I always wanted to become a walking laboratory of social engagement: to resonate other people's feelings, thoughts, intentions, motivations, in the act of being with them. As a scientist, I always wanted to measure that resonance, that sense of the other that happens so quickly, in the blink of an eye. We intuit other people's feelings; we know the meaning of their actions even before they happen. We're always in this stance of being the object of somebody else's subjectivity. We do that all the time. We just can't shake it off. It's so important that the very tools we use to understand ourselves, to understand the world around us, are shaped by that stance. We are social to the core.
So my journey in autism really started when I lived in a residential unit for adults with autism. Most of those individuals had spent most of their lives in long-stay hospitals. This is a long time ago. And for them, autism was devastating. They had profound intellectual disabilities. They didn't talk. But most of all, they were extraordinarily isolated from the world around them, from their environment and from the people. In fact, at the time, if you walked into a school for individuals with autism, you'd hear a lot of noise, plenty of commotion, actions, people doing things. But they're always doing things by themselves. So they may be looking at a light in the ceiling, or they may be isolated in the corner, or they might be engaged in these repetitive movements, in self-stimulatory movements that led them nowhere. Extremely, extremely isolated.
Well, now we know that autism is this disruption, the disruption of this resonance that I am telling you about. These are survival skills. These are survival skills that we inherited over many, many hundreds of thousands of years of evolution.
You see, babies are born in a state of utter fragility. Without the caregiver, they wouldn't survive, so it stands to reason that nature would endow them with these mechanisms of survival. They orient to the caregiver. From the first days and weeks of life, babies prefer to hear human sounds, rather than just sounds in the environment. They prefer to look at people rather than at things, and even as they're looking at people, they look at people's eyes, because the eye is the window to the other person's experiences, so much so that they even prefer to look at people who are looking at them rather than people who are looking away. Well, they orient to the caregiver. The caregiver seeks the baby. And it's out of this mutually reinforcing choreography that a lot that is of importance to the emergence of mind — the social mind, the social brain — depends on.
We always think about autism as something that happens later on in life. It doesn't; it begins with the beginning of life. As babies engage with caregivers, they soon realize that, well, there is something between the ears that is very important — it's invisible, you can't see it, but it's really critical. And that thing is called attention. And they learn soon enough, even before they can utter one word, that they can take that attention and move somewhere in order to get things they want. They also learn to follow other people's gazes, because whatever people are looking at is what they are thinking about. And soon enough, they start to learn about the meaning of things, because when somebody is looking at something or somebody is pointing at something, they're not just getting a directional cue. They are getting the other person's meaning of that thing, the attitude. And soon enough, they start building this body of meanings, but meanings that were acquired within the realm of social interaction. Those are meanings that are acquired as part of their shared experiences with others.
Well, this is a 15-month-old little girl, and she has autism. And I am coming so close to her that I am maybe two inches from her face, and she's quite oblivious to me. Imagine if I did that to you, came two inches from your face. You'd do probably two things, wouldn't you? You would recoil. You would call the police.
You would do something, because it's literally impossible to penetrate somebody's physical space and not get that reaction. We do so, remember, intuitively, effortlessly. This is our body wisdom; it's not something mediated by our language. Our body just knows that. And we've known that for a long time.
And this is not something that happens to humans only. It happens to some of our phyletic cousins, because if you're a monkey, and you look at another monkey, and that monkey has a higher hierarchy position than you, and that is considered to be a signal or threat, well, you are not going to be alive for long. So something that in other species are survival mechanisms, without which they wouldn't basically live, we bring into the context of human beings, and this is what we need to simply act, socially.
