RDI® Started With an Observation of Adults on the Spectrum
The beginnings of the Relationship Development Intervention (RDI®) program happened around 30 years ago, when Dr. Steven Gutstein and Dr. Rachelle Sheely began to ask some questions about autism, like “Why do intelligent, capable adults on the spectrum struggle to maintain independence? What is it about autism that sets people up to not be independent?”
RDI® Grew Into Something More Through Autism Research
Drs. Gutstein and Sheely looked at the research that had been done on autism. They began to see a common theme: the relationship between parent and child and how it evolves over time. They also found that this relationship didn’t develop as expected between autistic children and their parents. Their own research led to the discovery of the importance of the Guiding Relationship between parent and child.
The Tenets of RDI® Came From Parents
The doctors asked parents what activities they did with their children and what they talked about. They then used what they learned to figure out how parents can best engage their children, teach them and guide them, without forcing them to do it. With their findings, they were able to answer the question “How can we help the child to want to learn and engage with their world, on their own?”
RDI® Is Different – And Children Know This
What they learned years later when they interviewed these first children who participated in what would become the RDI® program was that they didn’t recall having been in any type of autism treatment. All they saw when they looked back on their childhood was spending time with their parents, playing with their parents, feeling cared for and having fun.
That’s what really makes RDI® special. It allows children to have their childhood.
Are You Ready to See What RDI® Is All About?
RDI® was built on the idea that autistic people don’t need to be ‘fixed.’ Instead of taking a deficit-first approach, we focus on restoring the Guiding Relationship between parent and child. We know that you know what’s best for your child, and that having the parent in charge of development is best for all involved. However, you don’t have to do this alone. A Certified RDI® Consultant can help you get started and keep you on track.
Ready to try something different?
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 encourage you that growth for your child is possible. I’m Kat Lee, and in this week’s podcast, Dr. Sheely shares with us the history, the remarkable history of RDI. Let’s listen in.
Dr. Sheely: In about 1990, so we’re talking around 25 years ago now, Steve and I… Actually almost 30 years ago now, [chuckle] Steve was at Texas Children’s Hospital, and I was working on my PhD at the time, and there were families coming in from around the world, because Texas Children’s Hospital was a premier world center for children, with any kind of a difference or sick children, and the research there is amazing. So he was at Texas Children’s Hospital, and one of the things that he did was he consulted with speech and language people there, and they were… These children were coming in and they were confusing everybody, because some of them had language, some didn’t, but some of them had language and they were not conversational, or the parents would say, “I bought him a pony and he still doesn’t relate to me.” There was this confusion.
Dr. Sheely: So Steve began to research what was going on with these kids, and having been at University and a PhD program, he had one course that touched on autism, but it wasn’t even about autism, but he figured out that that was what was going on, and so he decided to look around and see who was doing what. And nobody was doing very much of anything, but one of the pieces of research was research that showed that even very capable, well-educated adults on the spectrum were not living independently, they didn’t have relationships, they didn’t have jobs, and basically living at home, and I had even run into this with the woman that I was meeting with, he had a doctorate in biochemistry and something else, I didn’t even know how to spell these things, and yet she worked three days at a job.
Dr. Sheely: So he started out I think a different question from the questions most people asked, and his question was, “What is it about autism that sets people up to not be independent?” He goes on, and he also was asking the question, “And for people who are not dealing with autism, how do they become independent?” So rather than looking at what somebody couldn’t do, like they can’t have a conversation, they can’t make a friend, so there’s something very basically different here. And so that’s where he and I began to look at autism and think about a direction that would create motivation for people to take on their own learning and put parents back in the driver’s seat.
Kat Lee: It’s such a beautiful program. I love knowing the history. When you started introducing this to parents, this had to be new, “I’m going to be involved with this,” I’ve been told that no one can make any difference… [chuckle] I mean, we have to remember 30 years ago. “So is this even possible?” What kind of reception did you get?
Dr. Sheely: I think the reception was good, but I think the reception was good for an odd reason, we had been talking to people who were giving the diagnosis, and we had been making brochures to describe what we thought was going on with autism, and so they felt that we were somebody that could be helpful, and at that time, there was no RDI. RDI didn’t really exist for probably at least another 10 years, we were just looking at what was going on, so we started by reading developmental psychologists to see when it goes the way intuitively, it goes, “What does that look like?” And while there were charts saying, “At six months a child will do this, at 12 months a child will do this,” we knew that wasn’t what we were looking for, so we went back to the research to see what people were saying about development. Now, at that point, we weren’t looking at psychology, we’re just looking at development, and you have to remember the incidents at that point was one in 10,000, so there wasn’t a lot of research, and a lot of people had never heard of it.
Dr. Sheely: But in doing that, we began to see that people were talking about this relationship between parent and child and how as that evolves, a lot of mistakes get made, and those mistakes are kind of good, because a child learns to be more resilient, a parent learns to be more resilient ’cause they’re always tracking themselves. So we began to look at the research and then to ask ourselves the question, “Can we get families who are dealing with autism on a better developmental track?” So when people came in, we talked to them honestly about where we were and what we were looking at, and the way we… We had a one-way mirror, [chuckle] just really great. I wish I had one now, but we would ask people to go into a room with the one-way mirror, and we would ask them to just play with their child. So we’d have some toys in there, and then we would take what they were doing and we would watch what they were doing. The other thing we did was we brought in children who were not dealing with autism, families that were not dealing with autism, and we asked them to play. So what we were able to see was the difference from one family to another in kind of the spontaneity and that what we began to call guiding because Barbara Willowcroft called it that, guiding, [chuckle] and what that looked like.
