Autism and Girls: Part 2

Autism: A New Perspective
Autism: A New Perspective
Autism and Girls: Part 2
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In this episode of “Autism: A New Perspective,” we continue the discussion about raising girls with autism. Kat Lee is joined by special guest Sharon Sargeant, an RDI® parent whose daughter is now an adult. Sharon talks about the difficulty of getting a diagnosis in the early 90s, trying ABA, and discovering RDI® when her daughter was 12 years old.

Listen to part one here.

RDI® and Quality of Life for Individuals with Autism

Some parents find it difficult to start remediation when their child is a bit older, and, unlike many autistic girls, Sharon’s daughter Alicia wasn’t masking – her autism was more challenging and Sharon realized it was holding her back from the quality of life she might be able to achieve.

When Sharon began RDI®, she wondered how she was going to teach her everything she needed to know, but found that she was able to break it down into everyday activities and moments together, and could see that Alicia’s mind and thinking were developing – and that she was beginning to know who she was as a person. Now she’s been able to see her daughter attend college, get a job, and get married.

RDI® Leads to Relationship and Growth

You may have been told that there’s nothing you can do to promote growth in your child or a relationship with them, but with RDI®, it is possible. Each individual is unique and has their own strengths and challenges and while the journey might be different for each of them, you’ll never know their potential if you don’t try. The rebuilding of the Guiding Relationship between parent and child leads to reciprocal relationships, growth, and life skills that can help your child to achieve independence and quality of life.

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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. I’m Kat Lee. And in this special podcast, we visit with an RDI mom whose daughter is now 30 years old. Enjoy this inspirational story.

Kat Lee: This is part two of our topic, Autism and Girls part two, and Sharon Sargeant is joining me. And Sharon, I have been looking so forward to visiting with you. It’s really a privilege. And I think we’re just gonna start out with letting you just tell us a little bit about yourself for those who are not aware or have not met you.

Sharon Sargeant: Okay. So, I am a mom to three. My children are now all adults. My eldest Alicia was diagnosed on the autism spectrum some 27 years ago, which is quite frightening. And then I have another daughter and a son. Do you want me to go into my journey now? Or do you want me to talk about something else? 

Kat Lee: Yeah, go for it.

Sharon Sargeant: My little sister was born when I was nearly 16. So I had an idea of development, child development. And when Alicia was just over a year old, I knew that something wasn’t quite right, that she wasn’t on the typical developmental path. And I then had to try and convince professionals that something wasn’t right. But back then, I didn’t know what autism was. We had no internet, we didn’t have a lot of information out there, and they were still quoting autism as 1 in 10,000. So it took almost two years before somebody listened to me and we got a diagnosis.

Sharon Sargeant: And from there it was a case of searching and asking the professionals, what is available to help my child? I came from a world of IT. There was courses and books for everything. And they basically turned around and said, “There’s nothing. You just need to keep her with you and involve her in everything you do,” and I’m thinking, “Well, how do I do that? I’ve got a child that doesn’t listen to me, doesn’t really seem to know I’m there.” She’ll just sit all day on like on a pile of books or in a bank of mud and dig holes and hum. And it was so difficult to engage her.

Sharon Sargeant: And so I was a little bit at a loss, and it was many years, and further nine years before I actually found out about RDI. Now, in the meantime we did do ABA, because I found out about ABA first, and we were one of the first six families in the UK to actually start to get ABA up and running. But very early into our ABA program, I realized that we weren’t going to be one of the miracle ABA families. And my daughter was totally dependent on myself and the tutors that I was employing to be able to do anything. And she would do just enough to get me off her back to get everybody off her. It was, there was nothing spontaneous at all. She wasn’t developing friendships, and it… Although we had a relationship, it wasn’t, it was a little bit off. You know, it wasn’t quite right. I felt more like her teacher than her mom.

