Thursday, January 31, 2019

Elizabeth Torres on Autistic Neuromotor Differences: The TPGA Interview

Running for the Waves
Photo © Shannon Des Roches Rosa
[image: two white kids in bathing suits
running on a beach towards some waves.]
Elizabeth Torres is Director and Principal Investigator at the New Jersey Autism Center of Excellence, and a researcher at Rutgers University, where her lab "develops new methods for precision medicine and mobile health." We spoke with Dr. Torres about her work on autism's motor and movement underpinnings, and why research in this area could lead to autistic people getting greatly improved and highly person-specific accommodations and supports, and why autism research is so rarely truly evidence-based.

Why is understanding neuromotor-based factors in autism so important?

Elizabeth Torres: As you know, autism is currently defined by observation. Think about a continuum from zero to ten, where at zero you have opinion, and at ten you have hardcore rigorous science, mathematically based. And somewhere in between, you have pseudoscience and soft science and so on.

The opinion-based evaluations are what we have right now in autism, all these inventories that basically give the child a label. And it’s label based on a deficit model: “He cannot do this, he cannot do that, he’s a failure at this.” And it’s confirming that there’s no one single, “OK, what has biology done for this child already? How is his coping nervous system actually coming up, spontaneously, with coping methods that from day to day allow him to function and to even survive? Because some of these issues are really serious when we go and measure them.

Neuromotor development starts rather early—from conception. And if this development gets interrupted, it’s a problem because it’s the stuff that scaffolds everything else: before there’s cognition, before there’s even a neocortex mature enough to distinguish a blur, or a noise signal. Neuromotor control is the basis of having autonomy, of having volition, of doing what you want to do. The beauty of it is that it’s measurable, is that it’s quantifiable.

We can go into the nervous system and harness all sorts of biorhythms, with instrumentation that is non-invasive. We can then understand the capabilities that nervous system already has. So you come to my lab and you’re already five or six years old and you’ve been having an issue with neurodevelopment since birth, and maybe nobody’s caught up with that. We can measure the child and have a comprehensive profile of the nervous system of that child and better understand what the underpinnings are of what is going on.

And we can tell you his nervous system already has these strengths and has these weaknesses.  And we’re going to work with the strengths first because this is our entry point. This is what enables us to interface with the nervous system of that child and then we can go from there and discover communication channels with that nervous system.

You have to do that from the bottom up, even before thinking of any kind of language, any kind of community, social, anything. It’s the basic thing. It’s quantifiable; it allows you to see what the naked eye cannot see. It’s like putting on a pair of glasses. It’s like when they discovered the microscope and then suddenly they said, “oh my God, there are all these organisms living in this microworld!”
That’s what it is. It’s so fundamental, and it will allow us to actually do science. Because in that continuum I told you at the beginning of the conversation from opinion to serious science, we’re in the opinion phase of things. It’s really, really bad. And you have all kind of people telling you, “this is scientifically proven.” No, it’s not. You haven’t even measured anything.

TPGA: So getting into what you were talking about, things on the microscale, that leads into my next question which is what exactly are micromovements and how can they affect autistic functioning?

Torres: Micromovements are a data type that we invented to study the fluctuations in the biorhythms of the nervous system. So whether you take an electroencephalogram or electrocardiogram or electromyogram—that’s to measure muscle activity—or kinematics, as in the type of stuff you see in CGI movies like Avatar, that’s all done with motion capture. We can measure all that stuff.

It’s all non-invasive, and the way is through wearables. The wearables we have are like smart watches, like the Apple Watch. Those give you data from the nervous system. They give you temperature, heart rate, motion, respiration rhythms.

You can think of those rhythms like a time series. If you were to have a probe on a person from when they were an embryo to when they died, you would have an infinite wave form of fluctuations. Peaks and valleys that go up and down. With micromovements we measure the amount of fluctuation, the amplitude, how much noise you have in your signal.

