What are the dreams that you have for your children?
Did those dreams change when they received an autism diagnosis?
In this episode of ASD: A New Perspective, Dr. Rachelle Sheely talks about how we should never limit the dreams we have for our kids, autism or not, and how to help put them on a path to independence from a young age.
Kat Lee: Welcome back to ASD: A New Perspective, the podcast show where we help you understand the mind of your child and we encourage you that growth for your child is possible. I’m Kat Lee, let’s listen.
Kat Lee: Such an important topic and one I think people don’t start talking about early enough, if I can be so bold to say, which is a very popular topic with parents with transitioning into adulthood. And I say I don’t think people, parents and others as well start thinking about early enough because I tend to hear about this myself as a consultant vocally, we’ll say when the children around 13, 14, 15 years old. And what I tell parents much earlier in that is we need to start thinking about that earlier. What do you say?
Dr. Sheely: That’s exactly what I say and I find that the reason parents don’t think about it earlier, although they think about it with their typically developing children when they’re pregnant, it’s like, “Oh, I think she’s going to be the CEO of a company, or I think he’s going to play the violin and be first chair of the London Sym.” People have these thoughts about their children from the very beginning, but when they get that diagnosis of autism, there’s a reset button that occurs. And rather than continuing with their dreams and saying, “How do I get my children there?” And of course we all know our children have minds of their own. And so they’re going to decide what they want to do. But we still, when they’re a little, we think, “I have to get violin lessons for him and I want to make sure that her preschool works on this today.”
Dr. Sheely: We still think about those dreams when we began to provide experiences for our children. But when that diagnosis of autism comes along, it’s a reset button. And frequently people think my dreams are shattered. I no longer have dreams for my children. Now you, and I know Catherine, that those dreams continue to exist. They need to continue to exist. We need to have them as a focal point. And then having them as a focal point, you and I as consultants will say to parents, “What do you want for your child?” And because they’ve had this reset button, they’ll say, “Oh, I want to hear him say mommy. Or I want him to be able to go to school. Or I want him to be able to maybe drive a car.”
Dr. Sheely: But they have these very limited ideas about what their child might accomplish. The people who are really thinking ahead will say, “I hope we can have a friend.” But what you and I know is that we have to be thinking about where’s the child going to be at age 21? What are the relationships going to look like? What’s the flexibility going to look like and what’s the independence going to look like? And if we don’t keep that in mind, then we’re not going to get the child where he can be. And that transition into adulthood is going to be a jarring. It’s going to be this jarring thing that happens to the family and jump, “Oh, what are we going to do now?” So for me and for you, when we’re working with parents, we start building in what needs to be available for that child. From the very first days we worked with him as an infant as we would with a typically developing child. It’s not that different.
Kat Lee: One of the things I think is hard as you speak is it feels like parents get mental, I’m going to call them roadblocks and mind blocks to thinking about the future. I thought what you said about I want them to say mama, I want them to be able to do this. That’s very short term thinking, but so understandable.
Dr. Sheely: It is understandable. And I think part of the reason the short term thinking occurs is because of misinformation about what autism is and what you need to work on. So some of the children are born talking, some children have different abilities with language. And what we see is that probably every child we see is a little bit different. And so knowing how to analyze where a child is and how to get him on this growth seeking mental pathway, it’s what we have to work on and we know how to do that. The good news is we actually know how to do it and what we work on, everything that employers are looking for when a child is 21.
Kat Lee: Which is such an interesting way to think about our work, but it’s so true, we’re the long vision. It reminds me of as I have my clients think about what we call mission statements. Sometimes I call them vision, depending on how the parents best look at things, but trying to get beyond right now, trying to get a year up the road, five years up the road, 10 years the road. And as we say, those mind blocks kind of can get in the way of their thinking. So sometimes we really have to kind of push them to think about how were you thinking about this when you were pregnant?
