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Dr. Schwartz: Greetings everybody and welcome to the autism intensive. I'm deeply honored to be here with a distinguished colleague, highly esteemed, an innovator, thought leader, a doctor’s doctor, someone who spent his life, I'd say as a mentor to two generations of physicians, but most importantly an exceptionally kind, wise, compassionate healer and human being. In short one of my favorite people in the universe.  Dr. Sid Baker thanks for being with us, Sid.

Dr. Baker: Thank you for coming to talk with us. I am looking moving forward to whatever flows from our conversation.

Dr. Schwartz: Okay.  It's our pleasure. Just a few words for listeners, you graduated from Yale Medical School, then your residency was in pediatrics. During that time you spent several years in the Peace Corps and you became a professor of computer science, medical computer science, at Yale and also a clinical professor of pediatrics. But after being in the system a little bit, you went into private practice since then. And you’ve published nine books. A tenth book is in the works on autism and have over 35 peer-reviewed papers and you’re the medical director of the Princeton Bio Center and Gesell’s Center for Human Development and a long list of editorship's and speak internationally and nationally and you are sought after by colleagues and you are, as I said, a doctor’s doctor. So our focus today is on autism. If you could say a little bit about how you got here, to autism treatment and what you see coming up in the future or some innovative treatments.

 

01:54 Introduction to Autism

Dr. Baker:  I think my path began at a class at Yale Medical School in 1962, when we actually saw a movie. We didn't see many movies in medical school in those days. They thought we would fall asleep if they put movies on. I didn't fall asleep in this one. It was at the Yale Child Study Center where they showed us a movie. A very dignified doctor all dressed up and over cross his mahogany desk were two parents and the child was out of the room. He was saying “I have to tell you that the most important thing you should know here about Johnny is don't look for answers.” In the moment, I wasn't as troubled about that as I was in retrospect, reflecting on that. I now remember that as one of the few moments in medical school where I could remember where I was sitting and where things were in the room and what the movie was saying to me. Because in the end, it shocked me, that a doctor could say that to people.

03:03 The Aha Moment

Dr. Baker: It was years later when I was an attending physician at a school for, a residential treatment place, I should say, for people who were seriously handicapped with all kinds of troubles. One little boy, a young boy 13-14 years old, came to see me for his annual checkup, physical. I was supposed to go through the routine, we all know, in doing a physical exam. I approached him with my ophthalmoscope. He hauled of and slugged me right in the bridge of my nose. My glasses went in two pieces and I thought ”Holy feces, this kid is amazing.” This kid’s accuracy was startling, that my glasses could actually be bisected with this very precise blow. In retrospect I said to myself “He was saying, they’re looking into me, but you're not seeing me” and I thought there's something about this autism that is very troublesome. I’d heard years ago, don't look for answers and then I’d heard “This is your mother's fault” and then here was this moment when I was awakened to a puzzle.

Dr. Schwartz: Just elaborate on the mother's fault, because I’m thinking some viewers and listeners might not be aware of that reference.

Dr. Baker: Well, that reference is of one of the most powerful references in our medical culture over the last 50 years. In 1942 when the word autism was coined for this small group of children with these peculiar problems, it entered the discussion among psychiatrists and pediatricians and parents, who were, of course left out of the discussion to a large degree, but what was this. The first thing, it had to have a name for it and it was autism. Then we had to have an explanation for it. What was the cause and a protagonist of a certain point of view came forward with the idea that this came from cold mothering. The refrigerator mother is the phrase that we learned. By the 1960s when I was so now tuned to this after graduating from medical school, that this in the mouths of my professors at Yale, that it was the accepted explanation for autism, that the mothers were cold. They were too involved other things and their coldness somehow translated into children who were remarkably talented, skilled in various ways, in numerology and remembering things and all kinds of incredible skills, often in athletic skill and yet they couldn't function with language or of certain kinds of things to do with repetitive movements and so on, and it was her mother's fault.

06:00 The Shift from the Refrigerator Mom Theory

Dr. Baker: This just didn't wash, and naturally it was then 1962 and Dr. Rimland started writing his book and 1964, the year I graduated from medical school, the book was published. Then Bernie and I became friends some years later. But this was the recipe for understanding a serious problem in children that was offered to me in the servings of my education.

Dr. Schwartz: And this is from the University Chicago, one of our esteemed…This is rather shocking, yes.

06:35 Bernie Rimland’s Book

Dr. Baker: Yes, shocking that it should be so swallowed by the community until Bernie wrote his book. It was a remarkable book. I hope people would read the original edition, which is now been republished.

Dr. Schwartz: I just saw that.

Dr. Baker: And read my afterword about it, because I put in there my reflections on the shocking sense that this had to be overturned, but how eloquent Bernie was in doing it.  In his book there are some 300 or 400 references and more than 600 items in an index of people whose names were mentioned in the book. A very clever idea, because if you're an expert somewhere in the world and you written something about autism and here comes a book about autism, you will want to see, what did he say that I said. Appealing to the ego, of course, is a very good trick and Bernie did this with grace and humility. He was a nobody. He was a young graduate student and he had an autistic kid and he looked at all the world literature and came up with a very concise, very modest examination of the data that would support the refrigerator mother theory and came up with a suggestion, offered in a very temperate but persuasive way, that this was a biochemical biological problem. That book turned the world around in a very short period of time, considering how long it takes for new ideas to ripen in a world were experts have taken very strong positions and you usually have to wait for them to die before those positions get changed.

08:29 Let the Data Talk

Dr. Baker: In that time span, in the 1960s, I had gone from being an academic and full-time, I’m the medical computer sciences guy, to deciding that the data or medicine comes from people. I'm kind of a people person and I like being a doctor and I'm good at it and what I'm good at is listening. I had learned from my mentor, Shannon Brunjes, who was the head of our fledgling division at Yale, about a way of listening that allows data to be encoded so that the meaning of the data is coded in the structure of the computer arrangement of how you keep data. I thought, well, if I want to pursue this, where I am now in a big hospital in a big medical school with all these different specialists, we had all of the specialist help us with this original scheme that we had in this design, and it was a total tower of Babel. It just completely fell apart. So I thought, I am going to redo this someday and in that day should come after I've been a doctor listening to patients and getting the data straight from people's mouths and figuring out how to encode it so it would be able someday to talk. Let the data talk.

