provide the guiding and yet are unable to provide this and we’re starting to see studies that show that these normal parents, the way they start to parent their autistic children becomes different and more different and more different as the months go on, even before the child is diagnosed. They are really unable to do intuitively what you can do with a typically developing child because the child isn’t providing you with what you need to guide.

That research is becoming stronger, it hasn’t yet been linked in the research area, in the ASD area with what we call the downstream with later impairments (? 19:56) but there’s a clear association in my mind at least that I think you can demonstrate because there is also research that shows that this disruption or this deviance in relationship, where this lack of ability for parents to be able to effectively guide continues. It’s not just something in infancy, it continues as you would expect in your childhood adolescence. Right. They’re not naturally recovering from this right?

And so what happens is that those hundreds and thousands of hours that typically developing children accrue or pain or participate in to develop the theory of mind and awareness of themselves, the awareness of emotion in themselves and others and the ability to reflect on their experience and the ability to project into the future. They don’t have it, they don’t get the benefit of those hours. So what we can conclude is why would we expect someone who didn’t get the benefit of those hours, those hundreds of thousands of interactions to be able to have these mental tools. Well, our conclusion and I think it’s a very sound researched based conclusion if you look at the research is that these impairments that we see now are central, are critical and are directly obstructing the quality of life of people with ASD. Are a direct result of their inability to benefit from a guiding relationship. We have very nice research that shows us that it’s not developing, that it needs to develop for these things to happen and low and behold here’s a population who has been deprived of the guiding relationship and guess what? These impairments cripple them in life. So rather than thinking of these as intrinsic somatical to these people with autism who are born with the inability to have theory of mind, you’re born with the inability to be aware of yourself, you’re born with all those things, it makes a lot more sense if you look at the data, if you look at what we’ve seen because they know what’s really is the problem is that they’re not provided, through nobody’s fault, with the opportunities, thousands and thousands of hours of opportunities starting at infancy that typically developing children are able to obtain in a guiding relationship.

Research is very strong there but yet there seems to be a lack of awareness that we can do much much more for these people. That this is not inherent, that this is not, being someone with ASD does not mean that you cannot do these. These are not symptoms of ASD, their indirectly symptoms of ASD because symptoms or impairments of ASD, their impairments of being cut off from a guiding relationship and then if we see that, if we start with that premise, that opens up a huge new door of providing people with opportunities. And of course that’s what we have seen with RDI, that we can provide opportunities for people with ASD to become aware of themselves and others, to learn from their prior experience.

The emphasis we’ve had on dynamic intelligence has really been an emphasis on giving children, adolescents, adults and their families with ASD, giving them the tools now to be able to extract, to be able to learn from their experience , to organize it, to use it to help them prepare and plan for the future. It’s been dramatic in the way they feel, in the way that sense of agency, the sense of effectiveness in the world, their sense of becoming aware of their emotional life. It’s been dramatic, it’s been tremendous. And so we know we can provide a guiding relationship for pretty much any child and parent who’s willing to engage with us . It doesn’t matter about the child’s impairment, level of disability, it doesn’t matter. And we can provide the opportunity for this type of growth, this type of mental and emotional growth for any child up to the point that you know each child is going to have different limitations and such but we can provide much much more. That’s the awareness that I hope that we all can provide. It’s very strong, you know we talk about something being researched based.

We have to move from thinking about just something that’s research based because there’s a double blind study of randomized controls or whatever. Most of those of interest controls have an outcome that’s irrelevant to anything but researched based also means that there is researched evidence to support changing the way we look at this, changing the way we approach this. And there’s a very very strong research base for this that we should all be acquainted with and that’s that within typical development, there’s three areas, if we look at the what we call downstream impairments that are universal with children, adolescents, adults with ASD that no matter what your other abilities are, limitations, these are handicapping, these are things that are not developing.

If we look at those, if we look at the work that is being done with infants and toddlers who are not yet diagnosed and look at the disruption that is occurring in the interaction with parents, we know the parents are capable people. And then third we look at typical development and we look at how these things require a guiding relationship. Scores and scores of studies, this is not, just on theory of mind alone, I have over 50 studies penetrating the direct link between guiding relationship and theory of mind development. And so if you take away the guiding relationship, why would you ever expect, why would you be surprised to see the people with ASD have a deficit in theory of mind. It should be obvious right? It’s research based. I think it’s important that we try to create that linkage, that’s the awareness I’m hoping that we can provide through what we’re doing for our larger community. That I think will make a difference in what we do.

It can redirect our emphasis to providing those experiences for people with ASD whether they’re certainly starting as early as possible but any age and providing parents with the resources which we try to do to be able to develop a mindful guiding relationship knowing that intuitive relationship through no fault of their own, it didn’t develop and isn’t going to develop. That they have to be mindful , that we have to help them to look at the particular child and what they need to actively participate in that relationship. That’s my hope for awareness this year.

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