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Holly Moses 0:05  

Welcome to the autism ADHD podcast. I am so happy that you joined me today. I want to take a moment and ask for your help; please take just a second and give the podcast a five-star review. This will help me continue the podcast and keep bringing you helpful information. Again, thanks so much for taking the time to give that five-star review. Now, let's get started. Welcome, Dr. Sharpe, to the autism ADHD podcast. Glad to be here. I'm so excited. You're here. We're going to talk about a topic that a lot of people are interested in learning more about. But before we get into it, I'm going to introduce you. Dr. Sharp is a Professor of Pediatrics at Emory University School of Medicine and Director of children's health care at Atlanta's multidisciplinary feeding program. He is a recognized expert in pediatric feeding disorder and its psychiatric counterpart, avoidant restrictive food intake disorder. His research and clinical work focus on helping children with complex medical and developmental conditions and CO-occurring feeding concerns develop a more positive relationship with food. So today, we're going to talk about food and gastrointestinal challenges. And after all these years of working with autistic kids and teens, I definitely see some comorbidity there. So, can you tell our audience how often this can co-occur?

Dr. William Sharp 1:46  

So, feeding issues are thought to occur anywhere from a third of individuals with autism to 90%. It depends on how you ask the question and who you're asking. So, for instance, if you go to parents and say, Do you have concerns about your child's diet? Almost all parents would say yes. If you really get into whether it's a clinically significant problem that requires a treatment approach, like my clinic, it's probably closer to 30% 30 to 35% of kids with autism having some significant feeding issues. But then, in regards to GI concerns, it depends, once again, on what type of GI concerns we're talking about. In our work, we found that up to 80% of individuals with autism have issues with diarrhea, constipation, and general, just discomfort along the GI tract. So yeah, I mean, it's highly variable but also highly prevalent.

Holly Moses 2:39  

Right, right. So, what would you say are some signs? First, I think we'll go ahead and separate the two of you, even though they commonly use Coker; we'll get back into that. But what are some common sides of feeding issues? Like okay, so there's a parent and they're noticing that, yes, their child only likes certain foods, maybe its texture, smell, taste, all of those things, obviously, are can be contributed to some sensory differences and sensory sensitivities. So when a kind of parent or professional has an idea of okay, this might be more than that.

Dr. William Sharp 3:19  

Right? Yeah. So all children go through a phase of picky eating, where they narrow their food range, the variety of food that they eat, that tends to occur between the ages of two and six. And so that's typical to see most kids. And what we see in autism is a heightened degree of rigidity that doesn't go away. So, part of it is that most parents would report that they started seeing some concerns about their child's diet around two years ago and that they just never came out of that narrowing of the diet. So, what we see most commonly is what we call food selectivity. That means eating a very narrow range of foods, as well as dropping foods. So, food you used to eat that used to be preferred, you drop them or stop eating them. We've developed a definition that hopefully is helpful to parents as well as professionals; when we think about food selectivity, in our definition, is that we basically talk about mild, moderate, and severe food selectivity. Mild we're not going to talk about because that's really not an issue, but moderate food selectivity we defined as eating two or fewer foods in one or more food groups. So the two groups are fruits, vegetables, protein, starches, and dairy. And we'd be looking to have two or fewer foods and more than one of those one or more of those food groups. The reason why we picked two is because if you drop more items in a group and you have two or fewer, then you're at risk of completely omitting a food group. And then severe food activity we defined as not consuming food items in one or more food groups completely, so you would eat no proteins, no fruits, and no vegetables. And the reason we call that severe is because that puts you at risk for micronutrient and macronutrient deficiencies. And at the severe end, we've seen kids with diet-related diseases and autism that you don't often see in the general population. For instance, Scurvy is something we've seen where kids have shown up with Scurvy, rickets, osteoporosis, brittle, bone fractures, and so forth. So that's the extreme end, but most parents are going to be in that moderate foods activity being concerned about very narrow consumption within one or more food groups.

Holly Moses 5:33  

And so you mentioned some of the medical consequences, you know, of, of even being in the moderate range. And, you know, it makes sense, like a lot of a lot of parents are very concerned and obviously, so what would you say are some common symptoms that will come up if kids are having trouble with GI issues, like above and beyond what would be considered typical?