09:49 Becoming a Family Practice Doctor

Dr. Baker: So I started out as a family doctor in a local health plan. In New Haven, in the Yale environment, they didn't have many family doctors. That was not part of the Yale ethos. It was specialties, of course. The enrollees in this program wanted a family doctor. So they looked around and there were four of us doctors for the primary care and two internists and two pediatricians. But I had training in OB/GYN, so I said “I’ll be the family doctor”.  They said “Okay, you do it.” because they didn’t wanted to do it. In that role, I developed some sense about how to listen to people.  And, of course, my patients taught me what I know now. It all came from them. I had experiences that gave me the paradigm which now has been enduring in my own way of thinking about problem solving, what I teach to my patients and what I teach to people who want to listen. Coming back to your question, some years into that whole process, when I became the director of the Gesell Institute in New Haven, a fairly well known child development research and teaching center outside of Yale, but formed on the reputation and the and in the presence of Dr. Gesell, when he retired from Yale. I began seeing more children with developmental problems.

11:21 Discovering a Link between Yeast and Autism

Dr. Baker: At a certain point, after I had met Orian Truss, the person who presented to the world the idea that antibiotics could engender a so-called yeast problem, that would then have deep reach into the immune system. I saw a little girl who had eczema. She was a three-year-old girl with bad eczema and it started after she took antibiotics. Her neighbor, who knew about me and my thing about yeast said “You should go see Sid, because I think he could maybe make something out of the fact that there were these antibiotics and then the rash. I saw her and I gave her some nystatin for it, because I made the link between the antibiotics, the yeast overgrowth, and the rash and not only the rash go away, but her autism went away. I was not treating autism. This poor little girl couldn't talk and was doing strange things, but she had the rash over. That was why she came to me and on that level it was a simple formulation, like “Okay, well I know how to deal with the rash that follows antibiotics, at least to do a test of giving the medicine.  It is not a treatment yet, it is a test. I call it the thumbs test. Do it for a couple weeks and if it works, it is thumbs up. That thumbs test showed that indeed it worked and then nystatin became the treatment and her eczema went away and her autism went away. I once more I thought “Holy feces, this is really important.”

12:58 The Inception of Defeat Autism Now! (DAN!)

Dr. Schwartz: Sid, you’ve just given us, in such a concise beautiful way a profound insight into health and ill health and a systems approach, which you been such an inspiration for so many of us with the principles-based medicine, it’s fundamental causes, listening to the patient, these are things that we've lost in medicine. Can jump for a little bit to where you started Defeat Autism Now!. Maybe you could say a little bit about that and your transition to be able to take this message to the world.

Dr. Baker: I soon began seeing more and more children with developmental problems in my role as a practicing physician but director of the Gesell Institute.  I became aware that my limitations in biochemistry, immunology, and gastroenterology, were a barrier to my effectiveness. I was feeling overwhelmed by needing to have people talk to me about these things in a practical framework. John Pangborn had become a friend, because he had come East to participate in seminars that we had a New England with doctors of like mind who wanted to get into biochemistry and this and that and the other thing. So I knew John and then the mother of one of my patients…

Dr. Schwartz: He also had an autistic son.

Dr. Baker: He had an autistic son, that biochemist with a kid.  I had the mother of one of my patients, Candace Byers is her name now, and I were talking about my dilemma about needing help from smart people and I said “Boy, it would be so great if we could just get a few people with skills in these areas to get in a room and talk about it.” And she said “if you could do that, I'll pay for it” So she encouraged me to go along this line. In fact, she really, when I expressed my frustration about my ignorance, then she said “Well, why don’t you get the smart people together.” So then soon after that, Bernie Rimland was visiting in Weston Connecticut, where I was practicing. We had lunch and I said “Bernie, could we get some smart people together to talk about this?” Of course, he knew all the smart people. I know John Pangborn, but he knew people all over the world that were not only smart, but at a certain kind of soul and that soul emerged when we met in Dallas in 1995. The people who gathered there were parents, practitioners and scientists and we found common ground. That is what I presented to the group as our mission and I had a whiteboard and chalk, or whatever it was. I started to try to make a diagram of how different contributions of different people fit together. When I say different people, I'm talking Sudhir Gupta with four full professorships at the University of California, one of the leading immunologist in the world and parents and practitioners, all of very different rank and species even, all talking about this and not worrying about where we disagreed, It was let’s find the things we agree on, find common ground. We were so exhilarated by this. We had breakfast, lunch, and dinner together, meeting, meeting, meeting together, to hang out in the evening together. We did everything but sleep together. When it was over, we thought “This was so much fun.  We learned so much from each other and we found common ground. How could we do this again?” So Bernie and some others involved said “Why don’t we do it again and we’ll charge admission.” So then we had the next meeting and hundred people came and then the next meeting where 250 people came. Bernie had christened this meeting as the Defeat Autism Now! Group, which I thought was a terrible name, but when Bernie wanted something, Bernie got it. We had to bow to his eDr. Schwartzous genius and skills and sometimes he got it wrong. I think it was a bad name. It was too masculine. The ethos of the meeting was very feminine, in the sense of sharing and being tolerant and so on. It was too military, you know, defeat autism and but nevertheless it got going. Now, look at it, who now carries that torch of the leadership of an organization that has become this spinoff, sometimes I call it metastasis, but that’s not the right term, a spinoff from the DAN! movement but Dan Rossignol was the leader of the MAPS group, The Medical Academy of Pediatric Special Needs, which is more apt term and special needs is the key to what we were talking about in the beginning.

Dr. Schwartz: So, I just want to emphasize again, for me as practitioner, coming into the field perhaps 10-12 years after yourself, but to be so inspired that we could work together as a team: the clinician, the researcher, the scientist, and the parent. It is a very powerful model. It really has helped move the field forward and the evolution of MAPS now, which is trading physicians and practitioners to be able to do the biochemical model.

18:49 Paradigm Shift: It is not about a treating disease, it’s about treating individuals.

