Multiple scientific studies have made a connection between the gut microbiome and the brain in autism spectrum disorder (ASD). Although the line connecting the two is not a straight one, there’s really nothing to be lost – and potentially a lot to be gained – from changing the diet in a way that can improve the diversity and composition of the microbiome in ASD. Learn which changes have the biggest impact.
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Today we’re continuing the series on the gut brain connection. Specifically, how what is going on in the gut can affect what is going on in the brain. I’m delighted to have my friend and colleague as our guest. He’s a physician and a surgeon. I’ve literally known him since childhood and he’s going to be sharing his experience with autism spectrum disorder, which is really personal for him. Tell us why:
So thank you very much Dr Chutkan for having me here. I have a son – my first born son -who is autistic. He was diagnosed at age 3 and is now 20 years old, and we have been taking care of him, of course, all his life, since his diagnosis. He has a diagnosis of a regressive form of autism, which means a child who showed initial normal signs of development only to go backwards instead of forwards in their early years. He is non-speaking, which is the term we use now (we don’t say nonverbal anymore), and he types to communicate.
We’ve known each other since we were children, and we ended up at Columbia Medical School together, and we ended up practicing in the same city. I remember when you first started on this journey, and it has been incredible to see what you’ve been able to achieve. Your wife is also a physician and what the two of you have done is just incredible. But I want to start from the beginning, and I want to also point out that diseases like autism spectrum disorder and autoimmune diseases are complex. They are multifactorial; there’s no one smoking gun. So we’re going to be exploring the gut-brain connection as you have experienced it, but I just want to make sure that people understand that in no way am I trying to say that the gut is responsible for autism and healing the gut is the only way to approach this disease. But I think your insight over the last two decades is invaluable. So can you take us back a little bit with your son to when he first started to develop symptoms?
He was born with normal Apgar scores, which means that when he came out of the womb, he appeared by all intents and purposes to be a completely normal child. The first sign that we saw that maybe there was something a little bit wrong was in terms of language development. When he went through his first year, he was not combining words – he had single words. And so of course we did what a lot of parents do, which is we started teaching him baby sign language, which is a variation of ASL – American Sign Language, shortly after his second birthday. However, we noticed quite a few things. There was some inability to hold joint attention. He wouldn’t respond to his name. He was hyperactive. He wasn’t sleeping, and sometimes having night sweats. So this is when we knew that we had a little bit of an issue on our hands. And then of course comes gut issues. He never progressed from having liquid stools to normal formed stools as a child should progress. His stools were also very runny, and they were rancid, they were yeasty and that’s how we knew we had a problem. So we finally got the diagnosis when he was about three years old.
I really want to home in on that point about the stools because I’m a gastroenterologist and I can tell you that stool is not supposed to smell great, but it is very clear when something is off with the stool. If I walk into the emergency room for example, and somebody has rotavirus, I can smell that rotten egg smell. Blood in the stool – known as melena – smells horrendous. So your stool smell is an important clue that something is off and usually something is off with the microbiome because stool is in large part dead bacteria. So that’s a sign that something was going on, and you mentioned that the stools were loose, they were liquid, they were foul smelling. How did you interpret that?
Of course your stool is reflective of your diet, and at the time he had just come off breast milk and formula and we were starting him on solid foods. Initially we thought there’s certain foods that just don’t agree with him. But as the problem persisted and did not seem to be getting any better, we figured that there was something more complicated going on with his G.I. tract. And he also seemed to be in pain a lot of the time as well. Some parents may notice that with their children, and that’s how we knew that there was a specific issue. When we finally got the diagnosis we moved fairly aggressively to adjust diet and remove certain things such as dairy, wheat, and gluten. Once we got the diagnosis, of course we delved into a lot of research, we spoke to certain doctors and colleagues. We were told that children with autism have a problem digesting certain foods that are rich in casein and gluten, and of course sugar. Casein comes from mostly from dairy sources and gluten is ubiquitous, especially here in the United States. A lot of the foods have gluten in them – including some of the things you didn’t think would have it in there.
Were you actually getting that direction from the medical community? Or was this what you and your wife were researching? Were the doctors who were taking care of your son telling you high sugar, gluten, dairy, these are the things to watch out for?