Think about it as the little bars on your cell phone: when you have reception you have a lot of bars, when you have no reception you have little or nothing. The micromovements we’re measuring are like that. It’s not that these are bad or good in the case of autism. We all have micromovements. When I measure it with regular kids with no neurodevelopmental problem, it has a signature. And when I measure it in a child with autism it has another signature.

The idea is that since we can measure it and we can track it over time, we can bring the signature of this person with this label called autism and shift it to the kid that doesn’t have an issue, that doesn’t have a problem with the nervous system. By measuring it, we can understand how it changes. So we can then track how it changes and we can steer it towards the direction that changes in the appropriate way—appropriate meaning that the child is comfortable with it. It doesn’t cause stress. It doesn’t induce anxiety in the kid.

We can measure these things. When you have stress, I know the signature of your heartbeat, of your skin, how much you sweat, etc. These are all markers that are biologically grounded. The nervous system is a physiological system. It has a certain structure and a certain neurophysiology—a certain function that we understand in neuroscience. We don’t have to make it up, we just have to measure it and track it.

This waveform that is generated enables you to measure anybody: whether you are three years old or sixty-six years old. Whether you are verbal or nonverbal. Whether you are typically developing or whether you have a problem. It’s a general thing. It’s not that it’s good or bad, it’s just that with autism we can measure the waveforms and we can track them and see how the child is growing and how his biorhythms are changing.

Because we know how they change we can promote change in a good direction and we can avoid the things that make it change in a bad direction. So if he’s taking a medication that is actually having a negative impact in the child we can measure that and say no, you can not take this because it is making you worse. This is the type of stuff that the naked eye cannot see.

A clinician looking at the child is not never going to know this, this is stuff you have to measure with instrumentation that measures at a very, very high sampling resolution and at a very high frequency so that you can then see the stuff that the naked eye cannot see.

TPGA: When you say whether things are good or bad for a person, are you talking about going from a place of stress to a place of non-stress? Or what does that mean?

Torres: It means that your biorhythms get out of whack if something is wrong. Imagine that you’ve taken medication that makes you shaky. It fixes you on one hand because perhaps now you have better concentration or can pay better attention, but on the other hand you develop a tremor and can no longer control your fingers. So, say, if you like knitting you can no longer knit. Before you get so bad that you can no longer knit a sweater like you used to, we can tell you, “hey, this is not good. It’s not visible—you can’t see it—but we can through these measures, so I’d rather recommend that you not take this medication.”

So that can prevent taking high risks because a lot of our kids are on meds—for example psychotropic meds—and we have no idea what the effect is. Pharmaceutical companies don’t even have a section of pediatrics. Drugs that were developed for an adult nervous system which is already mature and already in a steady state  are being used for kids with a nascent nervous system that is growing, developing, very fragile. So it’s an insult to the nervous system without knowing the consequences. We need to measure things. That’s essentially what we’re doing.

TPGA: My concern in this would be how people are interpreting the signals. I worry that people are looking for normalizing of autistic kids, instead of understanding what it means for them to be happy as an autistic person, or cope as an autistic person. Do you think that these signals could be used to try to generate evidence for making children do things because people want them to be less autistic?

Torres: Yes, absolutely. One of the things that the neuromotor signal tells you is how much volition that child has. Volition means I don’t have to tell you to do something. Your nervous system continuously knows, has autonomy, and knows how to control the movements of your body. It means I don’t have to sit there and give you a piece of candy so that you will point at a dog. That is the stupidest thing that you could do for a child. That’s not how a babies learn! Babies learn from the bottom up. You don’t tell babies to point at a dog. You don’t tell babies, “touch red 400 times and I’ll give you milk.” You don’t do that.

Babies self discover what they need to do, what the goal is. They self-discover it spontaneously. They start through trial and error. They do a lot of arm flailing. They drop a lot of things on the floor and they cause a lot of noise. All of this is exploratory phase of the nervous system. All it is is the baby finding its own way.

