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We review the sense of taste and how autistic individuals may experience this sense differently than their neurotypical peers. We discuss feeding therapy, as well as pica, oral stimming, and transitioning to self-feeding.
Savoring Diverse Palates
Show Notes for Embracing Autism Podcast — Ep. 203
Intro
Lia: In today’s episode, we will touch on the sense of taste and how autistic individuals may experience this sense differently than their neurotypical peers. We discussed feeding therapy, as well as pica, oral stimming and transitioning to self-feeding.
Lia: Welcome to Embracing Autism, a podcast for parents of autistic children seeking advice and support while spreading awareness and acceptance of Autism Spectrum Disorder.
Lia: I’m Lia!
Matt: And I’m Matt!
Lia: And each week, we’ll discuss our journey with autism and talk about how to embrace your child’s individuality while providing guidance, tips, resources and sharing our personal stories.
Lia: This is —
Lia & Matt: Embracing Autism!
Discussion:
Lia: Hey Everyone, in today’s episode, we will be doing all things taste-related. And that is our sense for the day. But we’re not limiting it to specifically taste. We’re also limiting it to oral-related things like oral stimming, or oral-related muscle issues, things like that. So it’s not just taste. It’s like all things mouth related if that makes sense.
Matt: Right, And touching on kind of some therapy action as well in there.
Lia: Yeah, so we don’t really know what to call that. But we felt that all these things kind of relate together under the tastes category for both the taste purposes, but also the oral and muscular mouth part of it.
Matt: Well said.
Lia: Can you tell I’m not a speech-language pathologist? So one of the things that we wanted to just dive right in here at the beginning is really focus on feeding therapy for this episode, because when it came to the sense of taste for us, and our kids feeding therapy was a big issue. Both of our children actually had to go through feeding therapy, which is usually done through an occupational therapist.
Matt: So for our youngest daughter, the reason that we actually went through feeding therapy was more of a nutrition route. I think she was probably about a year and a half pushing two years and she still hadn’t really transitioned out of the baby food/ puree world and actually eating solid foods. And we were actually worried that she would kind of drop-down in her weight because she was very, very small when she was first born. And I remember that she was in, I think, under the 10th percentile for the longest time. And even at her- Dare I say biggest peak… her peak, I think she was still under the 30th percentile. So we were worried that she wasn’t getting enough calories because she was just eating basically pureed fruits and hadn’t touched on any type of foods, we actually were referred to the feeding therapist to try and tackle some of those issues.
Lia: So for her it was again like he said more nutritionally focused, her feeding therapy was really like a goal of can we get her to eat beyond baby foods, because she was a toddler now and she was approaching, I think, two, two and a half, although probably pretty close to at least two.
Matt: Yeah.
Lia: And so it started to become a problem that she was only doing baby foods and she was not progressing beyond that. That’s why we really intervened with the feeding therapy there. But for our oldest kid, it was actually not like that at all. The issue for her was more that she was having difficulties with the actual physical process of eating food, she did have certain texture issues, temperature issues, things like that with food. So she still had the sensory component. But it’s like we couldn’t even get to the point of dealing with the sensory component, because she couldn’t even just do the physical mechanics of feeding herself because she’s the one who has hypotonia, which is again, that low muscle tone. So she had a hard time just chewing food, keeping food in her mouth, she would keep her mouth open and food would just like fall out of her mouth, she had issues with coordinating food like her hand going to her mouth, and she couldn’t hold a utensil, there were so many issues whenever she would eat or when we got her to eat, she was doing that thing where you just take your hand and you scoop the food out of the bowl with your hand and then you just kind of like smear it all over your mouth and hope some of it gets in.
Matt: I remember her eating kind of like just a bowl of I think just rice. And she would just grab a handful of rice, and maybe half of it would go in her mouth and the rest would just fall down on her bib. And it wasn’t a very efficient way to eat at all. So she definitely had the two elements going there with her just being able to start feeding herself.
Lia: For her it was really focusing on self-feeding before we could even get to the sensory part. So once we were able to address self-feeding, then that feeding therapy did ultimately turn into also the sensory component. Those were the two reasons we went into feeding therapy, which again, was through occupational therapy. So if you need help you go through them. And some autism centers also have feeding clinics. So you can look through that as well. Just to touch on a little bit of what they did — what they showed us at feeding therapy, just in case you guys are interested in are still on that waitlist. There are a lot of things that you can do at home while you’re working on this. So if your child has issues with self-feeding, or has issues with tolerating certain foods or textures or things like that, we worked really closely with our occupational therapist, and the skills that she taught us really helped us. So one of the things that she taught us essentially was how to slowly transition from basically not touching the food at all to ultimately eating and swallowing the food. This is a very similar technique that we’ll actually talk about in future episodes as well with the other senses. It’s a technique where when you’re dealing with foods specifically, you can start off with just getting your child comfortable with tolerating that food being introduced on their plate. If they’re not tolerating any food, except chicken nuggets, for example, then you might just want to put one piece of broccoli on their plate with the chicken nuggets, and don’t force them to eat it. Don’t force them to touch it, don’t force them to do anything with it. But just get them to the point where they’re comfortable with that piece of broccoli just being on their plate.
Matt: And sometimes even that is a struggle in itself because I’m not sure if when we do it to our daughter, we have a piece of food on her tray or table, I think she has the expectation that we are basically requiring that she eats it. And when we’re starting with step number one, we don’t have that in mind. It’s basically like, let’s just put it right here. Don’t touch it, don’t look at it, just leave it there and then eat something else that you would want to eat. So it’s just getting them used to the idea of here it is, but nothing beyond that basically.
Lia: Yeah, you’re basically desensitizing them at this point to just the exposure of seeing that food. Because sometimes just the visual aspect of it can be a deterrent. One of the things that I did with my kid is I had a plate that I would put on the I guess tray that she’s sitting in, and I have a bowl on the side of it sometimes. And I call this the ‘no thank you bowl’.
Matt: I thought it was the ‘yucky bowl’.
Lia: Well, it was but then I didn’t want her to go around telling people yucky. So I changed it to something more polite to the ‘no thank you bowl’. So I basically put this bowl and then whenever I had the broccoli or whatever on the plate that she didn’t want, she would freak out and be like, no, because she didn’t want it. So what I would do is I would just take that broccoli and I move it to the bowl that is still on her tray. And I would just say oh, it’s okay. We’re putting it in the no-thank-you bowl, you don’t have to eat it. Just leave it in the no-thank you bowl. And when I started teaching her that the things that are in the no-thank-you bowl are things you don’t have to eat, she started to make the association of like, okay, I’m safe. I don’t need to eat things in that bowl. So then she started tolerating having it on her tray.
Matt: And I think it was even good because before that she was just throwing it on the floor. So at least we were able to transition from okay, you’re not throwing it on the floor. You’re putting it in the no thank you bowl and just leaving it there. And there’s no other expectation for you at this time.
Lia: And don’t think that this just takes one day. This is not a one-day thing.
Matt: Yeah, it’s an ongoing struggle.
Lia: It did not take us like one hot second to be like, Oh, look, our kid now does the nice little no-thank-you bowl. Like no, that took work. It took several days to get her to do that, if not more than a week or so.
Matt: And sometimes she’ll forget and it’ll kind of resort back to something is on the floor because she forgot that she can put it in the bowl.
Lia: Yeah, so if you feel like this is like not possible for your child, you can do it. It’s just it’s gonna take time and just have patience. I know it can be stressful. But basically what you do is after you get them to tolerate it on the plate, then you move up a level. So once they’re okay with it being on the plate, then the next level is trying to get them okay with physically touching the piece of broccoli. So you do not require them to taste it. You do not require them to do absolutely anything else other than simply touch it when they do the desirable behavior like touching it or keeping it tolerating it on the table. Make sure to reward them with a lot of praise and enthusiasm. Like oh yeah, you did it. You touched it, you licked it, you did such a good job letting it stay on the plate, that sort of thing.
Matt: Right? I found that we usually try and do something playful. So like for broccoli, for instance. I mean, she likes broccoli, but when she didn’t, we would call it like a baby tree or something. So we would make it fun as far as like, Oh, can you touch the baby tree. So she kind of feels like it’s like a game or something. So I feel like when we kind of are able to get her a little bit excited about touching that food that she wouldn’t eat. At least there’s that element where she’s kind of interested and she’s not completely disgusted and repelled away from whatever it is.
