The Unique Joys and Challenges of Parenting an Autistic Daughter
In this episode of “Autism: A New Perspective,” Kat Lee is joined by special guest RDI® Certified Consultant (and parent of an autistic daughter) Nargis Carnahan, to talk about raising a girl with autism. Nargis talks about her family’s experience with RDI® and how the program turned things around for them, starting with finally being able to have a relationship with her daughter.
Kat and Nargis delve into the joys and challenges of raising a daughter on the spectrum, and how autistic girls who grow up to be autistic women have a set of their own unique challenges they must face. Some of the topics they tackle in this episode include:
- Talking to your daughter about puberty and sexuality.
- Teaching her about bullying, consent, and other situations where her vulnerabilities might be taken advantage of.
- Helping her to learn to communicate with others and build friendships.
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 special podcast, we visit about a very important topic, Girls and Autism. Let’s listen in to our very special guest. I’m really excited about the guest we have with us, Nargis Carnahan. Nargis and I have worked together for some time. Nargis has a wonderful family and a wonderful little girl that I’ve known for some time now, Nargis, and it’s just such a joy to know this family and Nargis, we welcome you, but we also really appreciate your willingness to share.
Nargis Carnahan: That’s my pleasure. Thank you for having me on today.
Kat Lee: So why don’t we start with you just telling us your story, just sharing with us your journey and how you came to RDI, and whatever you would like to share.
Nargis Carnahan: Sure. I have a preteen daughter on the spectrum. I can’t believe how fast the years have gone. She was diagnosed in preschool and that was after a couple of years of us grappling with what was going on. So by the time we got our diagnosis, it wasn’t a great surprise to us, but we had a long road ahead of us. We didn’t really understand the journey that was ahead of us. About a year after the diagnosis, we…Well, we started our RDI journey in earnest about a year after she was diagnosed and we have not looked back since. I really felt at the time when we started RDI that… It was very clear to me that was going to be our pathway.
We had tried a lot of other interventions up to that point and it just felt like we were doing things that weren’t working, and RDI made sense to me, and it’s not easy. It’s definitely hard work, and it’s everyday work, but we have seen amazing changes in our daughter. And that’s not to say that it’s all done and dusted. Every layer of this onion that we unpeel, we discover just the depths of her deficits, but we feel like we’re on a pathway, we feel like RDI has given us hope, and it’s really oriented us to what a wonderful journey this is to be on this journey with this amazing child that we have.
Kat Lee: When I think back to when we first met, the picture I have, and correct me if I’m misremembering, is just that you and your sweet little girl could not really even sit on the bed together, and you couldn’t just be.
Nargis Carnahan: Yeah, I have this iconic memory in my mind. We couldn’t be together in any way, shape, or form, and sometimes I try to unpick when did things change? And I can’t. It’s like a great love story. You can’t pick exactly the moment when things changed, but they have changed a lot. And I remember before she was diagnosed with the speech therapist and the OTs and we got a trampoline, so she’d learn to jump, and she did learn to jump, but that didn’t make our lives any better. I think what we really wanted was to know our daughter and to not have to infer everything from what she did or what she didn’t do. We wanted to know her and RDI gave us a pathway to that.
Kat Lee: Now, our topic is Autism and Girls, which seems to suggest or we might infer from that that there’s a difference and you and I visited many times that when you have a vulnerable child, you have a vulnerable child, whether that’s a little boy or a little girl. But our topic, and one of the reasons you were so gracious to join us is because you do have a daughter. Can you share with us some of the things that were a concern to you that you feel like were connected to your daughter?
Nargis Carnahan: Yeah, I think that every child on the spectrum or not, boy or girl, every child is on their own journey, and is unique and wonderful. And I remember reading. at the point of diagnosis, there’s one page fact sheets on Girls and Autism, and I could never relate to them. They never described my child and I felt like it was just another way to be alienated. So what I have come to think more about, particularly as my child gets older, is the journey that women and girls go on. We grow up in a different cultural context. There are different expectations of girls and women in our society and different biology and I wanna be in a space where we can acknowledge that and discuss that so that every child gets all the support they need and beyond those early childhood years. ASD is a lifelong journey for the people that live with it and their families and the issues change, and I found myself in a space slightly where it’s been hard to engage with people on that level about the unique issues, I think, that girls and women face in our society.
Kat Lee: I read often about, there’s this percentage that are boys and this percentage that are girls, and that percentage is so small, but I actually have many wonderful little girls that I see their families. So sometimes I wonder if that’s accurate, but assuming that it is, I feel like just the fact that that’s talked about in that way has to be a little bit lonely. I’m so glad we’re talking here.
Nargis Carnahan: Yeah, it does feel lonely. I feel like the stories that I hear and the footage that I watch represents boys and I’m not sure… Obviously, each child is unique, but it’s like everything in life. I’d like to see young girls, young women represented. Just like when I turn on the news, I don’t want to see [chuckle] the stereotypical image of a man every night. We’ve adapted to that representation of women in our society and it would be nice to say that reflected in the discussion about the needs of ASD people.
