One huge area of impairment for people with autism is the ability to manage their own personal experience. Why does this matter? If you are unable to develop some kind of bank of personal experiences, then the future is always going to seem completely unpredictable, unknown, and scary. Often, this leads to a lack of good decision making skills, poor judgment and can interfere with every aspect of your life, especially in complex dynamic environments where things are not going to be repeating.
Learn about the unique ways that Dr. Gutstein is learning through new research to help people with autism, and their families, learn to manage their own personal experience.
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. Gutstein talks to us about the importance of changing our mindset on memory and learning from experiences. Let’s listen in.
Dr. Gutstein: Today I want to talk about the unique ways that we’re learning to help people with autism, and help families to learn to manage their own personal experience. And that’s one of the huge areas of impairment for people with autism and it’s really difficult to even emphasize how important that is because if you’re not able to develop some kind of bank of personal experiences that you can use, then the future is always going to seem completely unpredictable, unknown, scary. Then it’s almost impossible to make good judgements. Everything really, it interferes with every aspect of managing your life. Especially in complex dynamic environments where things are not going to be repeating.
Dr. Gutstein: Not talking about procedural things. We’re not talking about scripts, we’re talking about your experience of yourself and how you manage difficult things, complex dynamic situations and tasks and things that don’t work out the way you thought they would. Things where things suddenly emerge and you weren’t prepared for them, and learning to see yourself as someone who can do that and learning to understand what your unique needs are and learning to prepare for the types of situations you’re likely to encounter is really a critical element of being able to live in the real world, in our 21st century world.
Dr. Gutstein: I want to just give you, this is just a little presentation which demonstrates where we are right now in terms of how we’re trying to work with people of all ages, from young children to adults with autism and of course with their mind guides to develop this ability to manage their own personal experiences.
Dr. Gutstein: All right. What I realized was that if we’re going to be talking about this topic, we have to start to change people’s mindset about what happens with their own personal experience. Right now, people talk about memory and remembering, and that’s a great concept if you’re trying to memorize a name or remember a procedure or remember a date, remember to do something, but it really is problem when you’re talking about trying to learn and develop knowledge and represent your own personal experience. It has a number of problems because first of all, it orients you to the end of the process, which is the remember. What do you remember? And really if you want to manage your experience, you have to start at the beginning of the process and we’ll talk about that later.
Dr. Gutstein: And again, it has this connotation of somehow you can stuff things in there and take them out and managing experience is a much more active process. You have to be able to construct representations, whether it’s narratives, whether it’s knowledge and you have to be able to organize it. And then you have to be able to find it when you need it. We really want to change the way people think about this process of, from remembering. Again, there’s nothing wrong with the word remember but it’s not useful here to managing your personal experience, to develop it, to store it, to save it, to construct it, to decide first of all, to choose what you want to hold onto. What experiences have some value for you in the future? And this is again, future oriented.
Dr. Gutstein: The reason that we save something that we’ve experienced is that it will have some value for us at some future time. We don’t just save something arbitrarily. There’s no value to it. But what I found was that if we look at the natural history of this, if we look at what’s going on in terms of research or in terms of the way that people are talking about this process, they talk about personal experience and managing it as a very haphazard process, a very unconscious process that you can’t control. They talk about things like episodic memory and autobiographical memory and self knowledge. And most of the research shows it gets very distorted. It changes over time. It is very unreliable. Which makes you think maybe you shouldn’t do it. Maybe you don’t need it. But of course everyone also says no, it’s really critical. It’s really important. But we have no idea how we’ve learned to do it. We just don’t have any idea. It’s like a black box.
Dr. Gutstein: And so everybody focuses on remembering because they don’t know the other part of the process and problem here is where people with autism is, they don’t do that. Whatever that unconscious process is, they’re not doing it. They’re not doing it well. The product, the recollections they have are poor. And so if we want to help them, we have to start helping them to understand that we have to make this a more mindful process, more conscious process. We have to look at the parts of it, the pieces of it. And so what we’re developing here, what I’m talking about here is not giving people with autism sort of the natural unconscious, haphazard way of doing this, but really developing a method, developing a model of how it should be done ideally in the 21st century.