Lia: Yeah, absolutely, always use your child’s special interest if you can. So we definitely did that we tried just incorporating it to any TV show or anything that she had seen like on Cocomelon or anything like that. So if you can do that, go for it back to the little routine you go from tolerating it from being on a plate to touching it. Now the next step taught to us by the OT is once you go from touching it, then you try to get your child to kiss it. So you just take the broccoli and bring it up to your lips and be like oh look, I’m giving it a kiss Wow, and see if they’re okay with just giving it a kiss. But again, no requirement for them to taste it. No requirement beyond that. That’s the important part is you don’t want to rush all these steps at once because then you’re going to lose that trust and you’re gonna have to start all over. So just make sure on this day when you do this, it’s just a kiss. And then after that you progress to getting them to just try to lick it. Just oh here give it a little lick. Can you just lick the broccoli? You don’t have to eat it just take a little lick and then you can put it back in the no thank you Bowl. After you do that. Then you want to move on to can they tolerate just having it sit in their mouth so they just put the broccoli in their mouth? Oh, can you put it in you don’t have to chew You don’t have to eat it, it’s okay just put it in for a second 1..2..3.. Good job. And then you can offer them the no-thank-you bowl, okay, you can spit it out good job, you did great. And then you praise them and praise them. And then once you get to that point, you are now able to get to the step where they can chew. So you have to go through all these phases before you even get to the chewing point. But once you get to that chewing point, you’re not done this time. This time, when they get to the chewing point, you get them to chew. But then again, you do not force them to swallow. If they’re not comfortable, yet, you offer them the no thank you bowl so that if they feel like they need to spit it, you let them spit it out. But then you praise them for the chewing, good job chewing, I’m so proud of you. And then after you get them comfortable with that, you get to the point where you reward the swallowing, the chewing and the swallowing. All of this is not at all to be done in a day, probably not even a week, probably not even a couple of weeks, it probably would take I’d say like a month or so to do this entire routine properly, when you get from tolerating the broccoli on a plate to actually chewing and swallow.
Matt: And I would say the last three, which again would be them holding it in their mouth. And I mean, of course they can spit it out. Same thing with chewing being able to spit as well. And then finally swallowing I would say those are probably the hardest ones, mostly, I mean, because they’re the biggest steps. But also they’re kind of the ones that require a little bit more praise and effort and kind of any other outside source that you can bring in if you have to sing a song to try and get that last push.
Lia: Definitely- like what we’ve learned from our experience is positive encouragement and reinforcement just through praise and making a big deal on a big show and just being like, oh my gosh, she did such a great job. I’m so proud of you. Sometimes I would go in and tickle her. And I would just look like a total fool. But like, you know, kids love that. So it works for them. But we did that. And we did this under again, the support of an OT who walked us through all of this. And honestly, it worked very well for us. We were able to get her to start tolerating foods, particularly the youngest one.
Matt: Right, she had quite a change. I mean, she still likes the little puree, still the baby food pouches, right. But I mean, they’re more of a kind of almost like a like, reward. Yeah, something along those lines. Like I mean, she’ll eat dinner and most of the time, she’ll eat what we give her or she’ll at least try it. And then as like after dinner, she’ll be like walking by the cabinets and will have like a pouch. So we’ll give it to her because-
Lia: Oh my gosh, she’ll sneak them.
Matt: But, But I mean, it’s kind of I mean, a completely different transition from where she was, I mean, a year ago.
Lia: Yeah, it’s actually it’s very interesting that because of feeding therapy, and through this process that I just explained to you, we were able to get our child who was only on purees-and even with the puree, she was specifically doing specific ones, she avoided any sort of squash, pumpkin, potatoes, any sort of things like that- she went from that to literally gnawing on a chicken leg like Flintstones style.
Matt: That was lunch today. But he even for like breakfast. I mean, she’ll ask for like a piece of like bacon and like eggs and things. At first, it was a slow transition as far as her trying new foods. And it was kind of like the standard foods little kids eat kind of the snacks and nothing too adventurous. But then as we kind of kept with the process, she was kind of starting to kind of open up her world a little bit to try new foods, and kind of the rest is history, I guess.
Lia: And the other thing to add there with the feeding therapy aspect of it, things that you can do at home is also modeling that behavior. So one of the things we were able to do too, is because they were not willing to tolerate any sort of dips or sauces, they wouldn’t do ketchup nothing like that. We started just modeling in front of them. So we had these breadsticks. And we were dipping them in marinara and we’re like, Ooh, this is so good. Oh my gosh, but we intentionally didn’t offer them any so that they would just have to like, watch us eating it. And so obviously, little kids get curious and like, Hey, how come I don’t get any of those. So then they started asking us like dip dip dip, and I was like, Oh, you want some? Okay, so then I was like, I guess I’ll be nice to share. And because we kind of created this like, it’s special because you’re not supposed to have it but I’m gonna let you have it. I feel like they kind of fell for it.
Matt: I like that you were going in with this as like a game and I was just like, I’m just gonna eat my breadsticks and dip them in the sauce. And it’s also funny that you’re like, Oh, I’ll share with you and it’s like, I don’t think I’ve really shared my like food like-
Lia: oh, you know I end up eating like a third of my food because they now eat everything.
Matt: No, I mean I would if my kid was really wanting it but I’m kind of like no, this is my plate, I’ll give you some and put on your plate kind of thing.
Lia: But I think that works. I think that works though, like creating this- what’s it called when there’s not enough where you’re like creating scarcity- Yeah, like when you create like a false scarcity to a child they get more curious. They want it more so if you pretend like oh, this is this rare thing. And then they are more excited for it. At least that worked out for us. And of course you give it to them, like we’re not holding out on them or anything. It’s all just like a game of pretend to get them excited about what you’re doing. But you’re not really just trying to be mean, you’re just trying to give them a fun little game and a way to kind of encourage that behavior.
Matt: Oh, is that what you’re doing?
Lia: Yes, that’s what I’m doing. I don’t know what you’re doing.
Matt: I’m just eating my food.
Lia: And not sharing. I mean, I’m the nice one.
Matt: Me and my breadstick.
Lia: and they’re just gonna sit there with puppy dog eyes. Anyway, back on topic, basically, that’s the sensory component part of the feeding therapy. But there’s also a muscular, more physical component of feeding therapy as well, where they work on more of the fine motor parts, hand-eye coordination. And they might even work on the muscle and your jawline, if you have hypotonia like our kid did.
Matt: Right. So there’s a kind of a bunch to unpack there, the fine motor skills as far as just being able to hold on to a spoon, fork, utensil, whatever you’re using, and be able to scoop whatever type of food it is and be able to direct it into your mouth. So that’s kind of step one that we kind of were touching on with our oldest with feeding therapy.
Lia: That in itself took a long time.
Matt: That was quite a challenge because we had to show her that it was even worthwhile to use a spoon versus just her bare hands. And I remember that was a struggle, because obviously, when you’re first trying to teach anyone to use a spoon, and they’re only able to get two beans, or like a few pieces of rice versus their entire hand, I’m sure she wasn’t even seeing the benefit to it when she’s like, I’m not getting as much food. This is a waste of time. But we just had to be very consistent with it that each time she was eating, we had her with a spoon, and we kind of worked with her. So I think this kind of works similar to what you’re talking about kind of the stages with the way that you tolerate the food. The first was being able to have her scoop rice with the spoon.
Lia: Actually remember before that there was a step. Remember, when she didn’t want to tolerate touching tools, she had a very sensitive hand. So our first step was actually just being able to get her to even hold the spoon because she would keep her palms wide open and refuse to hold anything in her palm. So we had to work on desensitizing her hands with an OT, which we did through a lot of like sensory play. They basically recommended that before you start, have her do like clapping games or touching games or things that she could play with Play-Doh, rice, things like that to desensitize them and then you go into holding the spoon.
Matt: Right, she didn’t want to use her fingers, it was always her finger or her palm was pressed out. And she didn’t want to use her fingers to grasp anything. So you’re right, we first had to have her be able to grasp the spoon before she was able to use it. And then from there, we held the spoon with her and were able to direct it to her mouth to feed her. And then as she would slowly get kind of muscle repetition, then we were able to hold I think her hand.
