The term “well-being” is starting to enter the autism literature but the idea of providing the means for well-being isn’t there yet.
The assumption is that adults can’t grow anymore and the result is that the default is still providing adults with ASD support for who they are as of right now, with no room to grow.
These adults are not being given the resources and support they need to improve and thrive, and children are also suffering from these beliefs.
Well-being really resonates with us as parents because it’s what we want for our children. RDI® focuses on well-being in children with autism, rather than assessments and measurements, so they can thrive and become functional adults who experience quality of life.
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 always encourage you that growth for your child is possible. I’m Kat Lee, and in this week’s podcast, part two of Dr. Gutstein’s series, well-being and our children.
Dr. Gutstein: The term “well-being” is starting to enter the autism literature. But the idea of providing the means for well-being isn’t yet, and it’s still focused on how do we provide… It’s still focused on adults. It’s funny because there’s such a separation between people providing services for adults. The assumption is, “Now you’re an adult, you can’t grow anymore.” We’re just gonna provide you support for who you are as of right now and you’re not gonna get any better at it. You’re not gonna get any better at these mental tools or mental resources and learning from experiences, so we’re just gonna provide you with support around who, whatever you are. And we’re gonna do it based on a diagnosis, not on your individual needs or development.
Dr. Gutstein: And then, of course, you have the Children’s Services, which still focus on whatever things they’re doing. What’s interesting is they pick their own variables for outcome and they try to justify why those are good. It’s what they’re teaching. They’re teaching to the outcome variables, like IQ points and the Vineland. And then those become the measures of success, which are not very good at achieving even, but they all think it’s the measurement set. Even though this has nothing gonna do with well-being, or again, what we’re heading towards, they just don’t bother to do that.
Dr. Gutstein: And recently, there’s been a few papers in the literature that bemoan that fact, but it doesn’t change anything. It just continues on and parents don’t ever get information about what could be possible and nor do adults achieve that. Yeah, it’s an important topic and it gets you into all kinds of areas.
Dr. Gutstein: In this area, we have to define more of what is well-being, why is that important, what are the factors that we know contribute to that, and there’s a big literature of that. And again, our model of it. How is it being done in the autism world? Is there an emphasis on it? Yeah, people are entering it and using it as a term for outcome. Why is it not entering into clinical studies?
Dr. Gutstein: One of the things that we see is that there is no independent clinical research going on autism; the people who do clinical studies are trying to defend their own model, that’s all. Which is why I stopped doing RDI outcome. Why I stopped doing it, because the complaint, which was legitimate, was, “You’re just defending your own model.” It’s not independent, it’s a conflict of interest. And you need to decide this independently.
Dr. Gutstein: Here’s the problem, there’s no independent clinical researchers on autism, there’s nobody. Unlike people who study other things in medicine, there’s absolutely nothing, nobody. So it becomes this void where the only outcome research or clinical research is done by people trying to justify the thing they’re making money off of, the thing they are devoting themselves to.
Dr. Gutstein: And then the publications accept whatever outcome variables they say are significant, and that is painful. For instance, the Vineland has been used, even though the studies don’t do very well with it. The Vineland has nothing to do with well-being in the world for most people. It hasn’t. I should say so the minimum of, “Can you take care of yourself and stuff?”
Dr. Gutstein: But it’s an interview for parents around kids that was years ago developed for severely intellectually impaired children. It’s got nothing to do with functioning in a complex, dynamic world. Absolutely nothing. And we know that. And yet, almost every outcome said it tries to use the Vineland or an IQ test, which again, had no relationship to these things. Or language tests or something, which is gonna develop anyway for most people with autism.
Dr. Gutstein: There’s no attempt to form your outcome variables, or to see your goals as moving towards well-being, moving towards providing a pathway for self-managed well-being. And often is doing things to them. Or for adults, just providing them with some superficial services to survive, but not, again, giving them the mental resources to become better at navigating a complex, dynamic world. Which is harder to do.
Dr. Gutstein: Clearly, it takes more time, it’s a developmental pathway, you can’t do it in three months with a group. That’s why I think you don’t hear it as much. But people have walked into it, [ ] walked into it, [ ] [0:05:15.0]walked into this other model of… Which is not growth-related, which is not developmental and which is not about well-being. It’s not about self-managed well-being. Well-being and self-management are very highly related.
Dr. Gutstein: The idea that I know I have the ability… Relationships are, I don’t wanna downplay relationships here. But it’s been over-emphasized, I think. And the idea that I have the agency, I have the resources myself within myself. The agency to improve my situation, as bad as it is… I can help, I can contribute to things getting better is a critical factor in well-being.
Dr. Gutstein: Because life isn’t always gonna be pleasant and life isn’t gonna be… Especially, you go and be an adult, you get out of school, it’s gonna be a lot of adversity in our modern environment, a lot of unexpected things, a lot of uncertainty. And if you don’t come in with the idea of, “I can handle things, I have resources to manage things if they don’t work out”. Or if I hit with unexpected bumps, I don’t have to give up. And even if things aren’t looking very good right now, I can figure things out, I can do things to make my life better. If you don’t have that, depression is right there. And it’s just a spiral downward.
Kat Lee: Yeah, I just was gonna say, well-being really resonates with us as parents because it’s what we want for our children. It’s really the heart of what we want for our children. And I know with my son, I stopped having him take assessments and measured how much he knew of this and that and the other a long time ago, because it wasn’t measuring his well-being and how that would be for him.
Dr. Gutstein: Most parents in the autism community are miseducated. And the peer group that they’re in, the support groups they’re in, they’re not fed that. They don’t expect that to happen. If you’re in a certain state where only those certain other treatments are covered by insurance, the experts are telling you to do them, whatever… And the parents are all saying, “This is what we do.” It’s sort of taken out of you.
Dr. Gutstein: Yes, it’s intrinsically what you would want as a parent, but you start to believe in this other system. It’s unbelievable how many topics are actually related to when you start getting into this, from infancy onward, from understanding what autism is. That it’s not an inborn defect or something.
Dr. Gutstein: That it’s not unchangeable, that we can remediate, we can offer pathways. All the way to things like transition programs and the suicidality, and depression, and interventions, and such. Just a parting thought, if you think about the billions of dollars that have been spent on genetic studies and neurological studies on autism that provided us absolutely nothing to help people with well-being. And the interventions that have been done that don’t do that. If you took that money and you think about if we are actually providing and using at least a piece of it to move towards establishing well-being for people with autism, what a change that would make?
Dr. Gutstein: Just consider that. It’s an amazing idea. Think about it, okay?
Kat Lee: Thanks for joining us for the 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.