Emily Gutierrez and Jana Roso

January 16, 2019

The Parent’s Roadmap to Autism: Dr. Emily Gutierrez and Jana Roso

Emily Gutierrez and Jana Roso

Dr. Emily Gutierrez and Jana Roso are the coauthors of The Parent’s Roadmap to Autism, and Jana is a pediatric nurse practitioner. They know that finding an effective treatment for autism can be a really complicated journey that’s filled with wrong turns and dead ends. In this episode, Emily and Jana suggest an alternate route that can lead to huge developmental gains for an autistic child.

Emily and Jana believe in a holistic biomedical approach, and it’s already helped countless children become more connected to the world around them. If you’re feeling helpless or hopeless or over-burdened, this is the episode for you. There is a new path that you can follow, and The Parent’s Roadmap to Autism will show you the way.

Jana Roso: Throughout our book, we talk about gut health, and of course nutrition, and how you can manipulate your child’s diet to lower inflammation and improve their health. For me, I learned about all of that later in life when I came to college and had been battling GI issues my entire life, and quite a bit of anxiety.

On my own, I started to explore nutrition and the value of eating clean and avoiding a lot of processed foods in order to heal my own gut. Oftentimes when I’m talking with patients and their parents and hearing about their ongoing GI issues, which is oftentimes something that we’re dealing with in our autistic population, I feel that I can have a lot of sympathy to what they’re going through in that realm because I’ve been there myself. It’s not ever finished, right? Gut healing is ongoing, but yeah, I feel like I have fought that battle for quite some time.

Charlie Hoehn: What does it specifically mean to be on the gut highway?

Jana Roso: Well, the gut is the genesis of many autoimmune diseases and even the father of modern medicine, Hippocrates, will say all disease begins within the gut. We assimilate our environment from what we’re putting in our mouth to then what is being assimilated and then distributed throughout our body. Those inputs are very important and it’s something that we do, you know, six to eight times a day, not only with our food but with the microbes in our environment, the things that we’re exposed to.

“Not everybody responds to the same inputs the same way.”

Because somebody can be eating eggs and it’s a great source of protein and fat for them, high in choline, which is important for memory and learning—somebody else is eating eggs and it’s causing this inflammatory response which then is leading to chronic diarrhea and increased intestinal permeability or you know, kind of a leaky gut and then your immune system is up regulated. It’s nice to begin in the gut because it’s the genesis of really where disease typically begins.

Starting with a GPS

Charlie Hoehn: You start off the book with the GPS, starting the GPS, what does this really mean?

Jana Roso: Yeah, you know, when we were thinking about writing this book and we wanted it to be relatable, we really liked this metaphor that we were using to get people onboard with each chapter and where we were taking them, kind of encompassing what we do with our patients here in the clinic.

Starting the GPS is essentially knowing where you’re at.

Everybody is at a different place on their journey, one parent comes in and their child might have already explored several avenues and maybe they altered their diet quite a bit and tried different supplementation. Then another family comes in and they might not even understand what medical treatment really encompasses.

It’s all about figuring out where you’re at on this journey, starting your car, where is your location, where are we headed, what have we done so far, and what is there left to try and talk about?

Emily Gutierrez: You know, sometimes you can be thrown the diagnosis of autism when really it’s actually something different. In our autistic population, we want to make sure that our patients have had kind of the big things ruled out. Doing a chromosomal micro-array which looks at chromosomal structure, getting proper diagnosing before you give the label of autism, because there are a lot of things that can look like autism but they’re not. They’re actually something else. Confirming that diagnosis is really important.

Charlie Hoehn: What are some examples of that when it gets misdiagnosed?

Emily Gutierrez: Gosh, it can be an autoimmune condition, it can be something like PANDAS or PANS that has overlapping symptoms that look similar. It could be even a genetic abnormality that hasn’t been detected.