Dr. Baker: The difficulty in getting this thing going was that we were working into a new paradigm. It wasn't just, this is a new disease to find the treatment for the disease, this was a paradigm that says, “It is not about a treating disease, it’s about treating individuals.” And, in the treatment of individual, it turned out to be common sense, which is you have two answer two questions, that you know very well. They are both versions of the same question, which is, “Could this individual have a special”, underline special because each of us is different, “unmet need?” that is very important you don’t call it a deficiency. Could this individual have a special unmet need to either get something or to avoid or get rid of something? Those are the two questions. You sort of get or avoid, which, if taken care of, would support nature’s buoyant impulse toward healing. Those of the two sentences that wrap up what we’re talking about. Those sentences embrace a different paradigm than what I have taken to call, cynically obviously, “Name it. Blame it. Tame it.” prescription pad medicine. Just name the disease and then you think you know all about it. Like that doctor in the movie at Yale in 1962 said “Don't look for answers.” which is the most outrageous statement to make to people, because now he knows that the kid has autism and we know there’s nothing we can do about it and so forget it.  One of the answers he might've offered was that Sally, the mom needed to go and get psychotherapy and the kid needed to be put in an institution, where he would get his refrigerator mother affects taken care of. Either way it was a farce. So now we had a paradigm that said the individual, not the disease, is the focus of treatment. Now the logic is really simple. Okay. Find something special about the kid that needs to be taken care of and some find something that is to be gotten rid of or avoided, and then it turns out, within the landscape of autism itself, or the spectrum, as the landscape soon became called. There were some pretty common themes that came up as certain needs and certain things that needed to be avoided.

21:24 A System, Not a Tree

Dr. Baker: And those appeared in linkages in a little diagram that I made for the first publication of the DAN!…

Dr. Schwartz: Which was a page of interconnecting…

Dr. Baker: Yeah, of interconnecting things, with a circle and boxes and arrows, which was the diagram of a system, so now you use the word system a moment ago, now we are in a system, which is something where everything is connected to everything, very different from a tree where you have a trunk and branches and leaves and so it goes up and like that.  The human mind is very attached to the metaphor of trees in thinking about how to classify things. Your filing cabinet has a drawer and then folders in the drawer and then pages in the folders and so on. It is broken down into a sort of branching things. The system is like lines and dots all around the circle and lines come from.every dot to every circle. So everything is connected. If you have a system, then, there certain features of the system that that are, especially in living systems, that represent health. As we were talking about a while ago, those features are tolerance and diversity. The more a system is made of different kinds of things and the more tolerant it is of different kinds of things, the better and more healthy it is.  It doesn’t whether it is the political system, social system, or mechanical system, or a biological system. It is the same. The good thing is that Mother Nature provides the setting for healing to take place, because little adjustments can be made in the balance of the system. The trouble with the system is sometimes a malign influence, or an injury can spread through the system and cause mischief by spreading. On the other hand, the forgiving part of it all is that a benign influence, a good thing, can also spread through the system. You don't have to get it completely right. You just have to find where the easy leverage can be applied and, bingo, it helps.

Dr. Schwartz: That is, again, so simple and beautiful and profound implications, because the single bullet approach, which our system is focused on, is not working well. I know your book is coming out later this year on autism. Will these topics be elaborated? Because I would like to take a half hour and dive into each one of those.

23:59 Risk

Dr. Baker: Yes, I’ve really taken off on those to put it into a way that boils down to “Okay, what you do? How do you think this through when your focus is on a given child?” and get it to in a way that is, first of all, mostly risk-free. In terms of decision-making for parents, obviously, when they confront the medical profession, the first thing is “Well, is it dangerous?”, because Lord knows, just turn on the TV, when you’re talking about drugs, danger shows up before the ad is over, like okay this is great stuff, but it could kill you. Risk is a problem. There is a way of boiling down this process as we think through, how to adjust to getting and avoiding and all that. I call it BROCS. B is for benefit. R is for risk. O is for the odds, the probability something will work. C is for cost and S is for stakes. When the stakes are high and the risk is low, even if the odds are not that great, go for it. Then you do a thumbs test with something that safe and you're on your way. The child is the best laboratory. Sure, the child can't say “Well, my ferritin level is such and such.” You have to do a laboratory test for that, but for many things a short trial of something with thumbs up is the most persuasive test you can ever get.

Dr. Schwartz:  That was the beauty of Defeat Autism Now! As it grew to 1500 or more practitioners and parents together at a meeting, that we could start to see what things evolved and had traction. And, of course, there was not one thing for all people or all kids, but so important then was your on leadership in Defeat Autism Now! and the development of Meta-Genesis and Autism360, which showed some unique data no one, I don’t think, could've predicted. So maybe talk about that.

26:15 Meta-Genesis

Dr. Baker: Yes, my favorite subject. Meta-Genesis was born out of a development in information technology that I started in 1969, inspired by my mentor, Shannon Brunjes.

Dr. Schwartz: And you have a patent on some of this methodology.

Dr. Baker: Yes and the idea was to encode the meaning of the words that people use to describe what's wrong with them, which we call the medical narrative, your story, your history. It comes from the lips of parents and each of us when we try to say what's wrong with us. It is helped if you can fill out long questionnaire, to refresh your memory and to emphasize the this is something the doctors might be interested in. Initially when this got through several stages, several very big failures, I must point out, this began when I went I went to the Gesell Institute and I had my own shop, so to speak. I had a computer, sort of, unrecognizable by today's standards. But back at Yale in 1959, we had an IBM 360 model 40 with, get this, 128K of memory.

Dr. Schwartz: It was huge at the time.

Dr. Baker:  It filled two rooms this size with a line printer that was the size of the table. By the late 1970s and early 80s, we were able to have a computer system in my office at Gesell and began working on, how do you get what Dr. Brunjes, my mentor, said was necessary. If you want to do interesting things with medical data, the data has to be in rows and columns. That was an important thing for him to teach me. The other important thing was, if you get medical people and computer people together, the medical people will want the computer people to automate the past, because that's where they're comfortable with. They can’t think about where this is this new technology is taking us, which is, “Can the computer make a diagnosis? Can a computer write a prescription?” Janice and I had the data in rows and columns and then we had at the Tower of Babel and working on that. Then when I was in my own shop, then the invention could be carried out in a single mind. Since it has to do with organizing the structure of data, and there are always some kinds of arbitrary things, you have to have consistency. I did that over a 20 year period, which is every word that everybody told me. A new word I would have to figure out how to get this into rows and columns.