Lia: Yeah, so that’s part of that fading, that we mentioned, on the occupational therapy episode where you kind of slowly fade away further and further from the hand. So you’re like, directly on the hand, then you move to the wrist, then you move to the elbow, then the shoulder then you just kind of pull away.
Matt: Right. So that was one of the main reasons why we’re in feeding therapy in the first place. And then the other area, I think because she was also low muscle tone was we wanted to make sure that she was actually able to chew her food and that her low muscle tone didn’t have an impact on the physical components with the muscles being able to chew. So they were actually looking to see okay, is she able to put her food where her back molars would be in, and actually grind up her food? Or is she just chewing with her front teeth? So remember, that was another big area that they were trying to check and make sure that everything was good there.
Lia: And they also were checking, that’s when they realized that she was having difficulty chewing harder things. So she could only tolerate chewing softer things. And that’s why she would only do like the only meat she would do is like white meat chicken nuggets, because they’re kind of pretty shredded, But she couldn’t do any of like the tougher meats and she still can’t do any of the tougher ones.
Matt: And I was gonna say even now I mean we’ve had her try some fish and chicken very soft, but as far as anything like a little bit more resistance, she hasn’t really ventured too much there. But that was also I think, where we noticed that she was actually pocketing food as well. So she would keep putting food in her mouth, and then it would just kind of sit in her cheek and she wouldn’t swallow she would just hold it in there. And we were actually worried that she would start to choke on some of the things because I mean it’s solid food I mean I understand like Yeah, it kind of will get broken down with like the saliva but some of the things weren’t fully chewed, you just stick it in her cheek and just kind of keep going about.
Lia: For me the time that that freaked me out was when I found out that one night that she had gone to sleep with food pocketed in her cheek and we had no idea until the next morning, right or like we would just see her randomly throughout the day, we would find out that she had food pocketed that we thought she ate that she didn’t. So that started becoming a choking hazard and that was another thing that we worked on in OT and feeding therapy. So basically what we wanted to do is when we were in feeding therapy, we wanted to work on that just those sensory components, but we wanted to work on again, that muscular fine motor components. So she was able to ultimately learn how to use the spoon, scoop the food, and now she is able to put it in her mouth. But one of the reasons we were able to do that was because I found these really cool sets of spoons on Amazon. And there are these bendable spoons (paid link), I’ll put a link to them in the show notes. But what we did with these spoons is they allowed us to gradually bend the angle of the spoon so that she wouldn’t have to do the fine motor coordination movement of moving her wrist all the way that she needed to because she just didn’t have that motor planning skill.
Matt: And I was gonna say they’re still able to be used as normal utensils …honestly, we still give to the kids now to use whenever they’re eating food, but we just keep them straight as like a regular utensil. I mean, they’re like plastic, but they have some resistance where they’re not flopping around. So you can use them like a regular utensils at the same time if you wanted to.
Lia: They’re perfect, like training spoons. And then after that, you can pretty much still use them as a toddler spoon, they work great. I’m not sure if they have anything like that for older kids, because I honestly didn’t look for them. But I know they have weighted utensils for older kids. I’m not sure if that would help with a muscle tone issue. But for us those bending spoons worked really well, when it came to being in therapy that was mostly the biggest benefit for us. And then the other things that we did that we learned through feeding therapy is not just transitioning into eating things and tolerating things. But we started transitioning into changing temperatures or textures of foods or shapes or flavors or colors.
Matt: And I think this was more of a struggle, or we were more aware of it with our oldest one than our youngest one. So we noticed that she was very picky with various foods, and we had to change how they were presented to her. And then that made all the difference in the world. So for example, a lot of fruits, she wouldn’t want them just as we would give them kind of at room temperature. So we would actually put them in the freezer, and then they would basically turn into like a popsicle at that point.
Lia: Yea, it’s very important to note here that I’m just going to interrupt for a second because when you freeze fruits, you have to make sure that you cut them into small enough pieces that they’re not a choking hazard. So if you do take this idea, I just want to inject in here real quick, be cautious of the size, because when they’re frozen, they’re hard and you don’t want them to choke. You can continue.
Matt: So I can’t remember what her favorite I thing she likes…she likes pineapple, I think.
Lia: Pineapple and grapes. Well, that one was one of the ones that we really had to cut carefully.
Matt: Yeah, we would cut a grape-like eight times or something. Yeah, something ridiculous. But I mean, they’re small, small little pieces of like a grape, but she would love when they’re frozen. But then at room temperature, she basically wanted nothing to do with them. So I mean, we were able to find that she would do certain foods, were able to do it just a little bit different of how it’s presented. So even her eating like a peanut butter and jelly sandwich. For example, if we use a star cutout, she’s more likely to want something to do with the star versus like the standard piece of bread.
Lia: And when we introduce peanut butter, that’s actually a good example. So she had a very restricted diet where we basically couldn’t give her anything except like maybe a quesadilla was all she would do, just a plain cheese quesadilla. She would do mostly carbs, just bread, crackers, things like that. She wouldn’t really do anything other than like cheese and crackers, honestly. So what I did to try to introduce peanut butter jelly sandwiches, I initially just gave her a spoon with just peanut butter. And then once she got comfortable with peanut butter — again, I use the same technique I learned from the OT, I then started giving her a spoon with a little bit of peanut butter and a little bit of jelly together on the spoon that I waited till she could tolerate that. Then after I did that, I started putting a little bit of peanut butter on a piece of bread and then a little bit of jelly on a piece of bread. Then I combine it then I gave it to her so that eventually I got her to the peanut butter and jelly sandwich. But it was all super gradual and it takes a lot of time and patience to get to do it step by step.
Matt: And now we’re at what peanut butter and jelly quesadilla?
Lia: Oh, yeah now she invented peanut butter and jelly quesadilla all by herself.
Matt: No cheese.
Lia: No cheese, but she requested it.
Lia: We did not come up with that idea. She did it all by herself. So who knows? I mean, I always say let the kid lead you. So if she wants a peanut butter jelly quesadilla I will give it to her. Why not?
Matt: But I also think that the texture is also key. I remember we’d gotten her… a plain granola bar that basically just just had chocolate chips in the granola. And she was fine eating the granola bar. And so she got to the first chocolate chip and there’s like 1000 chocolate chips in a granola bar. So she basically took one bite and then realized oh, there’s a different consistency. I don’t like that. Right then so we found out that it was quite a struggle if there was any type of food that she was eating that wasn’t consistent the entire way through it. If there’s any type of change, she would kind of spit it out and then she wouldn’t want anything to do with the entire thing she like didn’t trust it anymore. So I think I’m not really sure how we —
Lia: We had to start adding things kind of more shredded. So like when I started trying to add for example, chicken to the quesadilla, I like pulverized it in the machine in the little food processor and put just tiny bits of it in there at first, so she couldn’t notice. And then I would add more cheese and she was okay with it. And then she suddenly wasn’t. So food is something that we are still struggling with our older kids. She goes through like these regression cycles, which can be very typical for autistic kids.
Matt: I also found that I mean, and this might be true of all kids, if she sees something on a TV show, so if she’s watching Cocomelon, and she really wants to try whatever the little kid is eating if we make it for her, there’s a likelihood that she will at least attempt to do it because she saw it on her TV show. So that’s why I think that like if it’s presented in a similar way that she’s excited about it, she might try it. Another example is honestly today with the candy corn pumpkin.
Lia: Oh, yeah.
Matt: Yeah. So she, I mean, she had never tried it before. And we gave her a little pumpkin candy corn, and she took a bite of it, and then thought that okay, it’s okay.
Lia: Because we associated it with like Halloween and this little book that she has as a pumpkin in it and things like that.
Matt: Right, and the piece of candy is actually shaped like a pumpkin right? Granted, she didn’t like the candy corn, but she’s like, well, she liked the pumpkin though. Yeah, So my thing was, if it’s presented in a nice way that she likes she’s more willing to try it. So we had just given her an orange ball of goo that had the same flavor I don’t think she’d be as excited to try it. So it’s almost like because she saw the ‘baby pumkin’ the ‘baby’ special interest food, right? She wanted to at least taste or she felt comfortable with trying just to see what it was.
