In some ways, there have been dramatic changes in the way we view and treat autism in the 20+ years since the RDI® Program launched. For one, more people are seeing autism like we do here at RDI®, as simply a different way of thinking and being. We know that autism can mean a lot of challenges, but challenges can be overcome.
RDI® Is a Different Kind of Autism Treatment
We offer support for autistic individuals who don’t want to be treated as second class citizens, who don’t want to be discriminated against, and who want to be offered a pathway to a full life – and we believe that they deserve that life.
Behavior therapies are still in full force in the autism world, but it’s really something of the past, like the psychoanalysis of Freud’s time. Behavior therapy hasn’t evolved to catch up with what today’s autistic people and their loved ones want – real relationship, real connection and real progress.
Related: Intro to RDI®: An Online Course
You Are the Best Person To Guide Your Child Through Autism Remediation
Outdated therapies tell parents to leave all of their child’s chances, their potential, their future in the hands of others – that professionals or experts play the most important role in their child’s life. But RDI® is different. We know that you know what’s best for your child and that you are the best person to guide them through their growth and development.
Related: Autism and Bullying – Helping Your Child Cope
Ready to learn more about guiding your child with the support of the RDI® team?
Find your RDI® Certified Consultant today.
Autism: A New Perspective is Available on iTunes!
Full Transcript
Kat Lee: Welcome back to Autism: 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 very special podcast, I interview Dr. Steven Gutstein. We talked about the last 20 years of autism and RDI. Let’s listen in.
Kat Lee: I remember helping organize a conference in Dallas for you to come and talk to parents, and we had overwhelming attendance. I remember that because I was so busy, I could not sit down a lot to talk to you. But after that, I came down for professional training. And in both of those initial… I still remember the first couple of hours of both professional training and the conference, you were talking about that we had to start addressing the real needs of the children, and that there could be consequences if we didn’t. And I remember thinking, “Wow, that’s really heavy.” So 20 years later, I’m wondering where you feel like we are in autism with the children. We have… I know you know and I know lots of parents coming to us with little ones, two, three, and four years old. What are you seeing here as 20 years later?
Dr. Steven Gutstein: Well, in some ways I think there’s been some dramatic change. In some ways things haven’t changed as much as we would hope they would. One thing that has changed is more recently there’s been just a slew of research that questions the validity of many of the intervention programs that were touted as wonderful and evidence-based, et cetera, et cetera. And finally I think I have raised important questions about those programs. But I think there are still many professionals, parents who don’t understand what they’re getting, professionals who are offering these services, and big corporations who are running these programs for profit that don’t take the interest of their clients as primary, but are in it to make a buck, frankly. And that’s very concerning to read about and see.
Dr. Steven Gutstein: I think that it’s been gratifying to see RDI being provided in so many different countries, in continents, and a number of young people coming and becoming involved as consultants in different places. And so I think we are making a difference in the field. I believe that we’re very much in line with the current thinking of people themselves, adults themselves with autism, who really don’t want to be treated as second class citizens, who don’t want to be discriminated against, and who want to be offered a pathway to a full life, and who believe they deserve that pathway. And I think that we try to offer that for so many families. I know that we have so many parents that are grateful for what do you all have provided for them over the years and the consultants, and who do communicate that to me now and then. I don’t know what else I’m gonna say, Kat. Maybe you can…
Kat Lee: Well, one thing that’s, it’s changed, it’s like you said, there’s the good, and then there’s the things that feel like they stayed the same. And one of the things parents who are coming to me now say is that their doctors, whether it be pediatricians or whoever they may be, will kind of just say, “You need to do X.” And if X is not looking like a good idea to them, it’s hard for them to go against what your insurance may pay for or what they’ve been told to do, but it still feels like really, and you know better than I, I think, that the professional world, outside of the work you do, is still trying… Is catching up to your work. It still, in some ways, like you said, it feels like we haven’t made in that area as much progress as we’d like to. What do you think?
Dr. Steven Gutstein: Well, I think clinically the progress outside of RDI has been extremely slow, and burdensome, and cumbersome. The power of the so-called behaviorist movement in autism is astounding. And as I’ve always… As I said for many years, when we look outside of autism, it doesn’t exist at all. It’s a dinosaur, just like psychoanalysis is a dinosaur. We’ve come way past that in every other area, but there, it has such a strong hold in autism that, politically, and I think that it’s been very difficult to get past it for many people. And the profit, it’s so profitable for those looking to cash in on people with autism. It’s incredibly profitable for them to provide services for somebody who’s going to be a primary provider, 40 hours a week or whatever, they get paid very little and collect quite a bit of money. And so it’s an economic model, I think more than anything that it has been difficult to, in many areas to get past, I know there’s still a number of areas where that’s the primary mode that people are recommending. Even though it still astounds me that there’s not one follow-up study of people who have received this type of early intervention as adults, even though now, let’s see, Lovaas started offering these services back in the 1970s. Think about that. That’s 50 years of services, so I’m sure people who’ve gotten early intervention have lived their lives already.
