Part I: Maia Kobb Dowe
Maia graduated from Russell Sage with a Bachelor of Science in Nursing. Upon graduation she took a position at the New York Hospital / Cornell Medical Center (now New York Presbyterian Hospital) where she worked in the Burn Trauma Unit / ICU becoming a Charge Nurse after 1 year. Working on the Burn Unit, she became interested in research and subsequently worked with Johnson & Johnson as a Clinical Research Associate, in Medical Immunobiology, where she stayed for 15 years, moving to Quality Assurance and Training for Clinical R&D.
Maia is the mother of a 22 year-old son who is recovered from Autism. He is now a senior in college, an Honor student in Physics, and an accomplished jazz guitarist. He has many close friends and is a charming and compassionate human being. Her son was diagnosed with Autism Spectrum Disorder at age 2 1/2 in 1993 — before the Internet, before the DAN protocol, and before people were really making the bio-medical connection with the Autism as a significant piece of the puzzle leading to the cause and the cure for Autism. Understanding the biology behind the disorder, and remediating her son’s developmental deficits piece by piece, bit by bit, became Maia’s all-consuming life’s passion.
PROGRAM TRANSCRIPTION PART I:
Caryn Hartglass: Hello. I’m Caryn Hartglass, and you are listening to It’s All About Food. It’s September 25, 2012, and here we are in the studio in Manhattan, New York. It’s a beautiful day. The air is fresh, the sky is clear, and it’s really lovely to be alive. So, I’m thankful for that.
So much in the news about food. I just wanted to mention a few things: Arsenic in our rice, and genetically modified organisms in our corn that are making tumors in rats, and who knows what else they’re doing. All these things are exploding this week in the news, and the question is, where can we go to get food that is not only good for us but not contaminated with things we don’t want to eat? Honestly, I don’t know that I have the answers because everything is connected on this planet, and when people are doing things in one place, it affects our water, it affects our air. The best that we can do, and there are a few things: One is we can buy from farmers and stores that have organic produce, but in this latest study that came out about arsenic in rice, we know that even organic rice is affected. So that’s kind of daunting. In addition, and I always like to say this because I think this is really important, even though it may seem very undocumented and trivial, is that whenever you eat and whatever you eat, enjoy it. Don’t worry about it when you’re eating it, and tell your body to take the good from the food, and leave the things that aren’t good for you out and let them pass through. Just let your body know that, and it will listen. We have really powerful minds if we use them correctly. So don’t panic, but certainly, if you have an opportunity, write your congress people. Let them know that we don’t want to have arsenic in our rice, and how do we do that? Well, we stop using toxic herbicides and pesticides in agribusiness. We get rid of factory farms because they are giving arsenic to chickens because they are unhealthy, and the arsenic kind of keeps them going until they are slaughtered. Then there is arsenic in their excrement and that is used as manure which is put on all the fields growing all the plants, and that’s how the arsenic gets into the ground, where we don’t want it.
Okay, so, that’s just a little bit of food for thought to get started, and now I want to bring on my first guest, Maia Dowe. She graduated from Russell Sage College, and she received a Bachelor of Science in nursing. When she graduated, she took a position with a New York Hospital, Cornell Medical Center, which is now New York Presbyterian Hospital, where she worked in the Burn Trauma Unit, ICU, and became a charge nurse. After that she worked with Johnson & Johnson as a clinical research associate in medical immunobiology. She worked with J&J for a total of 15 years in Quality Assurance and Training for clinical R&D as well. What we are going to be talking about today is what she experienced while being the mother of her son who was diagnosed at a very early age with autism, and this is a really fascinating story. I think we have a lot to learn from it, so let’s just jump right in. Welcome to It’s All About Food, Maia.
Maia Dowe: Thank you, Caryn. It’s really wonderful to be here today. Just listening to you speak a little bit in your intro about toxicity in food brings me back. My son is actually 22 years old, now, and he was diagnosed with autism spectrum disorder when he was only 2 1/2, and that was back in 1993. So, there was no internet, we’ve talked about this, and autism wasn’t blown wide open like it is today. We didn’t know everything we now know about food, about gluten, dairy, and large proteins that get in the way of the immune and mental processing for children with autism.