Lia: So basically it’s just all about getting creative. Sometimes it takes a little more effort than others, but it’s just a matter of trying sometimes there will be regressions, but just keep trying do things try changing the temperature, changing the shape, turning it to a star one day, if your kid is older, if they’re able to communicate, just get ideas from them to see what they would like. And if it’s weird, I mean, it’s still eaten, it’s fine. Like, okay, they want to put chips on pizza. I mean, if that’s what they want to do, as long as they eat it.
Matt: Or if you want to dye milk green or something. I mean, yeah, make it fun.
Lia: But yeah, we’re still trying to make sure they’re getting their nutrients. The other thing that we want to talk about is oral stimming and chewelry and how to prevent your kid from chewing things and what happens when they might eat things that are inedible. So when it comes to the chewing aspect of that part of this like taste issue is they tend to chew on a lot of things. And most of those things tend to be inedible things.
Matt: I always think it’s interesting because they’re willing to chew on like a piece of plastic or like a piece of wood, but they won’t try like the food that has to smell better than like the piece of plastic or whatever it is. Yeah.
Lia: Yeah, I mean, our kid did chew on wood. Right? Her crib, right? Yeah, she chewed on gravel from our driveway. She almost chewed on cat poop that one time remember,I had to catch her before? Yeah, she almost put it in her mouth.
Matt: But for one of them, I think she was like associated as like a peanut butter and jelly sandwich. Like she was at the park picking up bark and putting in her mouth saying like, Oh, peanut butter and jelly sandwich.
Lia: We had a lot of issues with her chewing things that were inedible and mean downright dangerous sometimes.
Matt: Right.
Lia: But basically, what we did is always try to replicate what that thing is that they’re seeking with something that is similar. So if your kid is, for example, eating gravel, like our kid was eating, it would not make sense to try to replicate them eating gravel by giving them a chewy, that is just like a silicone rubber chewy because it doesn’t give the same sensation. So what I did for that is, for example, is I replicated the texture and taste of gravel by giving her crushed ice. And she really liked cold temperatures as well. So that alarming taste of the cold temperature mixed with the same crunchy gravelly texture as the gravel worked really well as a replacement.
Matt: Right, but so that that was a good long-term solution, because I mean, she still likes crushed ice and a little cup to go around chewing on it. But I also thought that in the short term, we also tried to redirect a lot and give her like something else to focus on. So like our driveway was gravel. So if we were able to have her focused on something that she was carrying, so she’s obsessed with ducks. So if we were like, oh, carry your bucket of ducks, so she’s focused on carrying her bucket of ducks, she would be less likely to like reach down and grab the gravel because she’s focused on something else. I think if we’re able to redirect, oh, look at the flowers or something. So she’s not focused on staring at the gravel as she’s walking.
Lia: The other thing that we did is we also gave her pretzel rods to anticipate. So that was something that they taught us in OT as well is when you know when you can anticipate that they’re going to probably be putting something in their mouth so we could anticipate when she was going to try to put gravel in her mouth because it was every time we were going out to the car. So what we did is we anticipated this and so we gave her two large pretzel rods to hold one in each hand for the walk out to the car so that A- she’d already had stuff in our hands so she couldn’t reach for gravel and B-if she wanted to chew on something, we could redirect it to the pretzel rods that were in her hands that are more appropriate
Matt: Right. So I think with those kind of two techniques, that’s kind of the short-term immediate. And then as far as like the crushed ice in our case for the long term, I mean, we saw good results with that as far as being able to shift away from gravel eating.
Lia: So if you feel like your kid might have pica, or any issues with chewing things that aren’t edible, just consult with an OT, an Occupational Therapist, and they can help you come up with techniques. Pica can lead to things like high lead levels. So if you do feel like your child is, you know, experiencing pica, just make sure to talk to your pediatrician and maybe consider getting a lead test because our child did have a little bit of a higher lead count in her bloodstream because of the pica and that can always lead to issues. So it’s just something to take into consideration and monitor closely with your doctor.
Matt: Yeah, I would say definitely get on top of that, because you’re not sure exactly as far as any type of like toxins of what they’re eating or putting their mouth that might have some type of pesticide or something on it that I mean can definitely harm them.
Lia: And to get on the little bit nerdy side of this, I can touch on a tiny bit of science for the end of this episode, and one that comes to mind specifically was about pica. I actually found some research that showed that children on the autism spectrum and those with other developmental disabilities are actually disproportionately affected by both pica and GI symptoms, gastrointestinal symptoms, which makes sense that would be coordinated because if you are putting things into your system that shouldn’t be there, you probably will have gi problems.
Matt: I was wondering like, is it just like the GI problems? Or is it in connection with them?
Lia: In connection, there was a correlation? Yeah. And what they also said is that among preschool-aged children, the prevalence of pica was actually around 28%. In children who had both autism and intellectual delay. It was 14% in children who had autism without intellectual delay, and it’s about 10% and children who just had intellectual delay without autism. But this is in comparison to less than 4% of the neurotypical children population. So basically, what this means, in summary, is that 42% approximately of pica cases involved autism.
Matt: That’s kind of alarming when you figure I mean that that’s something just shy of half, there’s a strong possibility if your kid is diagnosed with autism that you are going to encounter pica, potentially at some point, we had two autistic girls, and both of them are putting inedible objects in their mouth.
Lia: So on more of the taste end of things, what was really interesting is there’s another study that was done that was looking into taste, reactivity and autism. And they basically found that taste is actually affected in the autistic brain. So how they experience taste has been found to be different than how neurotypical people experience taste. So specifically, this was in reference to things that tasted sweet, as well as things that were sour and bitter. What they found basically was that there was irregular function and functional connectivity of the brain and the parts that were related to taste. The interesting part about that is those parts of the brain were also associated with like social functions. So what it seems to be is that in the autistic brain, the parts of the brain that are associated with taste, because the social part of the brain is kind of lacking because Autistic individuals struggle with that social aspect, that part of the brain is kind of lacking. So it seems like the taste part of the brain took over a little bit of the social part of the brain.
Matt: So kind of the neuroplasticity.
Lia: Yeah, neuroplasticity thing. So it kind of in layman’s terms, it’s kind of like it took over a little bit and that because of that the taste buds and the taste sensations are a little bit like out of whack in comparison to the neurotypicals so I thought that was like pretty interesting, too.
Matt: Yeah, because I mean, that would explain why they might not want to eat some foods that we’re we’re putting in front of them and why they have to use the yucky bowl- no thank you bowl.
Lia: The no thank you bowl. But what’s kind of cool that the research also shows is that it seems like these things can potentially their theorizing may be able to be treatable with neurofeedback and neurostimulation. So brain stimulation, and usually called TMS therapy. These are things that I actually did as an EEG technician. So if you guys are interested, let me know via message or email us at podcast@autismwish.org. And let me know if you want me to talk about that, because I can talk about what that entails. Just basically briefly, they’re saying that because these things seem to be correlated to over-activity and under-activity in areas of the brain, they’re saying that theoretically, you might actually be able to treat some of these symptoms by doing some sort of neurological Neurofeedback type of therapy.
Matt: That would be interesting to find out results in the near future maybe.
Lia: Yeah, so I know that when I when I did work as an EEG technician, I did see a lot of results for other things like ADHD and things like that. So I would not be surprised that this was also something that can be treatable. I’m happy with my kids the way they are and if it’s something that they’re really struggling and it’s something they really need help with, I have no problem having them go through some sort of treatment to help them out if necessary, but if If it’s not harming them directly, and they’re not upset about it, I don’t have a problem not doing it either. It’s kind of like to each their own.
Lia: That’s basically all we have for you guys now for the taste episode, we basically will just keep rolling through all the senses. We’ve got a couple more to go and then we’ll switch over to behavioral stuff. But that’s it for taste. And I hope you guys learned a little bit.
Matt: Alright we’ll see you next time.
Lia: See you next time.
Outro:
Lia: In this episode, we discussed how addressing pica with a doctor is important to avoid possible medical complications. How substitutions have similarly textured edibles can replace harmful eating behaviors, and how the autistic brain may be wired to experience taste differently. Tune in next time as we focus on the sense of touch and answer questions such as, how can I dress head banging? Why is my kid toe-walking? Why does my kid always squeeze into tight spaces?
Lia: This is Embracing Autism!
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Resources:
Bendable spoons from Amazon (paid link)
PICA Prevalence in Autism
Association between pica and Autism in preschoolers with and without autism
Disclaimer: These notes include Paid Affiliate links. AutismWish would receive a small percentage of the purchase value if the above links are used.