Kat Lee: You know, I relate to you so much because our, my son is the same age as your daughter, and so we went through a really similar timeframe, and I think, and I’ve talked to parents, you know, who are… Have more newly diagnosed children. And they are amazed that at that time, like you said, it was 1 in 10,000, it kind of felt like you’d been struck by lightning or something. And there was nothing, we were told, “There’s nothing you can do for him. And you need to take care of your other child.” So just, I think that’s a long time ago, but I know, and I hear you. It’s always a part of my story that whatever interventions we tried were just what was only available, if anything.

Sharon Sargeant: Absolutely. And we didn’t have the internet. So we couldn’t go off searching for all these different programs that possibly were there and all the different advice that was out there that there’s now. And to a certain extent, I feel like people now have too much choice. There’s just, you know, you’re bombarded with all this information, but we were the opposite of that, where you were scrambling to find anything. But yeah, so we did the ABA program, and if I put my hands on my heart and I could undo that I would, because there’s things that I’ve had to, like some of the anxiety I think was caused from the ABA program that we were in at that point, and it was more Lovaas like back then, but we found out about RDI through a Yahoo group when the internet suddenly appeared, we could actually be in contact with other parents via the internet.

Sharon Sargeant: And there was a parent that had read one of the activity books and they put a review up, and I thought, “Okay, there’s something in this.” And so I ordered solving the relationship puzzle and both the young adolescent adult book and the younger child book because my daughter was 12 at that point. And so I thought, well, she probably falls somewhere between the two. And after reading, solving the relationship puzzle, I thought, okay, there’s something here. There’s something, this is the thing that I feel like I’ve been looking for, but back then in my head, all we needed to do was form these friendships. We needed to just help with her socialization, everything else I thought we’d covered.

Sharon Sargeant: It was from attending a four-day parent training and I was in Dr. Sheila’s adolescent group. And it was during that group when we talked about the declarative communication and that evening, we tried some of that out with our daughter and it was amazing that we suddenly got this spontaneous communication. Just one phrase where we’d said to her basically, was in a Chinese restaurant and we said, oh about the Chinese lanterns and the tutor that we bought with us, she turned around and said, “I’ve got one of those in my bedroom at home.” And it took nearly that 45 seconds that Dr. Sheila suggests you might need for my daughter to actually then turn around and say, “I like the purple one.” It was like, wow, you just did that without somebody saying, what’s your favorite color? So I was hooked. That was two days into the parent training when I was hooked, and I thought, right yes, definitely onto something here. And it was from there because we were coming all the way over to Atlanta for the four-day parent training.

Sharon Sargeant: I’d already lined up an RDI consultant because I thought if I’m coming all the way to America, I’m just gonna do it all in one go. So we tagged on a holiday as well. So we spent three weeks in America, traveled to the different places. And we just didn’t look back. We had our assessment and was told some of the things that we could start to put in place, and then came away and started to implement our RDI program, which was very different back then, again, because of technology. We would basically put videos onto a DVD, put those in the post, to our consultant and then have a phone call to talk through what was going on with the video footage. And so the videos themselves was almost a month out of date by the time that we started to talk about them. So technology, the way it is now, where you can just upload a video and get feedback almost instantly is amazing how much everything’s come on.

Kat Lee: I love that you’re sharing that part because for that, I’m so grateful for all the families. And I actually just moved and I found… [chuckle] I found all my VHS [chuckle] from when I was first getting certified and first started engaging… I mean it’s… It was actually pretty hilarious and I probably should digitize them and toss them but there’s something kind of fun about actually having that and remembering that, but it is such a great time. So, you were having to wait for a good month to get feedback on the work you were doing with your daughter, and I assume you just kept going? 