Jana Roso: One of my patients came in and he’d been on the biomedical approach for many years, seeing it really good practitioner that was doing a good job with them that they showed minimal improvements with kind of all the biomedical treatment and biomedical means that we look at autism, not as a psychological disorder but more as a physiological systems imbalance disorder.

You know, we’re looking at different systems to see where the imbalances are, and then once you find those imbalances and correct them, often you’ll have an improvement and autistic symptoms.

For this kiddo, they’d done everything, seen some really good providers.

One thing they hadn’t done was a chromosomal micro array, and when we got his results back, he was missing a major cluster of genes. In fact, this kid has a rare genetic disorder that has the symptoms of autism but is not truly autism, it’s a rare genetic condition. It helps mitigate expectations for how much the child will progress developmentally.

The Gut Matters

Charlie Hoehn: I seem to recall coming across a case study of somebody who is diagnosed with autism and it turned out, they had a ton of parasites, and as soon as those were removed, the improved dramatically. Does that sound accurate?

Jana Roso: Absolutely. You know, when a child is being evaluated for autism, you’re looking for certain symptoms. In a way, it can be a little bit—not limiting as to who you’re seeing and who is diagnosing, but you know, I’ve had children walk into my office and they’d been very verbal and very attentive and very playful and socially normal but have this label on them. Essentially, it’s an umbrella for all of these symptoms and what that means is why we dive into it. You know, what’s going on in the gut.

What does nutrition look like, what nutrient deficiencies are there, so all of these avenues that we’re investigating can lead to those symptoms that that child is having. That then becomes a diagnosis of autism.

Charlie Hoehn: I’d imagine many parents who come to you just worried out of their minds and wondering how they can help their child, they’re not aware of this, right?

Jana Roso: Yeah, we treat autism in our clinic, but we also treat everything chronic disease and all things that are functional medicine. We even have primary care patients. I’ve had patients that have come in here, and their children are on two to three different psychotropic medications, not seeing symptom improvement. They’re kind of at their wits end.

We’ve dived into their gut and it turned out either they had celiac disease or they had some type of severe intestinal inflammation, but the child had no symptoms. Maybe just a little constipation that was something that they’d always had. The psychiatrist typically doesn’t ask about your bowel movements, the neurologist typically doesn’t ask about what you’re eating or your bowel movements. I’m hopeful that that is starting to change in medicine, because all of your systems are connected.

“The gut influences the brain just like the brain influences the gut, via the vagus nerve.”

There’s always this cross talk that is happening. When you’re talking about anything that has any type of neuropsychiatric or neurocognitive effect, I think it’s a disservice not to really dive in and understand what’s happening within the microbiome or the gut.

Emily Gutierrez: You would be surprised at how many people are really well aligned with what’s going on with biomedical treatment and in tune because of how social media has blown up. It is rare that we have a family in that comes in that really doesn’t understand what we’re going to be talking about or what we’re going to be doing, because as soon as their child has received this diagnosis, they’re either online searching for answers or on a Facebook group or they’re talking with a friend who has been down this journey.

I would say it’s more rare to come across a family who really doesn’t understand what biomedical treatment might entail for their child.

Testing Gut Health

Charlie Hoehn: When you say, really dive into the gut, what does that mean? What kind of test are you doing?

Jana Roso: Gosh, there are numerous amounts of tests but we often, you know, we’ll start, when you’re diving into the gut, the first step is really removal of inflammatory foods or any pathogens that can be inflammatory, so we will often do a food sensitivity panel, we can look at food allergies so that we can provide guidance to that family as to what should we be feeding our child and what should we not be feeding our child.

Then we often will utilize stool studies that look at different pathogens and look at different fungi and we’ll look for H. Pylori and even the composition of the beneficial versus the more dysbiotic or pathogenic bacteria in the gut, so it will give us an idea what is really growing in the gut, what should we put our focus in towards, and then we can even rule out autoimmune type of bacteria and might leave it out.

Emily Gutierrez: To simplify it, we take out what is not needed and put in what is needed. That’s really rebalancing the gut and that’s everything from what Jana said, foods, bacteria, the fungus or posterior, different bacteria that shouldn’t be there to replacing it with healing nutrients, healing foods, healing microorganisms.