Show Notes for Embracing Autism Podcast — Ep. 203
Intro
Lia: In today’s episode, we will touch on the sense of taste and how autistic individuals may experience this sense differently than their neurotypical peers. We discussed feeding therapy, as well as pica, oral stimming and transitioning to self-feeding.
Lia: Welcome to Embracing Autism, a podcast for parents of autistic children seeking advice and support while spreading awareness and acceptance of Autism Spectrum Disorder.
Lia: I’m Lia!
Matt: And I’m Matt!
Lia: And each week, we’ll discuss our journey with autism and talk about how to embrace your child’s individuality while providing guidance, tips, resources and sharing our personal stories.
Lia: This is —
Lia & Matt: Embracing Autism!
Discussion:
Lia: Hey Everyone, in today’s episode, we will be doing all things taste-related. And that is our sense for the day. But we’re not limiting it to specifically taste. We’re also limiting it to oral-related things like oral stimming, or oral-related muscle issues, things like that. So it’s not just taste. It’s like all things mouth related if that makes sense.
Matt: Right, And touching on kind of some therapy action as well in there.
Lia: Yeah, so we don’t really know what to call that. But we felt that all these things kind of relate together under the tastes category for both the taste purposes, but also the oral and muscular mouth part of it.
Matt: Well said.
Lia: Can you tell I’m not a speech-language pathologist? So one of the things that we wanted to just dive right in here at the beginning is really focus on feeding therapy for this episode, because when it came to the sense of taste for us, and our kids feeding therapy was a big issue. Both of our children actually had to go through feeding therapy, which is usually done through an occupational therapist.
Matt: So for our youngest daughter, the reason that we actually went through feeding therapy was more of a nutrition route. I think she was probably about a year and a half pushing two years and she still hadn’t really transitioned out of the baby food/ puree world and actually eating solid foods. And we were actually worried that she would kind of drop-down in her weight because she was very, very small when she was first born. And I remember that she was in, I think, under the 10th percentile for the longest time. And even at her- Dare I say biggest peak… her peak, I think she was still under the 30th percentile. So we were worried that she wasn’t getting enough calories because she was just eating basically pureed fruits and hadn’t touched on any type of foods, we actually were referred to the feeding therapist to try and tackle some of those issues.
Lia: So for her it was again like he said more nutritionally focused, her feeding therapy was really like a goal of can we get her to eat beyond baby foods, because she was a toddler now and she was approaching, I think, two, two and a half, although probably pretty close to at least two.
Matt: Yeah.
Lia: And so it started to become a problem that she was only doing baby foods and she was not progressing beyond that. That’s why we really intervened with the feeding therapy there. But for our oldest kid, it was actually not like that at all. The issue for her was more that she was having difficulties with the actual physical process of eating food, she did have certain texture issues, temperature issues, things like that with food. So she still had the sensory component. But it’s like we couldn’t even get to the point of dealing with the sensory component, because she couldn’t even just do the physical mechanics of feeding herself because she’s the one who has hypotonia, which is again, that low muscle tone. So she had a hard time just chewing food, keeping food in her mouth, she would keep her mouth open and food would just like fall out of her mouth, she had issues with coordinating food like her hand going to her mouth, and she couldn’t hold a utensil, there were so many issues whenever she would eat or when we got her to eat, she was doing that thing where you just take your hand and you scoop the food out of the bowl with your hand and then you just kind of like smear it all over your mouth and hope some of it gets in.
Matt: I remember her eating kind of like just a bowl of I think just rice. And she would just grab a handful of rice, and maybe half of it would go in her mouth and the rest would just fall down on her bib. And it wasn’t a very efficient way to eat at all. So she definitely had the two elements going there with her just being able to start feeding herself.
Lia: For her it was really focusing on self-feeding before we could even get to the sensory part. So once we were able to address self-feeding, then that feeding therapy did ultimately turn into also the sensory component. Those were the two reasons we went into feeding therapy, which again, was through occupational therapy. So if you need help you go through them. And some autism centers also have feeding clinics. So you can look through that as well. Just to touch on a little bit of what they did — what they showed us at feeding therapy, just in case you guys are interested in are still on that waitlist. There are a lot of things that you can do at home while you’re working on this. So if your child has issues with self-feeding, or has issues with tolerating certain foods or textures or things like that, we worked really closely with our occupational therapist, and the skills that she taught us really helped us. So one of the things that she taught us essentially was how to slowly transition from basically not touching the food at all to ultimately eating and swallowing the food. This is a very similar technique that we’ll actually talk about in future episodes as well with the other senses. It’s a technique where when you’re dealing with foods specifically, you can start off with just getting your child comfortable with tolerating that food being introduced on their plate. If they’re not tolerating any food, except chicken nuggets, for example, then you might just want to put one piece of broccoli on their plate with the chicken nuggets, and don’t force them to eat it. Don’t force them to touch it, don’t force them to do anything with it. But just get them to the point where they’re comfortable with that piece of broccoli just being on their plate.
Matt: And sometimes even that is a struggle in itself because I’m not sure if when we do it to our daughter, we have a piece of food on her tray or table, I think she has the expectation that we are basically requiring that she eats it. And when we’re starting with step number one, we don’t have that in mind. It’s basically like, let’s just put it right here. Don’t touch it, don’t look at it, just leave it there and then eat something else that you would want to eat. So it’s just getting them used to the idea of here it is, but nothing beyond that basically.
Lia: Yeah, you’re basically desensitizing them at this point to just the exposure of seeing that food. Because sometimes just the visual aspect of it can be a deterrent. One of the things that I did with my kid is I had a plate that I would put on the I guess tray that she’s sitting in, and I have a bowl on the side of it sometimes. And I call this the ‘no thank you bowl’.
Matt: I thought it was the ‘yucky bowl’.
Lia: Well, it was but then I didn’t want her to go around telling people yucky. So I changed it to something more polite to the ‘no thank you bowl’. So I basically put this bowl and then whenever I had the broccoli or whatever on the plate that she didn’t want, she would freak out and be like, no, because she didn’t want it. So what I would do is I would just take that broccoli and I move it to the bowl that is still on her tray. And I would just say oh, it’s okay. We’re putting it in the no-thank-you bowl, you don’t have to eat it. Just leave it in the no-thank you bowl. And when I started teaching her that the things that are in the no-thank-you bowl are things you don’t have to eat, she started to make the association of like, okay, I’m safe. I don’t need to eat things in that bowl. So then she started tolerating having it on her tray.
Matt: And I think it was even good because before that she was just throwing it on the floor. So at least we were able to transition from okay, you’re not throwing it on the floor. You’re putting it in the no thank you bowl and just leaving it there. And there’s no other expectation for you at this time.
Lia: And don’t think that this just takes one day. This is not a one-day thing.
Matt: Yeah, it’s an ongoing struggle.
Lia: It did not take us like one hot second to be like, Oh, look, our kid now does the nice little no-thank-you bowl. Like no, that took work. It took several days to get her to do that, if not more than a week or so.
Matt: And sometimes she’ll forget and it’ll kind of resort back to something is on the floor because she forgot that she can put it in the bowl.
Lia: Yeah, so if you feel like this is like not possible for your child, you can do it. It’s just it’s gonna take time and just have patience. I know it can be stressful. But basically what you do is after you get them to tolerate it on the plate, then you move up a level. So once they’re okay with it being on the plate, then the next level is trying to get them okay with physically touching the piece of broccoli. So you do not require them to taste it. You do not require them to do absolutely anything else other than simply touch it when they do the desirable behavior like touching it or keeping it tolerating it on the table. Make sure to reward them with a lot of praise and enthusiasm. Like oh yeah, you did it. You touched it, you licked it, you did such a good job letting it stay on the plate, that sort of thing.
Matt: Right? I found that we usually try and do something playful. So like for broccoli, for instance. I mean, she likes broccoli, but when she didn’t, we would call it like a baby tree or something. So we would make it fun as far as like, Oh, can you touch the baby tree. So she kind of feels like it’s like a game or something. So I feel like when we kind of are able to get her a little bit excited about touching that food that she wouldn’t eat. At least there’s that element where she’s kind of interested and she’s not completely disgusted and repelled away from whatever it is.