Dr. Gutstein: Basically, here’s the problem is that things are changing so rapidly. Things are evolving so rapidly in our world that if we don’t evolve, if you personally don’t evolve and continue to learn, continue, develop and grow, we can’t function well. We’re not going to succeed. This hasn’t happened in the past, but it’s happening now. But our brains aren’t set up. Even neurotypical people aren’t set up to rapidly, to effectively learn from experience, develop knowledge in different formats, store it effectively and then have it available when you need it. We’re just not. Our brains haven’t caught up with our needs yet.
Dr. Gutstein: To do this, I have to set up a system that will really benefit all people, but especially people with autism who don’t even do it in the haphazard way as the rest of us do that in terms of managing our own experience. We have to think about this as personal experience managing. It’s interesting. Or personal knowledge managing, if you will. Corporations use terms like corporate knowledge managing, corporate experience managing. And they have for a while because they’re very worried that important knowledge for that company is so distributed among different people, it gets lost when people leave and come, but they have to find a way to preserve it, to organize it, to make it available to different people who need it at different times. They’ve actually been working on that concept on a sort of organizational level, but we need to work on it on a individual level.
Dr. Gutstein: Anyway, rather than talking about memories, we want to talk about personal knowledge products. In other words, it’s a product, which is a piece of knowledge in some format. And I want to say that piece of knowledge may only have limited value. It may only help us at a certain point in development or certain situations that we’re dealing with right now. Other knowledge, pieces of knowledge may be more permanent, may have more value to us in terms of ourself. May be more generalizable. We want to talk about products and products that can be in different forms, in different formats, which you’ll see in a minute.
Dr. Gutstein: Now, one of the big changes that then this program, this curious management program, is that I realize that in this day and age, we don’t need to keep all of our knowledge in here and we’ve already learned to do that with what I call generic knowledge or cultural knowledge or contact knowledge. If you want, when I was young, everything I had to know is either in my head, I had to know so much in my head or I had to find some book in the library to get it, which might not be there, but you have to carry a lot of stuff around in your head around content and such and knowledge. These days what we’re learning, kids growing up and for most of us we’ve already made the transition that we just Google it. We just look it up. We don’t store it here. We store it in the cloud. It’s there. Somewhere it’s there. Even our own personal stuff, it’s there. Even our own knowledge is there.
Dr. Gutstein: But what we haven’t done is done something similar with our own personal knowledge because we don’t know how to develop it. We don’t how to externalize it. What we’re talking about now is that when we create, there’s really two forms of knowledge that I’m talking about, one, is more of a narrative story form. Humans are storytellers. We develop, we pass along knowledge, we hold our knowledge through story, through narrative. But we also have another form which we call, and I call those experience samples. Little samples of things that happen that are illustrations of experience. The other of course is what I call declarative knowledge, which are things I’ve learned. Statements about myself.
Dr. Gutstein: I’ve got to be careful about this. When Tuesdays come, I always have difficulty so I better do this. Things that help us prepare and plan. Things that help us to cope with stressful things or difficult things. Things about ourselves and our vulnerabilities, our strengths, we learn about ourselves. That’s declarative knowledge. But both of those can be done. They don’t have to be held in here alone. Just like with other types of knowledge, we can construct external products and then organize them externally in the cloud to have them when we need them. The value of external products is, is that we can use different media. Like video. And we can look at the product, we can test it out to see if it actually is helpful. If it’s not, we can get rid of it or revise it. And we can learn what the best way for us is to construct a product.
Dr. Gutstein: The next step is, so we talked about talking about personal experience managing, if we want to use knowledge managing we can. And from memories to products. All right, so personal knowledge is a product. Like putting it in a bank, I’m putting this product in here, I’m depositing it in here, which unlike a bank, we don’t just leave it in there. It’s something that we test it out to see if it’s useful, if we don’t need it, if we don’t find a match for it and something our experience, we need to archive it, delete it. We need to keep it updated. The fact that we can have external products is very powerful.
Dr. Gutstein: The thing for people with autism, it’s very comforting to have. It’s very comforting to know that they don’t have to keep it all in here. When they get a piece of wisdom, when they get a piece of knowledge, it’s there for them when I need it, when I have to have it, I don’t have to freak out, feel anxious. I don’t know. I don’t remember. I don’t know where it is. It’s there and because you’re going to organize it in categories that make sense to you.