29:01 “But I don’t type”

Dr. Baker: This turned into a system which I tried to sell to doctors in the 1980s. Jeff Bland and I were going around the country lecturing and people would say “Hey, Sid, this is great.” I had this CRT that I hauled around the country. I had a portable computer that weighed about 30 pounds and people would say “Hey, Sid, this is going to be great.” But then it turned out that my colleagues had a little problem with the keyboard. “The girls in the office do that, but I don't type.” This is the 1980s.  This has all changed. By getting the meaning of the data into rows and columns, now the data could talk. Pretty soon the data was coming out and we figured out the wrinkles in it. When the Internet came along, Judy Chinitz, a mom of one of my kids said we could do this on the Internet. She helped fund and form Meta-Genesis. Then the bubble came 2000 and Meta-Genesis died the day it was born. It was a newborn catastrophe starved of “What money?

 

30:15 The Birth of Autism360

Dr. Baker: Then seven years later the Moody's Foundation in New York, of the financial services company well-known, was looking for someone to do something to do with autism and information technology. Well, guess what? When they called me, I said I would love to have a shot at it and then I submitted a proposal and a nice woman who was a consultant to Moody’s said the proposal needed to be reworded here and there. She gave me 10 ideas about how to make it better. It was funded and now we formed Autism360, which a way that's free on the internet to not-for-profit enterprise for members of this autism community, which goes way beyond the autism spectrum really. It is for children of all kinds of different difficulties which overlap with autism, but they wanted the name autism on it. So we did that and to put in the details of the child’s story, so that the details could form patterns that help us learn what's going on.  The idea is that you and I were taught by our professors, listen to the patient and our patient's didn't get listened to by the professors. But we were still taught, listen to the patient. They were right in saying that. But listening is one thing, if you have to remember it all in your head or scribble it down on a piece of paper, memory doesn't really function very well except for the most exceptional people who have that kind of a skill. Some of them are autistic, right.

Dr. Schwartz: Processing information, yeah. Focus.

Dr. Baker: For most of us, if I sit here for a couple of hours with a patient and they told me the whole story, especially at my age now, the next day it’s like “Whoa, Well let’s see now, what was that?” If it is encoded in a computer, where the meaning of the words is encoded, and I’ll explain what I mean briefly in a second, then the data can talk. It can first of all print out a summary, that the patient now has. The patent owns the record. All the records in Autism360 are anonymous. So there's no confidentiality problem because there’s no name on it. Nobody who stole your data could ever find out that this belongs to Sid Baker in Sag Harbor. It is just a fake name. All the data is there and you can print out this report. It has an alias name on it, but has all of the symptoms.

32:57 Start with the Child’s Strengths

Dr. Baker: Start with the strengths, because strengths are the most important thing we should have to know about our kids. It’s important for them to hear us talk about their strengths. When kids come into this room for talking about the problems, the first thing off is and you did really great on the swing. You’re a great swinger. I have a swing outside, as you know. We have the strengths up first and then the problems are arranged in a way that's intelligible to doctors in terms of the cardiovascular, and gastrointestinal, and all the different things and arrange nicely in a report that gets the patient to be seen by the doctor by virtue of this piece of paper. Doctors are busy. Gathering this data is not an easy process to do in a half hour visit. But if you take that report to the doctor said “This is Johnny's report.” they’ll say “Wow. Where did you get this?” Ten-fifteen years ago, “Where did you get this? Is it some kind of computer thing? Ahh l I don't want it”. Now people are wising up a bit. Now the kid gets to be seen through my eyes and then he gets to see his strengths and see himself through that and then still become himself. This is a tool for parents, practitioners, and children, and so on, to gather the data. It is also a tool for seeing the big picture.

Dr. Schwartz: And educate the doctors. Let me just mention that we will have the information on Autism360 and your new book on the website. One thing I really want to emphasize. We are getting so much information now, very important in my practice was that pearl you taught us or me, 20 some years ago.  We’re gonna look at what's right with the child, what the strengths of child are. I know so many of the parents have benefited from that. I could apply that wisdom to my child and to the people I work with. That is really important and I thank you for bringing that into our consciousness.

Dr. Baker: I cannot emphasize it enough, because what we see in our kids in the presence of doctors and others is so much emphasis on their disabilities and so little emphasis on their abilities, sometimes to the exclusion of any conversation about their abilities. Every kid has something that they’re good at. You can always find it, even if it's just being really good on my swing, a big smile, a really wonderful feeling by swinging back and that's a favorite for a lot of our kids. To be reminded that they're good at something is really transformative in many children, I mean children in general

Dr. Schwartz: And that they are being heard.

36:01 All Illnesses are Spectra

Dr. Baker: That they are being heard and seen. The report that I described a moment ago provides a vehicle to remind people, because the strengths are right up at the top of the report, and it comes not from a questionnaire. This is something we struggled with at Meta-Genesis. I’m a big questionnaire guy. I have a big questionnaire that people are supposed to fill out when they are going to come and see me. Some of my colleagues said the questionnaire is too long. People don’t want to do that. Well, if they want to come see me, they have to do that. I don't care and even some redundancies in there where same question is asked a few times and that they have to check off when it started and how long it is and how bad but it is. That data then, provides some details, which we’ll come back to in a minute, but also provides structured data that is now in a big database where it can be analyzed in very useful ways which were exemplified in a series of publications that I did around Autism360, about the principles of this kind of medicine, as well principle-based medicine and some things about the semantics, which is about how we use words. Spectrum, of course, is the word that is most informative that helps people understand this is not an entity but a spectrum. Of course, all illnesses are spectra. Autism is the Trojan horse, in the belly of which this idea of spectrum came into the fort and then came out and now is going to eventually spread throughout the kingdom because it involves all illness. Now autism is proudly carrying the banner of this word spectrum. The spectrum, of course, means that is dimensional, not just two-dimensional. It’s 3, 4, 5, 6 dimensional. These points live in space in my invention so that then they can be analyzed in different ways. When the research papers started coming, one of the questions we wanted the data to tell us was the difference between boys and girls.

