Keeping Your Family Strong After an Autism Diagnosis
In this episode of Autism: A New Perspective, host Katherine Lee talks with Dr. Rachelle Sheely about autism, siblings and RDI®.
After an autism diagnosis, it’s important to not let your family become an “autism family.”
Devoting too much time to one child is a mistake. Instead, make sure that all of your children have their own unique and important roles in the family.
Autism: A New Perspective is Available on iTunes!
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 encourage you that growth for your child and your family is possible. I’m Kat Lee, and in this week’s podcast, Dr. Sheely talks to us about autism, siblings, and RDI. Let’s listen in.
Kat Lee: Dr. Sheely, at the risk of repeating myself, which I certainly do on regular occasion, all those 28 years ago now when my son went to a study center and the doctor talked to us about a diagnosis, I always remember, just like it was yesterday, him saying there’s nothing you can do for him. You need to focus on your daughter and make sure that she gets attention because other than maybe putting him in our little school when he’s older, there’s really nothing to be done for him. And that’s almost an exact quote of what we were told. And I can remember saying to him, that just can’t be true. Isn’t that funny that that was just out my mouth, but one thing I did know, and I like to look for the positive, even those negative moments, is he was right that we needed to make sure that our daughter received what she needed to receive from us, even though we knew what our son was going to need from us. So I think this is such a relevant heart issue for parents, loving all their children and wanting to make sure that everything’s the best for all of them. I wonder about your experience with this.
Dr. Sheely: I think the experience isn’t that different when autism is involved. I have three grandchildren, two children, and I remember from the very beginning trying to be aware of how I was balancing their relationships with each other. I was giving them time to work out that out and how I had a relationship with each not with just them as two children. And so I think if we can think about it that way, I don’t think it’s quite as hard to think about. Although what makes it hard is that if the guiding relationship isn’t in place, you find yourself overcompensating or running interference when actually what you wanna do is you want to see the children work out their relationship.
Kat Lee: I think those are such important words and really not spoken for them to work out their relationship. How do you communicate that to parents? I love what you said about your own experience with your children and with your grandchildren, but there’s these kind of, I don’t know, a veil goes over your eye sometimes when one of your children seems more vulnerable, but really it’s something to be concerned about for all of our children.
Dr. Sheely: Well, there is the vulnerability, and that’s why I think we have to give extra thought to it. With the children that I see, typically, the siblings of the child with autism wanna be able to play with the child, they wanna be able to do things with the child but they see that their overtures are not understood or even rejected, they don’t know what to do. So if you think about RDI, what we believe is that we don’t do things in a vacuum. We do things within the relationship, within the structure of our families. And if we can keep that in mind and if we can… If everyone can have his place, if everyone can have a role and if we can help that happen, it’s not as hard as it seems.
Kat Lee: How do you guide parents? How do you talk them and in helping them understand the value of that sibling relationship? Because I do think that it can get… I don’t know if the word is murky or a little confusing even once you realize that one of your children has specific vulnerabilities of any kind.
Dr. Sheely: Well, I think the first thing that I always, almost always say to parents is, I don’t want you to become an autism family, I want you to just be a family. And there is a tendency when you hear the word autism to go out and try to do everything and to read everything. And that is a mistake because now you’re devoting all of your time not to yourself, not to your husband, not to the other children, but this one child. And you’re trying to get the world to make it easier for that child, which we do. We want the world to be as easy for him or as hard for him as it is for everybody else. We want it to be natural. I think it’s important for parents to understand that if they can put roles together where all of the children have a role that makes sense to them, they’re not going to run into the problems of sibling rivalry or sibling jealousy.
Dr. Sheely: What I know about generalization, what I know about working with children and then having those children go out and be independent is that we have to do things in a real life setting. So looking first at the attunement, looking at the attunement between the child with autism and the parent, we have to make sure that’s intact, and if it isn’t, we start there. But we don’t have to just work on the attunement with the parent and child, we can work on attunement with the siblings. What we don’t want, we don’t want everybody in the family to suddenly feel like they are therapists, and everybody has to be a therapist. We don’t want the home to become a therapy center, we want the home to become a home where people love each other and do things together and everybody supports the family, everybody has a job. So the job of a 16-year-old who is gonna resist it, of course, but the job of a 16-year-old who does not have autism is gonna be different from the job of a 4-year-old.