Kat Lee: Now, you and I have visited before about the mother-daughter relationship and I know how precious… From the beginning, we talked about how precious that is to you. I can only imagine you felt that was so highly threatened by your sweet daughter’s vulnerabilities. When you’re starting out and you can’t just be together, that had to present challenges for you emotionally.
Nargis Carnahan: Yeah, it really did. I always knew in my heart that we had a deep connection. There was no way that we couldn’t have from all the things that we had been through together, particularly in the early years when I didn’t really understand what was going on for her, but I can tell you that in this COVID era, we’ve made some really significant changes in our family. And for the first time, my daughter spontaneously said to me, “I love you,” and that was… I always knew it, but it’s different to hear it, and it’s hard to have waited so long, but for all those developments, whatever track a child is on, when those things happen, they’re hugely significant.
Nargis Carnahan: And yes, I missed out on those particular words for years, but now they’re here and I will cherish them. I cherish everything that I have with her now because I understand the struggle that she’s been through and I know. I know because the issues that we all face as people in society trying to negotiate and navigate complex relationships. I know she’s going to have struggles because I’ve had struggles. [laughter] Everybody has struggles. I just know she’s going to have struggles because she has additional vulnerabilities, additional obstacles, and for her, an impaired ability to send and receive communication. So I worry, I worry a lot about her and how she’s going to navigate all the things that everybody has difficulty navigating.
Kat Lee: Yeah, yeah. And you’re into the preteen years, which most of us [laughter] have particular memories about those times [chuckle] specifically. We can share that. So let’s talk a little bit about your RDI journey and just some of the things that you have seen help you and your family and the things that you’ve seen come about. It’s actually been very remarkable to be a part of that.
Nargis Carnahan: Yeah. I would say that we had an experience recently when my daughter was unwell. It was just a tummy bug, but for the first time, she was able to express what was going on in her body. I didn’t feel a sense of panic, I didn’t feel a sense of, “Woah, we’ve got to go straight to the hospital, ’cause I don’t know what’s going on.” She was able to share, do that kind of experience sharing communication, and that has been such a significant development. And it’s been solely because of RDI, the emphasis on multi-channel communication in RDI, the emphasis on experience, sharing, communication, the emphasis on also, I think, parents setting limits on themselves and staying regulated in those difficult moments. These days, we’re having amazing experiences of co-regulation that in the early days was just really difficult to ever imagine that we would be in sync together, that we would be doing something together and enjoying it and really being synchronized, and coordinated, and watching each other, and taking initiative to repair breakdowns. This morning, [chuckle] my daughter just picked up her brother’s laundry and put it away for him, right?
Kat Lee: Wow. You like that.
Nargis Carnahan: I know. It’s the ultimate. If only I could encourage other members of the household to be like this. It’s the little things that add up to being a significant change in a family’s well-being.
Kat Lee: And we’re talking about you because you’re a mom, but let’s say a little bit about dad too because dads have special relationships with their daughters. I’m sure you’ve seen a lot of changes there as well.
Nargis Carnahan: Yeah, so those pre-diagnosis years were really hard on both of us and on our whole family, and there were times when I just really thought that we won’t get through this, we won’t get through this as a family. There was a time when my husband and I was diametrically opposed in all aspects of parenting this child and RDI brought us together because to me, it made sense intuitively and to him it made sense intellectually, and it doesn’t really make any difference of how you connect with RDI as long as you do. And it gave us both something we could actively do. We weren’t just there doing repetitions of exercises or holding flash cards out. It gave us something to do with our child which we really struggled to find. She would literally just walk around the house aimlessly and avoid us. So we really felt lost. There was nothing… We thought there was nothing we could do, and all of a sudden RDI came along, and we had a program. We had steps we could work through. We got thinking about activities and engagements in a completely different way and it’s been so helpful with our other child as well, explaining to our other child what makes a productive social engagement. So yeah, it’s had all these spillover benefits that I never could have foretold.
Kat Lee: So I know we don’t have a crystal ball of the future and we often talk about looking to the future kind of benefits, but then it can also…Too much of it can close your mind to the world, right? [inaudible] around. So as she’s growing older as our kids do, what are your concerns, what are your thoughts for her as she crosses into these teenage years?
Nargis Carnahan: Yeah, I have thought a lot about it, and as you said, it’s been lonely thinking because I found it really hard to find people to engage with me on these issues. I would worry for any child of mine in teenage years, but I think there are things that we all have trouble negotiating and grappling with as we get older, questions around what is acceptable behavior, questions around what does it mean to be assertive and where’s the line into being aggressive or engaging on productively with others. What does it mean to be bullied? How do you recognize that? How do you deal with it? And then consent. What does it mean to give consent? How do you know exactly what you’re giving consent to? How do you retract consent if you find yourself in a situation that you’re uncomfortable with? I think I can start to tease some of those issues out with her, but for somebody who really learns experientially, I fear for her being in those kinds of situations with people with all these vulnerabilities that she has, and also her difficulties with sending and receiving communication and understanding exactly what it is that people mean and what different intent they might have.
