An Autism Diagnosis Can Leave Parents Feeling Powerless
In this episode of “Autism: A New Perspective,” Dr. Sheely talks about RDI® and parent empowerment. So many parents of autistic children find that they don’t know what’s going on with their child’s learning and growth – they don’t know what’s happening at the clinics or at school – and they don’t know the next step, or how they can help, and it leaves them feeling powerless.
The RDI® Program Gives That Power Back to Parents
When you’re guiding your child through RDI®, you’re in charge, and you know exactly what’s going on, where your child is in their growth and development, and what the next step is.
Want to Know More About Guiding Your Child with RDI®?
If you’re ready to take control of your child’s learning and development, the RDI® program might be the right fit for you and your family. We put the power back into the parent’s hands by helping you to re-establish the Guiding Relationship, with help from your Certified RDI® Consultant. With RDI®, you can use everyday experiences to help your child build relationships and life skills.
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 week’s podcast, Dr. Sheely talks to us about RDI and parent empowerment. Let’s listen in.
Kat Lee: Talking to you, I talk about parent empowerment, I feel that that is what drew me to RDI as a parent and as a professional, was this beautiful program you and Dr. Gutstein put together for empowering parents to be able to guide their children, help with the direction their children should go, take part fully in moving their child forward. I love that part of RDI. So for us when we talk about this, and we’ve been together about 20 years now, this is nothing new for us. But I think we need to continue to talk about it, because so much I hear parents coming to me today saying they feel powerless, they don’t feel they know what’s going on with their child. Or they may be at a clinic or a school or what have you, they don’t know what to do. They don’t know what to do when they’re with their child. How did… You and Dr. Gutstein so many years ago, as we say, knew that was important for parents, how did you know?
Dr. Sheely: Well, we knew because we studied it. And it was… The field of autism was very confusing. Because there were people who could do things, and those people were referred to then as high-functioning, they could do things. They could have… They had language, they could go to school, they could get degrees. Had things, but they were not competent when it came to their own independence, and they also didn’t feel competent. The parents really… I think the parents had been trying to figure out what to do, but there was all that history of the refrigerator moms, and then there was the history of ABA and operant conditioning. And so whatever was going on, we knew that it wasn’t working, because the parents didn’t feel competent, and the people with autism didn’t feel competent as well, nor did the practitioners or colleagues who were working with them. So we did a couple of things. Steve loves to read research, not so much for me. [chuckle] And yeah, [chuckle] I love to go… Just go and observe people and watch them. So Steve read a lot of people, a lot of books. And you remember at one point when you went through training, you had to read five or six books. And then we expanded it, five or six more, so to get through [chuckle] training, you had to know everything that we knew and then everything that preceded what we did. But what was interesting was the book…
Dr. Sheely: I think the book that affected me most was Barbara Rogoff’s book, which was “Apprenticeship in Thinking.” And she just went around the world and said, “How do people raise their children to become independent adults?” So, we might have added that at the end. But she went to countries that… Where parents were very well educated and where they weren’t educated, more agrarian cultures. And everybody was doing the same thing. So it made sense to us that if there was this plan in place, this plan that was… That superseded what we could think of, if there was this plan in place, that we should study that plan and try not to do something new but to try and replicate what was already in place and was around… In place around the world. So that’s what we did. We thought… She talked about the guide… She didn’t call it the guiding relationship exactly, she called it something else almost like that, maybe “The Mindful Guiding Relationship,” I don’t know. But that was where we realized, where I realized anyway, that we had to study what was working, how it happened, and then to ask the question, “How do we help parents when their children are not good apprentices become good apprentices to them?”
Kat Lee: I tell parents, “You’re the best guides for your children, you know your children best.” But it’s amazing to me how when they come to me… And an average age might be their child is five, six, seven years old, they don’t feel that way. They don’t feel that way, and in some cases, they feel quite incompetent compared to other people working with their children. Why does that happen to them? I’m so curious. I always think that when they’re like, “Well, so and so works better with our child,” or, “This therapist works better.” It’s just almost pervasive in them at that point, they just believe it, but they want something different.
Dr. Sheely: Well, they’ve been taught that. They may have thought in the beginning, “Well, we need to figure this out.” And then the professionals came in and said, “You don’t have to figure it out, we’ve figured it out, and we’re gonna do it for you.” And so they would see maybe like a college freshman, a 19-year-old, who seemed to be better with their children than they were. And so it was something that was taught to them, and it was also something where they struggled with it, because they didn’t know what to do. They had heard the devastating diagnosis, “Your child has autism.” And some of the things that they were told, “It doesn’t matter how competent you are, this is the worst diagnosis you can get.”
Dr. Sheely: So starting with that and realizing how parents felt, that the diagnosis that the child’s inability to be in a growth-promoting mode was something that the parents just didn’t know what to do about it. And I think that we also were a little bit confused in the beginning because we were taking a developmental approach, we thought, “Well, let’s just replicate development.” And if you’ve spent five minutes with a two-year-old, you know you’re not gonna do that. [chuckle] But there are things that you can do to begin to activate that growth seeking direction with a child. And then at that point, the parents are in the growth promoting mode. So it fits together nicely. It’s what’s observed, researchers observe this, and that’s what they see. So that was how we started thinking about it. And we started thinking about it by telling the parents… It was… Sometimes it was easy, ’cause we’d say, “Oh, you have six other children, how are they doing?” “Oh, they’re doing great.” “Ah, so you do know what to do.” [chuckle] A parent with one child is a little bit harder, not because they’re less competent, or because they don’t know what to do, but parents can see for themselves, “Yes, I’ve already done this with my other children.”