I have yet to see a newborn that you say okay here, suck on the nipple of your mom this way and I’ll give you a sweet. It just doesn’t make sense. the whole thing is backwards. When you have a therapy that does that to a child, be very worried about it because that’s not the way a nervous system learns naturally. You can help your child. You can guide your child. But you cannot impose something on your child. It cannot be 100% instructions: “do this, do that.” You have to let a child explore and discover and be curious. It’s the most fundamental property of a human being.

Children on the spectrum are no different. They’re very curious. If you let them, they’ll show you what they want. We’ve done it with totally nonverbal children that cannot communicate to us through language but can communicate through other means. You have to trust the child and the problem is that a lot of these other things that are out there have an agenda. It’s an expectation: “it has to be this way and cannot be this other way. I’m going to discourage anything that looks odd and does not conform to this agenda.” In doing so, they are actually—extinguishing is the word they use—the very solutions that biology found for that child. That solution may look odd to you but it’s actually a pretty good one biology came up with and you should work with it. You should not discourage it. You should work with it and learn it and learn how to use it to help. Because for some reason that nervous system found that mechanism to help itself so that’s what we should do: we should be looking for these kinds of clues.

Floortime for example, at an early stage allows that path of exploration because it’s a natural developmental thing. It’s built with a developmental approach in mind, not with a rat conditioning approach in mind. You cannot condition a human being like you condition an animal. That’s the bottom line. You need to let the system explore. We have a whole field of developmental psychology. Why can’t we look at that information, at that body of knowledge to help us?

It’s the same with occupational therapy. That brings me to your question about therapy. There are many therapies out there that need to be supported by insurance companies. They’re not right now, so the parents are on their own. They have to pay out of pocket and there is no codification of therapies. It’s very bad for parents.

TPGA: We tend to be wary of approaches like ABA therapy. We’ve published accounts from autistic people themselves who were in ABA therapy, and who had really negative things to say about it because of some of those factors that you just mentioned.

One thing I wanted to ask you about: you emphasize that sensory input is not passive. What do you mean by this, in a way that can help parents and autistic people better understand themselves?

Torres: It means that everything that comes into the nervous system, from sound to lights to touch,  are passively integrated with your movements, with your behavior—which is motion. It’s dynamically changing. That means you also have a nervous system that is reacting to sensory input. You don’t have a passive nervous system; it’s reacting to the input it gets. So you have to measure the reaction.

Essentially the micromovements measure that reaction and tell you how the nervous system is reacting to everything that is coming, from noise in the environment to people moving around you. It’s noise. People moving around you in a crowd, that motion is very overwhelming for a child with autism because you can’t decode it easily. There are a variety of reasons underlying the body sensation that you still have to build, or excess sensation or lower sensation than you should have.

That’s a problem when the sensorymotor system is not functioning in the same way as in a neurotypical system. How that nervous system ends up coping with the interpretation of the world around it and with the perceptions of the world around is complicated. You are constantly bombarding that nervous system with sensory inputs of all kinds. That nervous system is reacting to it, and we need to understand how it reacts to it.

When I say nervous systems, notice that I put an “s” at the end  because we have: the enteric nervous system, which is the intestinal, the gut, it’s a whole system on its own with its own brain, we call it the second brain. We have the autonomic nervous system with the heart and the respiration rhythms and all that. We have the peripheral nervous system with all the nerves that enervate the body and the face and eyes and enables the child to taste, to smell, to look, to control the muscles of the eyes. We have the brain and the spinal cord which is the central nervous system and within that we have a whole world of inputs.

All of the input a child gets, from food, from sunlight, from sound, from touch, from pressure—all of it counts. But the problem is that we don’t know how it counts. We don’t know how the nervous system of that child is reacting. The nervous system of that child we have in front of us is going to react very differently from the nervous system of a child next to it. It has to be a very personalized, very individualized approach. That’s the only way it’s going to work. Any kind of treatment must start with a comprehensive profile of the nervous systems of the child. All of it. As much as you can get to non-invasively.