Dr. William Sharp 6:01  

Yeah, so constipation is probably going to be the first thing that parents are going to see most often. What we don't know about the constipation is whether this is something unique to individual with autism and their GI tract or if it's attributed to their diet, because the diet that allows children with autism or eat or is full of processed foods, and devoid are very limited and take things with fiber that help with the GI tract in general. So a lot of rejection of fruits and vegetables. But constipation is not uncommon. I think for individuals with autism, especially those that are nonverbal, I think a lot of the abdominal pain is hard to read for parents because they can't tell whether the irritability is just part of them, not being able to communicate what they're once or, you know, what they want, what they're wanting, or whether or not, it's actually something that is more associated with pain. So we've seen a lot of kids where the parents will report, I didn't know that my child was actually in pain, because they couldn't adequately communicate it. And then how the symptoms of that pain come about can vary from anything from like, maybe punching, you know, pushing on their stomach or punching their stomach to, you know, rocking to any other type of behavior. That seems a typical, and I think that the more you have difficulties with communication, the more it can be confusing for caregivers, whether or not their child has some type of Gi discomfort,

Holly Moses 7:24  

right. And that's scary. Because, you know, if you have a child, and they're not able to communicate, and the way that we would naturally think, for instance, you know, my stomach hurts, right, where other kids might be able to communicate clearly in that way. And, like you said, here are some things that can happen. And that's why it's important for us to track. Right, it's important to get that data to see if Hey, are there any patterns here? You know, are we noticing that constipation may be related to irritability I often see and I'm sure you do, too, that we don't pay enough attention to putting these things together, like feeding and GI issues, and then also behavior.

Dr. William Sharp 8:12  

Right. Yeah, I mean, I think that the idea of taking data is really important. You know, you can do things like tracking bowel movements and how often your child's having a bowel movement. You can track things like the board type of foods, your child's eating, you know, we often get parents food records, where we ask them to record what their child eats on a consistent basis. And I think you spoke to, you know, earlier, when we were first connecting that, you know, it is pediatricians, who are our frontline health care providers that parents are often going to and asking for help. I really want parents to strongly advocate for their child with autism, because most pediatricians that were the story that I get from most parents is that they were told to take a wait-and-see approach, you know, they'll go to their pediatrician and say, I'm concerned about, you know, my child's died or I'm concerned of my child gi conditions and possible gi conditions in Most pediatricians from the stories we get is they're told it will, they'll grow out of it, or you know, it will get better over time. And so what we advocate for is for the parents to advocate for sub specialty evaluation. So coming to a specialty clinic, like a feeding program, or going to a sub-specialty, like a gastroenterologist, to get it fully evaluated is very helpful in these cases.

Holly Moses 9:27  

I agree. I actually hear the same thing from parents and pediatricians. They are they're so good at so many things. Right? And so it would be really difficult to kind of tease in a very short amount of time, what what is developmentally? Maybe what you would see like you said, picky eating between two and six versus something else.

Dr. William Sharp 9:58  

Right. And I also believe Going back to, when you go to a well visit as a parent, the first thing they do is they weigh your child. And they give you they give you data on how your child's growing, right. And most of the feeding problems that kids with autism experienced is not an issue with volume. So, most kids with autism are eating enough food. It's an issue with the variety or the quality of the diet. And so one of the main tools that a pediatrician uses is the growth curve. And most kids with autism are on a growth curve and the appropriate growth curve are, in fact, many of them are, are leaning toward the obese or overweight, part of the growth curve. And so the pediatricians toolbox is to look at weight. And that's not the right proxy, in this case, for determining how well there the child's diet is in terms of diversity.

Holly Moses 10:48  

So when you said weight might not be a great way to kind of monitor, you know, how much nutrition they're getting all those things, what would be ways that we could get that data.

Dr. William Sharp 11:03  

So you know, a very simple tool for our parents to do is just to, you know, write down the five food groups, once again, their their fruits, vegetables, proteins, grains, and starches, and then dairy. And just next to each one of those categories write down what foods their child consumes, in each of those groups. What we tend to get in our clinic is a lot of children who are gravitating toward the starches and processed foods, and a lot of rejection or very narrow variety of fruits and vegetables and healthy proteins. And so that's when a parent can very easily go, yes, my parent, my child is meeting that pattern that we often see in kids with autism and food selectivity.

Holly Moses 11:42  

And what's also important, I'm glad that you're emphasizing kind of writing those things down. And that's not always easy. You know, there, it could be maybe something on your phone, there's lots of apps that you can track these types of things. And so that might be a good place to go. Because parents are so so so busy, right. And then this would also be important for educators to be on board as well, because kids spend a lot of time in school. And so they'll also need to take down that information. And what's good about having that data is when you first go to the pediatrician and provide it if they are thinking let's wait. Or if you advocate and say you know, we really need to go to the next step here. Then you already have it with you.

