When It's Not Just Picky Eating: ARFID w/ Autism Out Loud

Mercedes: 00:00:00

The best way that we've been able to support Camila is by adjusting our own expectations around eating. Like, you really have to shift things, because all the.

All the things we were doing when she was really little, you know, all that advice that you get as a parent, like, oh, well, just, like, if she doesn't eat that, then she doesn't eat. Or, like, she'll eat when she's hungry, or, like, make her eat her plate and, like, she has to finish.

All these things can cause so much trauma for somebody who actually has arfid.

Shawna: 00:00:27

Hey, everyone.

Brittany: 00:00:28

I'm Brittany, speech language pathologist.

Shawna: 00:00:30

And I'm Shawna, behaviour analysis.

Brittany: 00:00:32

And we're your hosts at Neurodiversally Speaking.

Shawna: 00:00:34

This is a podcast where we bridge the gap between research and practice, exploring autism and neurodiversity through the lens of speech and behavior.

Brittany: 00:00:41

Whether you're a parent or a professional, we'll give you practical tips to bring into your home or your next therapy session.

Shawna: 00:00:47

Let's get started.

Narrator: 00:00:48

Welcome to the Neurodiversally Speaking podcast with Brittany Clark and Shawna Fleming from lmno, brought to you by The Sensory Supply. While we aim to make Neurodiversally Speaking suitable for all audiences, mature subject matter.

Narrator: 00:01:03

Can sometimes be discussed, suitable only for those over the age of 18.

Narrator: 00:01:08

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Shawna: 00:01:36

Hi, everyone, and welcome back to Neurodiversely Speaking. I'm Shawna, behavior analyst.

Brittany: 00:01:40

Hey, I'm Brittany, speech pathologist.

Shawna: 00:01:43

In our last episode on Picky Eating, we talked about picky eating advice online, things like not making separate meals or they're going to eat when they're hungry. And we talked about how these strategies are not necessarily wrong, but they're missing the context or some of the nuances.

Brittany: 00:01:58

Mm.

Brittany: 00:01:58

We put out a call out to our listeners, and we heard from parents. And we also did sort of a deep dive on our own. Like, what is the Instagram advice out there?

Um, you know, when we heard about kids who only eat, like, a handful of foods, kids who need very specific brands or colors or textures or the way that the food is prepared, those are all really things we heard commonly. And parents worried about their child eating either too much or not enough.

And so families making three versions of the same meal, like lots of different stories out there.

And so we talked about that Instagram advice in our previous episode and today we're diving in a little bit more about that really highly restrictive eating.

Shawna: 00:02:34

Yeah. We even had like one family that was sharing that spaghetti is the only meal that their family almost all agrees on.

And so, and eating is such a big part of our life, right.

Brittany: 00:02:42

We've got to.

Shawna: 00:02:42

You have to eat at least three times a day, probably more.

And so in the spaghetti example, right, the family was saying, like, one child likes them with this specific sauce and meatballs, another one only likes the butter noodles. And then the adults want one that has like more vegetables and nutrients in it. And so like, there you've.

Within the spaghetti, you've still got three meals that you're making.

Brittany: 00:03:03

This is my house.

Shawna: 00:03:05

This is actually my house. No, it was not. But that's funny.

Brittany: 00:03:12

Yes, exactly.

My house, where like one of my kids only does the butter and one of them may have put the sauce on the side and then I have gluten free noodles and then.

Shawna: 00:03:20

Oh my gosh. Yeah, exactly. But like, what an impact, right?

It's like now when I'm cooking dinner, my brain is working on overdrive because I got to make sure that all these different conveniences, configurations, like mapped out.

Brittany: 00:03:29

Yes, exactly. So funny. Yes. But so I think common probably too, where families are experiencing for sure, something like that.

We also heard about children where even putting a new food near a safe food can feel really risky or tricky because instead of creating like that exposure, it might lead the child to stop eating altogether or like lose a food that used to be safe. So, you know, we want to be aware of that, that this is kind of goes beyond that. Picky eating.

Shawna: 00:03:54

Exactly, exactly.

Shawna: 00:03:55

It's such an important sort of distinction there. For some children, safe foods are not preference in the way that we might assume. And that's really what today's episode is about.

For some people, the foods are anxiety inducing or eating is anxiety inducing.

And so that's where we have this important distinction in the way that we respond sometimes needs to be different based on what the individual is experiencing.

Brittany: 00:04:20

Yeah, for sure. And then I will say we did also hear a couple of hopeful stories.