Sometimes it’s difficult because a lot of our kids have gastrointestinal issues, for example, and it’s difficult to get to that non-invasively. We don’t have a probe that tells us, “he’s in pain.” His belly aches and the poor thing cannot move very well because you can’t think when your belly aches. It’s as simple as that. And so you have all kinds of people interpreting this as this or that. But, no,  he has an issue with his gut. And the gut has a lot of neurotransmitters that have to be well balanced with the brain’s neurotransmitters for things to work well in a balanced way. Things like this are so important and we just don’t know, so you have all kinds of people making it up as they go and selling snake oil. It’s really terrible.

TPGA: We do a lot of work—and that’s actually why our site was founded originally—to counter pseudoscience. Our mission has expanded to incorporate the neurodiversity perspective, but debunking autism quackery was our founding mission because there was so much bad information, and people were being tricked into spending money on things that wouldn’t help their kids.

Torres: That wouldn’t help and nobody knows that it wouldn’t help, because nobody’s ever done any science on it. Nobody’s ever characterised it. That’s a problem because a lot of things that are called science are not.

TPGA: I can tell you that when my son was initially being diagnosed, I took him to one of the DAN doctors because I didn’t know any better. It was in 2003 and he sent me back a five page panel that showed all these things my son was allergic to and all these different IgA/IgB reactions and it looked like science. But it didn’t mean anything. None of it meant anything.

Torres: IT’s terrible. I hear you. It’s detective work, and some people don’t have the skill to do it. Some people do know how to get through the loopholes of the system and how to get every single benefit out there that they’re entitled to, but not everybody has that ability. So because of this one size fits all model, the children are the ones hurt because it shouldn’t be one size fits all when each child is so different.

TPGA: You talked a little bit about why the approach to diagnosing autism lacks proper scientific rigor but I wanted to ask: you specifically talked about why the ADOS [Autism Diagnostic Observation Schedule] is not a great standard autism diagnostic tool. Could you elaborate on that?

Torres: The problem is it’s complicated because it’s a little bit technical so it’s kind of hidden in the fine print. Let me try to explain it as best I can. It’s actually a mathematical issue.

The ADOS was a test that was designed to detect how a child was not socially appropriate and had not reached certain milestones of social adequacy. Right here you have a problem because “social” is a very culturally-dependent thing. How do you define social appropriateness? Right there, that’s a huge issue.

But then you get into the details and how do you score this system? So think of when you go to the doctor and they ask you, “on a scale from 1 to 10, what is your pain level?” You say, “well, it’s a 6.” So he writes down 6. Then the next person comes through the door and he asks the same question, “on a scale from 1 to 10, what’s your pain?” And this person says it’s an 8. What does that mean? What does that 6 mean when you’re just one person with one nervous system and they’re another person with a different nervous system? You came up with a scale and it’s a completely arbitrary.
So what does it mean to not have pain for example? Well, nobody ever measured that. What does it mean to not have autism? You would think that the test that is the gold standard to diagnose autism would be tested on neurotypicals. How does a neurotypical child react to this test? What are the baseline scores that you get and how do you normalize those scores?

“Normalize” is a mathematical term that means you put it on a scale like a standard, say 0 to 1. Everybody’s on that scale and it accounts for anatomical differences, age differences, physical differences, cultural differences and things like that. Because if you have a kid from a poor district who goes to a school that is not properly delivering knowledge and you have another kid in a rich district who goes to a school with all kinds of privileges and you put the two kids together and give them the exact same test. Guess what? Chances are the kid from the poor district is not going to do that well because the test was not designed to account for those differences in the district schools. It has nothing to do with the kid. The kid is just as bright and if he were given the chance to go to the rich kid’s school he would do quite well.

So that’s what we’re faced with here. You have a test that has no standardized scale. It’s never been done on neurotypicals so we don’t know what baseline means. A scale of 3 or 4 or 6 or whatever means nothing. It has no physical value that I can anchor it to.