Dr. William Sharp 12:31  

Yeah, and I think you mentioned when when you were introduced me my bio, that the two diagnosis diagnoses that I'm really happy that have come about are a new diagnosis called pediatric feeding disorder that was introduced in 2019. I think I got that right. And then avoidant restrictive food intake disorder, which was introduced in 2013. I might be off on those dates. But the point of those two diagnoses is hopefully, they are something that the pediatrician can can look at and see that the child may or may not meet criteria based on the new, more robust diagnoses for feeding problems in pediatric populations. Right.

Holly Moses 13:09  

And we have come so far in that area, definitely. And you mentioned are fed, which is talked about more and more. So, can you talk a little bit about what that means? Right? Yeah, so

Dr. William Sharp 13:21  

arfid replaced a diagnosis. So it's in the DSM five, it was introduced to replace and extend a diagnosis in DSM four, which was feeding disorder of infancy and early childhood. And what I really liked about arfid, when it came out, is previously, in order to get a diagnosis of feeding disorder of infancy in early childhood, you had to be underweight. So they basically and this might be why pediatricians look at weight as to identify a feeding problem is you have to be you know, your your weight for age or your BMI would need to be below the fifth percentile, and that would get you a diagnosis of a feeding disorder of infancy in early childhood. When DSM five came about, they introduced arfid. And they expanded it, weight loss is still one of the criteria, but there are actually four manifestations that that would that would meet a diagnosis of Marfan. So one will be significant weight loss or failure to achieve weight expected for your age. But then it added three other possible criterias. The second one is now significant nutritional deficiency, and this is where we're capturing a food site activity A lot of times I said it, especially that severe foods activity, we're seeing significant, you know, marrow diet leading to significant treatment efficiency. The third is dependence on enteral feeding or both oral nutritional supplement supplements, so these would be kids who I've seen kids who are completely relied on feeding tubes to meet their nutritional needs or kids who only drink PD Asscher and don't eat any solid foods. And then the fourth and final manifestation is marked interferes with psychosocial functioning. So these are, this is really where this gray area is like what does it mean to be interfere with psychosocial functioning. But one way to think of it in terms of the parent experience with autism is we've had parents say they can't eat outside the home they have to, they have to adapt their entire lifestyle to make sure their child can eat foods. And many families don't even understand how they've adapted their life to address the food selectivity. So, for instance, we have one individual with autism who really wanted to go to summer camp for the first time. And the parents didn't realize how much accommodation they made for their child's diets, when they send them. They didn't warn the camp that the child had food slight tivity, when the child got there, he stopped eating completely. Within two weeks, they had concerns regarding dehydration. And he ended up at a hospital not too long after that. And the parents came to us and said we didn't realize how many things we did to make sure he ate his food, brand specific, presentation specific accommodations that the camp wasn't making, or they didn't even think about letting the camp know.

Holly Moses 15:59  

Right. And I think that's a good example of how much this can impact because families do the things they have to do, you know, and then it becomes just what you do day to day. And you know, where other families might go out to eat or they have are able to go over to a friend's house and have dinner, you know, those things become really tricky.

Dr. William Sharp 16:25  

Yeah, they do. And in in, because food is so ubiquitous to how we as humans, get together, gather it and have social engagements. This is a situation where those events are not something that are pleasurable for the family, of a child with autism, they're actually thought of as stressful. Some of the really most impactful research that I've seen in some of the qualitative research done with families with autism, and where they interview parents, and they asked you, you know, what is it like for you to parent your child with autism, and they they described meals as chaotic, stressful, a source of significant disruption. And in that's usually, you know, meals for most families are thought of the time to gather and celebrate, and it's the exact opposite for the families with autism. Right,

Holly Moses 17:12  

right. So what advice would you give to parents who get advice from others they didn't ask for often all here, well just make them or the let them starve, they'll eventually eat. And that's not really the best advice. Right?