Caryn Hartglass: Even with the internet and everything that’s available to us today, there are so many people that don’t have this information, and many people struggle with autism. Now, how did you know that your son had a problem at 2 1/2 years old?
Maia Dowe: Well, you hear so much about children where they had, pretty much, normal/ typical development until the age of two or three and then started to lose their words and their functions. In our case I think there was potentially some toxicity or an environmental viral trigger, maybe, going on much earlier because by the time Brian was one, it was clear to me that something was a little different. He had trouble crawling. He had a couple of words leading into age two but never put two words together, which is one of the things you do look for. By age 2 1/2 he had lost that. I was working, and he was in a nursery program. He was not interacting with the other children, not following directions, kind of going off by himself. The reason I found out at age 2 1/2, even though I was suspecting things, which my medical doctors were not supporting, my older sister, believe it or not, who had three boys of her own, came to watch my son over Christmas, and she made the observation which she shared with me. This was a lucky thing because when you have a child with autism, the sooner you know and the sooner you start limiting their foods and giving the right supplements and right behavioral teaching, the better chance you have of helping them.
Caryn Hartglass: Early diagnosis for everything is so critical, and it’s all about paying attention.
Maia Dowe: Exactly.
Caryn Hartglass: So, then what did you do?
Maia Dowe: The most important thing was to get a full, what they call, differential diagnosis by a hospital. In our case, we already suspected autism. I live in New Jersey, and there are, in the Princeton area, a couple of very well-known and expert programs in autism, and so we brought Brian directly there to Eden Institute. They did an observational diagnosis where they are trying to interact with the child, watching his interaction with the parents, and then doing some very specific, problem solving, coordination testing. Mostly, it was the connectiveness, and he didn’t have language, and I guess that was the biggest thing. He avoided eye contact, he didn’t have language, and he would scream because he couldn’t communicate.
Caryn Hartglass: Now, did you see a difference, because at 2 1/2 years old it’s really hard to know, but do you think there was something that triggered it, an event, and could you, maybe, tell a difference. I know when kids are older and they have already started to develop, their parents see an on-off difference. Their child just changes, they are never the same, and they try to figure out what it was that triggered it.
Maia Dowe: In my case I’m not sure if it might have been the oral polio vaccine. My son got a second dose of it, and I did see more of a regression following that. Also, I was always watching children at the park, watching the way they moved, used the swings, their motor coordination, eye contact and connectedness, and although my son was always very cuddly and there wasn’t that missing piece, those other things were never what they should have been. He was very sick from a very young age and had a lot of problems with digestion. He was breast fed, but at times when my milk supply wasn’t the best, we tried infant formula and he would projectile vomit the formula. He had a lot of chronic diarrhea as a baby, and so I think there was a digestion absorption problem going on from the get go. So, maybe our story was a little bit different because of that, because you need those proteins and nutrients in order to develop proper neurological function.
Caryn Hartglass: Autism is a word that is used all of the time today, and it covers a wide range. There is no blood test for autism, so it is a subjective kind of diagnosis, and people don’t always fit into a particular mold. I think this is because there is a lot more to it. We may attribute autism to a lot of different problems, and there may be more than just one or two to three or four things, but a lot of different things. It’s convenient, in some ways, to be diagnosed as autistic because then you can benefit from some state aid with schools and help. So, some parents may want to have this diagnosis for their children. We still don’t know a whole lot about it, and I think many different things could have triggered some of the symptoms that your son had. That’s what makes it so hard to figure out what to do about it because there are probably many different causes. Some people believe it’s vaccines, even though the scientists are trying to dispute that all of the time. I’m fascinated with this concept that the eggs in our mother’s womb were formed in our grandmother’s womb so that our DNA started two generations back and could have been affected by so many things a long, long time ago. So, it is really hard to keep track of what might cause developmental problems.