 

38:15 How Are Boys and Girls Different?

Dr. Baker: At a meeting in Boston in 2003, you may have been there, I said to the gang. I said “How many people think boys and girls are different?” Yeah, we all thought… “Well, what are the differences?” “Well, girls are weirder. They’re more difficult” and I said “But can you name a symptom that would distinguish statistically, like more girls than boys, nobody nor I had an answer to that question. How can a field of inquiry like autism have four times more boys than girls and nobody have an answer to that question after we've been at this for some years? So I thought “Alright, we’ve got the data. Let’s start looking at it.” and so I had the data and it’s all in rows and columns. I can make pictures of it and I can do anything I want with it. Sure enough, we were able to compare boys with girls and, shockingly, they were almost identical in the incidence. We are talking about a couple of thousand children, pretty robust data. They’re almost identical in every peak among 50 different peaks that represent common symptoms, except four, which are statistically very different. So now we have an answer. How are the girls different? Now and just example, the girls had more allergies and immune system things.  The girls had more anxiety, in terms of emotional thing and their cognitive and sort of behavior, mostly cognitive areas where the girls didn't have as good a score. Well, so now why is that? What's at the bottom of all this? And so the next paper was to look at the data from the perspective of more inquiry into it.

40:23 Abrupt Shift in Boys to Girls Ratio

Dr. Baker: We had a new batch of data now. We now had four years of data from Autism360 and my statistician colleague, Andrew Milivojevich, a dad from Canada who was helping me with this. He made it clear that we now ready for another batch and Jeremy Nicholson, who is one of the world's great people in every way, but in systems and in statistics and so on, that put me on to the ideas that if you have a lot of data and you want to make sure it's “valid”, you should make sure that is consistent. And if it is, then you are off to a good start. This was something he would talk to Steve Ettleson about, in terms of the huge amount of data that Steve and Bernie had collected over the years from their surveys of parents. So when I got the new batch, I had all these new data on now about 3000 kids and so I looked at and said “Aw, let's check the data to make sure it's 4 to1 boys to girls, because we know, that's what it should be. I had this in a big excel spreadsheet and 24,000 rows and 60 columns wide, a lot of data. I analyzed and it turns out the ratio of boys to girls is 3 to 1. I thought “Oh, feces”. It is something wrong with the data because, it’s gotta be 4 to 1, right?  I did a little manipulate manipulation of the data and I found that there were some boys with vaginitis. I thought “Oh, no. The data is really a mess.” So I called up Andrew on the phone and I said “This is a tragedy. There's something wrong with our data” So he sorted it out and said “ I don't see any boys with vaginitis.” I said “okay, then I messed up”. Then we checked the data and the ratio was down really. So now we looked to the data for four years and the ratio of boys to girls was 4 to1, 4 to1, 4 to1 and, in 2013 it went like this.  Like a ski jump down. So something happened in 2013 that made more girls than boys, autistic coming into the Autism360. We looked at all the different questions that people can ask, right. Because it's ah, well because you started getting more kids from Dublin Ireland and none from Boston or something. But we covered the bases and it was a real phenomenon.

Dr. Schwartz: Do you have an answer?

Dr. Baker: Well, the answer must be that something happened in the environment that exposed girls to something for which their female protection was no longer valid.

Dr. Schwartz: They crossed the threshold of resilience, because of environmental background…

Dr. Baker: Yeah. Something happened. The girls had this protection because their detoxification chemistry has a different basis than male detoxification.

Dr. Schwartz: And higher glutathione levels in girls, I believe?

Dr. Baker: That's not really the key to it. It’s more that the girls have more mitochondrial mechanism for detoxification.

Dr. Schwartz: Is it strength resilience in their mitochondria?

Dr. Baker: Yeah. There must be certain toxins that came along that didn't care about that distinction and broke through the girl’s protection. That’s speculation. It’s our job to get the data and then get people to be interested in it.  So far nobody seems very interested in it. I got it published and sometimes people don't catch on.

Dr. Schwartz: Sometimes it just takes time. This is the power of thinking about things deeply.

Dr. Baker: What it shows is that the tool that we have, this is a tool for letting the data talk and seeing patterns that answer questions, that sometimes we don't even know how to ask, but also questions that can't be answered by any other means than having the details of what people used to tell their own stories. So the idea that you can tell if you want to know everything about somebody's genome or their serum porcelain levels, those are all good things. But if you don't capture the meaning of their words and let that talk, you're missing the point of the instruction from our professors which is to listen to the patients. Now that we have a tool that allows you not only to listen to it, but remember it and keep it in rows and columns in a hyperspace, an n-dimensional hyperspace. Then you can query that hyperspace and get good stuff out.

45:17 Parents Using Autism360

Dr. Schwartz: Let me just emphasize to the parents listening, please go to Autism360.org. It takes about 45 minutes.

Dr. Baker: It’s not that hard. It takes a while, but you have to just do it once and it's in there. You can go back and revise it and you can track things along. It is going to keep if we get more funding. We’re just getting started with it. It’s a Model T and you can get from Boston to California in a Model T, but we hope in a few years we’ll have a Maserati or a Boeing 747.

Dr. Schwartz: I’m curious, in your perspective, through the 15 or so years of DAN! what treatments emerged and then where do you see the next level or the next emergence of involving in treatments?

46:13 Tacks Laws

Dr. Baker: The treatments, of course, fall into two categories, in terms the paradigm that we’re talking about, something you need to get or something you need to avoid that may help you get better. They come under the umbrella of the tacks laws, which I cannot refrain from mentioning.

Dr. Schwartz: These have helped many clinicians.

Dr. Baker:  If you’re sitting on a tack, it takes a lot of aspirin to make it feel better. In other words, if you have a couple of things wrong with you and your address one of them, you are not necessarily going to get the whole picture. So when we talk about interventions, there are a few that really seemed like they were the one tack. It was all you did and that's all you needed, but if you're sitting on two tacks and you remove just one and, I’m sorry but the first tack law is, you have a lot of something wrong with you, taking a drug, like a painkiller, is not the answer. The second one is more like you’re sitting on two tacks, and you remove one, you don’t feel 50% better because you still have a tack in your butt. That means that chronic illness is complex and requires multiple interventions sometimes. As I said before, a system is arranged so that sometimes one intervention can have a big impact.

