Welcome to ASD: A New Perspective! In this first podcast, Dr. Steven Gutstein starts at the beginning by explaining what happens in infant development in the first months of life.
When we look at our children with ASD we wonder what went wrong. What happened to my baby? What should I do? To answer these questions as parents we must go back to the beginning and understand how babies develop. What occurs in those first three months, six months, twelve months of life, and what does go terribly wrong for them? When we understand this incredibly critical time for baby’s development, we then come to know what we must do. So, in this podcast Dr. Steve Gutstein takes us through the journey of the typical development of infants on our journey to find our answers.
RDI came out of my attempting to understand what autism is, and my spending hours and hours and hours with children who have been diagnosed with autism at various ages and various levels of severity, and trying to understand what are the common factors. What I want to be able to get across today is that current understanding of this comes from several different places: from the research, certainly that has been going on the last ten years which really gives us a whole new paradigm, a whole new way of thinking about this diagnosis. But it also comes out of hundreds and hundreds and hundreds of hours I have spent with children and adults on the spectrum as well as working with their parents, and talking with their parents, and listening to their parents, and finally extensively talking to other professionals and people who are at the forefront of this field. So, it really is a synthesis of all of those perspectives and I think that’s really very important if we are going to understand ASD. That we understand it from all those perspectives with the idea that we want to be more effective in improving the quality of life for people on the autism spectrum. That’s the goal, that’s the common mission we have, is to help more people with ASD to be able to have a fulfilling life.
So today we are talking about not a specific treatment or intervention or method, but we are really trying to talk about what did we learn and how has it created a new perspective, a new paradigm for us, a new thing we really have to pay attention to. That’s what we are going to be talking about today, and how do we bridge this gap between what the research is really telling us, and what’s still happening clinically because many of the things, most of the things, that are still going on in the clinical delivery system world are things that have very outmoded understanding of autism, and we are still operating as if we haven’t learned anything. Especially in the last ten years, we have made phenomenal progress, and yet we don’t see that reflected in interventions. But I think it is essential if we are going to help our children, if we are going to help our adults, if we are going to help our families, that we take what we are learning and try to figure out how to apply that in a way that really makes a difference for people.
As a beginning point, I want you to understand that the emphasis is on studying ASD right from the beginning. And that means looking at infants and where this abnormal pathway of development comes from. Why does this group of infants who are so heterogeneous have so much diversity initially? Why do they end up moving into the same pathway that we call Autism Spectrum Disorder, and when does that happen?
So, a number of groups are following what they call “high risk infants”, and some research was done several years ago that found that if you’re a younger brother or sister of a child who is already diagnosed with autism you have somewhere between a 10 and 20 percent chance of being diagnosed with the disorder. Those researchers can begin tracking those younger siblings at a very early age, a couple months of age, without knowing which of those younger siblings are going to wind up being diagnosed. They can also then have a comparison group of infants that do not have an older sibling with autism. So, they usually have at least those two groups that turn into three groups later on, because when those children get to be about three or so they make a diagnosis and decide which of the kids who were the younger siblings wind up having autism. So, you wind up in research then of having three groups. You have high risk kids who do not have autism, the high-risk kids that wind up being diagnosed, and the typically developing infants that didn’t have a sibling. And sometimes they add like a developmentally disabled, like a down syndrome group. So those are called prospective studies. They start from the beginning, they don’t know yet who is going to be who, so the researchers are blind to that and they try to predict what variables predict eventual diagnosis, and at what point can they make predictions of that, and what is the developmental course that leads to that.
Now a second group is called retrospective research, and what they do is they start with children who are already diagnosed with ASD, and they ask those parents of those children to supply them with video segments from certain coins in their child’s early development. So, what’s nice about these two prospective and retrospective is generally the findings support one another. There is not a large discrepancy between what we are learning retrospectively and what we are learning prospectively. The first things that they observed that surprised them was that in the beginning months of life, up to about 6 to 7 months, is that when they looked at things like their social engagement they were surprised to see that they really couldn’t see the difference between those who went on to have autism and those who didn’t. There’s a quote I like to use from Dr. Helen Taylor Flewsberg who has been involved in this area for a number of years, and what she says here is that during the earliest months there is no clear differences between infants who later meet the criteria for ASD and the others. They all show the same types of social interest and engagement. They all smile at other people. They follow eye gaze. They have eye contact during face to face interaction with their parents.
This is really the chart of the research that has been done up to this date looking at those children at the first 6-7 months of life, and you can see there is 6 studies here that show that they couldn’t tell the difference in terms of the amount of gazing towards mothers. Which is a really important thing, engagement between a young infant, because they’re not yet actively moving in their world. So, one of the ways we look at their engagement is their gaze, and also another important thing, six studies that show that they’re not able to tell the difference in their shared smiling and positive affect. So, there’s a good bit of evidence that says okay, at least in some respect, there’s not a significant divergence in those early months. That when you’re looking for what the point is, where children who are going to have ASD start, something different happens to them at least on an outward level, you really can’t see much of that difference early on. Now we may at some point find data that shows us that we can, but at least this point in time that’s where we are. Now, what’s striking is that when these researchers study the same infants 6,7,8 months later between 12 and 14 months, they saw a dramatic difference.