So children who were extremely restricted when they were younger, but slowly expand over time where, you know, there was a little bit of less pressure or opportunities for participate in food in ways that felt safe, like cooking or helping prepare the meal or you know, kind of getting creative around just exposure around food. And often that comes in shifting our own expectations as parents too, about how we're talking about food and handling eating.

Shawna: 00:04:49

Exactly. So last episode, we talked a lot about Instagram advice. Today we want to dive more into those severe, selective eating patterns.

Before, we talked about how the Internet advice is often evidence informed approaches, but it's missing sort of that greater context about which approach works and when and why. And then whereas with this topic, with more selective eating, those approaches change altogether.

Brittany: 00:05:13

Exactly. And today we want to talk about what happens when the contact is much more complex.

So when eating isn't just about preferences, it's not just a phase, and it's not something that improves with just like repeated exposure. And so all of those things would fit more into that picky eating. I'm putting air quotes here that often families like, so. So common.

I think probably within our friend groups, like, everyone talks about these kind of things. We both have experiences in our own homes where, you know, the phases kind of come and go. And so this episode is, like, beyond that.

We'll talk about how it's really different from picky eating and why advice like, oh, just like, keep exposing them or they'll eat when they're hungry may not work for some kids. And genuinely, you know, you cannot just rely on those things. And then pressure, adding on, pressure on top can, like, seem helpful in the moment.

It makes things much harder long term.

Shawna: 00:06:03

Exactly.

Shawna: 00:06:04

And that's what we hear at the clinic too, right? Is like, families being like, I don't know, I've tried all this advice.

Brittany: 00:06:08

Yeah.

Shawna: 00:06:08

And they're not eating when they're hungry. And so for today's episode, like, the goal is not to win the bite. It's more of, like, a bigger picture approach that we're talking about.

Shawna: 00:06:17

Yeah, exactly.

Brittany: 00:06:18

It's like, all about helping kids, like, feel safe enough and supported enough and skilled to build that flexible relationship with food over time, really.

Shawna: 00:06:26

And with that flexibility, we'll see that a picky eater that we might sort of expect, they might have broccoli at daycare, but not at home.

Brittany: 00:06:33

Right.

Shawna: 00:06:34

They might go through phases or that refusal is today, but then tomorrow everything's fine. And we talked a lot about that in the last episode.

And as a parent, what I'm always looking for is the patterns around eating versus responding to, like, a single in the moment thing. And so today we want to talk about when it's more than picky eating. When meals are, like, getting harder, food is getting more limited.

And there seems to be something like that's underlying it or, like, a little bit more challenging maybe than what you're hearing from your other, like, mom friends.

Brittany: 00:07:01

Yeah, exactly. And again, if you didn't hear that last episode, one other example was, like, chicken nuggets.

I think all of our kids and in our family friend circles, again, they love chicken nuggets, but they could eat the kind from McDonald's or from Harvey's or from the store, the Cane's ones that you buy the grocery store. Like, really, any chicken nugget would be fine.

Whereas here we're seeing, like, this extremely selective type of eating that's, like, the child might only eat this specific type of one brand prepared in the exact same way. So that's, again, sort of teasing it apart where you can move beyond that picky eating and into more, like, highly heavily restricted food intake.

And so the word we might hear here is arfid, which is avoidant restrictive Food Intake disorder, which refers to a severe restricted eating. Again, where that pattern is so much more rigid than just like, oh, I like beige foods, like, because so do I and so do you. You know, like.

Shawna: 00:07:53

And so, like, I like fries. You know, I love fries. Yeah.

Brittany: 00:07:56

Yeah.

Shawna: 00:07:57

But it's not all that I eat.

Brittany: 00:07:58

Yeah. And you can try, like, 18 different kinds of fries and probably enjoy them all. And so again, this is.

We're talking about arfid, which is that much more severe restrictive E. And then the child might experience distress along with eating. There may be sort of issues around nutrition and growth.

And then certainly we'll talk about, like, the social impact and the impact on the family that this has as well.

Shawna: 00:08:23

Exactly. And it is a formal diagnosis in the dsm, which is the manual that they'll use to classify mental health and developmental conditions.

It was added to better acture. Better capture these restrictive eating patterns that we're seeing that are beyond just picky eating.

Brittany: 00:08:39

Right.

Brittany: 00:08:39

And important to sort of say, too, that it's not driven by, like, weight loss or anything like that. Like, we're not talking about, like, someone who's talking about their body image. This is, like, severely restricted eating for another reason.

Different.

Shawna: 00:08:51

Yeah. Underlying causes, for sure.