Dr. William Sharp 17:31  

Yeah, I mean, the idea of that, you know, just just put it out there, and they'll eat it or wait and see. And in, you know, to your point, take away their preferred foods we've developed, what we hope in the future is going to be a curriculum for parents and caregivers, called the meal plan. And that stands for managing eating aversions and limited variety in autism. And this is a approach that parents can use to diversify their diet. And it involves three stages, one of the first thing we do is we say Don't, don't flood your kid with foods they don't like. So don't just sit them down at the kitchen table and try to get them to eat a bunch of random foods, because for most of the kids we work with, they don't come to the table readily. In fact, we think they associate the table with places where foods get presented to them that they don't like. And so they're actually avoiding coming to the table because they they are used to the parents presenting them with things they don't like. So we start off with what we call making the making preferred foods, the meal, and getting the kid back to the table. So that would be something if the kid only chicken nuggets and french fries. As counterintuitive, it would sound we would say just some chicken nuggets and french fries at the table. So they start developing an association with I eat at a certain location, we also recommend they get on a regular meal schedule. So we want them to have two snacks and three meals a day and eliminate grazing in between those. So it's not uncommon for kids to walk around with chips or crackers in the snack all day long. And we want that grazing to be eliminated. And then we have a way to systematically and very slowly introduce new foods to their child, we often ask the parents to start with what we call the drop foods, the foods that kids used to eat because they're familiar with those foods, or foods that are very similar in nature to foods that the child already eat. So something like if they you know, blueberry yogurt, maybe working on strawberry yogurt, and then building what we call food flexibility. So that is working toward their child becoming more flexible with eating through those small building on small successes over time to eventually get to where your child is eating any vegetable. But don't start with the vegetable because we know that that's not going to be an area for success.

Holly Moses 19:44  

Well, I'm glad that you said that because you're right. I mean it's a balance because what we could do is make the table punishing food then becomes punishing and I'll hear that from kids and teens that come in to our practice. is the thought of being made, you know, to try to eat something. I mean, you, they have told me that it makes them sick, like physically sick. And, you know, that's not where we're going. It's not really what the intention is. It's to make it better, not worse. So I'm glad that you mentioned that. And I'm glad to hear that that support will be rolling out soon. Yeah,

Dr. William Sharp 20:29  

I mean, one, one thought exercise I encourage parents to do and this is part of the curriculum as well. We ask parents to think of a food they dislike or that's not a preferred food, right? And then we ask them, what would what would they do if a stranger or or an adult, sat them down at a table, put a giant bowl because most parents present not prefer non preferred foods is it the child eats it? So it's not uncommon to say like, if they're trying to get them, the blueberries, I'll put an entire bowl of blueberries out there as if the child is going to consume the blueberries. And then we ask the parent, you know, if you were taken to a room, sat down and put a food that you don't like in front of you, and told to eat it? What would you do? And most people say, I would turn away or push it away, or say, No, thank you. And then take it a step further, what would you do? If then the person scoops it up and tries to put it in your mouth? Well, you might push the spoon away, or you might, you know, turn your head. And then what would you do if they actually kept it at your lips until you and asked you to eat the food? Well, most most people are who are faced with something they really don't like, are gonna get increasingly upset. So we, you know, in the old days, you know, previously we made a call those refusal behaviors. But if you do that thought exercise, and they're just that's a reasonable response to an unreasonable demand. And so I think that's an important differentiation.

Holly Moses 21:44  

Yes, I love that. And I'm glad to know that you say that because I do too. It's like, well, they should just eat it. Well, what would you do? And then have them name something. And when I think about a plate of cooked mushrooms, I'll be running straight out the door. Right?

Dr. William Sharp 22:02  

Yeah, I mean, for me, it's beets. I don't like beets. But what's interesting is, is I think, individuals who are verbal, who can actually communicate how they're experienced in the world. They'll say things like, you know, that's not food that's not edible. I've heard you know, I was giving a talk recently, and somebody in the audience said that they're told they're they're unsafe, the foods are not, they're not things they should eat. And so I think we need to take that perspective as opposed to say, they should just get over it needed. Like, I think that's a very flippant way to think about food selectivity. Right.

Holly Moses 22:34  

I have gone I don't know if this is too extreme, but I've gone as far as saying, What if you were served a plate of flaming garbage? What would that be like for you? Try to try to get away from it. And so I like you like what you're saying that this isn't an on purpose, or I'm trying to get be difficult type of thing. This is it feels unsafe. Right. And so then, of course, you're not going to want that.