When you have a temperature of 40 degrees celsius you have a fever, right? And you know that it confirms that, most likely, you have an infection. You know that because millions of people since the thermometer was invented have been measured and you know that when you’re at 36 or 37 celsius you don’t have a fever. But at 41, look out because you might get a seizure if your child has a fever. You know that. But you know that because with a thermometer somebody figured out that 37 is normal, you don’t have to worry about it. But we don’t know what "normal" is with the ADOS. Nobody ever measured it. Can you believe this? That’s so wrong, don’t even get me started.

As a researcher in science, doing rigorous mathematical oriented science, I have to use this thing that has no meaning whatsoever. And I’m forced to use it because the system is rigged. Somebody is making a huge profit with this and everybody’s imposed this test and that’s a problem. There’s nothing we can do about it. It’s really really bad.

TPGA: I see a lot of things that you’ve mentioned. The district that I live in is really diverse, both racially and socio-economically. I’ve been involved with the Special Education PTA for the school district and see similar inappropriate situations in IEPs all the time. The standardized testing is not measuring kids appropriately, or doesn’t include factors like language translation, or the inability to get to meetings because you have to work. And so we have kids have the same disabilities and same support needs but get completely different services. It’s a real problem.

Torres: It’s a problem, and another problem with the ADOS test is it doesn’t tell you what the child’s already good at. It doesn’t pin down, “okay, he’s capable of doing X.” It just tells you all the bad. Frankly, if I were a parent, I’d already know what he cannot do because I live with the child. Tell me what the potential is. What’s the potential and I can work with that and we can work together and grow this child and make them into a happy human being. They don’t have to conform to your standards because your standards -- who told you that those were the standards to begin with? Who decided this?

TPGA: We push back really hard against the deficit model so it’s really great to have you as a researcher to back that up.

Torres: A lot of researchers are not aware of half the problems that we have in autism. We did go to the street and interview hundreds of people: from parents to survivor kids to lawyers to school district people to counselors, ABA people, BCBAs, everybody. So we got a pretty good sense of what’s going on. We don’t know everything of course, but we’re very in tune with the parents, with the families that come to our lab. We feel their pain. We know what they’re going through. We understand, and we try to help because the thing that I see is that you have a lot of people who are offering stuff that is not true. They’re just taking parents for a ride: offering snake oil therapies. Don’t go there. Nobody knows anything about that. As a parent, you’re desperate. You want the best thing for your child so you do whatever—we all do.

I mean, I went through the same thing. When my parents were alive and I had to deal with that system, which is completely different, with other headaches. I had to learn how to navigate the system for the elderly. And you’re desperate. You want to do what’s best for them and then you realize, “oh, these are all the bad things.” You have to be very alert to not fall into these traps.

TPGA: That’s the thing and why we try to be an evidence-based resource. We know that most people, like you were with your parents, are coming from outside a complicated system. And a lot of the parents in our community are autistic, but they don’t know that. So they’re coming from outside the disability and autism system and having to learning everything. But there’s so much information. It’s hard to navigate through it, and hard to figure out who to trust.

Torres: There’s no road map. That’s one of the things which anyone with resources for research or whatever should have devoted resources to: a road map for the parents, tailored to their region. Here in New Jersey, for example, I’m sure the state is quite good at helping parents of children with a disability, but it’s not good at telling them how they can get help. So the state can help you finance a van equipped with mobility equipment, but parents don’t know that for a fact. They don’t know how to get it, how to get the financing, how to get help, what they can put in it.

Or you have a child with autism, or whatever you want to call it, that has issues with being inside the house so they need to get out of the house and they will go running into traffic. The state here has a plan where they help you fence in your house. They help you to finance that stuff. Little things like that. A sign in the neighborhood saying, “beware a child with whatever.” But parents don’t know this because there’s no road map to tell you this is what you’re entitled to, this is what already exists.

And it’s different from state to state, so it’s hard to even find simple things like telling a teenager how to take public transportation to go from point A to point B to have a job. They can’t work because they can’t navigate, they can’t drive. Most research we do involves children but as they grow and they go into teenagehood, the parents say, “what am I going to do when the yellow bus stops coming?” Because after that there is virtually nothing for the adults and very little science. We just don’t know.