Lia: Yeah, absolutely, always use your child’s special interest if you can. So we definitely did that we tried just incorporating it to any TV show or anything that she had seen like on Cocomelon or anything like that. So if you can do that, go for it back to the little routine you go from tolerating it from being on a plate to touching it. Now the next step taught to us by the OT is once you go from touching it, then you try to get your child to kiss it. So you just take the broccoli and bring it up to your lips and be like oh look, I’m giving it a kiss Wow, and see if they’re okay with just giving it a kiss. But again, no requirement for them to taste it. No requirement beyond that. That’s the important part is you don’t want to rush all these steps at once because then you’re going to lose that trust and you’re gonna have to start all over. So just make sure on this day when you do this, it’s just a kiss. And then after that you progress to getting them to just try to lick it. Just oh here give it a little lick. Can you just lick the broccoli? You don’t have to eat it just take a little lick and then you can put it back in the no thank you Bowl. After you do that. Then you want to move on to can they tolerate just having it sit in their mouth so they just put the broccoli in their mouth? Oh, can you put it in you don’t have to chew You don’t have to eat it, it’s okay just put it in for a second 1..2..3.. Good job. And then you can offer them the no-thank-you bowl, okay, you can spit it out good job, you did great. And then you praise them and praise them. And then once you get to that point, you are now able to get to the step where they can chew. So you have to go through all these phases before you even get to the chewing point. But once you get to that chewing point, you’re not done this time. This time, when they get to the chewing point, you get them to chew. But then again, you do not force them to swallow. If they’re not comfortable, yet, you offer them the no thank you bowl so that if they feel like they need to spit it, you let them spit it out. But then you praise them for the chewing, good job chewing, I’m so proud of you. And then after you get them comfortable with that, you get to the point where you reward the swallowing, the chewing and the swallowing. All of this is not at all to be done in a day, probably not even a week, probably not even a couple of weeks, it probably would take I’d say like a month or so to do this entire routine properly, when you get from tolerating the broccoli on a plate to actually chewing and swallow.
Matt: And I would say the last three, which again would be them holding it in their mouth. And I mean, of course they can spit it out. Same thing with chewing being able to spit as well. And then finally swallowing I would say those are probably the hardest ones, mostly, I mean, because they’re the biggest steps. But also they’re kind of the ones that require a little bit more praise and effort and kind of any other outside source that you can bring in if you have to sing a song to try and get that last push.
Lia: Definitely- like what we’ve learned from our experience is positive encouragement and reinforcement just through praise and making a big deal on a big show and just being like, oh my gosh, she did such a great job. I’m so proud of you. Sometimes I would go in and tickle her. And I would just look like a total fool. But like, you know, kids love that. So it works for them. But we did that. And we did this under again, the support of an OT who walked us through all of this. And honestly, it worked very well for us. We were able to get her to start tolerating foods, particularly the youngest one.
Matt: Right, she had quite a change. I mean, she still likes the little puree, still the baby food pouches, right. But I mean, they’re more of a kind of almost like a like, reward. Yeah, something along those lines. Like I mean, she’ll eat dinner and most of the time, she’ll eat what we give her or she’ll at least try it. And then as like after dinner, she’ll be like walking by the cabinets and will have like a pouch. So we’ll give it to her because-
Lia: Oh my gosh, she’ll sneak them.
Matt: But, But I mean, it’s kind of I mean, a completely different transition from where she was, I mean, a year ago.
Lia: Yeah, it’s actually it’s very interesting that because of feeding therapy, and through this process that I just explained to you, we were able to get our child who was only on purees-and even with the puree, she was specifically doing specific ones, she avoided any sort of squash, pumpkin, potatoes, any sort of things like that- she went from that to literally gnawing on a chicken leg like Flintstones style.
Matt: That was lunch today. But he even for like breakfast. I mean, she’ll ask for like a piece of like bacon and like eggs and things. At first, it was a slow transition as far as her trying new foods. And it was kind of like the standard foods little kids eat kind of the snacks and nothing too adventurous. But then as we kind of kept with the process, she was kind of starting to kind of open up her world a little bit to try new foods, and kind of the rest is history, I guess.
Lia: And the other thing to add there with the feeding therapy aspect of it, things that you can do at home is also modeling that behavior. So one of the things we were able to do too, is because they were not willing to tolerate any sort of dips or sauces, they wouldn’t do ketchup nothing like that. We started just modeling in front of them. So we had these breadsticks. And we were dipping them in marinara and we’re like, Ooh, this is so good. Oh my gosh, but we intentionally didn’t offer them any so that they would just have to like, watch us eating it. And so obviously, little kids get curious and like, Hey, how come I don’t get any of those. So then they started asking us like dip dip dip, and I was like, Oh, you want some? Okay, so then I was like, I guess I’ll be nice to share. And because we kind of created this like, it’s special because you’re not supposed to have it but I’m gonna let you have it. I feel like they kind of fell for it.
Matt: I like that you were going in with this as like a game and I was just like, I’m just gonna eat my breadsticks and dip them in the sauce. And it’s also funny that you’re like, Oh, I’ll share with you and it’s like, I don’t think I’ve really shared my like food like-
Lia: oh, you know I end up eating like a third of my food because they now eat everything.
Matt: No, I mean I would if my kid was really wanting it but I’m kind of like no, this is my plate, I’ll give you some and put on your plate kind of thing.
Lia: But I think that works. I think that works though, like creating this- what’s it called when there’s not enough where you’re like creating scarcity- Yeah, like when you create like a false scarcity to a child they get more curious. They want it more so if you pretend like oh, this is this rare thing. And then they are more excited for it. At least that worked out for us. And of course you give it to them, like we’re not holding out on them or anything. It’s all just like a game of pretend to get them excited about what you’re doing. But you’re not really just trying to be mean, you’re just trying to give them a fun little game and a way to kind of encourage that behavior.
Matt: Oh, is that what you’re doing?
Lia: Yes, that’s what I’m doing. I don’t know what you’re doing.
Matt: I’m just eating my food.
Lia: And not sharing. I mean, I’m the nice one.
Matt: Me and my breadstick.
Lia: and they’re just gonna sit there with puppy dog eyes. Anyway, back on topic, basically, that’s the sensory component part of the feeding therapy. But there’s also a muscular, more physical component of feeding therapy as well, where they work on more of the fine motor parts, hand-eye coordination. And they might even work on the muscle and your jawline, if you have hypotonia like our kid did.
Matt: Right. So there’s a kind of a bunch to unpack there, the fine motor skills as far as just being able to hold on to a spoon, fork, utensil, whatever you’re using, and be able to scoop whatever type of food it is and be able to direct it into your mouth. So that’s kind of step one that we kind of were touching on with our oldest with feeding therapy.
Lia: That in itself took a long time.
Matt: That was quite a challenge because we had to show her that it was even worthwhile to use a spoon versus just her bare hands. And I remember that was a struggle, because obviously, when you’re first trying to teach anyone to use a spoon, and they’re only able to get two beans, or like a few pieces of rice versus their entire hand, I’m sure she wasn’t even seeing the benefit to it when she’s like, I’m not getting as much food. This is a waste of time. But we just had to be very consistent with it that each time she was eating, we had her with a spoon, and we kind of worked with her. So I think this kind of works similar to what you’re talking about kind of the stages with the way that you tolerate the food. The first was being able to have her scoop rice with the spoon.
Lia: Actually remember before that there was a step. Remember, when she didn’t want to tolerate touching tools, she had a very sensitive hand. So our first step was actually just being able to get her to even hold the spoon because she would keep her palms wide open and refuse to hold anything in her palm. So we had to work on desensitizing her hands with an OT, which we did through a lot of like sensory play. They basically recommended that before you start, have her do like clapping games or touching games or things that she could play with Play-Doh, rice, things like that to desensitize them and then you go into holding the spoon.
Matt: Right, she didn’t want to use her fingers, it was always her finger or her palm was pressed out. And she didn’t want to use her fingers to grasp anything. So you’re right, we first had to have her be able to grasp the spoon before she was able to use it. And then from there, we held the spoon with her and were able to direct it to her mouth to feed her. And then as she would slowly get kind of muscle repetition, then we were able to hold I think her hand.