Dr. Steven Gutstein: And thousands, or middle aged, or older, younger people, whatever, adults, the adult population that’s received these services has to be in the many, many thousands, and even if you were able to contact 1% of those people, you’d have an enormously large case group to study in terms of outcome, and yet there’s not one paper that’s ever been written to follow those people up into adulthood. And the excuse that it’s hard to do, it makes no sense, ’cause it is hard, but it’s not that hard, especially if you only need to find 1% of people that… Locate them that have been in a clinic or that you can contact through parents or through other agencies. So there’s the idea that that’s the standard of clinical outcome that they still adhere to in many areas, and fund, it just still astounds me in this day and age, when I think about it, we’ve been at this for over 20 years, as you say, they’re 20 to 30 years, and it’s still taking place in that way, and so many families are being deceived. So many thousands of people are being deceived by the claims that this program, this type of intervention that they’re being offered is based on evidence.
Dr. Steven Gutstein: And as I’ve always said, it’s evidence of what. It’s certainly not evidence of being able to live a productive life, or live up to your potential, or to gain employment, or to have an authentic family life… Excuse me, or anything that we would judge as defining a quality of life. There’s no evidence, in fact. And I know a lot of adults with autism now are very much anti those programs, but how much they’re making a difference, I don’t know. I frankly haven’t kept up with it, so I don’t know politically where things are around the world. But it is still amazing, isn’t it, Kat? That if you look at medicine and you think of any other area of medicine and wonder what would be the equivalent of this? It’d be hard to find anything that would equate to the deception that continues in this area, that people even have the ability to say that they have evidence of successful treatment or intervention and get away with it and not get their licenses taken away or get put away for fraud is astounding to me, because, again, if you looked at any other chronic condition, I don’t believe that people could get away with it. I don’t know why that still occurs in autism. I really don’t. But I’m hoping that we’re making a difference. You may know more than I do, you’re more in contact with people, and you may know more than I do at this point if we’re making a difference to people. I like to think.
Kat Lee: I felt like I was in a time machine going back to where you said I, and I can remember that so well, well, there are no long-term studies. And you said that 20 years ago, and here you’re still saying it today. And I think that’s important for parents to know.
Dr. Steven Gutstein: It is. It is.
Kat Lee: It’s just important for them to know that Dr. Gutstein.
Dr. Steven Gutstein: Why is there no interest? It’s a real interesting question. Why is there an absence of interest in the autism community on following up? There are a number of adult studies, studying of people with autism, and yet there’s almost like a fear of asking the people who involved in those studies, what interventions have you had? What is your experience of those things? Isn’t that interesting? The adult literature is growing, whether it’s subjecting people to MRIs or FMRIs or the fanciest neurological things, there’s thousands of adults who are undergoing studies around the world. And in not one of those studies would they even ask a question. And think about that, that’s free you don’t have to spend any extra money. “Well, what’s your history? What’s your history?” “Oh, I don’t know.” “Okay. Could we ask your parents? Could we ask somebody? Do you remember who we could ask?” What;s your… To take a history. How could you do all this research with adults and not take any history of those adults? Which means that you see they’re still treating people with autism like they’re subhuman, like they’re not human beings. Like they’re some kind of subjects. If you wanna study people with autism, the first thing you do, if you were respectful at all, is you look at their history, as unique individuals. “Well, where are you up to now? What has been your background? Has there been trauma? Did you have other issues besides the classic ones in DSM4? Did you have treatment?”
Dr. Steven Gutstein: So you have a group of people you’re studying. And you should know all those things about them. Because then when you find out whatever you’re studying, what the results are, you can then look at the groups of people, the subgroups and say, “Well, do these factors have any impact? Do these factor?” But when you look at the studies, they do history in almost just the most gross ways, because they don’t wanna… Somebody’s in a hurry to get a publication, to do a dissertation. And there’s so many journals out there that doesn’t really… The quality of the study doesn’t really matter. You can just publish almost anything these days. So, if I was going to have any influence in the world, which I don’t, and I have zero, I would say if you’re gonna study a group of anybody who’s studying adults with autism should be obligated to find out the history of that person’s up to this point. And be able to report on that. And think about also how rich that would be if everyone did that, people studying adults, that it would create a database of thousands and thousands and thousands of people, so that you can go back and do retrospective studies of those people and saying, “Well, what about the people that had this thing happen? Or this? Or this?” And to create some kind of a universal database. Now it’s done… It’s funny that the closest to that is a database of brain imaging.