So full disclosure: my wife is an integrative medical practitioner, so she was way ahead of the game in terms of researching on her own and reaching out to colleagues across the country about this particular problem. So she was getting most of the information with regards to the diet. Some people may hear from my accent that I’m from Jamaica. In the Caribbean we don’t have as much food processing, so I had always said that we should clean up the diet of the child to see if that would help him. So it was a combination of the two; my wife did a lot of research, and we were fairly aggressive with the dietary changes. And the differences were dramatic when we pulled certain things from his diet. His behavior, his hyperactivity, sleep patterns, would all improve. But the stools continued to be a problem. It took several years for the stool to normalize and the gut to heal. Anyone who is listening to his podcast, don’t think that if you change the diet things like overnight you’re going to see a change. Of course every patient is different. I think that’s an important point and there are situations where a dietary change works quickly, but that wasn’t the case for us.
We’re just on the heels of my gut-skin series where I talked about eczema and for some people with eczema, like my husband, after two weeks of eliminating gluten his eczema really started to heal. But when we’re talking about a disease as complex as autism spectrum disorder, and we’re talking about inflammation in the brain, that is typically not something that is going to dramatically improve in two weeks, and I think that’s an important point.
So we’re talking about a decade here; several years. I’ve coined the term “complex food allergies”, which are food sensitivities, which are having not only effects on the motility of the gut and the production of normal stools, but also behavior, as well as sleep patterns, the ability to focus on things. Anytime that somebody is intoxicated with a toxin, it’s going to take a while to eliminate it from the body, and each patient is going to do it at their own pace. Children of course, nowadays a lot of them are very hyperactive, and a lot of them refuse to take certain diets. A lot of them refuse to change their food and that can become a challenge for the parent.
It’s a huge challenge and we’ve talked about “food avoidance syndrome”. Diet is still the factor that has the most profound impact on the microbiome and when you’ve been feeding a population of bacteria certain food, and you’re trying to change what’s going on in the microbiome, you have to change your food. Without changing the food, that less desirable population of bacteria is going to continue to grow, and as we were discussing earlier, it is often that population that drives the person to that problematic food. We see it with sugar. I mean there’s that dopamine hit, but you also increase the population of the sugar-eating organisms in the gut, and they send you in search of more sugar. We know that bacteria can change the palate. They can really drive behavior. Were there any tips that you found as parents with getting your son to accept the vegetables or the foods that are not as sweet and less palatable to him?
So we were very lucky. Our son loved food, and he would eat just about anything. There were a handful of items that he didn’t like because of the texture. I know a lot of parents struggle because their kids will only eat one thing so luckily for us when we started adjusting the diet and removing certain things from his food chain, he didn’t really rebel that badly. He would eat pretty much whatever we gave him. I know, however, for certain families that it’s almost an impossible task if they try to change the food. The child melts down or they won’t eat at all. It becomes very stressful and it raises the tension level in the home. But we did the adjustments we had to do and luckily for us he adjusted. But I want to make it clear that even when he adjusted it still took years for his gut to really heal, for his stools to become more typical or normal, for his eczema to fully clear up, and his cognition to improve.
So when did he develop the eczema? Was that part of the initial diagnosis?
Yes, we noticed that in the inside of his arms he would have rashes that he would scratch, and it would be so bad he would bleed. His brother also developed a similar condition, even though his brother is classified as neurotypical. So yes, we saw wicked rashes on him, especially in the arm areas and sometimes the groin. And it was part of the whole initial assessment. I just want to make this clear though: even though we’re both physicians and went to fancy Ivy League schools, we panicked just like every other parent would panic when you’re told that something is wrong with your child. So yes, we bought plane tickets and flew around the country. And yes, we listened to all kinds of stuff on the Internet, and we did all of the things. We spent huge amounts of money on treatments we weren’t sure were going to work. So I come on here on your podcast and sound kind of controlled and everything, but we went through a lot of the emotions the average parent would go through when they’re told that something is wrong. And it took a lot of time to get it right.