That’s how we really focus on the gut and can utilize supplements to do that, we often utilize medications as well.

Jana Roso: It’s not an overnight process. We have to remind families that this is not a sprint, it is a marathon, and it sometimes has taken years for the gut to get to the state that it’s in now, and so now the process to heal the gut is going to take a while.

Removing the inflammatory items, foods, and then adding in healing supplements or other healing substances, it can just take time for the gut to turnover and to see improvements.

Take Time to Heal

Charlie Hoehn: It takes years to get to the place that it’s in now, right? What is the typical healing time would you say if you had to ballpark it?

Emily Gutierrez: Well, I wouldn’t say it takes years. I think that the thing is, as you can see, are pretty immediate improvements once you utilize medications and start to change the diet. In fact, there’s literature that shows that we can start to really shift the microbial diversity in our gut with foods that can happen up to even just a few days later.

The trouble with kids on the spectrum are a lot of them are very picky.

Changing the parent’s approach to their child’s food and changing that kid’s palette, that I think can take a little bit more time. Healing the gut is something that you know, you start with like Jana said in the beginning is also ongoing. If you just go back to eating inflammatory foods and being exposed to different things and not taking care of yourself the way that you should be, you’re going to likely end up back in a place of inflammatory stress.

Jana Roso: Healing the gut can be ongoing. Once you have incorporated different supplements and changed your diet quite a bit, we can see some pretty drastic improvements in our patients. But as we see with them and as I know personally, you hit a roadblock every once in a while, let’s say you get really sick and you can’t avoid that antibiotic and so you’re on a medication temporarily and that kind of sets you back in the gut department and so there’s things like that that are going to happen, maybe you know, the holidays come around and we eat too much sugar. Our child kind of regresses a bit and we have to get back on track after that.

It’s an ongoing process.

But I think once you have the tools to know how you should be handling your body and what you should be eating and what you need to take to heal your gut, then you will end up on the right path after that.

Emily Gutierrez: What’s interesting about people and food is we equate food with health. Even sometimes, if we’re feeding our children food that isn’t healthy for them—for a parent to watch a child refuse to eat for a day, that takes a lot of strength for a parent to muscle through that. In my experience, I haven’t had a patient go more than a day without eating.

They do eventually get hungry enough, and they will eat. You got to try to just take the emotion out of it.

Here’s what we have to eat, if you don’t want to eat it, that’s all right, we’ll try again at the next scheduled meal or snack time.

You know, the more strong willed the child is, the longer they’re going to hold out and refuse.

But we can go a good 30 days without eating before we get into serious trouble. It’s water that we always need, and we can even go without water for a couple of days. It just takes a lot. It’s a battle of the wills. It’s a shift in a parent’s thinking that if my child eats something that is bad for them, it’s worse than them not eating at all while I shift their palette.

Jana Roso: That documentary has been really inspiring for a lot of our families who are having a hard time deciding that they’re going to drastically change their child’s diet, and a lot of times it comes down to that—if we want to make progress, if we want to see gains, then we really need to do something drastic with how they’re eating. I reference that documentary just to give the parents a lot of inspiration and courage to go in that direction.

Charlie Hoehn: Yeah, that brings me to another question that I’m curious about is, do you two ever use fasting as a tool to help the gut heal?

Emily Gutierrez: We definitely believe in the benefits of fasting to increase the brain growth hormone so we believe in it. It’s harder to ask a child to fast. I mean, if you wake up and you eat at seven and then you go to bed at seven and you don’t eat for 12 hours, that’s a 12 hour fast. It can be very helpful for adults.

I think it is more helpful in an older population, but for a kiddo that is growing and really needs a lot of nutrient support to lay down those tissues and bones, we just don’t use it as often at this time in our practice.

Success Stories

Charlie Hoehn: Are there any great stories in the book that you’d like to share on this podcast?