Dr. Sheely: However, if the 16-year-old’s job is still taking out the trash because nobody’s moved up to do that job yet, they can take the trash out together. Come on, Joe, let’s take the trash out. They each take the end of the recycling basket and they take it out to the curb. What’s going on here? The child with autism feels important. He feels like he’s a person who is important to his family and he has a role in his family, and the role is an important role. Well, they’re walking together, there’s a regulatory pattern. It’s just built in to carrying the recycling bin out together. We have three recycling bins and I was watching my husband today take the recycling bin out with our 3-year-old granddaughter, she loved it. She was taking it out. He could have picked it up and carried it, but they were in a regulatory pattern and she felt very proud of herself for helping take it out. So we wanna look at what is the capability of the child with autism? And we wanna build in roles and responsibilities that make him feel like he’s a productive person in his family. And then, we wanna add the siblings in a way that’s natural. We don’t want them doing therapeutic things with the child, but we wanna think, what might he be doing with this child if the child didn’t have autism? And can we build that into a role around an objective that we’re working on?
Kat Lee: What I love about everything you just said is it’s about the family. It’s one of the things that attracted me as a parent to the work you were doing, Dr. Sheely, is it was about the family. And you talk about restoring the family. And I think that, at least for some, I know for myself, it was important to hear that that restoration needed to take place, that there were things not happening. And I always try to remember that so many times that when parents are trying to do best by their children, that they haven’t had children before. They’re just figuring it out, period. We know, I know currently new parents and just have babies, and they’re trying to figure it all out. The whole journey is trying to figure it out. So when you have something told you, quote unquote, like my story by a doctor, it can be very confusing and suddenly you don’t even know that you have lost something in your family.
Dr. Sheely: Yeah, I think the restoration of the guiding relationship with the parent shaves away some of the anxiety. And I don’t think it shaves away all of the anxiety until the child’s really doing well. I often say to parents, there’s something I could say to you right now to make you feel better, I would say it in a heartbeat. But you’re not gonna feel better until you see the growth in your child that you are responsible for creating, just like your other children. So we’re just gonna get busy. [laughter] And so keeping that in mind, we can see that if the parent’s thinking, if the parent begins to understand Vygotsky’s work in the Zone of Proximal Development, understands what the guiding relationship looks like. What we’re asking them to do with the child who has autism, it’s something that’s good for everybody. It’s good for every child. We’re not doing anything weird, we’re just doing what we’ve studied, happens in cultures throughout the world. So if we can keep that in mind, the family can actually become a stronger family.
Dr. Sheely: And everybody has a role, everybody has a place, including the parents. I had a mother write down her goal for RDI was she wanted to go get her nails done. And I said, I do too. [laughter] So this is legitimate. This is legitimate.
Kat Lee: Yes, absolutely. We were laughing because we know that’s true. And that’s a really great goal for you to share with us because that seems like a little thing and it’s a little big thing, a little big thing. You and I have talked many times over the years about crisis and even more recently about re-crisis. I think one of the crisis is this loss of feeling as a family. And that’s what I love about what we do in RDI is that restoration. Because without that, I think it does create crisis.
Dr. Sheely: I feel like there’s this big plan for all of us, and the plan is in the families that are created. And we’re all different and we all do some things really well, and there are things that we bomb out on, but the family is where we find the love and security to keep moving forward, even when it gets hard, it’s where we come back to regroup. And where somebody says to us, you know what? It’s gonna be okay. Let me help you. Do you want me to help you? Say, no, that’s okay too. But if we lose, if we lose that stability that the family provides for us, we get into situations that don’t make any sense and we find ourselves manufacturing weird or odd things to keep going. We don’t want that. We want the families to work the way they were intended to work.
Dr. Sheely: A couple of parents, kids, siblings, trying things out, getting it wrong, losing our tempers, not losing our tempers. All of those things are part of who we are. And I think if we can rejoice in that, and if we can see ourselves as creating this wonderful mind in a child who has a mind but it hasn’t come into its fullness yet. If we can see our role in doing that and we can see that the support of the whole family, creates minds for all the children. We’re creating minds for everybody. And see, kinda see that as what we’re supposed to do. I think it’s okay to take children to pottery lessons. I think it’s more important to have a sense of how we help them grow, take on their own learning, and we give them minds that are motivated to become whatever it is they can be.
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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