Brittany: 00:08:53

Yeah. So, again, it's not just somebody who, like, dislikes vegetables or prefers, like, certain foods.

We're talking about these eating patterns that significantly affect nutrition and growth and health and, like, everything that also. Nutrition impact.

Shawna: 00:09:07

Exactly.

Shawna: 00:09:08

And so that distinction matters. Right. We're, like, moving beyond. Just keep offering it.

Maybe you've offered it 100 times and every time it's still like sort of the same big response to it or this.

Like, they'll eat when they're hungry and they're like, never coming back, you know, like, sometimes I will do that in my own house, you know, like, we had dinner if you're so hungry, like, that's what we still have.

Whereas in this case, and my kids will come back and eat up the food, you know, whereas in this case, like, that's actually going to be counterproductive because of the underlying anxiety, which is different from picky eating.

Brittany: 00:09:40

Right.

And so you can't sort of take that dismissive approach, like, oh, they'll come back when they want to, or a very pressured approach that's like, well, eat that, or I'm just like going to hold this spoon in front of your face until you eat.

Shawna: 00:09:50

Exactly, yeah. And so it could look like refusing or controlling or winning, but that's really not what ARFID is looking at. Right.

It's that underlying psychological component to eating. And so we really want to build that safety, nutrition, trust and flexibility around our approach. And that's what we'll chat about today.

Brittany: 00:10:09

So, looking a little bit more into our fit and sort of the like reasons why or how it develops, there's a lot of different things that it can be driven by. One of them is that sensory sensitivity. So with food, of course, you get a lot of different textures, different smells, tastes, temperature.

Like, again, I was saying about the brand, the color.

Sorry, my brain is thinking about the texture and I know this about Shauna, that you don't love, like chocolate with texture in it, whereas I do and so never eat that.

Shawna: 00:10:38

I. I would actually say some of characteristics of arfid. I probably have not to meet a formal DSM diagnosis, but I certainly have, like, a lot of preferences and thoughts around it.

And I feel like that's where my bias for sure comes in, where I'm really empathetic to arfid like cases because I appreciate it. Like, if someone put tuna in front of my face, you could for a billion dollars, I would not eat it.

Brittany: 00:11:01

Yes, exactly. And never to like, not sort of poking fun at you.

I just thinking like, I went to buy chocolate the other day when we were hanging out and I was like, I will not buy the one with fruit and nuts. I personally love that, but I know that you would hate. So like, just as an example that there's so many different elements to. And textures to food.

And so like, even fries, like some of the, you know, some people like the crunchy ones, some people like the soft ones. Like there's so much variability.

And so sometimes too, like vegetables can be cooked so many hundreds of different ways and the taste changes every single time. Or like blueberries, you know, if you get them from Ontario or if you get them from like a different country, like they can taste different.

And so with food there's just so much variability. And so I want to kind of start there. That that sensitive sensory sens. Sensitivity can be such a huge part for sure.

Shawna: 00:11:47

And I do think is often underlying a lot of ARFID cases where there's co occurrence with autism because we know there's that sensory processing difference. Generally there is also we'll see it sometimes after an aversive event.

So if they did have a big choking or vomiting event, and again with my typically developing children, I would expect them to also have some sort of traumatic response after this. Yeah, but with arfid you'll see that it lasts way longer.

And then we also might just see that they have different differences in their interest in eating, knowing that again, that proprioceptive input is different for neurodivergent individuals. They might not realize they're hungry or they might have low appetite needs or low interest in food. In food.

Of course, we also know routines and rituals are big for neurodivergent individuals. And so some of those things might have become part of the eating routine unintentionally or through something.

And so looking at that, another thing is of course the medical or GI discomfort. We don't understand a lot about the gut and how its impact with autism is.

But there is some interesting research about the gut and autism and that there might be some differences there. And so again, if every time you're eating you're getting in pain, then that would impact your ability or your wanting to continue to eat.

Brittany: 00:13:10

I think about this all the time. One of my daughters really struggles with belly pain and I think she just like a sensitive interoception kind of kid.

And so we're medically following up on it. But I keep, I think about it often because she tells me my tummy really hurts.

And so we're always trying to figure out, like, what is it, what's the sort of the cause. But I think about some of our kids that we work with who couldn't share that information.

It would be impossible potentially for them to say, like, oh, my tummy's really sore if they're not speaking or if they don't have a way to communicate.

Shawna: 00:13:37

And I would say this stomachache Though also is not going to be while you're eating, it's gonna be hours later.

Brittany: 00:13:41

Right.