Dr. Sheely:Yeah. And I feel like there’s a lot of good information out there, particularly if we look outside the field of autism. Now you know that Steve and I look at all of the research on autism, we’re always wanting to understand it better and we want to make sure that what we are working with parents lines up with the most recent research, but sometimes if you step outside the field of autism, you will come up with goals that are the most important goals to be thinking about. And I was just writing a paper on this so I have it in front of me. It’s funny that we should be talking about it today, but when we look at what employers expect of people in the 21st century, there’re list of six simple things that show up over and over and over again.
Dr. Sheely: Whether you’re looking at a university site or whether you’re looking at government statistics, whether you’re looking at employment boards in the State of Texas or in Singapore, they’re all saying the same thing. They’re saying that they want people to be able to communicate. And it’s so important for us to zero in on what communication means. Because if we don’t, we can fall back into, for particularly nonverbal children, let’s teach them to ask for a cookie. Well that’s clearly getting a need met, but it’s not looking at the kind of communication that has to be developed for someone to be independent on the job. So I’ve got my notes right here. I’m actually going to look at them.
Dr. Sheely: The person has to be able to read and understand information that’s presented in a variety of forums. Has to be able to write and to speak so others pay attention. And I’m thinking about that famous video we’ve all looked at now, which is Jay’s story. And in that, his father says if he can’t communicate, it doesn’t matter if he’s as smart as Einstein and has the cure for cancer. If he can’t communicate, it will go unnoticed, won’t have anything to contribute. Another thing is listening and asking questions to understand and appreciate the points of views of others. So when I hear you talk, say, “Let me clarify that. I’m not sure exactly what you mean.” Think about what it takes to be able to ask that question. I know what I don’t know and we often ask them, “Do you know what you don’t know?”
Dr. Sheely: Because sometimes we think we know everything and it’s why Steve and I continue to look at the research in Autism. What don’t we know? What are the questions we need to continue to ask? And to be able to share information in a variety of formats. Maybe I’ll share information with you with the graph I’ve created. Maybe I’ll share information with you as something I’ve read, maybe I’ll pull something off of the internet and share it with you, but I’m not going to come in and just talk at you. I realize that communication is more than that and that’s what employers are saying they’re looking forward in the 21st century. We begin to do that the very beginning with our children because we work on the communication skills.
Dr. Sheely: The first thing we do is we teach people to communicate without talking. And then we introduce the language later because we know that the nonverbal communication is 80 to 90% of what’s being understood and how to create understanding. So that’s the first thing.
Kat Lee: It’s just amazing because as you were talking about all that communication, I was thinking about how everything you were saying was thinking about what your partner at work would need you to be thinking about for them, it’s so much about thinking about the other person so you can work together. And as you say, these are just companies and what they’re looking for. And we start with thinking about this right from the very beginning whatever age, it doesn’t matter, that is the first thing we start looking at.
Dr. Sheely: And I think it might surprise parents to know that if a 16 year old comes in, who’s, we no longer use the term Asperger’s, but if a 16 year old comes in with a lot of language, we still think about communication and how we’re going to develop that broadband communication so that in just a few years he’s going to be employable. He’s going to be independent, he’s going to be able to live on his own.
Kat Lee: Well, as always, I think our message is so hopeful because here we are starting at wherever the individual child or young adult is and we’re starting with communication, the biggie for any work that you want to do today. And I just want to leave parents with a sense of hope as they think about transitioning to number one, think about it early and then number two, know that they can still have those dreams that they had, that is so important.
Dr. Sheely: And I think as we establish the guiding relationship for the parents and their parents are helping their child to become a good apprentice, they have in mind these are the things that I’m helping my child do. And even though we don’t say we’re going to walk in for a job interview next week, when you have a four year old the areas of communication, thinking and solving problems, ability to be adaptable, to learn continuously and on the spot and to rethink and continue to learn, to work with others and then the ability to plan and analyze and monitor what’s going on. These are the things, Catherine, that you and I use to give hope to parents. And it’s also the way that we keep them on track for that end product, which is what are your child’s relationships going to be like and what’s your child’s level of independence going to be? Because we know if the child can do these and do them almost the way you and I do them thoughtlessly because it’s like second nature. We’re going to get what we want to get.
Kat Lee: Thank you for joining us for 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, see you next time.