Sharon Sargeant: Absolutely. While I was waiting for the feedback, we had our goals and we just basically carried on same but different. Okay, well, I’ve tried it with doing it this way, now I’m gonna do this with that, and okay, if I’ve gone off track, then I’ll find that out in the consultation. And that’s basically how we kept on moving forward. And it was from working with that consultant that I set up for her to come and… With me do a presentation in the UK so that we could start to bring RDI to the UK. And she encouraged me to go through the training. I think we were about three months into our program when she started to encourage me to do the training. And then at the presentation, it was the first time I’d done anything like that. And I was given the parental view. There was like just over a hundred people, and I was like, “oh, good this… I’m talking to all these people.” And, I got such a rush from it. It was just such an adrenaline rush from being able to show our footage and talk through what was happening and the questions and everything. And in that actual presentation, our consultant at the time, she turned around to everybody and said, “I was going through training and I was still in the process of actually solving, who the hell, well, okay I’m going through training. So yeah, that was the beginning of the next step.

Kat Lee: Tell us a little bit about, and I know it’s a long journey, but a little bit about the things that you saw start happening with her that kept you going, because I know a lot of parents, whether the child is four or 12 or 20, in the beginning it’s hard. And I know for me, there are those things that you start, your mouth just kind of falls open, [chuckle] like you said, what you said about the… And tell us some things that really encouraged you.

Sharon Sargeant: Initially, as I said, it was this spontaneous conversation and actually feeling like things were opening up. I was starting to understand our relationship to a certain extent. I was starting to understand who she was but also how we interacted together and built a different bond, that started to happen. But also it was the whole mindset changing of like, before that, if say we were doing cooking together and I opened up a recipe, I would be like pointing towards, now it says, do this, add this, do that. Where is this? And from changing and moving into that guide mindset, I didn’t… I no longer needed to do those prompts. She started to think for herself, and that was really motivating to be able to see her problem solving and making decisions where she’d been totally relying on me for everything. I got to the point where I was saying I was looking for something else.

Sharon Sargeant: And when I found RDI where I thought, how am I going to teach her everything she needs to know? I can break all these things down. I can do it more like a social story type thing, or I can, when this happens, do that, but she still needed to, like next time she went into a similar situation. She didn’t recognize the same, but different. She didn’t realize all she needed to do was think about what she’d done once before in a slightly different scenario. So it was a case of my having to help her generalize by teaching her in this situation, you do this, in this situation, you do that. And that was a big difference with RDI to watch her own mind and thinking develop. And I was able to step further and further back. And again, that was motivating because I’d always thought I’d love to teach you this rather than I can guide you. And that was a big difference.

Kat Lee: I think that’s so inspiring, and so inspiring from parents when they feel stuck or they feel alone, and wondering about their child’s progress. So one of my sweet parents once told me that RDI gave her her daughter back and those things that she thought she would do with her daughter early on, and then thought she would never do with her daughter at one point. Did you have those same thoughts and feelings? I know for her, it was, I remember her first cooking video, it was… She felt like RDI gave her her daughter back in that sense of being able to have that relationship.

Sharon Sargeant: Yeah, I would say like the… To me, RDI isn’t something you do, it’s something you feel, and it’s being emotionally in touch with your partner whether that’s myself, like with some of the clients I work with, or in this case, my daughter. I started to learn who she was, where I thought I knew who she was, suddenly I had this person that was communicating back at me, not just to get me off her back. She actually wanted to learn from me. She wanted to be part of it, but I was learning from her too. And so it was very much a partnership in that way that I was learning when I needed to step in and when I needed to step back rather than overcompensating all the time.

Sharon Sargeant: And I got to a point actually, we are talking about the overcompensating, before we started RDI, I was very guilty of talking for her because I used to just watch her and see her struggling. And I found it so hard to just step back and let her do it. But it was from doing our RDI program that I got to a point where I thought, no, hold on. She can hold her own here. I don’t need to do anything. If she needs me, she’ll let me know she needs me. So I started to step back in that way. And she took on more responsibility for her own interactions with other people. And that was amazing to watch and be part of too.

Kat Lee: It’s inspiring to listen to you. So I can only imagine how it was to feel that empowerment for her. You and I were visiting, I was telling you, I have a lot of families with wonderful little girls and grown women are, you know, what would you say to those moms? You and I visited that autism presents itself differently in girls, and I think you can really speak to that, and to those moms’ hearts, and dads’, too. 