Shawna: 00:13:41

And so it's very hard to tie those two together. And that's where again the research we could do a whole episode on the research on GI and autism is challenging.

Obviously there's so much difference in everyone's gut stuff and then there's so many factors that contribute to it and then the delayed onset of symptoms and becomes really tricky.

Brittany: 00:14:00

Yes, exactly.

Shawna: 00:14:01

And then I think the final piece is the those feeding challenges. And that's something we are not recently, a few years ago did inter professionals feeding cores called bites.

And that was a really cool part that I learned about was some of the things that you guys look at in speech pathology.

Brittany: 00:14:16

Yeah, I was thinking about, we have a client with a really hyperactive gag reflex.

And so I would imagine feeding would be hard or some texture would be hard for him because like even I get him to open his mouth and he's sometimes like doing a bit of a gag.

Shawna: 00:14:28

Right.

Brittany: 00:14:28

And so I'm thinking about all of those things like chewing and swallowing or drooling and pocketing, like those really impact the whole feeding experience too.

Shawna: 00:14:36

Right.

And so if I had to say have a puree versus a sandwich, in this case, this guy, the puree, I don't have to open up my mouth that much and just a spoon. But if every time I open my mouth to take a bite of a sandwich, I'm gagging, I'm not going to know.

Or like even me as an adult probably wouldn't make that connection because I don't know anything about your gag reflex. Right. And so anyways, I think that those are like really that, that is very interesting and I think often overlooked.

I think a lot of the time we see selective eating as a behavior that is problematic and forget to look at the medical end of things and how some of that medical perspective could be impacting their eating for sure. And so all of these factors are why we can't just come in and say it's behavior like they are doing this to be manipulative or whatever.

Brittany: 00:15:18

Right.

Shawna: 00:15:19

What looks like refusal could actually be fear. What looks like control might actually be self protection. And so we really want to dive into the why behind it.

And that's where I'm really excited that today we had the opportunity to talk with Mercedes and so she gives us that real life parent insight.

Brittany: 00:15:35

Okay, so without further ado, here's our conversation with Mercedes and then we'll jump back into the chat a little bit Further about ARFID from the clinical side, we're so grateful to be joined by Mercedes Palermo from Autism Out Loud.

Mercedes is a parent and advocate and someone who shares so thoughtfully about autism, her family life, and the real experiences that often sit behind this clinical language that we use here on the podcast. In this episode, we wanted to start with lived experience before we move into the research and clinical side of arfid.

And ARFID is avoidant Restricted food intake disorder. So today we're talking about highly selective eating, very different from just sort of typical eating.

So today is more that ARFID and highly selective eating.

And Mercedes is here to share some of her experience supporting her daughter Camila, to help us better understand what this can look like and feel like from a parent perspective. So thank you so much for joining us, getting us.

Mercedes: 00:16:28

Well, thank you so much for having me.

Shawna: 00:16:30

I'm excited to get started. Tell us a little bit about Camila and what eating her food has looked like for you guys.

Mercedes: 00:16:36

Yeah. So Camilla, she's seven. She just turned seven in May, and she was diagnosed autistic when she was three.

And then she got her ARFID diagnosis officially probably like a year or so after that, maybe a year and a bit. But she has had eating challenges since, honestly, since we transitioned her to solid.

So it has always been a thing with us and probably one of the biggest challenges that we honestly have ever had to navigate as like, a family, because obviously eating is. It's like, intertwined into everything culturally, like the family dynamics and everything. So, yeah, she's super, super restricted.

But we do have ARFID diagnosis, which has shifted how we have our expectations and things like that. So we're grateful for that diagnosis.

Shawna: 00:17:25

It's so interesting to me that you mentioned that it was sort of from the beginning. Right. So at like, six months, you started introducing solids.

And I don't know, like, looking back on my own experience with my children, I'm wondering what to you, like, what did you see at six months and what did that look like?

Mercedes: 00:17:41

Yeah, so she was. It was tough for her, right. Right off the hop. So she pretty much would just refuse, really. She's, like, refusing food.

It was always very, very stressful. So, like when, you know, when dinner time, lunch or anything like that, we all had this, like, overwhelming, anxious feeling.

It was like, you know, like, just so overwhelming because you knew that it wasn't going to go well. She would not want to explore new foods.

She always stuck to, like, the same things that she would prefer and, like, eat everything Else it was like she would just spit it out. Like we couldn't get her to actually physically consume the food. So right away we were having those challenges.