47:39 Gluten-Free/Casien-Free Diet

Dr. Baker: The big intervention that I think showed up initially was gluten and casein-free diets. It’s too bad because changing people's food is the hardest thing. I spent a couple years in Africa is a Peace Corps volunteer and doctor. We were trying to get people to feed their children differently, to wean them more gently and start feeding solid foods a little earlier. Well, come on. It is easier to change somebody's religion than to get them to change their food. Of course, the missionaries have been doing that. When it comes to the kind of missionary we were, you were really trying to overcome some pretty big obstacles when you're trying to change food and the same thing with people living in Chicago or Boston. You want to say don't eat gluten and it’s “Come on, in our family from Italy, we eat pasta and bread. So get off my case about that.”  And milk, you can’t drink milk. If you tell grandma that, she's going to tell to not go see that doctor anymore because we were brought up on milk.

 

Dr. Baker: It is too bad that the autism enthusiasm among those of us who knew a little bit what we were talking about, fell upon certain kinds of things that were not really popular, neither with the medical and scientific communities, because they want to work in the paradigm “Is milk the cause of autism?” “No, that’s not what we’re talking about.”  This kind of thinking of theirs is what I encountered when I went out into practice. I heard stories from my patients, like a guy who had horrible abdominal cramps and would end up on the floor, really moribund, by having this much egg on something that was served to him. He developed some kind of sudden inflammation of his gut from a tiny exposure to egg. I tell this story to a colleague, “Are you trying to tell me the colitis is caused by eggs?” “No! No! I’m talking about this one guy. ” They want to be a want to be able to universalize the maxim and say “Well, milk must be bad for everybody.” Well, in fact, it is bad for everybody and books written about way back in the 1960s during my training. Don't Drink Your Milk by… I can’t remember his name right now, a professor of pediatrics at Rochester. My chief of pediatrics admired him greatly, but he said “Ah, that thing about milk, he’s crazy.” Gluten and casein-free diets came along, that's not a good thing to have on your menu as your first thing to discover. This what the collective conscience of the experts and the parents, this is really works in some kids, transformative, just going off gluten in some kids, bingo, you hit it, but it isn’t everybody.  Then people have a hard time with it. That started off in a pretty good way back in 1990s. Then there is another example that is a good way of tracking how things get along in a network of doctors who are interested in these things. Paul Cheney was a much admired expert in chronic fatigue syndrome and had become a friend of mine and was visiting.

Dr. Schwartz: A real thoughtful deep thinker with a PhD in physics.

51:20 B12 Injections

Dr. Baker: And a PhD in physics, right.  He was visiting in Weston where my office was and we were hanging out and talking about the immune system of people in the autism spectrum and the immune system of people with chronic fatigue syndrome. There was a lot of overlap. Now we understand that. At that moment it's “Wow, you’re telling me all the chronic fatigue, this sounds like my autistic kids” and then he threw out the fact that his chronic fatigue syndrome patients responded very well to super high doses of vitamin B 12 injections. I thought “Wow.  I can try that.” This was hydroxocobalamin, one form of vitamin B 12 and it hurt like hell. It was extremely painful. It seemed to be off the charts but I mentioned it at a Boston conference back then somewhere to Jim Neubrander. Jim and I had worked together at the Princeton Bio Center and so he believed some things that I said because I was part of his rebirthing process in medicine and so he thought “Well, I'll get some B12 and try it. He got it from Hopewell Pharmacy and they gave him methyl B12.

Dr. Schwartz: Was that the only form they knew of or you wanted a non-hydroxy form?

Dr. Baker: I just said B12. He got methyl B12 from Hopewell Pharmacy and he gave it and he said “Boy, it really works.” I said “I can't believe you could give it to a kid. It hurts so bad.” He says “No, it doesn't hurt.” I said “Okay, send me some.” I got some from Hopewell Pharmaceuticals. I stuck it right in my thigh and it didn't hurt at all.  Jim went on to do the work he’s now so well-known for in validating this. There is something that came in through the back door and yet there it was. Then we had to figure out how does this work. John Pangborn tracked down Richard Deth, who understood about methylation and all at and where B12 and learned great things about his fingers and how it fit into methylation. He said “You know, you should get a hold of Joe James and so then the validation of how all this works came through beautifully in terms of the real science. But it was a very empirical process. It was like a lot of discoveries.

Dr. Schwartz: I just want to mention that we will be talking to Jim Neubrander and Hopewell Pharmacy and Dick Deth and Joel James, because I think living this is really important for people know about but also understand how something can get into the treatment world.

Dr. Baker:  There is a good example of something that qualifies as a thumbs test. You want to know if somebody needs vitamin B 12 and what we are talking about for this purpose, most doctors “Well, why don’t you do a vitamin B12 level?” It has nothing to do with vitamin B12 levels.

Dr. Schwartz: I try to explain that to patients very patiently

Dr. Baker: It has nothing to do with that. It has to do with a special need. It is a special unmet need. It’s not a deficiency, it’s a special unmet need. So how are you gonna find out if it works?  Give a shot of methyl B12.

Dr. Schwartz: There is some controversy about what’s the best form of B12, adenosyl, methyl hydroxy. I've seen some kids it may respond better. Have you have had that experience? How do you determine or do you have to just go empirically?

Dr. Baker: I don’t have enough experience to weigh in on it. I use methyl B12. It is the first thumbs test.  Since it is in the BR OCS, there's no R. There is no risk to it. That is something in a doctor’s office to say no risk. And most kids, they give you dirty look. You have the mom or dad hold the baby or the kid in a frontal embrace. The kid’s behind is here and, as Jim points out, you put it in the fat of the butt, is the best place to go. Forget the needle. You push the thing in and through away the needle.

Dr. Schwartz: Often, you can do it while the kids are sleeping.

Dr. Baker: You can do it while the kids are sleeping.

Dr. Schwartz: Jim’s web site has a really nice video.

Dr. Baker: So parents learn to do this. They are no problem. The child may be a little hyper for a day. But then, if he starts talking on day three, you know you’ve got something. That happens often enough, so we know we are in the right ballpark. Every kid deserves a shot at it, so to speak. Those are examples of the things that turned up on this collective trail of people trying different things.

