A Former RDI® student shares her story
In this episode of Autism: A New Perspective, host Katherine Lee talks to Alysia Elliot, a former RDI® student who is now in her 30s, and her mom Sharon Sargeant about Alysia’s life with autism before RDI® and how starting an RDI® program changed everything.
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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. In this special podcast, I had the opportunity to visit with an RDI mom and her daughter who is now in her 30s. Sharon is also an RDI consultant and she and her daughter Alysia share their RDI journey with us. Let’s listen in.
Alysia: I was three years old when I was diagnosed with autism. And I had tutors coming in from probably working from home, and they helped me read and write and learn educations, like maths and English as a homework. And as a little girl, I did ABA. And the school I used to, my previous school was Cannon Lane in Pinner.
Alysia: And then afterwards I was sent home from school for whipping off my hair. I know it’s kind of embarrassing, to be honest. A bit scary for family.
Sharon: That you had some, what would be labeled as behavioral problems by the school, but it was actually you reacting to the fact that they couldn’t cater to your needs listening. So they thought that they were trying to teach you and help you but actually they were hindering your progress because you just couldn’t cope with what they were trying to do.
Alysia: Yeah, I never cope with anything, what the teachers say, which was a bigger worry when I was 5 and I moved to Harefield the year after to put things right and making new friends as well and to have a good education.
Sharon: Do you want to think about when we started doing RDI? Can you remember what happened around that time and what that felt like for you?
Alysia: The only thing is before starting up RDI when I was 11, the ABA programme stopped and later moved on to another programme called RDI And that’s where everything all began.
Kat Lee: Okay, what began?
Alysia: RDI began when I was 12. And all the programming changed. And when we saw Sarah Honda in Virginia.
Sharon: Yeah she was our RDI consultant back then, wasn’t she?
Alysia: Yeah.
Sharon: I don’t know if you remember but actually it was a big adventure because we went out to America. We went to Atlanta first for me and dad to go to a parent training and that was the beginning of my journey of learning how to do things differently to what I’d been taught until that point.
Kat Lee: What was that journey like for you, Sharon?
Sharon: I had been looking for a while for something different. I felt like we were stuck in ABA.
Sharon: I was a big part of the ABA program as well. But I felt like we wasn’t really making any progress and I felt like I was going to need to teach Alicia absolutely everything and you can’t possibly teach everything, you know, for every circumstance that might happen. And I picked, I went on to a chat group and I saw on their talk about the RDI books, the activity books back then. I ordered that and solving the relationship puzzle. And as I was reading, I was thinking, this sounds like what I’m looking for, like the piece that’s missing.
Sharon: And in my head, I was thinking we just need to take social interaction. But it was only after going to that parent training, I thought, oh my goodness, we’ve got so many missing pieces, so much that we need to work on. And so meeting Sarah and Sarah looking at the way that we were trying to approach and the demands that we were putting on Alicia without even realizing we were doing it. It was a big mindset change. Can you remember when we first started doing like activities and different things together using RDI?
Sharon: Can you remember what that felt like?
Alysia: It felt very different. At the age of 12. But I was unaware with one of these activities and programming that we’ve been doing, and I wasn’t really quite interested into the activities and the games until everything started to change. Well, everything did change around me.
Sharon: When you’re saying it changed for me, I think when we first started doing some of the things together, I remember you saying to me, this is boring.
Alysia: Yeah, I remember that. I remember saying it was getting kind of boring at first until it all picks up with a lot of teamwork and everything.
Sharon: Yeah. And I think that what you were saying was boring was actually because it was really challenging for you, because you had to start to think for yourself, because up until then, I’d done so much to try and help you that I was overcompensating and I was doing too much and directing you and giving you instructions. But then because of the direction I was given, I started stepping back and you had to think more for yourself. I think it was tiring.
Alysia: Yeah, it was absolutely tiring. And you see, everything can be a bit of a challenging start when you’re in your teens. When I was in my teens, it feels hard, for me, absolutely hard. I couldn’t bear to continue and couldn’t bear to keep up with the good and the bad bits.
Sharon: What good and bad bits?
Alysia: The things that I find fun and exciting, like playing ball with everybody, trying to make up stories.
Sharon: But I think that you started to understand how it all fitted together, ’cause initially, you did find some of these things difficult. But as we kept on repeating different things, you seemed to understand your role a little bit more.
Alysia: I did.
Sharon: I mean, we did an awful lot of things together. Can you remember the things we used to do together?
Alysia: One of the things we did together was like cooking, making beds, even look at fun things.
Sharon: If you had to think about how you think RDI helped you, how would you say you think it helped you?
Alysia: With RDI it did help me get through a lot of challenges, and I had to overcome some of my biggest fears, which I’ve been doing over the years.
Sharon: What sort of fears, Lisie?
Alysia: With exams and the homework that I keep having.
Sharon: What about things at home?
Alysia: With home, they seem to help me. They seem to help me get better and to become more independent with myself.
