The autism community has made progress in many areas, but one foundational question remains surprisingly unsettled: What is autism at its core? Much of the literature and public understanding still frames autism primarily as a checklist of symptoms, which can make it difficult for parents and professionals to agree on what should be addressed first and why.
In this episode of Autism, A New Perspective, Kat Lee and Dr. Steven Gutstein explore why a symptom-only definition can unintentionally shape treatment toward short-term behavior targets rather than long-term development. Families may be offered many hours of “services,” yet still feel unsure how those services will help their child thrive in real-world complexity.
Dr. Gutstein describes a two-layered way of understanding autism: every individual is unique, with their own strengths and vulnerabilities, and many people also have co-occurring challenges. At the same time, RDI® emphasizes that there is an underlying developmental issue related to the foundations of dynamic intelligence and the formation of the experience-guiding relationship.
The conversation also highlights a core RDI® principle: parents are not peripheral to progress. They are essential guides, and the role of professionals should be to equip families to create meaningful developmental learning in everyday life, not to replace the parent-child relationship.
Looking toward 2026, Dr. Gutstein shares a vision for strengthening communication, leadership, and advocacy within the RDI® community, along with a renewed commitment to gathering and sharing outcomes that help families and professionals understand what truly supports long-term development.
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Full Transcript
Kat Lee: Welcome back to Autism, A New Perspective, the podcast 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 episode, Dr. Steven Gutstein talks with us about autism in 2026. Let’s listen in.
Dr. Steven Gutstein: There hasn’t been much improvement in the autism literature. When you think about medical issues, you think about advances in medicine, and we expect to see things improving. We expect success rates to improve, and knowledge and understanding of a condition to improve. If you think about heart disease, diabetes, or cancer, you just expect that we will become clearer, understand it more, and be more effective in how we address it.
The thing about all those illnesses or disabilities is that there is usually something at the core that unites people. What is the illness, or what is the problem? Then there are different ways people manifest it and different issues they may have. For instance, people with diabetes can also have heart problems, obesity, and other challenges. So we have to distinguish between lists of symptoms or presenting issues and what is at the core.
What is the underlying issue that defines this diagnosis of autism? It is interesting that, if you read the literature, autism is still being defined as a list of symptoms. People with autism are seen as a diverse group, and there is still little agreement about what unites that group.
There is a lot of discussion around autism advocacy, but we still don’t have a consensus in the autism community about what autism is, except for a checklist of symptoms. Yet, if you understand what we are doing, we do have a sense of the underlying commonality. As I have always said, there is a commonality of autism and there is also diversity, like anything else, in the different issues people may face. Children can have nutritional issues, gut issues, allergies, ADHD, and more. Autism doesn’t protect you from other issues. In fact, it may increase vulnerability.
So there has to be a very individualized approach, but there also has to be an understanding of what unites people with autism. My hope is that the autism community will finally understand the common underlying issue. We have been talking for years about the failure to develop dynamic intelligence because of the inability to develop the experience-guiding relationship.
There is a lot of research that supports this, but we are not getting it out clearly into the larger community. I would love to train our people to communicate that more effectively, whether to developmental pediatricians, child psychiatrists, teachers, parents, or advocacy groups. We have to look at autism in a two-layered approach. We have to look at each child as a unique individual with their own strengths and vulnerabilities, and we also have to recognize that each person with this diagnosis has a fundamental developmental issue that must be addressed if they are going to thrive in the world.
Kat Lee: When you said “to thrive in the world,” it really struck me. I was thinking about the children we are seeing who are now adults. That is our concern, even our sadness, because many have been through so many therapies and interventions, and they still are not thriving. It feels like we have this process that can help them thrive, and yet we are seeing so many young people who are not.
Dr. Steven Gutstein: Yes, because we are not addressing the core issue. I continue to stay up to date with the research literature, and it has gone off on many tangents. A lot of the research being published is driven by degrees, dissertations, and tenure, rather than a true attempt to understand what is underneath.
There was a period when researchers were trying to identify the core underlying issue. They explored ideas like theory of mind, executive functioning, and central coherence. Those frameworks did not fully account for the whole population, but I appreciate that people were at least trying to ask: what is underneath here? Why do we use the diagnostic label autism? Some people argue we don’t need that label. We would argue that we do, because there is something that unites this condition.
Interestingly, we know from infant research and adult research that the foundations for developing what we call dynamic intelligence—the abilities and motivations to thrive in a complex, dynamic environment—do not develop universally in people with autism. They may not develop in others to varying degrees as well, but we see early on that these foundations do not develop because the experience-guiding relationship does not form.
So we have a unified sense of what unites everyone with this diagnosis. I would like to see us all become clear about that, and clear about how to communicate it. We need to hold both truths: the diversity of each individual, and the underlying factors that unite autism. The failure to develop dynamic intelligence has to be addressed in each person with this diagnosis. And this also becomes a way to think about diagnosis and assessment—this is what we are calling autism.
Kat Lee: As a parent looking toward 2026, I agree with you. My hope is that parents do not lose—and instead gain—the understanding you have been talking about for years: they are the best guides for their children. If you look around where we live in the Dallas-Fort Worth area, there are clinics everywhere. It has boomed as a business. When I talk to parents, many feel they are supposed to send their child somewhere from nine to five.
But our model has always been that you are the best guide. Of course people work and have real limitations, but if you believe you are not sufficient during the time you are with your child, that is not true. I hope we can get this message out more, because this explosion of services worries me more than it used to.
Dr. Steven Gutstein: I think this pattern is happening in other areas of service delivery, too. People want professionals to come and fix things. In some areas that makes sense, but the key is that the role of the professional should be to help you figure out what you are going to do at home.
I have been going to physical therapy for a long time. I see people come for one or two sessions a week and assume that is the treatment. They do not do the work at home, and they do not get better. The people who improve are those who work with the therapist to figure out what to do outside the office.
There are times when a provider delivers something you cannot do yourself at home. For example, I had severe neck pain recently. I do my rehab exercises for two hours every day, but it was not helping that acute pain. My physical therapist located a specific spot and used dry needling to relieve it. I was not going to do that at home. But I still have to do all the long-term rehab.
In autism, for various reasons, we have adopted a model that started with behaviorism: “Give us the kids and we will fix them.” Parents are told they do not know what to do at home, and the most important relationship is not being utilized. The hours, days, and months that could be critical are often wasted.
Another problem is that many therapists are not trained to understand autism developmentally. They are trained to deliver a product that does not have evidence of long-term effectiveness and can make things worse by reinforcing static behaviors rather than developing the brain as a complex, dynamic system. There is also very little accountability for long-term outcomes.
I do not want to fight every clinic. I want to offer an alternative model that starts with education. To understand RDI®, you have to understand the long-term goal: helping a person thrive in a complex, dynamic world. If the core abilities do not develop, they will struggle in real life. Many service models do not even attempt to address those foundations.
Parents often are not given this kind of information at diagnosis. They are given a list of symptoms, and then they seek services that target symptoms rather than the underlying issue. If we want to change the system, we have to help people understand what autism is and what needs to be developed over time.
Kat Lee: As we introduce the new year together, I want to thank you for being tireless in reminding us how important research is, how important it is to ask the right questions, and how important it is to understand our role as parents and our role as professionals. You have been the voice of that for 30 years, and I want you to know how much I appreciate you.
Thanks for joining us for Autism, A New Perspective, a podcast 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.
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