Now, she is oblivious to me and I'm so close to her, and you think, maybe she can see you, maybe she can hear you. Well, a few minutes later, she goes to the corner of the room, and she finds a tiny little piece of candy, an M&M. So I could not attract her attention, but something — a thing — did. Now, most of us make a big dichotomy between the world of things and the world of people. Now, for this girl, that division line is not so clear, and the world of people is not attracting her as much as we would like. Now, remember that we learn a great deal by sharing experiences. What she is doing right now is that her path of learning is diverging, moment by moment, as she is isolating herself further and further. So we feel sometimes that the brain is deterministic, the brain determines who we're going to be. But, in fact, the brain also becomes who we are, and at the same time that her behaviors are taking away from the realm of social interaction, this is what's happening with her mind, and this is what's happening with her brain.
Well, autism is the most strongly genetic condition of all developmental disorders. And it's a brain disorder. It's a disorder that begins much prior to the time that the child is born. We now know that there is a very broad spectrum of autism. There are those individuals who are profoundly intellectually disabled but there are those that are gifted. There are those individuals who don't talk at all; there are those individuals who talk too much. There are those individuals that if you observe them in their school, you see them running the periphery fence all the school day if you let them, to those individuals who cannot stop coming to you and trying to engage you repeatedly, relentlessly, but often in an awkward fashion, without that immediate resonance.
Well, this is much more prevalent than we thought at the time. When I started in this field, we thought there were four individuals with autism per 10,000 — a very rare condition. Well, now we know it's more like one in 100. There are millions of individuals with autism all around us.
The societal cost of this condition is huge, in the US alone, maybe 35 to 80 billion dollars. And you know what? Most of those funds are associated with adolescents and particularly adults who are severely disabled, individuals who need wraparound services — services that are very, very intensive. And those services can cost in excess of 60,000 to 80,000 dollars a year. Those are individuals who did not benefit from early treatment, because now we know that autism creates itself as individuals diverge in that pathway of learning that I mentioned to you. Were we to be able to identify this condition at an earlier point, and intervene and treat — I can tell you, this has been probably something that has changed my life in the past 10 years, this notion that we can absolutely attenuate this condition. Also, we have a window of opportunity, because the brain is malleable for just so long, and that window of opportunity happens in the first three years of life. It's not that that window closes; it doesn't. But it diminishes considerably. And yet, the median age of diagnosis in this country is still about five years, and in disadvantaged populations, the populations that don't have access to clinical services, rural populations, minorities, the age of diagnosis is later still, which is almost as if I were to tell you that we are condemning those communities to have individuals with autism whose condition is going to be more severe. So I feel that we have a bioethical imperative. The science is there. But no science is of relevance if it doesn't have an impact on the community. And we just can't afford that missed opportunity, because children with autism become adults with autism. And we feel that those things we can do for these children, for those families, early on, will have lifetime consequences — for the child, for the family, and for the community at large. So this is our view of autism.
There are over a hundred genes that are associated with autism. In fact, we believe there are going to be something between 300 and 600 genes associated with autism, and genetic anomalies, much more than just genes. And we actually have a bit of a question here, because if there are so many different causes of autism, how do you go from those liabilities to the actual syndrome? Because people like myself, when we walk into a playroom, we recognize a child as having autism. So how do you go from multiple causes to a syndrome that has some homogeneity? And the answer is what lies in between, which is development. And in fact, we are very interested in those first two years of life, because those liabilities don't necessarily convert into autism. Autism creates itself. Were we to be able to intervene during those years of life, we might attenuate for some, and God knows, maybe even prevent for others.
So how do we do that? How do we enter that feeling of resonance, how do we enter another person's being? I remember when I interacted with that 15-month-old, the thing that came to my mind was, "How do you come into her world? Is she thinking about me? Is she thinking about others?" Well, it's hard to do that, so we had to create the technologies. We had to basically step inside a body. We had to see the world through her eyes.