Jana Roso: We see a little successes and little wins all the time, you know, it just depends on what the child is coming in with and what the situation is, we’ve had kids that have had chronic irritable bowels that have not been able to become potty-trained that, after a few months of treatment finally, out of diapers and they’re six years old. We’ve had patients that haven’t had any words, after a few months of treatment, they’re speaking.

We see improvement within all of our patients. It is the degree to the improvement varies from child to child.

We often leave the office as we’re you know, helping our patients check out and get to the front with you know, a lot of hope in our heart and tears in our eyes because things have gone so well.

The key to success with these children is adherence to a recommended plan of care. I think that a lot of times when you get into bio medicine, you can feel a little bit overwhelmed, because there’s no magic pill. We’re not going to say you’re going to take a fish oil and your child’s not going to be autistic again.

We’re going to recommend a dietary change, a lifestyle change, looking at your environment, to make sure there’s not toxic inputs. We might ask you to clean up the air quality in the house, looking at the water quality, that the kids are drinking. We might recommend different behavioral therapies, we might recommend not only fish oil but maybe probiotics for the gut or different ventilation or genetic support.

Often, there are multiple tasks for the parent to do.

It’s when the parent just follows the plan of care and is congruent with that that you see the best outcomes. I will say for those parents that just want to do everything except change their child’s diet, there’s likely going to be a stagnation in where the developmental process could lead.

Emily Gutierrez: I was thinking about the kiddos I followed up with this week and I have a couple of good stories. I followed up with an eight year old kiddo yesterday and his parents. I think we’ve been seeing him for maybe six to nine months and we really focused on diet change and gut health and supplementation of nutrients that he was lacking, and the mom said the greatest thing yesterday—she said that in his therapy, at his ABA place that he goes almost 40 hours a week.

They told her that he was the most rapidly progressing student that they had, that they were having to change his plan of care so rapidly to keep challenging him because he was progressing so much and he’s starting to use more words. He’s starting to look his parents in the eye and ask them for what he wants.

Even though that seems so minute, it is huge for this child and he’s going in the right direction, even as an eight year old. I was thrilled to hear that from them yesterday.

Charlie Hoehn: I can’t imagine a more rewarding line of work. I cannot fathom how personally rewarding this work must be to you two.

Emily Gutierrez: It’s really amazing to sit in here with the parents, and they become more than just a patient. You think about them on your days off, and you follow up with them via email or phone and you’re constantly wondering how this child’s doing. It’s much different from a primary care office or that doctor that you see once a year.

A lot of our families come in and their main goal is speech for their child.

There’s so many hurdles that we have to overcome that’s where we might see that come into play. I followed up again today with a different patient who is a lot younger, who is four years old. He was stimming a lot, pacing around the room when I saw him and just very anxious, very hyperactive, very high pitched screaming and yelling, just out of his skin.

At our follow up, mom reveals that he is so calm now and he’s able to sit still and he’s able to do some things that he wasn’t before.

There’s no stimming, there’s no pacing. We haven’t gotten to the point where he is verbalizing yet, but just seeing this child be able to sit still and be calm and sleep, not wake up in the middle of the night. I mean, these are some really big hurdles that we had that overcome. Now we can continue healing and aim for his speech to come next.

Vision for the Roadmap

Charlie Hoehn: What is your ultimate hope and vision for this book?

Emily Gutierrez: Well, the one thing I think when Jana and I wrote this book, we thought, we don’t want to point the finger and say other providers are doing it wrong. I truly believe that those providers that are treating autism and neurologists and the pediatric psychiatrists, you know, the pediatricians, they’re doing the best they can with the knowledge that they have.

Our hope for this book was that we put that there is scientifically grounded knowledge that you can improve symptoms of autism by applying functional medicine to it. You know, taking a paradigm shift and instead of saying, “Okay, autism are these symptoms. Let’s put this child on an antipsychotic medication and put them in therapy,” which are the two biggest tools right now in allopathic medicine to treat autism.