Nargis Carnahan: So it feels to me like crossing a road. I can’t let her do it until I know that for 100% certainty that she’s gonna make it across the road and so I know I go through this struggle as a parent about over-compensating or over-protecting, but then on the other hand, knowing that the negative consequences could basically destroy all the work that we’ve done up to this point. And I know that might sound dramatic, but I’ve had my own experiences of life, I’ve witnessed other people’s experiences of life, and there are a lot of things that people don’t talk… A lot of things that people have been through that they don’t talk about, and as is my natural instinct as a parent to protect her, but also knowing that those things could have grave consequences to her and her well being.
Kat Lee: Well, and I think one of the things that RDI is so encouraging about is you’ve laid this groundwork for all those things that you have just spoke about, understanding and then being able to have those conversations with her, but that’s from all that initial work that you all have really invested yourself in.
Nargis Carnahan: Yeah, there was a time, as you said, where we couldn’t even engage with her. I would say that her metacognitive skills have really improved to the point where I can think about these issues and having these discussions with her. And so it’s an exciting time on the one hand, but I do feel like, oh my goodness, I have made so many mistakes in my life. Who am I to kind of be the parent guide and to coach this young person into the world? Yeah, it’s like everything. As a parent, all you can do is your best, but it would be really nice, it would be really nice to be able to engage with people about these things. I’m not looking for answers, but I’m just looking to, I guess, wonder, do other people have the same concerns that I do? Are the worries the same?
Kat Lee: Well, you actually are right in the zone of what I wanted to ask you, which is to a mom or dad who has a sweet daughter, what would you say to that… You are also a consultant, I should tell, ’cause you’re an RDI consultant, and a parent, and you’ve been on this journey for a while now, and in RDI for some time. What would you say to that parent from what you’ve learned?
Nargis Carnahan: Yeah, I guess I would say always trust your intuition about whether a person or an environment is safe for your child. Even if you’re concerned that your child might not understand exactly what you’re saying to them about the issues in their space, just keep going, keep having those conversations. I remember it was years ago, maybe four or five years ago, that I started talking with my daughter about puberty, but that was really healthy, that was really healthy. The words that she didn’t understand then, she understands now and is familiar with, and it’s really demystified this phase of her life. Yeah, just trust your intuition. Bring your child along on their own journey. [chuckle] Don’t leave them behind, and don’t be afraid to use a big word here or there, and then to give meaning and life to it later on down the track.
Kat Lee: One of the things I think I love so much about RDI is in our work with parents and helping them guide their children, and I always say this, we’re never trying to change your child into someone else. What we wanna do is allow them to be the person, the little sweetheart, the person they are meant to be, to have the life that they are meant to have the fullest possible. And there’s a lot of talk today about people wanting to change and make the children different or somehow different people. That’s not the case at all for us. It’s about helping them be the fullest and that’s why I love you guys, your family because that’s very much what I’ve had the pleasure to see with your sweet daughter, is her coming into her own and having just… You can see that growth at her moving forward and it’s taken a lot on your part, and on her part too, don’t you think?
Nargis Carnahan: Yeah, she is an incredible… I was just telling you recently how incredible she is, how the intrinsic motivation has really kicked in for her. And yes, there’s still so much to work on, giving her confidence, giving her the confidence to make judgments and to know that when things don’t go right, it’s a learning process. All those things that we have to learn in a clumsy kind of way, RDI has given us the opportunity to be a bit more deliberate about. So yeah, she is really hard working. She really understands. I feel like with her, every day, she’s trying to be a better person and she’s really… When I think back to the times before RDI, she’s really calm, she is the calm force in our family, and so much more self-aware. So yeah, I feel a bit humbled when I watch her and when I think about how far she’s come.
Kat Lee: I knew when I hear you talk about her being the calm force, I just remember how this all started, and the reason I emphasize that to dear parents who are here with us is sometimes you can hear these stories, and I know I’m a parent as well and you can think, well, maybe that’s just how they’ve always been. We know how it was for her, her life.
Nargis Carnahan: Yeah.
Kat Lee: Anti-calm.
Kat Lee: It was just really hard on her and the family and now this is true who she is, and I can tell she wants to be, but she just couldn’t be there, and that’s the beauty of the work you’ve done.
Nargis Carnahan: Yeah, and I think to myself because I know that people look at us, people look at her and think, “Oh, that might have happened anyway. It’s just kids getting older.” But I know for a fact [chuckle] that we would still be stuck right where we are were it not for RDI. I just know that because we tried many things and over the years, we’ve tried different things, but this has been the kind of momentous force that we needed, and it required our full commitment, but for us, there was no other way. The way things were before RDI just was bringing our whole family to its knees, and in the background, we all kind of knew that that wasn’t what… She wasn’t doing any of those behaviors intentionally. She wanted to get out of that situation and so yeah, it was just no other way. [chuckle]
Kat Lee: Nargis, thank you for joining us so much.
Nargis Carnahan: My pleasure. Thank you for having me on today.
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.