So, you were on a path, and you did a lot of different things. So, what are some of the key things that you did that helped?
Maia Dowe: I do want to say that we followed the theory of autism being multifactorial and that there were many different things contributing to the problem. So in order to heal a child you have to look at it from many different angles as well. So the first thing we did was to put my son into a one-on-one behavioral teaching program. He was very fortunate to be accepted into the Douglass Developmental Disabilities Center at Rutger’s University in New Jersey, and he was in their outreach program almost right away. That early intervention everyday makes a difference because there is that window. Even though we now know that neuroplasticity exists well into adulthood and all of our lives, the brain is much more plastic between the ages of two and five. That is a window for recovery, re-teaching, and establishing that connectiveness. In our case, because I worked in medical immunobiology and I was looking at all of these various studies in my work, I started to see some parallels with certain immune deficiencies and what I observed going on with my son. Low and behold when we had him tested, he did have immune dysfunctions. So, the other piece was that it was very difficult for him to gain weight. We found a connection between wheat and dairy before the big studies came out of Scandinavia, establishing the connection between wheat, gluten and autism. The way we saw it, Caryn, was that he would wake up in the morning and he would be the best he was all day. As soon as he would start putting things in his mouth, it would be downhill from there. If he got a bagel with cream cheese, one of our favorite things to eat in my family, he would start spinning himself in the middle of the floor, toe walking, kind of going off more into his own world. So in a certain sense, it was very obvious, even at two, that something in the food he was eating was, at the very least, making this problem worse.
Caryn Hartglass: Good for you for paying attention. Most people don’t. We see such subtle things like, teachers probably know this, when kids have birthday parties in their classroom and the parents wanting to celebrate bring in cupcakes and candy. Then afterwards they leave their children in the hands of the poor teachers who now have to deal with this sugar overload and the behavioral changes in the kids.
Maia Dowe: Then people love to say those don’t exist. Yet those of us who are observant know they do.
Caryn Hartglass: Yes, absolutely. Okay, so you found this connection. Now what is this leaky gut thing that happens? Can you talk a little bit about that?
Maia Dowe: Yes. So it’s hard to know which comes first, the horse or the cart. Does the leaky gut come first and then you have the problem with the gluten, dairy, and other large proteins, or do the large proteins assault the gut lining and then you have this hyperpermeability. I believe, in my son’s case as this was observable almost from birth, that it had to do with toxicity. I ate a lot of tuna fish all my life, almost everyday when I was pregnant, so I think I had a high mercury burden myself. I know there is a lot of controversy surrounding Thermisol, the mercury preservatives used in the vaccines 20 years ago and in almost all of them when my son was diagnosed. I do believe that the toxicity from our environment is disruptive to the gut lining. Children that are experiencing this are having those large molecules get through the leaky gut and they circulate as toxins to the nervous system, neurotoxins, and to the immune system. These kids tend to get sick a lot. They are on a lot of antibiotics that leads to fungal overgrowth and an imbalance of the friendly bacteria in the gut, and it just goes on and on and on like a snowball making everything worse. So for a parent to try to unravel all of this, it is a lot of pieces to put together, and it’s not easy.
Caryn Hartglass: The thing about the wheat and dairy for a lot of people, I think, they just don’t believe it will work. It takes a tremendous amount of effort for parents raising a child to monitor that and make sure they keep, what they aren’t even sure are problems, out of the diet.
Maia Dowe: Right. It’s hard to commit to something that is so difficult to do when you are not sure, really, where it’s going to get you and your child regarding improvement in their communication, their eye contact, and their ability to learn.
Caryn Hartglass: The other thing with autistic children, I understand, is that they are finicky eaters.