It doesn’t necessarily get better for everybody so some of these issues are converting to other disorders, like depression. Plus all the medications people have been exposed to might do something to your nervous system already, which we don’t know, because … we just don’t know.

So there’s very little that science can do right now because most science occurs in what we call the ivory tower and people are sheltered from this. They have not gotten in touch with the reality of autism. If you’re going to go into research it should be compulsory that you go and see it as opposed to doing research in this esoteric way where you have no idea what the reality is.

The research is not going to solve any real problem then, such as practical day to day issues.

TPGA: I hear you. I regularly attend INSAR. I don’t know if you ever go?

Torres: I went twice and then I stopped.

TPGA: It’s improved a lot, actually. 

Torres: I’m glad to hear it but the last one I went was in Toronto [in 2012]. I said, “I’m going to wait a few years because I know things get better.” So in a few years I’ll go back.

TPGA: Toronto was not great. I was sitting in the back of the room with a bunch of autistic and non-autistic friends and—I don’t know if you went to the keynote on autism and friendship—they were talking about how autistic people couldn’t make friends, while we were sitting there in a big group of neurodiverse friends.

Torres: That was the level of discourse. I just said, “what? I’m leaving.”  There were too many general statements. “Autistic people don’t have empathy, they don’t have theory of mind.” I was just, “what?”

TPGA: We now host the AutINSAR Twitter chat between autistic people themselves, a bunch of autistic self advocacy organizations and a bunch of researchers—and some of the latter are also autistic. It is a really great conversation about autistic priorities and directions for autism research. There was a lot more that had to do with acceptance and lifespan issues. They’ve been focusing on that a lot more since the 2014 INSAR conference. So it’s definitely getting better, but there is still a lot of stuff that was really questionable, like epigenetics. I’m not saying that epigenetics isn’t legitimate in general, but the way in which it’s being harnessed for autism purposes is really...

Torres: Oh, yes, I’m aware of that.

I did see the program this year, and I said there are only so many conferences we go to per year because there’s a budget for that and I have to be selective. I have about nine people that I have to take with me, who do research, so it gets very expensive for hotel and airfare and everything and  they all want to go and present their research. So I’m selective.

One conference I go to every year is the Society for Neuroscience. It’s a very serious conference. It’s quite large and a little bit overwhelming because they have over thirty-five to thirty-six thousand people worldwide doing brain research in general. But it has sections on autism and they’re quite good so I go to that one.

It’s more scientific, more serious. None of these kinds of opinions like “people with autism cannot make friends.” I’m like, “where do you get this? You cane out of the shower and you thought of it so now you design a survey to do it or some silly thing like that.” We joke about it in the lab, because what can you do? But it’s serious stuff. It affects people’s lives. Those kinds of things that are totally not science, they drive legislation. It’s dangerous.

TPGA: This is a really helpful and informative conversation. I’m really grateful to you for it. Is there anything else that we didn’t cover that you wanted to talk about?

Torres: No, this is a good start and I think it’s on a level of discourse that we all understand. I’m aware that our research is quite technical, and we have a long way to go to communicate it to the public.

We’ve done so much that we haven’t even published that I think is going to be quite promising, but we want to make sure before we talk about it that it works well and it’s steady and robust. We’re trying to allocate some funds to make animations and videos and a web site where we can communicate the science in a user-friendly way. I know that what we’re doing is going to work, and it’s working already, and it’s going to help people because it’s not built in a spirit of “them and us.”

TPGA: That’s what we need more of: a lot less “them” and a lot more “us.” I absolutely agree.

Torres: That’s the spirit of my lab. We’re working toward making it more accessible to people in general to bring awareness of the things that are assumed—and they’re all assumptions. It’s an effort between my lab and the parents and the kids and the survivor kids and so on.

TPGA: Great! Well, thank you. This was really, really illuminating and I think will be very helpful for a lot of our readers, so thank you very much.

Transcription by Max Sparrow (thank you Max!)