Shawna: 00:18:26

And did you notice that she was say crying a lot at meal times? Is that sort of what it looked like? Like maybe more than crying and sort of pushing? Yeah, that is so interesting.

Mercedes: 00:18:36

We would see crying.

We would see like eventually as she got a little bit older, like probably around the one year mark, we would see like a lot of meltdowns too and like a lot of anxiety on her and too when it came to eating. So we, we, we got those like hints and flags that it was beyond like normal toddler, you know, pickiness pretty early on with her.

Brittany: 00:18:56

Right.

Shawna: 00:18:57

And what were some of her favorite foods as a baby?

Mercedes: 00:18:59

Baby, yeah. So she, well you know what, when she was little she probably ate like a few more foods than she eats now.

She unfortunately has like stopped eating some of those foods. But when she was a baby she would eat egg noodles a lot.

Like when she was really young egg noodles was her go to thing which was fantastic because of the protein in it. But unfortunately she's, yeah, she's let that go.

She hasn't eaten any noodles for a really long time, which would have been great because it's such a dense meal. Right. But so yeah, she, it was always. And that has kind of stuck with her.

So like her go to texture is purees which is good because we can get lots of supplements into her that way by mixing things. But yeah, it was always purees. So like pear puree that has been her go to even to this day. She has pear puree every day.

And anything that could really like melt in her mouth so that she doesn't have to do a lot of chewing.

Brittany: 00:19:56

Right.

Mercedes: 00:19:56

And yeah, that smooth consistency.

Brittany: 00:20:00

I wondered about the textures and if that was something right from the beginning. So thanks for answering that. And those like little mum mums and puffs and stuff.

Like does she, did she enjoy those as a baby and does she still eat those now or.

Mercedes: 00:20:10

No, she doesn't eat those anymore. She would have some of them. I do recall her like eating some of those things because they melt so easily. Right.

So I remember like even when she was like a little bit older I would be like giving her those because I was like, well it's like melting her mouth and she eats it. She needs calories in any form, even if it's so light. So yeah, she did eat those. She doesn't eat them anymore.

Brittany: 00:20:30

Right.

Shawna: 00:20:31

And then early on were you Seeing any professionals for her eating? Or was it sort of once the autism diagnosis came that you're like, oh, this is sort of connecting me now to this.

I'd never heard of ARFID before until I heard of autism. Like, which came first?

Mercedes: 00:20:46

Oh, well, it's interesting because we went to her family doctor when she was one because of the eating challenges. So eating challenges were our first thing that made us go, go seek like professional assistance.

So, yeah, we went to the family doctor because we're like, this is like really, really, like beyond what, you know, someone can expect with difficulties with eating for a toddler. And then they sent us to a community pediatrician who essentially just said, she's just so young, it's just picky eating. We were brushed off.

Our concerns were brushed off. And then a year later, when she was two years old, I went back to my family doctor, was like, listen, we're still where we were a year ago.

They sent us to another pediatrician who also said the same thing. Like, they just chalked it up to picky eating. And it was very.

It's very like disappointing when I think back to that, because I think that had our concerns around her eating been taken seriously by the pediatrician and he actually did like a full assessment, she probably would have been diagnosed as autistic, like, way earlier than what she was. Right. Because there were other signs there too. But the eating was a really good hit hint for us that unfortunately just wasn't taken seriously. Wow.

Brittany: 00:21:56

And she's your first child too, right? So you're going through feeding as a first time mom.

Like, I remember being quite anxious too, like about the portion size and what to do and getting all the things right. And then to have your stories kind of dismissed twice and experiencing those like, challenges over years, that's so frustrating. My goodness.

Good thing you're such a good thing.

You as a person are so resilient and like an incredible, incredible advocate for Camila because you didn't give up, you know, and just sort of think like, okay, well, I guess we'll just wait this out. So she's obviously so lucky to have you.

Shawna: 00:22:27

I was thinking like, your medical background here has to like play a factor and sort of. And like, probably thankful that you had all this information too.

And so how do you think that your background as a nurse sort of helps you navigate or helped you sort of navigate some of these steps?

Mercedes: 00:22:43

Yeah, I think as a, as a nurse, because also I worked in a program that's called Healthy Babies, Healthy Children. Oh my gosh where, like, I was, I was supporting like new moms and, you know, and feeding is a huge topic when, you know, as, as part of that role.

Wow. So it really did, like, give me that perspective that things were beyond.

Shawna: 00:23:04

Right.

Mercedes: 00:23:05

The typical challenges that moms experience with their babies or dads.

So I think having that knowledge is what really got me to push and push and push and like, advocate for support when it came to eating and everything else. Really?