Lia: Yeah, so that’s part of that fading, that we mentioned, on the occupational therapy episode where you kind of slowly fade away further and further from the hand. So you’re like, directly on the hand, then you move to the wrist, then you move to the elbow, then the shoulder then you just kind of pull away.
Matt: Right. So that was one of the main reasons why we’re in feeding therapy in the first place. And then the other area, I think because she was also low muscle tone was we wanted to make sure that she was actually able to chew her food and that her low muscle tone didn’t have an impact on the physical components with the muscles being able to chew. So they were actually looking to see okay, is she able to put her food where her back molars would be in, and actually grind up her food? Or is she just chewing with her front teeth? So remember, that was another big area that they were trying to check and make sure that everything was good there.
Lia: And they also were checking, that’s when they realized that she was having difficulty chewing harder things. So she could only tolerate chewing softer things. And that’s why she would only do like the only meat she would do is like white meat chicken nuggets, because they’re kind of pretty shredded, But she couldn’t do any of like the tougher meats and she still can’t do any of the tougher ones.
Matt: And I was gonna say even now I mean we’ve had her try some fish and chicken very soft, but as far as anything like a little bit more resistance, she hasn’t really ventured too much there. But that was also I think, where we noticed that she was actually pocketing food as well. So she would keep putting food in her mouth, and then it would just kind of sit in her cheek and she wouldn’t swallow she would just hold it in there. And we were actually worried that she would start to choke on some of the things because I mean it’s solid food I mean I understand like Yeah, it kind of will get broken down with like the saliva but some of the things weren’t fully chewed, you just stick it in her cheek and just kind of keep going about.
Lia: For me the time that that freaked me out was when I found out that one night that she had gone to sleep with food pocketed in her cheek and we had no idea until the next morning, right or like we would just see her randomly throughout the day, we would find out that she had food pocketed that we thought she ate that she didn’t. So that started becoming a choking hazard and that was another thing that we worked on in OT and feeding therapy. So basically what we wanted to do is when we were in feeding therapy, we wanted to work on that just those sensory components, but we wanted to work on again, that muscular fine motor components. So she was able to ultimately learn how to use the spoon, scoop the food, and now she is able to put it in her mouth. But one of the reasons we were able to do that was because I found these really cool sets of spoons on Amazon. And there are these bendable spoons (paid link), I’ll put a link to them in the show notes. But what we did with these spoons is they allowed us to gradually bend the angle of the spoon so that she wouldn’t have to do the fine motor coordination movement of moving her wrist all the way that she needed to because she just didn’t have that motor planning skill.
Matt: And I was gonna say they’re still able to be used as normal utensils …honestly, we still give to the kids now to use whenever they’re eating food, but we just keep them straight as like a regular utensil. I mean, they’re like plastic, but they have some resistance where they’re not flopping around. So you can use them like a regular utensils at the same time if you wanted to.
Lia: They’re perfect, like training spoons. And then after that, you can pretty much still use them as a toddler spoon, they work great. I’m not sure if they have anything like that for older kids, because I honestly didn’t look for them. But I know they have weighted utensils for older kids. I’m not sure if that would help with a muscle tone issue. But for us those bending spoons worked really well, when it came to being in therapy that was mostly the biggest benefit for us. And then the other things that we did that we learned through feeding therapy is not just transitioning into eating things and tolerating things. But we started transitioning into changing temperatures or textures of foods or shapes or flavors or colors.
Matt: And I think this was more of a struggle, or we were more aware of it with our oldest one than our youngest one. So we noticed that she was very picky with various foods, and we had to change how they were presented to her. And then that made all the difference in the world. So for example, a lot of fruits, she wouldn’t want them just as we would give them kind of at room temperature. So we would actually put them in the freezer, and then they would basically turn into like a popsicle at that point.
Lia: Yea, it’s very important to note here that I’m just going to interrupt for a second because when you freeze fruits, you have to make sure that you cut them into small enough pieces that they’re not a choking hazard. So if you do take this idea, I just want to inject in here real quick, be cautious of the size, because when they’re frozen, they’re hard and you don’t want them to choke. You can continue.
Matt: So I can’t remember what her favorite I thing she likes…she likes pineapple, I think.
Lia: Pineapple and grapes. Well, that one was one of the ones that we really had to cut carefully.
Matt: Yeah, we would cut a grape-like eight times or something. Yeah, something ridiculous. But I mean, they’re small, small little pieces of like a grape, but she would love when they’re frozen. But then at room temperature, she basically wanted nothing to do with them. So I mean, we were able to find that she would do certain foods, were able to do it just a little bit different of how it’s presented. So even her eating like a peanut butter and jelly sandwich. For example, if we use a star cutout, she’s more likely to want something to do with the star versus like the standard piece of bread.
Lia: And when we introduce peanut butter, that’s actually a good example. So she had a very restricted diet where we basically couldn’t give her anything except like maybe a quesadilla was all she would do, just a plain cheese quesadilla. She would do mostly carbs, just bread, crackers, things like that. She wouldn’t really do anything other than like cheese and crackers, honestly. So what I did to try to introduce peanut butter jelly sandwiches, I initially just gave her a spoon with just peanut butter. And then once she got comfortable with peanut butter — again, I use the same technique I learned from the OT, I then started giving her a spoon with a little bit of peanut butter and a little bit of jelly together on the spoon that I waited till she could tolerate that. Then after I did that, I started putting a little bit of peanut butter on a piece of bread and then a little bit of jelly on a piece of bread. Then I combine it then I gave it to her so that eventually I got her to the peanut butter and jelly sandwich. But it was all super gradual and it takes a lot of time and patience to get to do it step by step.
Matt: And now we’re at what peanut butter and jelly quesadilla?
Lia: Oh, yeah now she invented peanut butter and jelly quesadilla all by herself.
Matt: No cheese.
Lia: No cheese, but she requested it.
Lia: We did not come up with that idea. She did it all by herself. So who knows? I mean, I always say let the kid lead you. So if she wants a peanut butter jelly quesadilla I will give it to her. Why not?
Matt: But I also think that the texture is also key. I remember we’d gotten her… a plain granola bar that basically just just had chocolate chips in the granola. And she was fine eating the granola bar. And so she got to the first chocolate chip and there’s like 1000 chocolate chips in a granola bar. So she basically took one bite and then realized oh, there’s a different consistency. I don’t like that. Right then so we found out that it was quite a struggle if there was any type of food that she was eating that wasn’t consistent the entire way through it. If there’s any type of change, she would kind of spit it out and then she wouldn’t want anything to do with the entire thing she like didn’t trust it anymore. So I think I’m not really sure how we —
Lia: We had to start adding things kind of more shredded. So like when I started trying to add for example, chicken to the quesadilla, I like pulverized it in the machine in the little food processor and put just tiny bits of it in there at first, so she couldn’t notice. And then I would add more cheese and she was okay with it. And then she suddenly wasn’t. So food is something that we are still struggling with our older kids. She goes through like these regression cycles, which can be very typical for autistic kids.
Matt: I also found that I mean, and this might be true of all kids, if she sees something on a TV show, so if she’s watching Cocomelon, and she really wants to try whatever the little kid is eating if we make it for her, there’s a likelihood that she will at least attempt to do it because she saw it on her TV show. So that’s why I think that like if it’s presented in a similar way that she’s excited about it, she might try it. Another example is honestly today with the candy corn pumpkin.
Lia: Oh, yeah.
Matt: Yeah. So she, I mean, she had never tried it before. And we gave her a little pumpkin candy corn, and she took a bite of it, and then thought that okay, it’s okay.
Lia: Because we associated it with like Halloween and this little book that she has as a pumpkin in it and things like that.
Matt: Right, and the piece of candy is actually shaped like a pumpkin right? Granted, she didn’t like the candy corn, but she’s like, well, she liked the pumpkin though. Yeah, So my thing was, if it’s presented in a nice way that she likes she’s more willing to try it. So we had just given her an orange ball of goo that had the same flavor I don’t think she’d be as excited to try it. So it’s almost like because she saw the ‘baby pumkin’ the ‘baby’ special interest food, right? She wanted to at least taste or she felt comfortable with trying just to see what it was.
Lia: So basically it’s just all about getting creative. Sometimes it takes a little more effort than others, but it’s just a matter of trying sometimes there will be regressions, but just keep trying do things try changing the temperature, changing the shape, turning it to a star one day, if your kid is older, if they’re able to communicate, just get ideas from them to see what they would like. And if it’s weird, I mean, it’s still eaten, it’s fine. Like, okay, they want to put chips on pizza. I mean, if that’s what they want to do, as long as they eat it.