Thanks so much for mentioning that! I think that is so critical because the worst sensation you can have as a parent is watching your child struggle and feeling helpless, like there’s nothing that you can do. Or sometimes equally as bad; that there is something you can do but you can’t get to it – either because they are rejecting it, or it’s not available. I really appreciate you talking about literally decades of getting to this place – trial and error figuring out what worked and what didn’t, and really sticking with it. And also the fact that you’re both very distinguished physicians, very well established in the community, very experienced. And so you have this additional insight and you’re able to experiment. I always want to point out that this information is not meant to be medical advice. This is educational. Whether your child struggles with a condition like autism or something else, whatever you are doing, dietary change, medication, etc. should ALWAYS be done in consultation with your healthcare practitioner. I know there are lots of people out there who are frustrated because their medical practitioner doesn’t seem interested in anything other than medication. I want to advise you to just keep trying to have that conversation – and make it a dialogue not a monologue. Really try and open their eyes and bring them research. Because it’s not medication OR diet; It’s both. it’s all the tools in our toolbox. So getting back to diet and tools in your toolbox; you changed the diet primarily focusing on 4 things: dairy, gluten, sugar, and phenols. In terms of stool, did that start to improve first, or was it the skin? And what about the cognition and his joint attention?
There was a sequence – it was the gut first. I would know he’s getting better when we would see normal production of stool and relatively normal smell, and more regularity of the bowel movements. That’s how I knew he was starting to get better. The skin didn’t clear up for many more years. In fact I would say it was only about five years ago that his eczema almost completely cleared up. So he was already 15, and we got a diagnosis when he was three and a half years old. So I know some people listening to this are thinking OMG, I’m not going to make it 12 years! You’re going to make it. You just have to stay in the hunt. Stay in the game and work with your child. The child wants to get better, and once you also engage a child and try to explain to them what you’re trying to do. Autistic kids have a high level of intelligence – a lot of them do. In fact, some of them are genius level intelligence, and you can even talk scientific terms with them. And they will begin to work with you to try and get better because they want to get better; they want to feel better.
A great point! I want to emphasize this point about time. Depending on what is going on in the rest of the body – your son was dealing with systemic inflammation, he was dealing with severe issues with his skin, as well as inflammation in the brain, and it took a really long time to heal. But you can see different stages and clues like the stool normalizing. Even if it is not associated with a dramatic improvement in behavior, it’s still so important and so relevant. So I really encourage people to be medical detectives. I was that parent who was trying to go and take a peek at my daughter’s stool and sniff her. And of course she was like: “What is wrong with you? Get up off me!” But these are important things: what our kids’ bowel movements look like and smell like and whether they’re regular or not. These are things we have to pay attention to. This is not just stuff to be flushed away and forgotten about. Sometimes I’m in a public restroom and somebody else is in the restroom and I smell what’s going on and I literally want to give them my card through the door and say: “You have got to call me because something is terribly wrong! This is not supposed to smell like this!” So again, we have to use all the tools in our toolbox and looking at what comes out is incredibly important. What comes out is a reflection of what is going on inside. It is important feedback and so often we just flush it away. Coming up next: the skyrocketing incidence of diseases like autism spectrum disorder, and some connections between the gut and the brain in some of these disorders.
It is not an exaggeration to say that we are seeing a virtual epidemic of conditions like autism spectrum disorder, and on the other end of the age scale: Alzheimer’s, dementia, Parkinson’s, etc. Something terrible is going on in our bodies, and even though I am focused on the connection between our brain and our gut, and our immune system and our gut, clearly these diseases are multifactorial. It’s not a straight line. We can’t say it’s because of abnormalities in the microbiome or maternal infections when the babies are in utero, and this is why this is happening. It’s a complex mix of genetic predisposition, environmental exposure (some of which we’re not even aware of – it’s hard to protect our kids when we’re not even aware that they’re being exposed), medication side effects, diet, lifestyle, exposure to nature and soil, etc. There’s so much that goes into it, but I always say: “Why not start with the gut?”. It’s right in the center of your body. It’s the engine that’s feeding all these other organs, including the brain. It’s a great place to start! The conservative estimate from the CDC for autism spectrum disorder (ASD) is 1 in 60, and in some parts of the country it’s 1 in 32. And what’s clear is that it’s getting more and more common. Can you give us your thoughts on why you think this is happening?