Shawna: 00:23:19

Wow. Oh, my gosh. Yeah. Thank goodness. I can't. Like, that would have been so helpful because you see kids, right.

And I think as a first time parent, you don't know what's like in quotation marks. Normal or not normal, you know?

Mercedes: 00:23:29

Yeah, no, it's so hard.

And honestly, and I say this all the time, like being a nurse and how little I knew about autism when she was diagnosed is why I created my platform, because I was like, shocked at how little I knew. Right. So there, like, even as a healthcare professional, there's still so much to learn. But at least that little knowledge did help, of course.

Shawna: 00:23:49

All right, how many foods does she have currently that she likes?

Mercedes: 00:23:52

Oh, she doesn't have a whole lot. She's always kind of floating around. I would say, like the six or seven mark. She kind of goes through phases with a couple of different foods.

Like tomato sauce, for instance. Like, she'll go in and out of that. But yeah, so it's always around, I would say the 6 or 7 mark of how many foods she eats. She's quite limited.

There's other kids with ARFID who eat way more than her and some don't, some are tube fed and there's. It's such a spectrum, like autism Christmas, really. Yeah.

Shawna: 00:24:24

And then what are the strategies that you find work the best? So if you're saying, like, sometimes tomato sauce is okay, sometimes it's not okay. How do you navigate that as a mom if you've. I don't.

Do, you know ahead of time or do you make dinner and then you put it down and she's like, nope, today's not the day for tomato sauce.

Mercedes: 00:24:37

Yeah, it's hard.

I, I find that the best thing that, like, the best way that we've been able to support Camila is by like adjusting our own expectations around eating.

Like, it has really, like, you really have to shift things because all the, all the things we were doing when she really little, like, you know, although that advice that you get as a parent, like, oh, well, just like, if she doesn't eat that, then she doesn't eat, or, like, she'll eat when she's hungry, or, like, make her eat her plate and, like, she has to finish. All these things can cause so much trauma for somebody who actually has Arfid. So adjusting our own expectations has been, like, the.

The biggest help when it comes to her comfort and safety around food.

Shawna: 00:25:20

Yeah, that makes sense. In our previous episode, we talk a lot about that Instagram advice and sort of some of the.

Well, well, while it is well intended and might be good for some kids, it's certainly not something that works in every situation. And then in with arfid, of course, it's like some of that anxiety around eating.

And so one of the things I was thinking is like, oh, sometimes we'll say, like, put a small amount of tomato sauce on the plate or something, you know, and that way. But I got to imagine in Camila's case, that could lead to, like, not eating dinner at all.

Mercedes: 00:25:50

Yeah, no, exactly. We. We kind of. We follow her lead a lot. And sometimes she will even just ask for tomato sauce, especially when we're at her nonna's house.

Like, she has her places where she wants to eat certain foods, too.

Shawna: 00:26:02

Interesting.

Mercedes: 00:26:03

So then when, like, we listen to her all the time, like, if she says, oh, I want tomato sauce and. But like, really her time for her eating her.

Her dinner, which is like a puree concoction that I make, is coming up, I'll be like, okay, we just need to give her her tomato sauce because then it, like, gives her a different taste too, on her palate. Yeah. If we want to keep rotating different flavors and stuff.

So, yeah, we listen to her a lot, we follow her lead a lot and, you know, give her as much autonom possible.

Shawna: 00:26:27

Wow.

Brittany: 00:26:28

And then you were talking about Anona, like, grandparents. I was thinking, like, every time you sort of go have dinner with friends or grandparents or go to a restaurant or any.

A birthday party, you must have to have these conversations. Right. So that other people aren't sort of giving her advice. Like, how do you navigate that?

Mercedes: 00:26:44

Oh, yeah. Yes. And Nona is for Italian for those listening. Right. So. And you can imagine how cultural food is in Italian families and so many.

So many cultures across the world. Food is too, so cultural. So one. One thing that we've done, actually, we. With the.

The child psychologist who kind of oversees Camila's arvid, we've actually set up like, a family educational session. So, like, like, my in laws came, my brother in law came, and like, I can educate on and on and on.

But sometimes coming from somebody else, it hits differently.

So we've even done that before too because they're like literally from Italy where, you know, know they were like in like the agriculturalists and things like that. So like getting that information just so that they can be aware too of how they, you know, re interact with Camila when it comes to food.

It's made a big difference.

Shawna: 00:27:35

Amazing. And then what about with the school? Obviously they maybe don't have time for like a education session, but I gotta imagine lunch time is hard.