Maia Dowe: You are so right. They are amazingly finicky eaters, and the reason for this is because they have a hypersensitivity to touch, the texture of the food, and it relates to their processing problems. There can be a hypersensitivity to sound or, what we call, tactile defensiveness, to being touched on the skin, and it is the same thing with the textures of food in the mouth. One thing I can say is that it is so worth doing, and it is so much easier to do today, to eliminate the gluten, which is the protein in the wheat, and the casein in the dairy. These products are available in Shoprite and everywhere you go. I was sending away for brands from Canada about 20 years ago. When the children are little, if you have the luxury of having a child who is diagnosed early, it is so much easier to control them. The hard thing is when they go to school and they are out of house. They feel different and see other kids having things that they can’t have. One thing, since I know we don’t have a tremendous amount of time, I do want to get across to parents is that if you try the GFCF diet that is widely known about in the field of autism now, please be aware of the following: When you have a leaky gut lining which means large molecules are getting through the intestinal lining which shouldn’t be getting through because that semipermeable membrane is now more wide open, more permeable than it should be like a sponge that is wearing out, be aware that if they can’t break down one large protein like gluten, for instance, chances are they can’t break down a lot of large-chain proteins. So you tend to see a better result if you can take all of them away at once, and so by that I mean soy, corn, eggs, any large molecule that you know about. That part sounds harder to do than it is because now, with all of this awareness, you can find cookies, shakes and drinks that will say on the label no wheat, dairy, corn, soy, eggs.
Cary Hartglass: The top allergens.
Maia Dowe: Right!
Cary Hartglass: So it’s easier now, but there still are a lot of people struggling for some reason. We all need some sort of “Spock mind meld” or something so we can all come to the same place at the same time. A lot of doctors don’t know these things, as well, and certainly a lot of parents don’t know about this. A lot of parents struggle financially and with their jobs, and how much time do they have to look on the internet or do research. So it can be really overwhelming. I’m sure your nursing background helped you a lot in understanding what you were reading and where to go to look for information.
Maia Dowe: It did help me a lot. I was very fortunate, not just in my nursing background, but in the job I had at the time in clinical research with Johnson & Johnson where I was lucky enough to be exposed to information that made me wonder if this was a factor for my son and to look into it. One of those things was digestive enzymes, for instance. I was looking at a study with children with cystic fibrosis who were taking digestive enzymes because they didn’t make them and were digesting food very well doing that. So I sought out enzymes for my son, and now we know that anybody that doesn’t digest and break down foods well can be helped by taking enzymes with their foods so that you can get those smaller building blocks that our bodies need to make things like neurotransmitters, antibodies, or hormones.
Caryn Hartglass: An interesting thing is that nature is smart in that nature has figured out a lot of things for all life on earth, and she has figured out what humans need but we’ve kind of gone in our own direction and reconfigured things so that we are eating all of the wrong things. So I find that a lot of things that work for one chronic disease or one illness will work for another. That is the magic of this plant-based diet because when you eat it you are reducing your risk significantly for all the chronic diseases. The diet that works for cardiovascular problems works for diabetes, works for cancer, works for multiple sclerosis, works for all the autoimmune diseases. It works, works, works, and a lot of the nutrients we are lacking are because we are not getting it from our food like we should. Right now vitamin D is the sexy vitamin because everybody is saying it prevents this and that and everything else, and everybody works indoors and we are afraid of skin cancer.
So what supplements were you giving your son?
Maia Dowe: I brought my son to nutritional doctors, and it was very difficult in the beginning, 22 years ago, to find physicians who were interested in being a pioneer in this area with children with developmental disabilities, but the doctor who has been with my son for 13 years and really made one of the biggest differences for us is Dr. Kenneth Bock. He is up at the Rhinebeck Health Center. Dr. Bock practices integrative medicine, and I think he actually was the president, or head, of the Integrative Medicine Association for a number of years. What is good about that is that when you have a child that is dealing with a critical situation, sometimes you need to get a bandaid on it, and that bandaid can be a pharmaceutical or a dietary change that might mean we do have to include certain things for a while that ultimately you wouldn’t want. So I had a lot of medical guidance for Brian, and got many of his supplements directly from his doctors, but I love Kirkman Labs. They are based out of, I think, Oregon, and they have many special supplements that have been specifically designed for children with autism, developmental disabilities, children that can’t have wheat, dairy, and many of the allergens. They were one of the first companies to come out with an enzyme called dipeptidyl peptidase-4. We like to call it DPP-4 for short, and this is the enzyme that many children with autism and related disorders don’t have and don’t make well themselves. You take this enzyme with food. You can open the capsule and sprinkle it on the child’s food. That way they are not developing these, what I call, intermediate break-down products. For instance, when you eat wheat and dairy together and it’s broken down only half way, that forms a morphine-like substance called casomorphin, and that can make you completely disconnected with brain fog, hard to concentrate and all those other things.