56:34 Low Dose Naltrexone

Dr. Schwartz: How about the low dose naltrexone?

Dr. Baker: That's a really good one. I learned from Bernie Bihari. Two friends met in New England to talk about these things back in the 1980s, and got married to each other. Neil Orenstein and his wife, whose name I know very well but not right now, sat next to Bernie Bihari at the wedding reception. Bernie Bihari had learned in the early days of the AIDS, or the middle days of the AIDS epidemic, having come out of psychiatry into alcoholism and addiction and then AIDS. Not that he had them; he was interested in them all and a very smart guy. He found that this naltrexone was an opiate agonist. In other words, it acts like an opiate thing, like opium, like narcotics, but it acts like it in a way that it talks to the receptor site that then gets the immune system to be more alert. He had demonstrated in the AIDS model, the effectiveness of low dose naltrexone. Usually naltrexone, if you're going to the emergency room and have a heroin overdose, you get a shot of the 200 mg or something like that to counteract the opium or the heroin. We are talking about 2 mg or 2.75 mg. It is a whisper, a subtle thing, but it awakens an immune response that is all through the bodies, not to the allergy chemistry so to speak or the immune chemistry, but the “What's going on in the world and how should I respond to it?” kind of thing. That is stored on the pain side, but it does not have anything to do with pain or relief of pain. It’s just to signal that whole system that have to do with endorphins. It is a subtle trickery, those little messages in what’s called the endorphin chemistry, which is very much involved in stress and responding to stress. He validated that this, as measured by the lab tests of T cells and all that, that it worked and made. That means that if it worked that model, it would probably work in lots of other models. It’s just that AIDS is a really bad thing and if it works there, then that's okay well now we know it really works. With this in mind, I personally did not really catch on to the idea that it was something that might be useful in autism. Jacqueline McCandless, pediatric neurologist who joined our tribe along the way, came up with this and she studied it and worked with it intensively to show how effective it is. These are not treatments for autism. These are treatments for children who are in the spectrum. The spectrum goes off in all different directions so that there some things are working in that part of deal and some in another. Some tool like Autism360 should be able to help us find more quickly.

Dr. Schwartz: To assess where the value is so parents can match up their child with what works for someone similar.

Dr. Baker: We wish we had more funding to get that stuff done.

Dr. Schwartz: Okay. Well, I’ll emphasize that.

1:00:00 Antifungals for Yeast

Dr. Baker: The most important, in terms of the treatment side, the most important thing that I have felt has been key to the big success stories that I've had, like the little girl with the eczema. She took nystatin, which is a medicine that is completely safe in any dose when taken orally, doesn't go in your bloodstream, even if you have a leaky gut, still doesn't do any harm and it kills yeast. It doesn't do anything else. I caught on to this through the teaching of Orient Trust in Birmingham Alabama 1977. It became something to try on just about anybody with a chronic illness. If you came here and measure the UPS guy, you're going to get a trial of an antifungal medicine. It is a trial.  It’s not a treatment. It is a test to see what happens. By doing this, you see a die off reaction in people where the germs die. They release their toxins and things get kinda crazy for a while. Give some activated charcoal, some Alka-Seltzer Gold. Things get better and they say “Okay, I see we are in the right ballpark. Now we have to learn how to play ball.” That antifungal treatment is something that I became quite attached to as a way of testing to see if we're in the right ballpark. I must say, because the whole idea of an antifungal treatment for something like autism strikes many normal people like weird. Doctors, who are apt to keep their license, don't want to do things that are weird. Many of my colleagues and seeing their patients later on, they would say “We’ll give some nystatin for a month and that will take care of the yeast problem” I am here to say, this is important to say because I don't think there other people saying it and yet I know it's really true, that if you have a person and you suspect a yeast problem, and you don't know where to draw the line there, but certainly if a kid's had a lot of antibiotics, which is most kids, and certainly a kid who had antibiotics and then an immunization and then sort of lost it, if you suspect a yeast problem, then you have to find out. Sure, it is good to find out if it's in your poops or if you have the molecules to come out in the urine, but even without that, the thumbs test is a way to do it. If you have a medicine like nystatin or another one just like it called amphotericin B or another one which is also completely free of risk is Saccharomyces Boulardii, a kind of probiotic.

1:03:33 Using Very High Doses

Dr. Baker: You need to give those in very high doses, work up to it, but there are two questions that are involved in this strategy. One is, how long would it take to work? The other one is, how long do you have to do it before it's not working? Because when you walk away from them, well, we thought it was a good idea. We’ve given in doses of 16 pills a day for 20 days and nothing happened. So we know for that one, high dose does not seem to doing anything. But that's a key question. It is really important for people to keep in mind that there is a difference between, how long will it take to work, which usually means two weeks for most things, except maybe a gluten-free diet, that would take longer, but most things work pretty quickly. About how long you take it before you know it's not working? That's a trickier question. In treating people with serious illnesses of all kinds, by pushing the dose up very high of these things that are safe to give in very high doses, I've seen it breakthrough over and over and over again in people who had had an inadequate trial. It changed the whole landscape and opened the door to healing. That's, I think, a message for parents who obviously want to do the best thing for their kid, to say the obvious, as we all do, sometimes it takes courage to go with very high doses of things and it doesn't take that much courage, because the risk is really zero. You may run into big die off reactions, but is not to harm you. That's such an important thing. The yeast problem has to do with the germs that live in the digestive tract called microbiome.

01:05:28 Microbiome

Dr. Baker: The microbiome is all the germs that are in the digestive tract. Something wrong there is what's wrong with most people these days in modern civilization. There is a deep understanding now. It's emerged in the last 10 years, that something wrong here is really driving problems in the immune system that cover a lot of different diseases. I got onto this 1977, so I had a lot of experience with this kind of thing.

Dr. Schwartz: Way ahead of the curve.