And so what are some of the things you guys have in place?

Mercedes: 00:27:46

Yeah, so with our fit in school is a huge thing too because obviously it can impact some a child wanting to go to school if they are feeling pressure around eating or accommodations aren't in place. So it could impact them going to school in general and cause like school refusal and all that stuff. So yeah, we've.

Our school is luckily like a fantastic school who is like super open to learning about our fit.

I sent in like a big arfid template that's like super easy to read and like things that really help Camila, things that don't help Camilla when it comes to eating and gave it to like her EAS and all the staff and everything. And yeah, so she pretty much, much eats just one thing at school.

Like she eats her granola bars and she'll have like five granola bars throughout the day. And most of the work that we've done in like advocating for her has been around like not pressuring her to eat.

So like, you know, don't say, oh, come on, finished, or else you can't go outside. Things like that where you don't even realize what you're saying and how that can impact somebody with arpid.

So it's lots of things like that that we've had to work on with the school, but been good.

Shawna: 00:28:48

That's awesome.

Mercedes: 00:28:49

Yeah.

Shawna: 00:28:50

And so you're packing essentially like foods that you know that she likes that are safe foods, and then educating or letting the school staff know, like, these are the strategies at work. What about on like special days?

I'm thinking like, especially at the end of school, like my son just had like bread making day and so like something like that. Would she want to be involved in something like that or no?

And like, do you have to let the school know, like, hey, it's okay for her to be involved in baking. She might not eat any, but she likes it.

Mercedes: 00:29:14

Yeah. Yeah. Oh, yeah. So like one thing, one really good strength about Camille, like, although she's super limited in her diet.

She has such a good relationship with food in other ways. Like she loves to bake, loves to cook, she loves to touch food, smell food, lick food. So she's very comfortable with food.

So we always encourage her to take part in all those things. Even like pita pit days. Like I also order her a pita pit just so that she has one and she doesn't feel left out. So things like that too.

So yeah, we always encourage all those special days and, and the school knows that if she says no and doesn't want it, then, then that's fine.

Shawna: 00:29:49

Gotcha.

Brittany: 00:29:50

Love that. And then you've probably been active, both of you as parents, then thinking about like, how can I get her involved in different ways around food?

Like you said, she's got this positive relationship and I'm sure that's because of you, right? Like really curating that.

Mercedes: 00:30:01

Yeah.

Brittany: 00:30:02

Wow.

Mercedes: 00:30:03

Yeah, it's like that's one of the, it's like honestly therapeutic because food play in general is, can be part of therapy when it comes to, you know, kids with Arfid. So like we started off playing with like just those plastic, plastic foods that you cut with like a plastic knife and stuff like that.

We started there and now she's like full blown in our garden, like taking off the tomatoes, washing tomatoes, like all these things. So she's. Yeah, she's been pretty cool. Wow.

Brittany: 00:30:30

And then because your daughter is quite verbal too, like what is she, how does she describe her experience here with food? Like she's washing the tomato and she's like interacting with food so much.

You mentioned before, she does say like, oh, I don't want the tomato sauce today or maybe I do. What other kinds of things is she telling you about her experience?

Mercedes: 00:30:47

Yeah, it's interesting with her. So she pretty much just will like refuse.

Like she doesn't say exactly what it is, but we'll be like, oh, Camilla, just why don't you just take a bite of that? Like she'll be like playing with food and I'll be like, oh, you should try, like take a little bite. And then she'll just be like, no, no, no.

And you can see like her anxiety kind of heightened.

Brittany: 00:31:03

Okay.

Mercedes: 00:31:04

She doesn't really explain why or anything like that.

We know it's sensory and anxiety related for Camila, but she hasn't really been able to give us like the big detail about how it makes her feel and things like that. But we are super hopeful that one day she will be able to explain more and Just with her own knowledge as she gets older. Right.

That knowing food, like, you need food for survival and things like that. So I'm hoping that, you know, as she gets older, her relationship with food will even enhance more and Totally fair.

Brittany: 00:31:32

So right now it's just a refusal. And you're acknowledging that?

Mercedes: 00:31:34

Yeah, yeah.

Brittany: 00:31:35

Following her lead.

Mercedes: 00:31:36

Yeah, yeah, yeah.

Shawna: 00:31:38

And then what's the impact on your family? I assume you're making something separate for her. And then I know you've got another kid, and then, of course, you got to eat, too.

And so what does sort of meal times look like for you guys?

Mercedes: 00:31:50

It's crazy, honestly. Like, Camila is super, like, regimented. So, like, we have, like, something that she has to have for dinner every time.