Dr. William Sharp 23:02  

Right, I think flaming garbage is in x description in most parents, when they're trying to diversify their child's diet are starting with the flaming garbage, right, they're sitting their child down and saying, try this bowl of broccoli, you know, try this other food. And for the child, they're looking, I'm saying that's not even something I'm going to even approach. And so what we've developed is, it's basically based on behavioral theory, where we go so slow with exposure and response prevention is one way to think about it, that we're systematically teaching the child these are safe foods that you can eat these foods. And hopefully, what we're a big fan of is children developing preference, right. And so if a child doesn't like a food, that's fine, but we want them to have enough exposure experience with foods so they can start making choices about the foods they like and don't like.

Holly Moses 23:50  

Right, instead of kind of, I can't do that that doesn't are assuming it might feel or taste a certain way. Or like that, you're saying, you know, really honoring still those preferences because it is really frightening when you're talking about Scurvy. And in not getting the nutrition that you need. That's some scary stuff

Dr. William Sharp 24:14  

that is in, the medical community is not really set up really well to handle something like Scurvy. So you know, we've written some about how, what what happens with Scurvy is that you stop being able to walk. And so when a child with autism who's not able to walk shows up at the hospital, they don't start with a diet record. They're not starting with saying what your what is your child eating. They're looking for things like neurological conditions, cancer, you know, any type of orthopedic type of thing that causes you to be non ambulatory. And in our work, we've also shown how many tests they run on a child with something like Scurvy, where they're trying to figure it out. And if they started with saying, what did your child eat, they can figure out that it was the actual diagnosis of Scurvy.

Holly Moses 24:57  

Wow. And That's possibly because of the testing. Right? Correct.

Dr. William Sharp 25:06  

Yeah. And that's really extreme. You know, Scurvy is going to be a very rare thing. But it's possible. We do know that bone health is is definitely an area that parents should be concerned about, in that due to low intake of calcium in related vitamins.

Holly Moses 25:22  

Right. Right. Thank you so much for for coming on. And talking with me today, this was incredibly helpful. And I think it gives all of us a good idea of yes, this is important stuff. And we know it is and keep moving forward, right, trying to get the support that each each child needs. So tell us a little bit about the services that you're involved with for those who are interested in possibly checking those out. Right,

Dr. William Sharp 25:52  

so we here in Atlanta, we have a few services. On the severe end, we have an intensive program where families come and live with us for two or more months, and we do Monday through Friday, four meals a day. And this is working once again with those severe feeding cases where we're looking to expand their diet. In cases where they develop develop Scurvy, or some other type of diet related disease. This treatment is very effective. On average, kids pick up between 16 and 20 new foods during their stay, we train caregivers, how to present new foods and expand their child's diet. And so that's the day program and that that's once again, for a very a handful of kids, but we also offer outpatient treatments. And I mentioned the meal planner, that is something we offer right now. It's a parent training curriculum. It's it's not it's not as intensive, but we're offering it as an outpatient basis, either one time a week, or for some families come and do it, you know, in the morning for a few mornings a week. But once again, that's a parents co therapist model with the parents are learning the skills and strategies for how to address food selectivity and autism. And then we do offer medical screening. We offer dietitian support here in the program, because we truly are multidisciplinary. So it's psychology gi, dietitians, Speech, Language Pathologist, occupational therapists, and social workers all under the same political umbrella offering to provide care for kids with feeding concerns. That is

Holly Moses 27:24  

wonderful. And I'll make sure to have those links available to anyone who's interested in checking it out. There'll be below in the show notes. So, thank you again so much for coming on and speaking with me.

Dr. William Sharp 27:38  

Yeah, thank you for being here.

Holly Moses 27:40  

Take care. Bye. Thank you for joining me for this episode. Make sure to subscribe so you don't miss any important information. Today's episode is brought to you by the free behavior detective guide. If you are a parent, a teacher, or a therapist, and you support a child who struggles with challenging behavior, you absolutely want to get a hold of this free guide. So take a look in the show notes and click the link and you'll be on your way to getting the free guide in your inbox. Thanks so much, and I look forward to seeing you next time.

Disclaimer 28:22  

All content provided is protected under applicable copyright patent trademark and other proprietary rights all content is provided for informational and educational purposes only. No content is intended to be a substitute for professional medical or psychological diagnosis advice or treatment information provided does not create an agreement for service between Holly blonde Moses crossbar and clinical group. The interviewee held the blonde Moses LLC, and the recipient can tell your physician regarding the applicability of any opinions or recommendations with respect to your symptoms or medical condition or the symptoms or medical condition of your family member, children, or adults who show signs of dangerous behavior toward themselves or others should be placed immediately under the care of a qualified professional.

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