Caryn Hartglass: Pizza!
Maia Dowe: Exactly! Pizza, macaroni and cheese, cereal and milk, like what do kids love to eat? So, it is putting them in this fog almost all the time, and the actual reaction from the gluten can be a delayed reaction, so it can be hard for parents to observe. So it is important to take those enzymes, and it is such an easy thing you can do. You want to avoid wheat and dairy as often as possible if you are trying this diet approach, but sometimes with kids you can’t or it is hard, and that’s where the enzymes come in. They help tremendously, and they help to break down the food into usable subsets that their bodies can regulate themselves naturally the way they need to do.
So, I know I’m getting off on a tangent, but I just want to say even though my son was in one of the best one-on-one programs–teaching the applied behavior analysis, ABA, which is the standard one-on-one therapy–as we began to unravel the medical side of the autism, clean up his diet, and heal the leaky gut, he became so much more teachable. So, instead of running a program 500 times, we could run it 15 times or 5 times, and he would have it. He could generalize skills easier. So, I just feel that the idea of a puzzle piece being a symbol for autism is so perfect, and we need to use that to remember that there are many pieces to this puzzle.
Caryn Hartglass: And the more you put it together, the easier it is solve the rest of this puzzle.
Maia Dowe: And, each time you put a piece in you don’t take it out when you look for the next piece. All of the pieces have to stay in. I’m doing my one-on-one teaching, I’m taking those large proteins (wheat and dairy) out of the diet, I’m adding enzymes. At the same time I’m doing some vision therapy, if the child needs it. My son had trouble with every processing system. He needed auditory training, and as he got older and he was declassified, actually, from his primary diagnosis of autism at age 7, he still had residual processing problems with vision, motor coordination, and processing auditory directions. So, what you need to know is to keep adding those pieces in and doing those therapies, but don’t take the other pieces out. Don’t forget what got you to that point. You have to maintain the diet.
One thing, I don’t know if we have time to talk about it, is toxicity.
Caryn Hartglass: Sure, just briefly.
Maia Dowe: So you were talking about eating a clean diet, vegan diet, and this is where it is difficult for children that have textural problems, but I’ve seen so many great recipes you have for making juices, and you can actually make fun cookies gluten-free and add vegetable juices and other good nutrients which is a wonderful thing to do. You also want to be careful to avoid the processed foods that have so many additives and toxins in them. Not only that, but we need to be aware of toxins on our skin, products we put on our children’s skin, and what’s in our water at home.
Caryn Hartglass: There is a lot to think about, and it all matters.
Maia Dowe: Right, and it is so far reaching, but you need to be aware of toxicity and just eating clean and close to the earth which really helps these children so much because it is hard to be reading the labels on every single thing.
Caryn Hartglass: Right. The good news is that your son has done very well. He is an honor student in physics and a senior in college. He is a jazz musician, has many close friends, and he is doing well. So I congratulate you for that.
We are going to take a break now and we will be back with my second guest, and, Maia, stick around and you can join me in the next half. I’m Caryn Hartglass. You have been listening to It’s All About Food. Check out my web site ResponsibleEatingAndLiving.com where you can find a lot of information, and send me an email at info@RealMeals.org
Transcribed by Ann Dungey, 2/17/2013