Parenting is all about letting our children fly into independence, but what if your child has autism? Is that ever possible? Dr. Rachelle Sheely, co-founder of the RDI Model for remediating autism, speaks out about helping our children find their path and when it is time to let them fly on their own.
Kat Lee: A mom comes to you and says, “My child is seven, eight, nine, ten, maybe even a teenager, has been in these various programs and I either have seen some progress in various areas or I’m not seeing much progress, but my gut tells me we’re not doing anything about the autism.” What would you say to that mom?
Dr. Sheely: First of all I’d try to understand her. I would try to understand what it means when she says that, because I feel that I would have a sense of what that means, but she actually means something different. So I’d try to understand what she’s done, what her journey’s been like. I’d like to get of sense of how she feels about her child and where she thinks her child’s stuck. I’m also interested in whether she thinks she’s stuck.
Kat Lee: Well, that’s that parallel process that’s a part of everything we do. And what do you think about a mom’s … I find mom’s doubting themselves. They’ve heard so many voices and then they doubt their inside voice.
Dr. Sheely: They doubt their own inside voice and they doubt their own competence. They don’t doubt their competence with their other children, but autism is a wedge, it’s like a wedge with glue, and it drives families apart. It’s got this glue on it that kind of holds them together, I would never leave my child who has this problem, but it does do that sort of thing. And so everybody’s competence begins to waiver, and I would say that even professionals who work with families who have children with autism, their feelings of their own competence waivers as well.
Kat Lee: One of the things that I love about RDI is we go into it knowing that we can help a child reach his or her potential, but we don’t define that potential from the very beginning, we don’t define it by whatever IQ the child has been given, we don’t define it by the language that the child has, and we don’t define it by the child’s age. And so, a child whose seven or eight or nine, to me it’s not a big deal. I’ve worked with a man who is 62 and he did great. My thought was if somebody’s 62 and he can do great, seven, eight, or nine is not a problem.
Dr. Sheely: I think the problem that people run into is sometimes things have to be undone. So if you’ve take an approach which has made the part of the child’s brain that is always strong stronger and it’s not dynamically orientated, then you have to undo that. I feel like if the child has been bullied, you have to undo that. So it’s not the autism that presents the problem when a child gets to be seven, eight, nine, even a teenager, or as this man, who was 62. It’s not that, it’s the life experiences sometimes that counter what you’re doing until you sort them out.
Kat Lee: I talk to a lot of these moms and they will tell me that they’ve watched some of your brilliant work on crisis, and how parents are in crisis and they’ll say, it seems like they’re talking about right after the diagnosis, but they’ll say, “After six years, I got to be honest with you, I feel like I’m still in crisis.” Why do you think that is?
Dr. Sheely: Well, I think that when I’ve seen families that are in crisis such a long time after the diagnosis, I feel that they’re still struggling with the same issues that they had with their child when they started. They haven’t seen the growth, they haven’t seen the child take on that growth seeking trajectory that we want to see. So if they don’t see that, then everything they do is like, as we say, pulling teeth. They have to keep teaching the child every thing. In RDI, what we see is that the children do begin to take on their own learning and so it’s not as complicated to reach them.
Dr. Sheely: In the beginning everything is one-sided, the parents are doing all the work. But when you start with something very basic like a physical regulatory pattern and the child gets a sense of doing her own part to keep it going, to keep it fluid, and then you move from there to everything it means to be human, then you see that everybody’s doing better. But when you never have any of that, then it’s always, “What can I make them do? What can I get them to do?” It’s exhausting and so the parents don’t have the opportunity to step back and say, “Okay, we’ve reached this milestone, what’s the big picture now?”
Dr. Sheely: That big picture doesn’t get put into place right away, because all of the … they’re always putting out those small fires. And so the crisis, sometimes it even gets worse.
Kat Lee: You know, you talked about the history of the child, or student, or adult, and having to sort through that, and it occurred to me when you were just talking that there’s also a history with whoever their guides were, their parents, that you have to sort through, I suppose.
Dr. Sheely: You do have to sort through it, and it’s not a quick fix. I mean, it’s not a quick fix for RDI, it’s not a quick fix for anyone. Because you’re raising a child, you’re developing a child’s mind. And so you have to be in it for the long haul. You have to make the commitment to take the small steps that need to be taken to reach that edge, and then once you’ve reached that edge, there’s a new edge, but you have to keep going there. You never can rest on your laurels, sometimes with typically developing kids people say, “My mother told me I just raised myself,” but sometimes that actually happens.
Dr. Sheely: I’m not saying it’s the best way, I’m not saying it’s a great idea, but that does happen. That doesn’t happen with autism. If the parents aren’t actively guiding the child, and thinking about it all the time, and staying one step ahead of where the child is developmentally, the child’s not gonna get there.
Kat Lee: And so I can see why a child, or student’s getting older, guides have developed patterns of thinking, too, and ways of thinking about things that we actually have to go and undo for them. Which, I don’t mean to say negatively, because I think it’s a great thing about what we do.
Dr. Sheely: I think another thing is that depending on how emotionally charged the family life is, sometimes the first thing you have to do is just clear it. You just have to get some space where some normalcy, where the family can feel like there’s some normalcy here. Particularly if that emotion … being that emotionally charged has to do with aggressive, or negative behaviors. Negative things being said, if you’ve got a child who’s very controlling, and now the family’s walking on tip toes around them, if you’re gonna do RDI, you have to be willing to challenge a child.
Dr. Sheely: And if you’re afraid to challenge the child, then you have to clear out all this smoke. Where’s the child underneath this that is ready to be challenged, and wants to be challenged, and is motivated to be challenged?
Kat Lee: You know, that is beautiful. It makes me think about some conversations I’ve had with parents, and professionals, about the child that is very controlling, and people are walking on eggshells, and I say, “It’s somewhat of a façade.” Really, they want, inside, to be guided. They want help, but in the face of all the obstacles they’re facing, this is the way they get by, and it’s really hard sometimes for people to understand, ’cause it’s not way it looks, you know? And so not everything is the way it looks on the outside.
Dr. Sheely: And I think another thing, too, is that families have learned to cope with the autism, and I say all the time to parents, “Where would your child be if you hadn’t figured this out?” Because I’m constantly amazed at the resourcefulness of the parents I see. But I think there’s a hard thing, too, and the hard part of it is that one of the thing parents have figured out is the support that a child needs, to let’s say get out the door and go to school, or the support a child needs to get… So we can go through all levels of support like this, but the problem is that even though support is a good thing, at some point it becomes an overcompensation. And if you don’t understand what that overcompensation looks like, then you get stuck, and so what we have to help the parents do is realize that the child may actually be in a place where they don’t need to overcompensate, but that basic anxiety that kicked in doesn’t always go away, and so there’s the fear that, “If I don’t help him, what’s gonna happen?”
Dr. Sheely: So the overcompensation, I feel with teenagers, and young adults, that the biggest thing I often have to help parents with is to stop overcompensating. If the child is ready to take off, we’ve given him the wings, he’s ready to fly, time to fly.