Parents, there can be an overwhleming sense of grief when you first receive an autism diagnosis for your child. It can be hard to know what to do next; how do you move forward with a life of growth with your family and step out of the crisis that often comes with autism.
Dr. Sheely, the co-founder of the RDI model for remediating autism, talks about how you can not let your dreams of your child go just because of a diagnosis. your child is still your child and you still have the ability to be a parent! Listen now.
Dr. Sheely: It’s been interesting to me to talk to parents at every level of the diagnosis, pre-diagnosis, diagnosis, and post-diagnosis, and what I have found over the years is that nobody wants to hear the word autism. It’s not as if they can’t wait to hear it. There is relief for some people when they hear it because at least they have a name for it, but one of the major problems that parents face when they get the diagnosis of autism is what do I do now. There’s a lot of information out there, a lot of people telling them what they should do, and it may or may not apply to their children.
By and large, I would say that most parents have had an experience where, because their child wasn’t a good apprentice to them, wasn’t a good apprentice in the guiding relationship, that they didn’t know what to do, and they kept trying and trying, and no matter what they did, it wasn’t working. It was not only a trauma. It was a crisis, and that just seems to envelope everything that happens from that point on with the parents unless there’s a way to get out of the crisis, and one way we know to get out of the crisis is to restore that guiding relationship so the child is bringing more to the table. It sounds like such a simple thing to say, although it seems glib when I say it, but the truth is that you can’t guide a child who’s not a good apprentice to you.
Kat: I think it’s the most important thing, what you say, and it’s interesting you said, “It sounded glib,” because I agree when I say it. I feel like it sounds that way, and, yet, sometimes, what are the simplest things to say are the most important things, and the parents will report to me that their children are going to school or to a clinic, and, yet, they have no peace in their home, either literally or in their minds. They, in their home, have not a sense of family or feel like they’ve almost lost a family member with how everyone’s interacting with their child, and how could that … Dr. Sheely, how could that not be a crisis?
Dr. Sheely: I think it is a crisis, and we watch parents doing all the right things, but because their child is not growth seeking, but stages maintaining, as we know from the literature, that’s what happens, because that’s happening with the child, then the parents are stuck trying to get the child to do things. Finally, so exciting, they figured out something to connect with the child. Maybe they’re tickling the child. Maybe they’re throwing the child in the air. Maybe they’re just doing any kind of thing that works so they can see that smile, and because, for most of our parents, they have a background of tantrums, they don’t want to rock the boat, and, unfortunately, what happens at that point is that they’re ready to get out crisis.
Excuse me. Sorry. They’re ready to get out of crisis, and they’re ready to move on, but they are so afraid of rocking the boat and incurring those tantrums again that they get stuck, and so the trauma and the crisis follow them even when intellectually they’re saying, “I wanna move forward. This is what I wanna do.”
Kat: I think the whole eggshell walking in the home, which can happen really fast when you, as a Mommy or Daddy, you start seeing what causes those eggshells to start exploding. Life just becomes like that. Don’t cough or don’t laugh or don’t set that object in that place or don’t move that object from that place. We could list hundreds of examples, but that creates a series of eggshells, and I ask folks to just take some eggs and set them around the living room and then have to go to the … or between your bed and the bathroom, and have to go through that eggshell mine at night or something, and you’ll feel how parents are living.
Dr. Sheely: That visual, to me, is really important. I hadn’t thought about that, but I know how important it is to know, to really recognize that, yes, you want to do it, but you’ve been traumatized, and so that trauma gets triggered every time you think about upsetting the applecart or moving forward or when we talk about adjust noticeable difference, which we know works with our children because they, “I can’t do that.”
Another thing that occurs quite frequently is we ask parents to dream. “What is it you want for your child?” It’s very hard for parents to go there because when they were expecting the child, they had a dream for that child, and when they heard the word autism, that dream disappeared, and in RDI, what we say to parents is, “Dream again. What’s your dream? Where do you wanna go?” That, in and of itself, having a goal again triggers that feeling of crisis and the trauma that was experienced very early on.
Kat: A goal is like with any child, means you’re not going to reach goals. I always use the phrase, “The children arise to the lowest expectation and also rise to no goals.” I think that’s all children. That’s just parenting, and when that’s cut off from parents, even the hope of having goals or having a dream, and I love that you use the word dream, not being able to do that, I think they go into a crisis they don’t even realize they’re in. That’s one of the interesting things to me when I talk to parents about crisis. They actually haven’t had that identified for them, that that’s what’s going on.
