In this episode of ASD: A New Perspective, Dr. Gutstein gives words of hope for parents of children with autism in the new year.

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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. We do encourage you that growth for your child is possible. I’m Kat Lee, and enjoy this visit with Dr. Gutstein and his inspiring words for us as parents in the coming year.

Dr. Gustein: It’s only recently now that we see that here, we’re talking about good parents, normal parents, who have the potential, good enough, I guess is the word, I’d like to use parents, but potentially [inaudible] and yet are unable to provide this. And we’re starting to see studies that show that these normal parents, the way they now start to parent their autistic child becomes different, and more different, and more different as the months go on. Even before the child was diagnosed, they are really unable to do intuitively what you can do with a typically developing child.

Why? Because the child isn’t providing you what you need to guide. That research has been coming stronger and stronger. It hasn’t yet been linked in the research area, in the ASD area, with the what we call the downstream with the later impairments, but there’s a clear association in my mind at least that I think you can demonstrate, because there’s also research that shows that this disruption or this deviance in their relationship or this lack of ability of parents to be able to effectively guide continues.

It’s not just not just something in infancy; it continues as you would expect through childhood and adolescence. Right? They’re not naturally recovering from this, right? And so, what happens is that the those hundreds and thousands of hours that typically developing children, right, accrue, or obtain or participate in to develop that theory of mind and awareness of themselves and awareness of emotion in themselves and others and the ability to reflect on their experience and ability to project then, into the future, they don’t have them. They don’t get the benefit of those hours, right?

What we can conclude is why would we expect someone who didn’t get the benefit of those hours, those hundreds and thousands of interactions, to be able to have these balanced rules? Well, our conclusion, and I think it’s a very sound, research-based conclusion, if you look at the research, is that these impairments that we see now, are central, are critical, are directly obstructing the quality of life of people with ASD, are a direct result of their inability to benefit from a guiding relationship. Right? We have very nice research that shows us that that’s not developing, that it needs to develop for these things to happen, and lo and behold, here’s a population who has been deprived of a guiding relationship, and guess what? These impairments cripple them in life.

So rather than thinking of these as intrinsic, somehow to these people with autism, like you’re born with the inability to have a theory of mind, you’re born with 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, you’d say no, what really is the problem is they’re not provided, through nobody’s fault, with the opportunities, thousands and thousands of hours of opportunities, starting in infancy that typically developing children are able to obtain in a guiding relationship.

Research is very strong on it. 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. This is not … being someone with ASD does not mean you can do these; these are not symptoms of ASD. They’re indirectly symptoms of ASD because … they’re, symptoms … impairments of ASD, they’re impairments of being cut off from a guiding relationship. Right?

And then, if we see that, if we start with that premise, that opens up a huge new door for providing people opportunities. And of course, that’s what we’ve 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 and 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 … their sense of agency, their 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. Doesn’t matter about the child’s impairment, level of disability. 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 of that, you know, each child’s gonna have different limitations and such, but we can provide much, much more. That that’s the awareness that I hope that we all can provide. It’s a very strong … we talk about something being research-based.

We have to move away from just thinking something is research-based because there’s a double blind study of randomized controls or whatever. Most of those studies of randomized controls have an outcome that is irrelevant to anything. But research-based also means that there’s research evidence to support changing the way we look at this; changing the way we approach this. Right? And there’s a very, very strong research base for this, that we all should be acquainted with.

And that’s looking at typical developed. So, there’s three areas. If we look at what we call the downstream impairments that are universal with children, adolescents, adults with ASD, that no matter what your other abilities, limitations, these are handicapping. These are things that are not developing. If we look at those, if we look at the work that’s being done with infants and toddlers who are not yet diagnosed and look at the disruption that’s occurring in the interaction with the parents, even though the parents are capable people, you look at that, and then third, you 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 demonstrating the direct link between guiding relationship and theory of mind development. So, if you take 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.

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. To 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 do, to be able to develop a mindful guiding relationship, knowing that that intuitive relationship, through no fault of their own, 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 goal. For awareness, this year.

Kat Lee: And thanks for joining us for 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. I’m Kat Lee. See you next time.

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