Sharon Sargeant: With Alicia, she’s also got a learning disorder and a speech and language disorder. So she was affected probably more than some of the girls that we actually see now where they’re only just realizing that these individuals are on the autistic spectrum because they’re so good at masking. So I didn’t have any of that masking, I needed to get through and help. It was obvious that her autism was a problem, and it was holding her back from reaching the quality of life that she was possibly able to get to. But with some of the cases that, the girls, young girls, young women that I’ve worked with, I think it’s a lot more complex for them, and can be a lot more difficult to unravel. So my circumstance may be different to some of the other moms and dads out there because Alicia’s case was that it was obvious that there was autism there.

Kat Lee: This issue of girls and masking is just… It’s just really, really hard. I mean, and we’re learning more and more about it, wouldn’t you say? 

Sharon Sargeant: Yeah, I mean, it’s new to us too, you know? Well, definitely new to me, watching these young girls struggling and trying to fit in, and not feeling comfortable in their own skin. That’s quite sad.

Kat Lee: Yeah. Well, that’s what I love about RDI, because we’re all about being comfortable [laughter] in your own skin, and moving your life forward as comfortable in your own skin. It’s not something that, as again, you and I with older children heard in the beginning, we were thinking about in our skin. [laughter] And thankfully we’ve come to this place where we really are talking about those things and also talking about masking, because we know those school years are challenging when you don’t have vulnerabilities, you’re just vulnerable, period, in school. I can remember being a 12 and 13-year-old girl, not some of my best memories, and [chuckle] most people I talk to, that’s the case. Not all, but most. And then on top of it, having those vulnerabilities and feeling like, “Wow, I really have to cover up.”

Sharon Sargeant: It’s such pressure. I think the first I sort of heard about masking to a certain extent was around those with Tourette syndrome, but that was my first opening to realizing just how difficult and how they hold things together during the day. And then when they get home, they just have to let loose. And I think it’s pretty similar in… With those that are on the spectrum. And there are boys too that do the masking, and it’s hard for them to hold things together. It’s got so much pressure, so much pressure.

Kat Lee: And energy. If you think about holding it together through your day, whenever you’re in front of someone, the energy that takes is exhausting. Well, I know your sweet daughter is 30, right? Am I correct? 

Sharon Sargeant: Yeah, just.

Kat Lee: Wow. And I know we’ve got parents who are some days are very encouraging and some days it seems like a long journey. So I really think you can speak of hope because tell us about where she is, what she’s doing. And we know everybody’s story’s different, so we know we don’t have exact duplications, but we’d love to hear.

Sharon Sargeant: Lizzie’s life started to change when she went to college. It was a special needs college attached to a mainstream college. And they started to listen to what I was saying and my then RDI consultant. And they could see that she had potential and helped her. And through the college, she went and did some work experience in a hospital for academic school year where she was in three different departments over the year. And she took off from that. That was… That brought her into her own. She wanted to find a job. She decided that she liked working in admin. She had the support from the college, but also the hospital as well. So they were working together to help get this work experience in place. But at the end of that, there wasn’t a job available. And then, I found a group that was just setting up called Ways Into Work that were helping her… Individuals on the autistic spectrum to gain employment.

Sharon Sargeant: So they support the employer, but they also support the individual to be able to hold the job. And she got an apprenticeship like her first placement that she had, she had an apprenticeship and she’s been working for this company for nearly seven years. In the meantime, she decided she wanted a boyfriend. And the first boyfriend that she had, she met through a club that she went to and they were together for about two years, and then that didn’t work out, and she… Then she was heartbroken and she had a little bit of a space and then decided that she would actually like another boyfriend. And there was a club that actually did like dating. So, they matched. So she went out with, I think, six different boys and then she found the person that she really liked, and they moved in together. After a few years, they moved in together, but initially they said they just wanted to get married. And we were like, “No, live together first so you know you’re not making a mistake.”