Dr. Sheely: So when we started, we weren’t starting by saying, “This child can not have a conversation with this parent,” we were saying, “Developmentally, what’s different here? And what do we do about… What do we do about this? How do we address it? And how can we address it?” So parents were glad to hear this, and in fact, some of the brochures we wrote and put it in developmental pediatrician’s office, I think they were so well done that the developmental pediatricians would call us and say, “I’m out of the brochure, would you bring me some more?” So we were getting feedback from the people who were giving the diagnosis, and we were also reading the researchers, and particularly we were looking at books that written on development.
Kat Lee: I think that’s such important information today because RDI’s research base from your study, Dr. Goldstein study of developmental research, and sometimes I think people are unaware of the body of developmental research there is to draw from on how little babies develop, and when you start focusing on that development, it starts so early. I was just watching a video of a little three-month old baby, and it’s there. You all went and said, “These things have to develop in order for this other to be there.” It’s quite remarkable, and I love the way you talk about the parents responded to that, and I think as a parent, maybe they responded to that because it was like, that’s what’s missing.
Dr. Sheely: Mm-hmm, yeah. And we saw parents, we learned a lot from the parents, so while we were really trying to understand how the sequences… How to make it happen, the parents were also trying things, and so I remember one mom coming in and saying that every morning, she got up with her little girl and they cut up fruit for breakfast. Well, what do we talk about? We talk about cooking. [laughter] Well, there we are, we’re talking about cooking, but parents began to just do these things with their children they’d always wanted to do, and I think what we did that was… I’m assuming it was unusual, seemed unusual at that time, we actually just looked and observed and tried to understand what was going on. The other thing that was important to us was that the children not be… That the children are engaged, not being made to do things. And so we were figuring out different ways for children, for parents to engage their children. And you know, in the beginning it was hit or miss, and so we would say to parents, “What do you think… ” You know, the parents were actually… They were collaborating with us and it was really a very wonderful experience. So I think those were the things that really stand out in my mind when I think about this.
Kat Lee: Well, when I think back, Ben, who’s my son is 30, so 28 years ago, we were told, and I know you know this, but that there wasn’t really any hope for him, that we should focus on our daughter, there just wasn’t a lot out there. Today in 2023, there are so many therapies, there are so many even things broken down, if you will, and the professionals are very… Specific things, we didn’t have someone to help us with eating issues or sleep issues, we kind of had to fumble through ourselves on those things. But there’s so much to choose from, and I think if I were a parent today, I would feel pretty overwhelmed. That was a very hard time to not have anything, but it’s also, I think a hard time to not know, like we didn’t. We had no education, my husband and I, in child development. We had a daughter and as I like to say, and we just enjoyed her going through those stages without really thinking about the amazing… We thought she was amazing, but not really thinking about, “Oh, she’s going through this and that and the other.” So I think about parents today, thinking back, what do we tell them today? Why is RDI still so critical? I do tell parents, “I know you may do other things, but don’t not do RDI,” a double negative.
Dr. Sheely: We have a research paper coming out, and it was by invitation, we were asked to do a case study of one on someone who had just done RDI, and because of Facebook, [chuckle] we found four people. And so we interviewed them, we asked them all the same questions. We asked them questions that dealt with resilience, we asked them questions that dealt with, do they have friends? Do they have friends? Do they have relationships? What does their life look like? Are they living independently? And everything that we had hoped would be part of the lives of people we were dealing with were something that we saw with these young men. All four of them, they all had relationships, three of them were living independently, one was in a position where he was trying to develop his business to the point that he could live independently, it was right after COVID, so we had that going on too. Every one of them had had setbacks, serious setbacks, and what I loved about the stories they told was, “This happened to me, and so this is what I did.” “I lost my job because COVID, and so I went online and I got another job that was better. It took me three months,” which is pretty good for getting… Being right out of college and getting… So we had those kinds… That we had those kinds of stories.
Dr. Sheely: And as I talked to them, I was so impressed by how much I enjoyed the conversation, [chuckle] and that will come back… That will come back to people who say, “I just wanna have a conversation,” and we knew early on that teaching people how to script a conversation would not get them where we wanted them to go. So working on communication before language helped us do that. There was another very interesting thing that happened with three of these young men. Not the fourth, the fourth got involved with his mother much later in life, and so he knew what RDI was, but I asked them, “Well, what do you remember about RDI?” And they all said, “What’s RDI?” [chuckle] “Wait a minute, do you remember when you used to come to our office?” And they said, “Yeah, and we played and did things like… ” But they didn’t, and I loved hearing them say that because they didn’t feel like therapy was being done to them, they felt like they were with their parents, and they and their parents were doing things together, so I think that’s a brief history of RDI.
Kart Lee: Yeah. I think that is a beautiful, beautiful conclusion. I know Dr. Goldstein has said he doesn’t want children to feel like they’re being therapied, he wants them to have their childhood, and I think that’s what you give.
Dr. Sheely: You know the book, I’m really getting ready to do an update for the book, My Baby Can Dance, and about early 2000s, we were having an annual conference and we said, “Anybody wanna write a chapter?” And so we had parents and consultants write chapters, and in almost every one of these chapters, the parent says, “I still remember the day when I felt like I got my child back,” and that wasn’t a question we asked, it was as we talked, they were remembering kind of a pivotal moment when their lives seemed very different, and, now, that’s what we’re looking for, looking for the relationship that is a guiding relationship, that the child is a good apprentice, which means that the child is always looking to the parent to guide him and teach him new things, and always wanting to learn new things, wanting to take on his own learning, having that sense of self, that sense of competence, “I can do it.”
Kat Lee: And thank you 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 always encourage you that growth for your child is possible. I’m Kat Lee, see you next time.