If we can shift that to think, “Well what is causing the symptoms of autism? Why is there aggression, why is there a language delay, why is there stimming or OCD or hyperactivity?” when you can make that shift you could just see some tremendous improvements in all kinds of areas within the child.

I hope that the science is taken seriously, and then it’s a look of, “Okay, well maybe we can expand our view of how we’re treating autism to really have a more holistic approach.”

Jana Roso: In addition to that, I think another one of our goals was really to reach more people with knowledge of biomedical treatment. Emily and I, we’re limited in how many patients we can see every day, and parents are often limited in the funds that they have to spend on their child’s medical care.

With insurance not covering most functional medicine cost, it can get very expensive. So in order to bridge that gap, we thought that it would be wonderful to have this knowledge on paper for parents.

To be able to do what they can do for their child at home, and if it buys them time and then the ability to see a practitioner for one or two visits to guide them a little bit more than that is even better.

Emily Gutierrez: At the end of the book, we’ll say to our patients that we don’t want to leave you here. We want you to be able to take this a step further. So we have been creating some learning modules online that go over each chapter, like genetics and the gut and the immune system, and I teach through the major highlights in the chapters, then I review what supplements can be helpful. We are even offering some online labs where parents they don’t have to be a patient.

They can get labs, they can do a stool study on their own.

So each lab has an interpreted guide that comes with it. They will get a little bit of direction from the labs on how to interpret the results. So if they can’t afford to come and see us or because we are full and we’re months out or they live in a state that there is nobody that has a functional medicine or biomedical training, they can use these tools on their own to continue the journey and apply it more specifically to their child.

So I think that is one of the most heartbreaking things about our work is that we cannot reach enough kids. There are so many out there that need help and in fact, we will get in trouble even if we see kids that have Medicaid that have certain insurances. So everything has to be out of pocket, and there is a cost barrier there. I am hoping that as functional medicine gets more mainstream and adopted the insurance will start covering it and there will be greater access to care.

Charlie Hoehn: Another thing that you have in the book that I really like is you have kid friendly recipes. You have paleo pancakes, I think I saw kombucha popsicles and stuff to help that kids love. So I think that is such a practical thing to include. A really good resource.

Jana Roso: Yeah, the paleo pancakes are a favorite in our house. I hope that other people enjoy those. They are really easy, easy to make.

Work with Emily and Jana

Charlie Hoehn: What is the best way for our listeners to get in touch with you?

Emily Gutierrez: They can go online and look at us. Our practice is called Neuronutrition Associates, and they can leave us an inquiry on our main page and they can leave us an email. They can call our office, they’ll go through a bit of a telephone tree to get to where they need to go but they can also call us.

Jana Roso: Yeah our number is 512-599-8850.

Charlie Hoehn: I’d love for you to give our listeners a challenge. What is the one thing they can do this week that will have a positive impact on their child’s life or their family?

Emily Gutierrez: That is a great question. I would say for me, it is I think it’s just good to take a step back and try to really understand where their child is. So what I mean by that is as we get so caught up in the busy-ness that we might not understand, “All right so we just had pizza dinner and then we had diarrhea two hours later” or the next day, “You know, the sleep was bad” or the stimming was worse. Take a step back and just really take in an evaluation.

When is your child having symptoms, when are the flares, what are the foods that are going in, what did the bowels look like? That could be a really important indicator. Just take a step back and be a detective and know where you’re at before you begin.

Jana Roso: I think for me, evaluating and trying to really think about what are the top stressors that are contributing to everyday life. As a parent, Emily and I both have kiddos, we understand that just having children can be stressful and so there is so many different aspects to life that cause stress and for parents having a child with special needs adds to that stress, so taking a step back and trying to find ways to decrease stress.

Do some deep breathing, meditate, try and get a good amount of sleep. In the grand scheme of things, even if you are eating the healthiest of diets and you are taking supplements, if your life is just consumed with stress, then that is going to add to or be on the top of inflammatory chain and compromise your gut microbiome even more than anything else.