Growth is possible into adulthood.
As children with autism grow up and inch closer to adulthood, it’s common for parents to feel that there hasn’t been enough progress and to worry that their children will not become fully self-sufficient adults.
What if we didn’t do enough?
What if we went in the wrong direction?
What if independence isn’t possible?
But, as Dr. Rachelle Sheely shares in this podcast, the question isn’t “what if?,” but “what next?”
Kat Lee: Welcome back to ASD, 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 podcast, Dr. Sheely talks to us about the tendency to shy away from talking about teens, adults and autism. Let’s listen in.
Dr. Rachelle Sheely: I think the tendency comes from concerns that maybe it’s not going to be okay, maybe I don’t know what to do, maybe there won’t be independence. And so people put their energy into children when they’re younger, and then as they get older, everybody’s tired. And of course, this is the time when you bear the fruit of what you’ve been working on all these years, and it’s a great time, but it’s also one of those times when… Well, we’re almost at the age of independence. How do I make that final push?
Kat Lee: Gosh, it just touches my heart to think about parents wondering if there’s anything they can do. I do find myself hearing from parents who up until that point, a lot has been done, a lot has been done in clinics, a lot has been done in school, but they come to a point and it’s just… They’re realizing it’s just not enough. I wonder why that is. Why are the parents seeing it’s not enough?
Dr. Sheely: Well, maybe it isn’t enough. Maybe what they’re feeling is, either maybe it’s not enough, or maybe we went in a direction, in one direction, I wish I had gone in another direction, but whether it’s enough or not is not the question that needs to be asked. I think the question that needs to be asked is, really “what’s next?” And that it’s not over. You don’t have to have everything in place. The mind isn’t a hard-boiled egg, and so we can continue to grow the person, but at the point… Katherine, at the point you get to the teenage years, the one thing that we hope is in place is the motivation to take on your own learning, the motivation to be independent. Because if the parents are still feeling like they have to over compensate, that’s when I think the confusion and the fear set in for parents.
Kat Lee: I think your identification of fear is correct. I’ve talked to new parents, and when I say new, I mean new to me, and they have fear and sadness at that point because so much has been done, but they’re at a point where they can see where their child might have been or should be, or fearful they’re not going to be, but they’re also sad. Do you find that?
Dr. Sheely: I find a sadness, but Katherine, I always see that sadness. I think when parents get the diagnosis, there’s a sadness, and we talk about trauma, but what I really see is a sadness for the child. And is my child going to have a happy life, is my child going to have friends, is my child going to have a job? And they see that the road ahead can be hard. And we would all do anything for our children. And not only is it going to be hard, but, will I know what to do? So, it is sad. There’s a sadness.
Kat Lee: So, would you say parents think it’s too late at teenage, because I love what you say that the brain is not a hard-boiled egg. And for a long time we’ve been told it is, but it’s boiled by five or whatever, I remember reading that somewhere, like if it’s not by five, you’re done. SoI can imagine if they’ve heard those voices, by the time your child is 16, 17, 18, 20, you’re like, not only are they done, they’re fried, there’s nothing that can be done. And you are always so hopeful and it’s not pie in the sky hopeful, as I’ve heard you quoted before, it’s real hope.
Dr. Sheely: It is real hope, and part of that real hope comes from my own experience in working… Beginning to work with adults who are recently diagnosed. And I know I’ve said this before, but I worked with a 62-year-old man who had never been diagnosed, and his motivation, his motivation to take on his own learning, his motivation to figure things out. It was amazing to see, and it was amazing to see what he was able to do and how he actually turned his life around just from knowing what was going on. So, it was wonderful to work with him. So it’s not pie in the sky hope, it comes from the work I’ve done and what I’ve seen adults on the spectrum accomplish.
Kat Lee: So, speaking with parents now who are realizing, if we wanna phrase it, it’s not enough, no matter how old their child is, whether they’re 16, 20 or 30, taking that aside, what would you say to that parent who feels like they need to start something else?