And so in the past many years, we've been building these new technologies that are based on eye tracking. We can see, moment by moment, what children are engaging with. This is my colleague, Warren Jones, with whom we've been building these methods, these studies, for the past 12 years. And you see there a happy five-month-old, a five-month little boy who is going to watch things that are brought from his world: his mom, the caregiver, but also experiences that he would have were he to be in his daycare. What we want is to embrace that world and bring it into our laboratory, but in order for us to do that, we had to create these very sophisticated measures, measures of how people, how little babies, how newborns, engage with the world, moment by moment. What is important and what is not.
Well, we created those measures, and here, what you see is what we call a funnel of attention. You're watching a video — those frames are separated by about a second — through the eyes of 35 typically developing two-year-olds. And we freeze one frame, and this is what the typical children are doing. In this scan pass, in green here, are two-year-olds with autism. So on that frame, the children who are typical are watching this, the emotion of expression of that little boy as he's fighting a little bit with the little girl. What are the children with autism doing? They are focusing on the revolving door, opening and shutting. Well, I can tell you that this divergence that you're seeing here doesn't happen only in our five-minute experiment. It happens moment by moment in their real lives, and their minds are being formed and their brains are being specialized in something other than what is happening with their typical peers.
Well, we took a construct from our pediatrician friends, the concept of growth charts — you know, when you take a child to the pediatrician, and you have physical height and weight. Well, we decided we were going to create growth charts of social engagement. We sought children from the time they're born. What you see here on the x-axis is two, three, four, five, six months and nine, until about the age of 24 months. This is the percent of their viewing time that they're focusing on people's eyes, and this is their growth chart. They start over here — they love people's eyes — and it remains quite stable. It sort of goes up a little bit in those initial months. Now, let's see what's happening with babies who became autistic. It's something very different. It starts way up here, but then it's a free fall. It's very much like they brought into this world the reflex that orients them to people, but it has no traction. It's almost as if that stimulus — you — you're not exerting influence on what happens as they navigate their daily lives.
Now, we thought those data were so powerful, in a way, that we wanted to see what happened in the first six months of life, because if you interact with a two- and a three-month-old, you'd be surprised by how social those babies are. And what we see in the first six months of life is that those two groups can be segregated very easily. And using these kinds of measures and many others, what we found out is that our science could, in fact, identify this condition early on. We didn't have to wait for the behaviors of autism to emerge in the second year of life. If we measured things that are, evolutionarily, highly conserved, and developmentally very early-emerging — things that are online from the first weeks of life — we could push the detection of autism all the way to those first months, and that's what we are doing now.
Now, we can create the very best technologies and the very best methods to identify the children, but this would be for naught if we didn't have an impact on what happens in their reality in the community. Now we want those devices, of course, to be deployed by those who are in the trenches — our colleagues, the primary care physicians, who see every child — and we need to transform those technologies into something that is going to add value to their practice, because they have to see so many children. And we want to do that universally so that we don't miss any child. But this would be immoral if we also did not have an infrastructure for intervention, for treatment. We need to be able to work with the families, support the families, to manage those first years with them. We need to be able to really go from universal screening to universal access to treatment, because those treatments are going to change these children's and those families' lives.
Now, when we think about what we [can] do in those first years, I can tell you, having been in this field for so long, one feels really rejuvenated. There is a sense that the science that one worked on can actually have an impact on realities, preventing, in fact, those experiences that I really started in my journey in this field. I thought at the time that this was an intractable condition. No longer. We can do a great deal of things.
And the idea is not to cure autism. That's not the idea. What we want is to make sure that those individuals with autism can be free from the devastating consequences that come with it at times, the profound intellectual disabilities, the lack of language, the profound, profound isolation. We feel that individuals with autism, in fact, have a very special perspective on the world, and we need diversity. And they can work extremely well in some areas of strength: predictable situations, situations that can be defined. Because after all, they learn about the world almost, like, about it, rather than learning how to function in it. But this is a strength if you're working, for example, in technology. And there are those individuals who have incredible artistic abilities. We want them to be free to do that. We want that the next generations of individuals with autism will be able not only to express their strengths, but to fulfill their promise.
Well, thank you for listening to me.