01:05:56 Autoimmunity

Dr. Baker: I have been doing this for years. Over and over again, I see people who respond well, these are grown-ups and children of all of the kinds of problems do huge doses. You get up to the height and you breakthrough and you back down and see what's the lowest dose that gives you the best response. That’s one thing. What's happening in this microbiome thing, is something we call the loss of immune tolerance, which has to do with your immune system capacity to tolerate all the different particles and things and odors and stuff that you come into and what you breathe and eat and are exposed to in various ways. It's all different from you and your immune system keeps track of what's you and what not you and tolerate those things that are not mischievous. If it loses that tolerance, all of a sudden things that are Dr. Schwartzally okay and your immune system doesn't go crazy over and, cause a rash or throwing up or getting itchy or having an autoimmune problem. If your immune system loses that, then you get some kind of a chronic illness. That loss of immune tolerance then accounts for basically all chronic illness. This is not coming from me. This is coming from the 72nd floor of the ivory tower. Yehuda Schoenfeld, no doubt about it, the top immunologist in the world. Now in a world of competing egos, it is hard to imagine that any one guy could be the top, right.  He is up there. When I first met him, when we are both a think tank together, and he starts up. I didn't want to go to the think tank. I thought it was about autoimmunity and I thought, “Aw, that's all those doctors that just want to give people prednisone”, but I went to the meeting I'm really glad I did. I got Sudhir Gupta to come with me, and who is there, but Yehuda Schoenfeld. He opens the meeting with a talk and his first words are “Until proven otherwise, all chronic illness is autoimmune”. This is the quote from the first page of his book Autoimmunity and Infection. The next sentence is “If you read the 52 chapters in this book written by experts in immunology and infectious disease from around the world, you will come to the conclusion that all chronic illness, all chronic illnesses are infectious, including autoimmunity. He puts together this sandwich in which the bread on top is autoimmunity and the bread on the bottom is the microbiome. When there are problems down here in the microbiome, it causes problems which are the germs. He's talking about infections. He is talking about all kinds of germs. The consequence up here is that you get autoimmune problems, which is inflammation. This really is just the flip side of allergy. Autoimmunity is you’re allergic to something inside. Allergies are you’re allergic to something outside. In this one short paragraph, Schoenfeld gives an whole view of the nature of chronic illness in which we can say that loss of immune tolerance is really what's wrong with everybody when they are living in the world that we live in, where everybody has allergies and autoimmune diseases which are on the rise.

Dr. Schwartz: Rapidly increasing.

01:09:39 Parasites and Autoimmunity

Dr. Baker: When I was in Africa for two years and taking care of Africans who lived in Chad, which is a very poor country of people.  I don’t want to glorified poverty, but they were beautiful people. If you want to find people with beautiful skin, beautiful hair, and beautiful teeth, beautiful everything, just get out there.

Dr. Schwartz: They do not have allergies.

Dr. Baker: And they don't have autoimmune diseases. This is but there's a long story, but it became known that this is true, that the incidence of auto immune disease and allergies is absent in such populations living the old-fashioned way. What was it about them that was old-fashioned? Was it the water? Was it the land? Was it the genetics? Was it the climate? It turns out it was they have living in their digestive tracts organisms that had been part of their microbiome since before humans were humans.

Dr. Schwartz: That they've adapted to that…

Dr. Baker: They didn’t adapt to that. The organisms adapted to having a human around them. The organisms were there first. They were part of us from the very beginning. In medical school they call them parasites. Parasites, eww, parasites, you see pictures in books and those are really yucky. But it turns out that a little bit of those things is Dr. Schwartzal in human beings. Like anything, too much of something can cause trouble but when a team from Johns Hopkins Medical School came through Chad when I was a Peace Corps volunteer. They went running around in their Land Rovers and didn’t talk to anybody, but they collected blood and got out of there as quickly as they could. They found that you go into a village, such as ones that I was working in, and they took blood noontime from everybody in the village and everybody had malaria parasites in their blood at that time.  They were all walking around fine. They all had all kinds of parasites. What we were calling parasites in their poops, all kinds of things and they were perfectly fine and they had great poops. It turns out, sure some people got sick with these things and I’m not saying that malaria is such a great thing, it is a big killer, but there is a capacity to sustain it and enjoy perfectly good health.
Dr. Baker: Coming now to the loss of immune tolerance, when people in a culture like that do not have autoimmune or allergic disease. In two years I didn't see any patients with an autoimmune disease or an allergy, except Europeans. In the United States we don't have those things. Children have some pinworms, and sure they’re a pain in the butt. I'm not saying that any parasite will do this or any, now we call them, a mutualistic organism. An organism that belongs in us and we do for them and they do for us and it's a deal. There are certain mutualistic organisms which restore immune tolerance; because they are like other things we call parasites. They are enough like it so that they have the smell, or the whatever it is, for the immune system to say “Oh, this is cool.” The immune system has been used to having them for the 500 million years that we've been humans. A few years ago, less than 15 years ago, Joel Weinstock, a professor of gastroenterology University of Iowa, proposed an experiment in which they would give the eggs of a certain type of worm, called a whipworm, to people with ulcerative colitis to see what happens. It was based on the fact that people who are farmers of pigs, which have whipworms, didn't get autoimmune diseases. There are a lot of other things like the difference between people in Africa and the people here. So the different converging lines of logic.

Dr. Schwartz: Very interesting.

Dr. Baker: So, he said “Let's give the pig whipworm eggs from pigs to a few of these people with ulcerative colitis and see what happens.” I headed a lot of experiments coming up to this. As you can imagine, the whole idea, this is not the thing that scientists talking about ethical research want to hear. You're going to give worms to people and we all know that worms are like really bad. It all got done. God love the people in academics who have the patience to go through this, a lot of it be B.S., to get their job done, but he did it. 50% of the people who, knockdown drag out and you're going to have a colostomy here in another week, got cured from exposure to these pig whipworm eggs.

Dr. Schwartz: And no drug could do that.

Dr. Baker:  No drug could do that. 30% more were better, no colostomy and other 20% it didn't work. You don't need a statistician to say “Like that really worked.” Now when I heard this, because I was savvy about this as I've been in Africa tracking this whole thing about the effect of the microbiome and chronic illness, I thought “This is really cool, but where my going to get pig whipworm eggs to give my patients?”  Then pretty soon, out of Germany you can order them. They’re made in Thailand and I began seeing kids who responded just amazingly, just a miracle.

 

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