In April’s special episode of the RDIconnect podcast series, Dr. Rachelle Sheely and Kat Lee talk about how to move forward after an autism diagnosis in the family.
Kat Lee: So we’re talking today about what is autism, but most specifically, how parents who have a child who’s newly diagnosed feel, because that’s like the first question in their minds, what is autism? Is it what I see on TV or in a picture or in a documentary I saw? I think it’s really confusing, and maybe even more so now because there’s so many social media sources for information that can be confusing. So I thought it was helpful to think about, what is autism and how do those families feel when they get that diagnosis with so much information coming up too, and a lot of the things that they’re told are not autism. That’s what I kind of like to think of too.
Dr. Sheely: So we have parents who get the diagnosis, and they’re not really told what that means, so they go to what they know. They go to Temple Grandin. Oh, well she’s got a PhD. Look how successful she is. Stephen Shore, well, he’s married. He’s great. That’s easy. Or they go to Rain Man and they say, “Ooh.” Or you know, they go to somebody like Stephen, the human camera, and so they have these ideas of people who are out in the forefront when it comes to the diagnosis, and those people all have the diagnosis, but for the most part, the kids are all very different and they each come with his or her own set of capabilities and struggles, things that will be obstacles to them, things that will be challenges to them.
Dr. Sheely: I think the important thing for anybody who is either giving the diagnosis or working with a newly diagnosed family is to help parents know that there’s a beginning point, and that that beginning point is almost always the same. First of all, want to know what your child’s potential is. We want to know what kind of scaffolding or support your child needs to become who he’s going to become. The other thing that we want to know is, how do we re-establish the guiding relationship? And that sometimes gets confused with attachment, or does my child love me? That’s not what we’re talking about. We’re talking about children who don’t look to their parents for guiding in the way typically developing children do, like, “What are you going to show me today, mommy?” No, it’s like, “If you force me to do it, I’ll do it, but I’ve got my own set of things that are of interest to me.”
Dr. Sheely: And so by re-establishing this guiding relationship, we’re actually normalizing the family for the family who has a child on the spectrum. There’s nothing I like better when a family says to me, “You know, my family seems normal.” It’s like, “Yes.”
Kat Lee: That really speaks to me because when my son was diagnosed at two, aside from kind of the processing shock of the thing, one of my very first concerns at the top of my list was for my family. For him, of course, as my baby, but my other baby who was four, my marriage, and the family. And so it’s frightening. You don’t know what’s going to happen to your family, and I think that’s one of the things that’s so beautiful. And like you just said, when they tell you that my family feels normal, I think that’s what they’re talking about.
Dr. Sheely: And I think that’s the right question to ask, because what is going to happen to my family? And so frequently, we have just keyed in on this child with autism and what’s going to happen to the child with Autism, that we have children, we have siblings falling by the wayside, very resentful because the child with the problem got the attention. The child with the problem got the affection. The child with the problem got the family’s financial resources, and they didn’t have a problem. I even had a boy one time who said, “I get to go talk to Rachelle.” I mean, his idea of equal time was he was able to come see me, and he came in, and he laid down on the sofa. He had been watching a Freud movie I guess. He said, “I had a dream last night,” and of course I got into it, and I said, “What was it?”
Kat Lee: Bless his heart.
Dr. Sheely: Exactly. But it is the right question, because if we don’t care enough about the relationship between the husband and wife, if we don’t care enough about the siblings, then we have families that begin to falter and fall apart.
Kat Lee: Well, and I think the other thing that tends to fall by the wayside, I don’t know how else to say it, for parents, is all concern for themselves. And if you as a parent suddenly become the least important part of your life, then you can scaffold your children. I mean, that’s the hard thing for parents. It’s kind of the process, the pain point, and then the, “Okay, forget about me.” And of course, that’s really the worst thing that can happen because you’re the child’s everything. Guide, yes. Their world. So if you are falling apart and not taking care of yourself because you’re trying to take care of them, and so I just think it’s this cycle that starts pretty quickly.
Dr. Sheely: You know, we talk about parents who have children on the spectrum, but we also have to realize that this happens to people who just have children, where all the sudden you’re doing lots of things for your children and you’re carpooling and you’re going to pottery lessons and French lessons and ice skating lessons, and now you’re in charge of the Boy Scouts, and so you have all of this stuff going on, and somewhere in that mix you are there, but your role and how you see yourself is a procure of services for your children. That happens with typically developing children as well.
Dr. Sheely: So when we talk about … In RDI, we spend so much time helping parents think about, who are you? What’s your dream? What dream did you let go? Let’s find that dream. Let’s not only find the dream for your child, let’s find the dream for you. When was the last time you and your husband went out, or when was the last time you did something that you really enjoy? Not everybody likes to go out. Some people just like to eat popcorn and watch YouTube, which is … That’s good too, but we have to find out, what is it that is going to make you feel you are 100% in this game of life, this game we call life, with your husband, with your other children, and with the child with autism?