This is a controversial issue. What we do see is the prevalence is really just going up. It’s skyrocketing. It has not yet plateaued. We’re seeing a lot of children – especially male children – having issues and being diagnosed with ADHD or even ASD. We could spend a whole podcast on theories of the origins of it all, but what we do know is that it’s very prevalent and parents get thrust into a situation where they go to practitioners looking for advice and different ways of approaching it.
Two things I want to focus on is that our kids are overmedicated, and they’re undernourished. And the same is true later in life: our elderly folks are also overmedicated and undernourished. I’m a conventionally trained doctor like you, and I’m grateful for the pharmaceutical industry. We live longer and better because of things like antibiotics and anti-epileptics and antidepressants. But kids are on a ridiculous amount of medication, and I worry what it’s doing to their gut and their brain. So the approach, just like the diseases, are complex and multifactorial. There are families out there who have had incredible results from medication and that is wonderful. But why not also consider improving the diet? What you’re describing – getting rid of foods like gluten and sugar; that’s only going to make you healthier! We’re not saying eat coconut macaroons and this is going to solve what ails you. So whether you’re dealing with a child on the spectrum, or whether you have a relatively healthy child, but you think they could be healthier, or maybe they’re showing some behavioral signs that are problematic, it’s so important to consider what they’re eating. And I have to tell you, as a gastroenterologist for three decades, it’s stunning to me that so often in the medical community nobody is paying attention to that.
With regards to that, you may remember when we were in medical school, the time we spent doing complex nutrition instruction was relatively limited compared to the amount of time we spent with microbiology or virology or anatomy modules. Nutrition focus was more parental nutrition, IV nutrition, hospitalized patients.
So the beautiful thing now is that because of the internet, people can research, can connect, they can advocate for themselves in a way that’s very different from what they could do decades ago. So that has been an incredible advantage. The average person has access to the same information that I have access to as a physician. They may not be able to interpret the information the same way I can, and that’s another important point, because there’s a lot of snake oil out there for all of these conditions. So it’s really important that you are getting your information from legitimate sources. That you’re looking at data from clinical trials that are peer reviewed and you’re not on somebody’s website buying a bunch of supplements that they claim are going to cure one ailment or another. I want to thank you again for being here on a Sunday afternoon, taking time away from your family to share this information with me. I literally texted you yesterday and asked if you’d be willing to come on the podcast and talk about your experience with your son. And you said “absolutely”, and 24 hours later here you are – I’m so grateful! And this is the goal of this podcast: to have real conversations with real people who have real struggles and have advice and wisdom to share. We are not about selling snake oil; we’re about really promoting understanding about what’s going on in the gut and how it can affect the rest of your body. So I’m just really so grateful that you joined us, and I want to close by asking you of all the things that you’ve done, and you’ve done a lot of different things; you’ve done therapy, I know your son rides horses and is outside a lot, and he’s a swimmer (by the way, he is a stunningly handsome boy – as are all your children!), what do you think has helped him the most?
Love has helped him the most. I learned so much about myself with this situation. And I’ve only always wanted a family since I was a little boy. And I was given a situation where I had to look in the mirror and answer the question: “Who are you and what do you believe, and are you going to love your children unconditionally and fully?” The most important thing was loving him. And I continue to do that. And of course we are working with him every step of the way. We involve him in every decision we make and he’s grateful, and he told me that – he can type to communicate. So we’re a team, and I am his brother, and he is my brother, and that’s the way it is.
I want to leave you with three takeaways about the gut brain connection when it comes to autism spectrum disorder.
1. Multiple scientific studies have made a connection between the gut microbiome and the brain in autism. Although the line connecting the two is not a straight one, there’s really nothing to be lost – and potentially a lot to be gained from changing the diet in a way that can improve the diversity and composition of the microbiome
2. Bowel movements can be an important window into what’s going on in the gut in autism. Stool consistency, odor and regularity are all important clues.
3. Be patient. As we heard from our incredible guest today, it may take years after changing the diet for improvements in cognitive function to manifest.
So that’s it for this episode of the Gutbliss Podcast on autism spectrum disorder and the gut. A huge thank you again to my guest. We so appreciate everything you shared with us today. Especially the love.
Coming up next week on the Gutbliss podcast: my top 10 list for things that are making you bloated.