Dr. Steven Gutstein: I’m laughing because it’s been one of the most useless areas. Billions and billions of dollars have been spent on brain imaging of people with autism, which have yielded nothing, nothing. Absolutely nothing in terms of any payoff for people with autism. Not one thing. And it continues on. Because it gets funded, it sounds sexy in terms of the funders, I guess. They like it. And you get to experiment, the research, get to experiment with their new little machines, it gets to help fund their little brain machines. And I mean, if you ask me the whole idea of the neuroscience area, which has been so highly touted, has been a complete waste of money, in every area, and maybe in some areas it’s been helpful, but certainly in autism, it’s a shame, isn’t it? I mean, think about how that money could have been spent. You could have given it to people with autism, just give them the money, say, “Here is some money.” It would be much better, or given it to the parents to get a better treatment. And yet it continues on. So that would be the thing I would love to see, would be the researchers taking responsibility, and which means the journals would have to do it, the reviewers would have to do it. I’m not too optimistic about it. And it’s almost like we don’t take autism seriously as a life and death issue, that we don’t recognize that what we’re dealing with are the life of these people, many, many people.
Dr. Steven Gutstein: And the lives, and that the money that is being spent, whether it’s on intervention should be directly related to what is most likely to improve the life of that person. There’s a real disconnect there, whether it’s in the theoretical research, the applied research, the clinical services. I don’t know if there’s any other area that… Maybe I’m being overly optimistic about the rest of the research world and the clinical world. At least there’s a pretense of trying to do it in other areas. At least they think they’re trying. I mean, really, at least there’s some standard of doing that when you read. And that’s the other thing parents need to know is, if you go to a doctor, in a field, for help, is that doctor aware of the research that goes on in that area? Do they read it? Do they know about it? To be a decent consumer. Doctor is recommending something, you’d say, “Well, are you aware of the recent research? Are you recommending it because you are? Can you show me any of the research?” But nobody teaches… There’s no way to teach parents to be good consumers. It’s very hard to do. It would have to come like from the government, which is not gonna be very interested. It’s really the states who’ve… It’s really the political advocacy groups who have been in control of this, who have economic interests at heart, their own economic interests, so it’s not… There’s been no effort to teach parents to be good consumers.
Kat Lee: Well, and that is something I wanted to talk to you about, because when I think back to one of the things, there were many, of course, but one of the powerful things for me about RDI when I first started learning about it was your whole parent training and education. The depth of your parent training and education. And the guiding of parents, the hands-on guiding of parents. And one of the more disturbing trends, and I think disturbing might be an understatement, is parents telling me, “I’m being told that it’s… “I’ve actually heard, “Not ethical to train me. That I can’t be trained,” or, “That I’m not the best person to guide my child.”
Dr. Steven Gutstein: “I’m not the best person to guide my child,” who else is gonna guide your child’s development, right? Yeah, it’s…
Kat Lee: But it is the positive thing about your program today in 2024.
Dr. Steven Gutstein: Okay, yeah, yeah.
Kat Lee: That it is for parents, and that we know parents are the best guides, and I would love for them to hear from you on that, for you and me together, it’s just, of course, but I think for these parents… You always talked about losing the opportunity, the loss of the parents in the child from infancy. And I just want parents to know that we’re aware of that and hear from you that we have this hope here, right here.
Dr. Steven Gutstein: Parents and grandparents. And motivated family members. Yeah, it’s a critical thing, I think. I can’t imagine anyone else taking on this, this effort and making use of this opportunity. Our parents are not defective, there’s nothing wrong with our parents. And there’s no reason why parents shouldn’t learn to be guides for any child. That’s their role. So for someone to say that it’s unethical is close to being insane, isn’t it? It’s like, I don’t even know how to respond to that. It’s crazy. It’s unethical, I would think the opposite way around to deprive parents of the opportunity as unethical, to tell them they’re not adequate is unethical. It should be criminal to take away their, any sense of self-efficacy is unethical. And we need to be doing just the opposite. And we’ve seen it in hundreds and thousands of times that of course parents can do this, and should do this, and no one else is gonna track day to day, hour to hour, track their child, develop the guiding relationship with their child. No one else can do it. I guess it has to be a parent who… It has to be somebody who lives with that person, that child. And for someone to come, even, some untrained, some poorly trained person, college student to be working with them, to assume that they can do a better job, is the height of insanity, isn’t it? It’s just no… There’s no logic in it, there’s no… It doesn’t make any sense at all, does it?