Dr. Gutstein: The next thing is to take this very haphazard, unconscious process of how do we learn from our experience about ourselves and our world, which nobody explained so nobody who knows how. It’s very black box. And say, “Now, we’re going to make it a mindful process. We’re going to take the pieces from beginning to end and break them down and conduct them in a way that someone can actually learn to do them, who isn’t doing that naturally.” In fact, they’re going to learn to, they can learn to do them better than someone who sort of does the natural, haphazard way of doing it. But what that means is that instead of starting with everyone in the literature, all the scientists, all the clinicians, they’re talking about, they start with the backend. What do you remember? Let’s improve. Because they’re thinking of memory products. Let’s improve your recollection, let’s improve memory. Let’s see what you remember.
Dr. Gutstein: But that’s not where you start. Where you have to start actually memories, memory people who teach people have better memory actually do the same thing. Start with, what you are choosing to store. First of all, the differences in memory. There’s different things that people want to remember. Like pain so they come into those experts, I want to remember the facts or remember what I read. There’s already a focus, but the problem with experiential learning, learning about yourself in the world is that nobody’s telling you or there isn’t saying, I want to learn about 2:00 o’clock on Tuesday. I want to learn about this because it’s not about 2:00 o’clock on Tuesday. It’s about things that happen, things that you encounter, things that you interact with, engage with, that are meaningful, that are significant, that are new. That don’t make sense that we have to figure out or that figuring out something, having an insight, having a pattern. Or situations that keep occurring in slightly different ways that give you trouble. Or moments that are special moments.
Dr. Gutstein: The problem is there’s no external source that tells you, “Oh, this is what you should save for later.” This moment. Experience just sort of goes by through the day. Unless it’s very traumatic or negative, which is really not the type of thing we’re talking about here. Other than that, we just sort of go through the day. And the problem is when it comes to the end of the day and you’re trying to reflect on something, it’s sort of not real anymore. It’s like it becomes just a bunch of details that are there. It doesn’t have any authenticity anymore.
Dr. Gutstein: One of the things that you have to learn to do is what we call bookmarking and it’s for people with autism and for most of us it is really an interesting thing. It’s a hard thing in the beginning. It’s a habit. And it’s a habit where, and it really is a critical thing for people with autism who really do wind up going through the day and feeling overwhelmed and nothing strikes, nothing stands out except negative things. They don’t feel any control over their own experience in terms of what to say. The idea with both, what they learn through their mindful guiding and through co-experiencing, which they’re now on their own, is they learn how to recognize the feelings inside that lets them know that something outside, something in their world is happening that may be worth saving for later. We call that bookmarking.
Dr. Gutstein: And it takes practice, but it’s a habit that you learn to do. You don’t have to bookmark a 100 things a day because you don’t want to save that much. You’re not learning that much about yourself in a day. It’s a process that is intermittent. And it takes time to learn, but it’s critical because if you don’t learn to do that, then what have you got? What have you got? What experience, if you don’t learn to save a little tag or a little, what a bookmark is, is a little cue, a little tag that says something happened here at this point that’s worth reviewing. Now I want to talk about, we’ll talk about reviewing in a second.
Dr. Gutstein: We have to change our mindset. And if we’re going to work on this, if you’re going to work on this, it has to be, you don’t work on memory anymore. You’re working on personal experience, learning how to represent it, how to find it, bookmark it, how to represent it, construct it, these products. How to save it and organize it and then how you access it when you need it? And how to continue to develop it in all of that.
Kat Lee: What I was thinking, such a beautiful work, but I was thinking, you’re talking about something that other people don’t even think of the kids and adults as being able to do.
Dr. Gutstein: No, that’s right. That’s right. That’s the bottom line. I think you hit it right on the head is that in the autism literature, at least there’s an implicit assumption, they’re just not going to have this. They’re not going to have experience based memories. Everything has to be rote or sport or everything has to be procedures or rules and you can’t live that way in the real world. You wind up feeling overwhelmed all the time and you don’t have your own experience. Imagine, it’s just hard to imagine not being able to benefit from your own experience. They learn what to avoid, they learn unfortunately negative things like, I can’t do this, I can’t do that. I got to keep away from this. I got to keep everything the same. I can’t handle new things. And if you hear parents on sometimes talking about those kids, they’ll say the same thing.
Dr. Gutstein: Well he can’t handle this and make sure the environment is this. And it’s all these limiting things that maybe they’re true to some extent, but they’re not permanent necessarily aspects. But that’s what I’ve developed about myself as well, is what I can’t do and where I can’t go. And what I have to have if I’m going to even survive. And what a very sad limiting thing that is. And so the idea is, you can learn what works for you. You can learn, how to handle and basically what we’re doing is not what works at X point in time, but what you’re learning as you’re growing. As part of the dynamic intelligence program that you’re engaging with new challenges, you’re evolving, you’re developing, you’re learning about things that you didn’t think you could do all the time.