Kat Lee: One thing that you said just really hit me, about the way the information is given to the parents initially, that this is the worst thing that could ever happen. The way we talk about autism needs to change, because once you give that message, and I know we’ve taught many times about how we received a very negative message, it gets kinda baked in really quickly into the parents. And I think that leads to the feeling of incompetency too. When you’re told, “This is the worst thing that could ever happen.” The whole [chuckle] way we talk about this… When I say, “We,” I just mean professionals and folks who are diagnosing, really need to be mindful about that more and more. Because it’s baked into you. And it’s like anything that sticks, it’s hard to remove that from parents to help them see they’re quite capable.
Dr. Sheely: They’re quite capable, and their child has potential. Because some of the early diagnoses when people were giving it were, I don’t know if they actually said it, but they were intimating, “Your child doesn’t have potential. So set up the trust fund, and make sure you have somebody in charge of it.” They were giving all of this information before anybody had even begun to work with the child. Devastating to hear that, and some people actually did it.
Kat Lee: I know you too, along the way in life, we’ve had friends who had children with many different kinds of vulnerabilities. And yet for those friends of mine who had vulnerability… Illnesses, all kinds of things, this happens with children. But they were not given that same, “Your child doesn’t have potential,” [chuckle] message no matter what that was. It was, “Here’s the positive, here’s examples of children who’ve gone on and done this.” But for some reason, that message with autism has not been that. And I think for the parents, they do a logical conclusion, which is, “I must not be capable of dealing with this then, if this is that… The worst or whatever.” It’s just very sad, and children need their parents.
Dr. Sheely: A part of the reason I think for the worst case scenario is that when Steve and I began to look at autism, the incidence was one in 10,000. And we think about it now, everybody knows about autism. There are cafés being set up run by little businesses and things like this, and it’s very different. But at that point, it was really rare. And so it wasn’t as if anybody was specializing in autism or even knew about it. The people who were giving the diagnosis probably just figured out two weeks ago how to give the diagnosis. So that was another thing, the literature was not encouraging, and the parents and the clinicians didn’t have a good sense of what it was.
Kat Lee: You talked about our reading, which I remember very well [chuckle] we did. The book that impacted me, and still does honestly, was “The First Relationship” by Dr. Daniel Stern.
Dr. Sheely: Daniel Stern?
Kat Lee: Yeah. Because it… That research that was done with mommies and their babies, and mommies and babies where the babies developed typically and those that did not, showed the impact on the social partner when the things weren’t quite… Weren’t regulated basically, something we really focus on. And I think that also helped me understand, that also helped me understand better why parents were so affected. When you’re trying and trying and trying with your child, and nothing comes back to you, or what does come back to you is, “Stay away,” that impacts parents as well. And I know we have to understand that, that they may have felt rejected or may have felt incompetent based on their efforts.
Dr. Sheely: I think about parents where a child isn’t responding, and the growth-seeking has not clicked in. And what often happens is that the parents become more assertive with the child. They get in their face more, they try harder, they try to get a smile out of them, they will do anything to get some kind of a response. And actually what you need to do is calm down. And so once that gets thrown off, and you don’t know just calm down, get a slower, quieter regulatory pattern going so that the child can begin to self-regulate, and you can co-regulate together. Once that gets in place, it’s easier to get everything else in place. But if you don’t know to do that, you’re going to try to get the child to do something. And actually, Katherine, I saw a mom one time who was a professional, and she said, “I really understand stimulation from stimulating this child.” And she was in the child’s face, the child was arching, trying to get away. And I remember saying to her, “Can I hold him? He’s so cute.” Of course I wanted to hold him. So I held him, and I said, “Let’s just sit here for a minute, and you look at him.” And the child was okay, the child actually wasn’t trying to avert gaze or anything, the child was looking.
Dr. Sheely: And I said, “Now, just move your head a little bit like this.” And so she did, and the child began to get in sync with her over a distance about three or four feet. And when she saw that when she slowed down and gave the child time to regulate and to get in sync with her, she got in sync with the child, it changed everything. And so many of the early interventions… And I don’t mean this to be critical, because if they hadn’t been trying, people would still think there’s nothing you can do. Many of the early interventions would get in the child’s face, make ’em speak faster, make ’em say the words. And don’t give facial expression, don’t give them a clue about what to say, keep your face blank. [chuckle] And of course, we do the opposite. Get the facial expression in place, [chuckle] and then the language will come. And often, it does.
Kat Lee: Well, I love RDI, I love the empowering we do. You and Dr. Gutstein came up with a wonderful program for parents basically to be trained and I would say to be supervised. And what I mean by that is they turn in video clips to us, we help them learn how to guide their children. It’s a wonderful program. I love the program too, because you both have always emphasized that, “We are helping you as parents, we’re not judging your parenting. We’re just helping you be the parents that you are.” There… I always tell my parents, I’m like, “Oh,” I just thank you so much. And I always say, “This is you, this is you. I’m just helping you realize yourself and realize the parent that you are, because it’s true.”
Dr. Sheely: I think another thing that I love about RDI… I love it too, of course. [chuckle] But I think the other thing about it that I love is that we’ve got a standardized program. So I don’t mean it’s just like anything goes and try to figure out an objective, we’ve got a lot of objectives. But within that framework of all those goals and objectives, we recognize that each child we see is unique, and each parent is unique. And so we don’t try to make the parent or the child become somebody they aren’t, we try to help them fulfill their potential.
Kat Lee: And there is so much potential there, [chuckle] and that’s the beauty, and that’s our message to parents. There’s so much potential in them and in their child.
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.