Sharon Sargeant: And then they were gonna get married and then the lockdown happened and everything kept being pushed back. But last October, they finally had their wedding day, which was extra special, one, because I never envisaged that she would actually get married. It was for me, for her to make friends, was my dream for her, and actually to be in this relationship and be getting married. And so that was wonderful, but also it was made extra special because we were finally all allowed out, [chuckle] we could meet people again, and so it was just lovely to have all these friends and family all in the same place, celebrating this wonderful occasion, and it was really lovely. So she’s still working for the same company. They’re now living together. They’re waiting to have their big honeymoon in Florida at some point, but at the moment, yeah, they’re very happy with where they are.

Kat Lee: You are too. [laughter]

Sharon Sargeant: Absolutely.

Kat Lee: And you are too.

Sharon Sargeant: Yeah, the level of independence that she now has, again, it’s surpassed what I wanted for her. I thought she would need me more on call and she doesn’t. She sort of struggles a bit with finances. She had a little bit of help with that, but otherwise, they work well as a couple. He’s also got special needs. He’s not diagnosed autistic, but he’s got special needs as well. And they sort of bounce off of each other, their strengths and weaknesses and help each other through, just as couples do. So yeah, it was quite amazing.

Kat Lee: Well, so encouraging. And I’m just gonna ask you to say a few words here to parents to encourage ’em during years where they feel like they just can’t think too far ahead because it’s just… I don’t know. I don’t wanna put feelings in people’s minds, either too painful or too frightening, name your emotion. What would you say to them? 

Sharon Sargeant: I think that you just need to keep believing in yourself and use RDI, that’s what it’s there for. Learn how to scaffold, learn how to step back, learn how to spotlight your child’s uniqueness, but also, their problem solving skills and then their decision making, all start to come into play. And that doesn’t necessarily mean that only happens for those on the higher end of the spectrum. That’s not politically correct to say anymore. But it’s not just… There will be changes. I don’t believe that I’ve seen a child on the spectrum where the parents are not invested in RDI, where there hasn’t been changes for that family and that child. They might not reach where Alicia has reached, but the quality of life is still going to be immensely improved.

Kat Lee: If there’s one thing [that RDI has taught me]… And RDI has taught me many things…so one thing though is, that once we allow ourselves… And this is hard, and I don’t do it all the time, so hypocrite alert, as I like to say. But when we allow ourselves to not be on the world’s time, and to think, “I don’t have to do this by this, or this by this, my child does… ” If we allow the time, there’s no telling. And I was visiting with an old friend that I hadn’t seen for a long time, just happened to run into him. And he said, He had volunteered in a classroom and said, a lot of these kids… And he doesn’t know, he’s a very sweet man, said, “They’ll just… They’re just never gonna get any better.” And I was thinking, “That’s not really true if we wanna even say the word better,” I don’t know that that’s the right word. But what I’ve seen is, when we give that time and space, we don’t have a crystal ball, we don’t know what’s going to happen, but what we do know is we’ll see growth. And if we can let go of, this has to happen at this time and such, it even allows that growth further, I think.

Sharon Sargeant: There was teachers along the way that basically said to me, “You’re wasting your time, your money, your energy. She’s never going to be where you’re trying to get her.” And I think, “No, I already see things you don’t. You’re not keeping me back. I can see this little spark there, and I’m going to keep growing that little spark.” And that’s basically what we’ve done. There were times over the years where it just felt like, “Oh, my goodness.” But I think moreso before I started doing RDI, where I just felt like I… I would have times when I’d go to bed and cry myself to sleep still. But as we did more and more RDI and I started to see things changing, those times stopped, where I didn’t feel like… I didn’t feel desperate anymore. I think that was the biggest change, that I knew I was doing the best I could do and seeing some benefits from doing so, and that made a big difference.

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.

 

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