Dr. Gutstein: You’re learning about who you’re becoming. And as they’re actually becoming. It’s not just starting out with, here I am at this point in time and I have to accept this is who I am, which is what happens in the autism literature. This is about who I’m growing, who I’m becoming. And that’s why it has to keep evolving. And it’s just a chronicle of what you’re becoming as a person. How you’re growing. And still what you need. You don’t neglect your vulnerabilities or what makes it work for you. It’s personalized in that way, but it’s not static. And you’re right, it’s static. The way people in autism are treated around knowledge is static. It’s like, here’s what you do with this situation, or here’s who you are and so you better accept it and adapt, or the world better adapt to you.
Dr. Gutstein: It’s all static rather than here’s what you’re becoming. And now the people we work with, they’re all in the process and they experience the becoming. And where they’re going to end up, we don’t know. But nobody really knows that. We don’t start focusing. We don’t neglect limitations, but a lot of the things that are limited, their stereotypical limitations don’t become limitations for the folks we work with. They have personal vulnerabilities just like anybody else, but they don’t have autistic limitations. Like change, like social situations, like this, all those things that are not limitations. It’s just how do I engage with those things? How do I choose what works? How do I learn and what works for me? How do I continue to grow and develop and learn? Yeah, it’s a whole different way of looking at, it’s a growth model of autism.
Dr. Gutstein: And it’s saying what would be the best practices? The thing about this system that I like is that I think every child should be learning this, not just children with autism. I think it’s very sad if you’re looking at it that children don’t learn, if you’re early age, how to learn about themselves from their own experience and how to start developing their knowledge of themselves in the world. Who they want to be, what’s working for them, how they’re growing. There’s no system for that. There’s no personal knowledge system and everything’s focused on content. Or certain skills that are just, nothing to do with you and the world. And so how do you chronicle, learn to develop yourself as a person, learn to develop yourself as a unique individual in the world. Learning what you need, learning what works for you, learning how you’re evolving, learning what your next goal is.
Dr. Gutstein: There’s just no system for it. It’s a very sad commentary if you think about it. And so what I thought about is, is this a system that I think everyone uses. I think that people with autism who are learning to use this, they’ll be superior actually to neurotypical people. Which give them the benefit of that, which is nice. But certainly not, it’s not a, some of the compensations, which is a very poor substitute because it’s really, it’s a substitute for what we do in this haphazard unconscious way that doesn’t. If you know most people with their personal knowledge is really poor actually, but really poor is only relative if you have none. If you’re not getting any, it’s a lot worse than poor. Poor is a relative term because it’s great compared to somebody who isn’t being able to benefit from their experience and other people’s experience as well.
Dr. Gutstein: Thing about the system is you can share and learn from other people. But I think the key is first of all, to have your own way, or your own personal way because what fits for someone else doesn’t fit for you. What works for someone else and what situations you encounter and every time you go into a situation if there’s another person, it’s not the same situation. In other words, I could be at the same place at the same time for essentially the same function, but it could be a completely different situation because what I perceive, what’s meaningful to me, what’s significant, what’s hard for me, what’s challenging for me, what’s easy for me, all that’s different for each person. Even though we act like it’s all the same, you go into this situation, blah, blah, blah, all you can do there is get sort of the general rules.
Dr. Gutstein: It doesn’t help you really to succeed. It doesn’t help you to feel like, okay, what does it mean for me to be in this situation? How do I engage with it? What do I need to look for? What’s likely to happen? And how do I handle change? How do I handle surprises that might happen all the time in my life? How am I becoming a person who can do that? How do I start to become more sensitive to those little signals that mean I need to breathe or take a break or stop for a second, becoming aware of myself? All of those things I think are, need to be personalized. There are certainly techniques and things that are great, but who knows if for any one person what works. You have to figure out in trial and error what works for you.
Dr. Gutstein: And then when you find out what works, you need to know it and save it and know where it is so you can use it when you got it and know when it stops working or what the limits of it are. But that’s something that, a gift we want to give to everyone with autism. Everybody, we can.
Kat Lee: Thanks for joining us for ASD: A New Perspective, a podcast show where we help you understand the mind of your child and we always encourage you that growth for your child is possible. I’m Kat Lee. See you next time.