Matt: Or if you want to dye milk green or something. I mean, yeah, make it fun.
Lia: But yeah, we’re still trying to make sure they’re getting their nutrients. The other thing that we want to talk about is oral stimming and chewelry and how to prevent your kid from chewing things and what happens when they might eat things that are inedible. So when it comes to the chewing aspect of that part of this like taste issue is they tend to chew on a lot of things. And most of those things tend to be inedible things.
Matt: I always think it’s interesting because they’re willing to chew on like a piece of plastic or like a piece of wood, but they won’t try like the food that has to smell better than like the piece of plastic or whatever it is. Yeah.
Lia: Yeah, I mean, our kid did chew on wood. Right? Her crib, right? Yeah, she chewed on gravel from our driveway. She almost chewed on cat poop that one time remember,I had to catch her before? Yeah, she almost put it in her mouth.
Matt: But for one of them, I think she was like associated as like a peanut butter and jelly sandwich. Like she was at the park picking up bark and putting in her mouth saying like, Oh, peanut butter and jelly sandwich.
Lia: We had a lot of issues with her chewing things that were inedible and mean downright dangerous sometimes.
Matt: Right.
Lia: But basically, what we did is always try to replicate what that thing is that they’re seeking with something that is similar. So if your kid is, for example, eating gravel, like our kid was eating, it would not make sense to try to replicate them eating gravel by giving them a chewy, that is just like a silicone rubber chewy because it doesn’t give the same sensation. So what I did for that is, for example, is I replicated the texture and taste of gravel by giving her crushed ice. And she really liked cold temperatures as well. So that alarming taste of the cold temperature mixed with the same crunchy gravelly texture as the gravel worked really well as a replacement.
Matt: Right, but so that that was a good long-term solution, because I mean, she still likes crushed ice and a little cup to go around chewing on it. But I also thought that in the short term, we also tried to redirect a lot and give her like something else to focus on. So like our driveway was gravel. So if we were able to have her focused on something that she was carrying, so she’s obsessed with ducks. So if we were like, oh, carry your bucket of ducks, so she’s focused on carrying her bucket of ducks, she would be less likely to like reach down and grab the gravel because she’s focused on something else. I think if we’re able to redirect, oh, look at the flowers or something. So she’s not focused on staring at the gravel as she’s walking.
Lia: The other thing that we did is we also gave her pretzel rods to anticipate. So that was something that they taught us in OT as well is when you know when you can anticipate that they’re going to probably be putting something in their mouth so we could anticipate when she was going to try to put gravel in her mouth because it was every time we were going out to the car. So what we did is we anticipated this and so we gave her two large pretzel rods to hold one in each hand for the walk out to the car so that A- she’d already had stuff in our hands so she couldn’t reach for gravel and B-if she wanted to chew on something, we could redirect it to the pretzel rods that were in her hands that are more appropriate
Matt: Right. So I think with those kind of two techniques, that’s kind of the short-term immediate. And then as far as like the crushed ice in our case for the long term, I mean, we saw good results with that as far as being able to shift away from gravel eating.
Lia: So if you feel like your kid might have pica, or any issues with chewing things that aren’t edible, just consult with an OT, an Occupational Therapist, and they can help you come up with techniques. Pica can lead to things like high lead levels. So if you do feel like your child is, you know, experiencing pica, just make sure to talk to your pediatrician and maybe consider getting a lead test because our child did have a little bit of a higher lead count in her bloodstream because of the pica and that can always lead to issues. So it’s just something to take into consideration and monitor closely with your doctor.
Matt: Yeah, I would say definitely get on top of that, because you’re not sure exactly as far as any type of like toxins of what they’re eating or putting their mouth that might have some type of pesticide or something on it that I mean can definitely harm them.
Lia: And to get on the little bit nerdy side of this, I can touch on a tiny bit of science for the end of this episode, and one that comes to mind specifically was about pica. I actually found some research that showed that children on the autism spectrum and those with other developmental disabilities are actually disproportionately affected by both pica and GI symptoms, gastrointestinal symptoms, which makes sense that would be coordinated because if you are putting things into your system that shouldn’t be there, you probably will have gi problems.
Matt: I was wondering like, is it just like the GI problems? Or is it in connection with them?
Lia: In connection, there was a correlation? Yeah. And what they also said is that among preschool-aged children, the prevalence of pica was actually around 28%. In children who had both autism and intellectual delay. It was 14% in children who had autism without intellectual delay, and it’s about 10% and children who just had intellectual delay without autism. But this is in comparison to less than 4% of the neurotypical children population. So basically, what this means, in summary, is that 42% approximately of pica cases involved autism.
Matt: That’s kind of alarming when you figure I mean that that’s something just shy of half, there’s a strong possibility if your kid is diagnosed with autism that you are going to encounter pica, potentially at some point, we had two autistic girls, and both of them are putting inedible objects in their mouth.
Lia: So on more of the taste end of things, what was really interesting is there’s another study that was done that was looking into taste, reactivity and autism. And they basically found that taste is actually affected in the autistic brain. So how they experience taste has been found to be different than how neurotypical people experience taste. So specifically, this was in reference to things that tasted sweet, as well as things that were sour and bitter. What they found basically was that there was irregular function and functional connectivity of the brain and the parts that were related to taste. The interesting part about that is those parts of the brain were also associated with like social functions. So what it seems to be is that in the autistic brain, the parts of the brain that are associated with taste, because the social part of the brain is kind of lacking because Autistic individuals struggle with that social aspect, that part of the brain is kind of lacking. So it seems like the taste part of the brain took over a little bit of the social part of the brain.
Matt: So kind of the neuroplasticity.
Lia: Yeah, neuroplasticity thing. So it kind of in layman’s terms, it’s kind of like it took over a little bit and that because of that the taste buds and the taste sensations are a little bit like out of whack in comparison to the neurotypicals so I thought that was like pretty interesting, too.
Matt: Yeah, because I mean, that would explain why they might not want to eat some foods that we’re we’re putting in front of them and why they have to use the yucky bowl- no thank you bowl.
Lia: The no thank you bowl. But what’s kind of cool that the research also shows is that it seems like these things can potentially their theorizing may be able to be treatable with neurofeedback and neurostimulation. So brain stimulation, and usually called TMS therapy. These are things that I actually did as an EEG technician. So if you guys are interested, let me know via message or email us at podcast@autismwish.org. And let me know if you want me to talk about that, because I can talk about what that entails. Just basically briefly, they’re saying that because these things seem to be correlated to over-activity and under-activity in areas of the brain, they’re saying that theoretically, you might actually be able to treat some of these symptoms by doing some sort of neurological Neurofeedback type of therapy.
Matt: That would be interesting to find out results in the near future maybe.
Lia: Yeah, so I know that when I when I did work as an EEG technician, I did see a lot of results for other things like ADHD and things like that. So I would not be surprised that this was also something that can be treatable. I’m happy with my kids the way they are and if it’s something that they’re really struggling and it’s something they really need help with, I have no problem having them go through some sort of treatment to help them out if necessary, but if If it’s not harming them directly, and they’re not upset about it, I don’t have a problem not doing it either. It’s kind of like to each their own.
Lia: That’s basically all we have for you guys now for the taste episode, we basically will just keep rolling through all the senses. We’ve got a couple more to go and then we’ll switch over to behavioral stuff. But that’s it for taste. And I hope you guys learned a little bit.
Matt: Alright we’ll see you next time.
Lia: See you next time.
Outro:
Lia: In this episode, we discussed how addressing pica with a doctor is important to avoid possible medical complications. How substitutions have similarly textured edibles can replace harmful eating behaviors, and how the autistic brain may be wired to experience taste differently. Tune in next time as we focus on the sense of touch and answer questions such as, how can I dress head banging? Why is my kid toe-walking? Why does my kid always squeeze into tight spaces?
Lia: This is Embracing Autism!
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Resources:
Bendable spoons from Amazon (paid link)
PICA Prevalence in Autism
Association between pica and Autism in preschoolers with and without autism
Disclaimer: These notes include Paid Affiliate links. AutismWish would receive a small percentage of the purchase value if the above links are used.
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