Dr. Sheely: I would suggest that they think carefully about what they wanna start, and so don’t just do things, don’t just go swim with the dolphins. It would be fun. I would like to swim with the dolphins, you would like to, too. We’d like to swim with the dolphins, but think specifically with your child about what your child wants, what the goals are. This is not a time when you start doing things for your child, you don’t want to over compensate, so conversations on goal setting, where would you like to be in five years? What would you like for your life to look like in five years? And you know, there’s a whole range of… There’s just a really lovely range of things available. I know that one of our consultants, Macy, is working on how to help people become independent in the workforce.
Dr. Sheely: So, I can always recommend Macy, but I know that the Texas Workforce Commission has people who can coach people through jobs. But not everybody needs that. Not everybody needs that. I put it out there because I don’t think it’s a problem if you do need it, if you do need it, great. It’s available for you. But looking for a job requires an ability to think dynamically. And Katherine, you know in RDI, we talk about thinking dynamically from the minute someone walks in the door, we have to learn to think dynamically, and going for a job interview in these times means that you’re going to hear, no, a lot more than you hear yes. So you have to be prepared for that, “No, thank you for coming in. But no.” You have to be prepared for your resume being thrown in the circular file.
Dr. Sheely: This is just a fact of life. I don’t care whether you are dealing with autism or you’re dealing with just getting your college degree. It’s usually no. So, having that kind of resilience, raising our children from the very beginning where they actually deal with failure. And I don’t mean the kind of failure, like sink or swim, but those small failures where it doesn’t quite go right, but you’ve become resilient enough to figure out what to do. Those are all the underpinnings of what helps people get through an interview. And as one boy, I used to say… He used to say, “Well, every no is one step closer to a yes.”
Kat Lee: That is so encouraging, I need to hear that. Everybody needs to hear that, actually.
Dr. Sheely: Yeah, and so realising that when you go out there and look for a job, you’re going to hear a lot of no’s, be prepared for it. What are you gonna say to yourself? Where are you gonna go next? And I think that’s one of the really important things that we have to think about.
Kat Lee: Well, I know you’re contacted by parents and young adults, both parents of young adults and adults themselves, I am too. When they want to work with you in RDI, where do you start? I know everyone’s an individual, but when you’re talking to those parents, how do you start with them, move them forward? What do you say?
Dr. Sheely: Well, first of all, I try to figure out who’s stuck and where they’re stuck. Because you can be really doing well as a person who has autism, as a parent who has someone with autism, and then for some reason you feel stuck, so I wanna analyze that stuck place. And I also wanna analyze what kind of support is actually needed. I don’t wanna throw the kitchen sink at someone who doesn’t need the kitchen sink. I wanna know, what do you need? And then I wanna begin to build up the resilience. I wanna begin to build up that dynamic ability to look at a world that’s unfamiliar, have faith that you can move through it and do it, and to kind of figure out… But the first thing that I do is figure out where do you start because, you know, everybody’s different, everybody’s unique.
Kat Lee: And everybody’s unique as a parent, and the parent’s child, and I love the parallel process that you have really designed for RDI, that we look at everyone and that’s a positive thing.
Dr. Sheely: It’s an exciting time. And I think it’s also a scary time because it can be a time for anybody, right now, of feeling, is my life ever going to be better? And so we wanna watch for signs that someone isn’t handling it well. And then part of the support looks a little bit different, it’s not the support about, “This is how you fill out an application,” but it’s the support of, “I wanna make sure you’re okay.”
Kat Lee: Meeting everybody where they are, but one thing I have seen is when I talk to them and I start talking about these things, there’s a relaxing for the parent. I say, “No, it’s not over,” and that their intuition was right. I think that is actually helpful. Like, I’m not just imagining this, and you’re affirming me that we need to do something else.
Dr. Sheely: I think… I honestly think that we do a disservice to everybody if we don’t tell the truth. I think when we don’t tell the truth, and we say, “He’s gonna be fine,” when the person doesn’t feel fine, the parents don’t feel fine, I think we can talk about, “I know you’re feeling stuck right now, let’s get you unstuck.”
Kat Lee: Thanks for joining us for this special edition of ASD, a new perspective. The podcast show where we help you understand what is going on in the mind of your child, and we do encourage you that growth for your child is possible. I’m Kat Lee. See you next time.