Dr. Sheely: They haven’t had it identified, and they haven’t maybe even thought about it, but one of the things that I have noticed, Catherine, and I don’t know if you’ve noticed it, as well, is that we can see children who are doing well, and I’ll have a parent say, “No, my life feels normal.” It’s my favorite thing to hear. “My life feels normal.” Then something happens, and when that something happens, all of a sudden, it’s autism. Oh, it’s autism, when actually maybe it’s just typical development.
For example, if your child tells you he’s not taking out the garbage because he wants to play golf with his friends, that’s not autism. That’s a mouthy teenage boy, but it’s interesting how fragile we all are when we’ve struggled with children who have developmental differences.
Kat: Well, everything becomes seen through those lenses, and it’s interesting that that can happen to people who are working with the children, too, that things start being seen through those lenses, and then those comments come back around to the parents, and so then they start seeing, and it’s a circular … Meanwhile, there’s a child who’s actually acting typically, but the feedback they’re getting is that that’s not “normal”.
Dr. Sheely: I think it’s really important, as consultants who are working with parents who have experienced a crisis, that none of us would ever want to experience or want to know about, but yet our parents are experiencing this. I think it’s really important for us to realize that there is a parallel process that helps us all get out of that crisis, and the way I see it is that we have children who are very vulnerable, but we have parents who are very vulnerable, too, and if we push the parents to do things with their children too quickly, we can increase the feeling of crisis that that parent has. However, if we can think about the just noticeable differences that are important in our work with children and we can actually apply that to the parents, just noticeable differences, we’re going to start with you where you are, we know you’re capable, and we’re going to help you feel the competence as you move along, we’ll see that when the challenges come, the parents are ready to take those challenges on, and the crisis become, I think, inversely proportionate to the normalcy.
Kat: I love that you talk about just noticeable differences, and one of the things as a parent that strikes me is those just noticeable differences we think about our children and that just noticeable difference may not seem like a just noticeable difference, but actually it’s like that for parents, too. They need just noticeable differences.
Dr.Dr. Sheely: They do need just noticeable differences, and they also need help with their memories. We know we talk a lot about our children and the importance of developing the kind of memories that help them think about the future. If I’m seeing a child who’s competent in one area and I help that child think about the future and what that future looks like and how that memory can be used, we know that that child is in a better position to be independent at some age, but it’s the same thing with parents. If we can help the parents see these same steps in their work with their child, we’ll see that they also are ready for the independence.
Kat: When parents are going through not having this wonderful information that you and I are talking about and I first talk to them about crisis, a lot of times, I will see parents be like, “Well, it’s not about me. It’s about my child, so even if I’m suffering, I don’t really need to talk about that,” and I think what you talk about, about that parallel process, that the state that they are in as mommies and daddies is affecting your children is so important.
Dr. Sheely: It’s very important. It’s very important for the same reason. Just because as we develop those memories with children and they become independent, the parents begin to catalog their own memories, and their own memories lead them to this feeling of I’m going to be able to do this. I won’t always need a consultant.
Kat: I think that’s big because I think parents hear a lot from the very beginning, whether the diagnosis is two, five, ten, fifteen, that they can’t do, that they need someone else, that that’s not a skillset they have, and I have been known to say, and hopefully don’t sound too snarky when I say it, “So the parents don’t have a skillset to be mommies and daddies? Because I think they do.” I think they do.
Dr. Sheely: Yeah, I think they do, too. It’s such an important point that you make because our parents are parents, and I see children so many times who are just ready to take off, and I often think, “Where would this child be if this parent hadn’t figured out what she has figured, what he has figured out?” It’s a pretty amazing process, when you think about how long it’s taken us to figure out how to help parents and how many parents already come to the table with some well designed, well thought out ideas.
Kat: They do, and how we remind them of something … I always say, “You know …” I always say, “You know this is true if you think about it, that no one knows your child like you do. No one. No one,” and they’ll be like, “Well, that’s right. I try to tell people this and such about little so and so, but then they say this,” and I’m like, “You know. You do.”
Dr. Sheely: Katherine, I’m reminded about my own thoughts early on, 20 years ago, and, remember, I started working with autism when the diagnosis was 1 in 10,000. I remember talking to parents and believing that, from the very beginning, something was different, and a lot of parents actually said that. I think probably because their more recent memory was speaking to them, but when I know and what we know from the research now is that it really isn’t different before six months of age, and so parents are feeling like everything’s okay. They’re getting the smiles. They’re getting the attention, and then all of a sudden, something happens at six months, which I think reinforces for them, “I’ve done something wrong. What should I do?” They start grasping at straws because they don’t have a diagnosis. They don’t know what’s going on, and it just increases that crisis for them.