Dr. Steven Gutstein: But there’s been a lot of… There are a number of people who prey on the desperation of parents. And once you hear that term autism for many parents, it’s just a life-changing event just to hear that, and they become easily victimized by people who want to just provide this therapy, this therapy, this therapy, that therapy, just be… So many times what we see is someone gets a diagnosis, and then there’s a list of things that you’re supposed to do, occupational therapy, speech therapy, the social skills therapy, social stories. But even though none of these things may apply to that particular child, absolutely none. Or they might or might not. They just… It’s just a boilerplate list of early behavioral intervention services, et cetera, et cetera, et cetera. Even though they’re not gonna necessarily have any benefit from them. But it certainly makes the clinicians, I mean, the diagnosticians, whoever’s doing it, makes them feel better that they have this list to give out.
Dr. Steven Gutstein: And they don’t update it, and they don’t base it on the research, they don’t look to see, “Do any of these things actually help?” And they don’t base it on the unique history of that person, I think one of the things that’s said to me about this as a diagnosis. And it’s a problem with diagnosis in general, but obviously for some diagnoses will relate very clearly to treatment options. But in autism, it’s been to the point where you get this diagnosis and it’s as if it’s all a fantasy, it’s as if there’s these treatments that you would do, equivalent to insulin for diabetes, that you need to do.
Dr. Steven Gutstein: That are gonna treat the autism. And none of them do. [laughter] But it certainly makes people feel better, at least initially to know, “Oh, you’ve given me this list of things to do.” I’ve given it to you so I feel better, I’ve given you a diagnosis and I give you this. And so there’s a sense of feel… Everybody feels some sleep that night, and the diagnosticians aren’t there over the years where it plays out, and none of these things matter, and the kids don’t get better, and parents don’t lose their expectations for what to expect of their child, so they expect less and less, so they feel good about the treatments they’re getting for their child. Interestingly enough, this is one of the bigger problems, because they stop expecting anything more, from them. So the little tiny things they see that may not even have anything to do with the future quality of life, they feel good about, they feel like they’re getting the right treatment, and because that’s what they’re being told, that’s what you should expect.
Dr. Steven Gutstein: Don’t expect more, so that there’s a gradual lowering of expectations, as families enter the system, the current system of care. And it’s pretty powerful. So it’s very hard to influence that. Because initially it gets oversold and then gradually you’re told not to expect much, and that the little things you see are really the things you should be happy… You should be happy that you’re getting them. You should feel fortunate. And I’ve heard parents say that, I’ve seen them online say that, fighting for those things actually. And rather than saying we should be having so much more, they respond the opposite way and say, “No, we don’t want to give up the wonderful treatments we’re getting that are producing very little, but compared to nothing, I guess, they feel grateful for them. And they fight for them. And so they redefine success along the way. Right?
Kat Lee: Yeah. Yeah. Well, one thing I remember Dr. Sheely saying a year or so ago is RDI is not offering pie in the sky hope, it’s real for parents. And we take the parents and help them know that they’re the best guides, and help give them back those feelings of competency that they either never had, or that were lost to them. And it’s still there. I mean, that hasn’t gone anywhere, has it?
Dr. Steven Gutstein: No, and I mean, that’s the whole point… The whole point here is, is to provide that, and to provide a real world route to develop the dynamic intelligence of people diagnosed with autism. It’s really… It really, and the other thing that we want to emphasize with RDI is how we’ve redefined autism as the lack of opportunity, due to no one’s fault, to obtain the foundations for dynamic intelligence, and the critical need to provide a root for guided experiencing, which is the only way you develop dynamic intelligence. And that without dynamic intelligence in this current world we live in, and future world, you cannot have a quality of life, you cannot have gainful employment, you can’t navigate day-to-day life without dynamic intelligence, you become a handicapped individual. And we see the opportunity to provide a second chance, to develop that for these children, and for the parents to do the role of what parents do in universally in every culture in the world, to be the primary guides, at least for the first years of their child’s development of dynamic intelligence.
Kat Lee: And thanks for joining us for Autism: 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.
0 Comments