Dr. Sheely: We know in the beginning it takes more time because you are re-establishing something that the autism has robbed you of. But you know, it doesn’t take forever to get that process started, and at that point, you need to go get your nails done.
Kat Lee: Oh, that sounds lovely. I was just thinking about it’s … I don’t know if I want to call it a rediscovery of you for parents. I guess, because they probably don’t have it forgotten … Maybe they have, I don’t know … who they were B.A., as I call Before Autism, but it gets hidden.
Dr. Sheely: It gets hidden, and depending on what point in your life you had children, what point in your life you had a child diagnosed, I think you can have a couple of reset buttons that you need to be aware of, and one of those reset buttons might be a result of the panic you’re feeling, and then that gets triggered by the posttraumatic stress disorder, so you’ve got that reset button, and then there’s the reset button about, okay, I’m going to devote my life to making my child okay, which you can’t do if you’re not okay. It’s a very complicated process.
Kat Lee: It is. That’s what I love about RDI. I was telling somebody the other day that it’s what I love about it. It’s about everyone. The child’s life is about everyone in his or her life, and so whatever we’re doing to help them should be about everyone in his or her life, because that’s how they can really get the help they need. And you know, so many things end up just being about the child.
Dr. Sheely: Sorry, I interrupted. You know, Katherine, it’s also about the people who choose to work with families dealing with autism. I remember early on as a very young clinician that I wanted so much to do this, I was becoming obsessed by it. And so just as parents get triggered, I was getting triggered as well, because every child is different, and I was trying to figure it out, and Steve and I were also trying to figure out, what is RDI? What is that going to mean to our families?
Dr. Sheely: I realized that when I’m telling parents they have to take care of themselves, consultants have to take care of themselves too. And a healthy system means that everybody in the system is healthy, including the people who are consulting the people who are guiding and the people who have autism.
Kat Lee: When you first meet a parent with a newly diagnosed child, no matter … I guess I’ll say whatever age that may be, do they communicate to you the thing they’re most fearful of? Is it not having a connection or relationship with their child, or is there any one thing you hear the most?
Dr. Sheely: Yes. The thing that I hear the most is, “I just want him to be happy,” and I mean, who doesn’t want to be happy and who doesn’t want his or her child to be happy? And almost from the very beginning, I reframe that and say, “Well, I would like for your child to be happy too, but I want your child to be independent as an adult. I don’t know what form that will take because I don’t know your child’s potential right now, but I feel like we need to be focused on the quality of life and independence as an adult.” What’s interesting about that, when I say it, it always resonates, and it’s as if it’s the one thing they were afraid to say.
Kat Lee: Huh. So they forward think, so to speak, into the future, and are really not saying it out loud.
Dr. Sheely: Yeah. I think so.
Kat Lee: I wondered if parents are suffering because of the relationship they don’t feel like they have, if that makes senses. And maybe, I guess they have the relationship, but do they talk to you about, “The relationship we have doesn’t feel right to me”? I wonder how much a concern that is.
Dr. Sheely: Yeah. I think it is a concern, and if the child happens to be an only child or a first child, sometimes they don’t realize what isn’t there because they’ve never experienced it. So they’re thinking, “Well, this is the way parenting is. It’s not exactly what I thought it would be, but this is the way it is.” Then they have maybe a second or a third, or in Texas, the seventh or eighth child, and they think, “Well, that’s not the way it is.”
Kat Lee: Right, of course.
Dr. Sheely: So then they go back, and now the concern is, “I feel like my relationship with this child is different from the relationship I have with my other child or my other children,” and giving parents the hope that that guiding relationship can be put into place goes a long way to getting them going down the right path to parent this child.
Kat Lee: A lot of parents talk to me about … I hate to say feeling rejected, or almost like it’s their fault. Might be both, which we can understand that it could feel like a rejection by their child, but also really feeling that somehow they did something or haven’t done something right. And I will even hear that from parents who maybe have gotten a diagnosis before and seeking help, like join a parents’ group, and maybe they’ve seen a few children, and this child’s better off than my child, or what have you, so the fault is even increased. It’s just so not their fault.
Dr. Sheely: It’s not their fault. But to be honest with you, Katherine, we’re both parents, and we know when we see our children struggle, we start saying, “What could I have done differently? What did I do to cause this? What’s going on?” We can reassure people, but I actually say the same thing to every parent I see. If I could tell you right now that everything was going to be okay and you would believe me, I would say it, but you won’t believe me until your child really is doing better, so we have to get started because you have to be able to tell yourself that.
Dr. Sheely: And certainly, we can support each other, and when we volunteer with groups and we meet parents whose child has been diagnosed for the just early on. We do want to encourage them, and we want to tell them it’s not a blind hope we’re offering. It’s not a false hope we’re offering. We’re offering you hope, and we have a track record now, and we can show you people who are doing well, who are no different from your child because I have the whole range of people who are doing better: classically autistic, high functioning, you get the whole spectrum. But the parents have to begin to feel that connection before they will accept, before they have the hope for themselves. And sometimes all they have to hang onto is we say, “Be hopeful.”