Sharon: Yeah. I would agree that what we did helped you to be more organized and to problem solve. When we talked recently, you talked about some of the things that we do or have done where you feel like the way that we’ve gone around it is to do more like teamwork, like brainstorming type things.
Alysia: And also just telling stories of emotions and everything.
Sharon: Yeah. It’s been a big part of what we’ve done is to think about your emotions and the decisions that you can make based on the emotions that you’re feeling.
Alysia: And another thing is we video record on the stories of emotions that we get and the only thing we see is how I feel like I’m happy or sad or exhausted or even flustered.
Sharon: I remember now what you’re talking about. It was the videos that we used to do to help you to get more in touch with your emotions, what you was feeling and thinking about things that were happening. So we would talk about things that had taken place and reflect on what had happened and you would tie your emotions to those.
Alysia: Yeah.
Sharon: And then we would start to think about the degrees of emotion. So was you a little bit upset. Was you okay?
Alysia: There are a few times where I became however emotional to start off with but if I’m feeling not depressed to overwhelmed, then there’s a time when I can share the emotion and it’s okay to just share them. Not to keep it in for as long as I can.
Sharon: I remember what we used to use those videos for was partly to reflect upon things that had gone before. To think about things that might be coming up. Do you remember doing that?
Alysia: I remember that. And even adventures outside the UK, because last year I was in Paris, France. That was a big adventure for me.
Sharon: I was with you when you did that. Was I? You went home on with.
Alysia: Tom and his family, his mom. I was, to be honest that was just the beginning of them on your relationship. And only beginning for making new friends and leaving the nest, which I did really five and a half years ago, when I decided I needed to move independently
Kat Lee: This is for either of you, but in RDI as a consultant, I talk to a lot of teenagers and parents of teenagers and even older, what we’d call young adults who are coming to us who’ve never really gotten the help that they needed. So for either of you to think about what would you say to them about how RDI can help them would be very helpful, because many times they feel a bit hopeless as do sometimes your parents, Sharon. And what I want people to know, and my son, like you, Alicia, started when he was 12, and it changed his life. So I want people who are teenagers and young adults to know that it’s not too late to sharing.
Sharon: I do believe in this whole school that was out there many years ago that you have this frame of opportunity, if you haven’t started doing something with your child by the age of five, their brain’s basically locked and you’re not gonna be able to see any difference because I’ve seen such a change as a result of just changing my mindset, changing my approach under the guidance of RDI consultants. And just I remember the first time with Alicia when in RDI, we talked about the difference between like instructional when questioning and understanding and changing your communication to be more about declarative language, like making comments to invite a response.
Sharon: Initially, as I was talking about there with Alicia when we first started, you would time out and you say, This is boring, I don’t wanna do this, this is boring, but it was because I was doing less and I was encouraging you to do more, and it was challenging for you. But over the years, the things that we’ve challenged you with, you’ve come up with your own ways to solve those problems. I mean you.
Alysia: I did enough.
Sharon: So, I mean, obviously…
Alysia: And keep up the good and bad pieces. And what I did, I do bring them all up.
Sharon: Yeah, when you found things difficult, given time to try and problem solve and realize that we can all make mistakes and mistakes are not a bad thing, that we can learn from them, you’ve just evolved from that. And just to me, your independent thinking, it got to the point where, at 12, if someone had said to me, you would get married and live on your own I would never have thought that was gonna be possible.
Alysia: Which I did.
Kat Lee: You guys, both of you are just been so generous with your time to help other people. Is there anything else you’d like to share just to help others who will be watching in this moment? Anything else you’d like to say?
Sharon: If I could do it all over again, I wish I’ve known about RDI sooner, that would be the only thing that I would say. But I would have to like to put the approach in place sooner. Not that it was really available when Alicia was free, but if I could have done it. If I’ve known about it, I would have done it differently. I would never have gone down the route that we went down, just I felt like from being involved in RDI program that I learned things about myself. I learned things about Alicia that I would never have known if we haven’t been going through that whole basis of relationship, that the whole thing back and forth.
Sharon: And by allowing me to think more about what I was doing, allowed me to understand and for Alicia to express herself more. So I learned things that I would never have known about Alicia if we carried on down the other types of programs that are out there, and I think that is why we’ve reached the level of independence that Alicia has is because of the whole trust that was built through RDI, and I feel like there was an element of where I needed to be able to trust Alicia to have more capability than everybody was telling me she had, and Alicia needed to learn to trust that I wasn’t going to try to control situation. And I think that was one of the biggest things of RDI, was the whole mindset changing, but the parent, the whole way of looking at things differently and the hope that RDI gave me. And I’m just seeing those changes, and sometimes it’s not until you sort of look back that you actually think, Wow, we’ve just made some massive steps, and other times you see it in the moment, is just I think like the biggest thing with RDI is, it doesn’t mater how much you tell somebody about what it does, until you’re doing it and you feel RDI you really don’t know what RDI is. That’s the way that I think of it.
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.
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