It's like that puree concoction I make because it has, like, lots of her supplements in it. But because our routine is so unique, I would say with Camilla, it's actually impacted our son quite a bit.

And we are seeing him, like, he is quite picky, like, what you would call picky. And, like, he'll even, like, lick food and then he'll be like, well, Camille is licking it. Like, I don't want to eat it. And I'm like, no.

So, like, we do see some copying, unfortunately, with him. And, like, our routine isn't what it would be typically, if Camilla didn't have Arfid.

Like, usually we'd be sitting down all at the dinner table, but sometimes Camilla eats in the living room and things like that. So it has impacted him.

Shawna: 00:32:38

Yeah.

Mercedes: 00:32:39

And it's. And it's impacted, like, us in general when we go places, when we travel, we have to bring a cooler of food with us. Like, it.

We're always thinking five steps ahead when it comes to her outfit. Everywhere we go.

Shawna: 00:32:53

Right. Yeah. And I think one thing I saw you post about is going out to restaurants. And potentially I think one of her foods is maybe ketchup. Is that right?

Brittany: 00:33:02

Yeah.

Shawna: 00:33:02

Yes. And so she loves ketchup.

And so when you're out at a restaurant, you're not thinking, like, oh, we're going to order her, like, a burger and fries or something. Like, you know what, if you eat ketchup and. But we get to go out for dinner as a family, then that's like, a big win for me.

Mercedes: 00:33:15

Oh, yeah, absolutely. Like, honestly, even her being comfortable in a restaurant is a huge win because it's a different place in general. But also, like, the smells. Right.

The smells can impact her a lot too, sensory wise. So whenever she's in A restaurant, and she's happy and content. Like, that's a huge win.

And then we've always had awesome waitresses and waiters who are. I'm like, she just wants ketchup. And they'll be like, okay, no problem. So, like, yeah, that. That helps too. Right?

Shawna: 00:33:43

Right.

Mercedes: 00:33:43

Yeah.

Shawna: 00:33:44

And I think that flexibility for you. Right, is like, you're saying, I'm planning ahead, and then I'm changing sort of my expectations of what success looks like here. What's awesome.

Right. Like, the goal of going out to a restaurant is us to have family time together.

Mercedes: 00:33:55

Right.

Shawna: 00:33:55

And maybe, I don't know, me, you and your husband have a conversation or something. Right. You're like, whatever that looks like is. Or however we get to that successful point is really what matters here.

And also, I think appreciating the barriers for Camilla are, like, not necessarily the same as, like, my, like, my children going to a restaurant. Like, they don't maybe just, like, they don't want to sit still or something like that.

Mercedes: 00:34:17

Yeah.

Shawna: 00:34:17

Whereas here there's other sensory experiences that she's going through that then make it harder to come and sit in a restaurant and, like, be, like, regulated, you know, because of the smells are so much.

Mercedes: 00:34:29

Yeah, yeah. Smells. It could be lights or sound. If the restaurant's too chaotic, it's.

And the thing about Camille is, like, she loves new experiences, but sometimes, obviously, those. That sensory input can just be too much. So when. When we do have a great experience, it's like such a win as a family, for sure.

Shawna: 00:34:47

And then do you find at home, if, let's say you have, like, I don't know what, like, ideal conditions are, you know, like, it's a low stress day.

Mercedes: 00:34:55

We've.

Shawna: 00:34:55

I don't know, whatever, you know, for that, she prefers around eating. Do you find that. That then she's more open to trying things or. It's not like that at all. It's not that easy.

Mercedes: 00:35:02

Yeah, no, she is. She does.

Like, we have been seeing her in the past year, I want to say, like, really increase her comfort with, like, licking food and things like that. And we only really see her licking and trying new flavors when she is super regulated.

When, like, there's zero pressure and, like, she's had a good day. Like, if. If we're seeing her emotions are off and things like that, we definitely don't. We don't see that, like, her wanting to try things. Right.

Because she's probably just so turned off at the whole idea.

Shawna: 00:35:35

Exactly. Yeah. It makes perfect sense.

Mercedes: 00:35:37

Yeah.

Brittany: 00:35:37

Yeah. So we talked about family and I know you, you and your husband and sound like you're on the same page.

And then I think you've talked about like your brother in law who like travels with you guys and you've got your Nona. So there's some really supportive people, including the school and you in your life.

Did you find like along the way there you're getting, getting advice from people that's like not super helpful or people who just don't understand or judgment even?

Mercedes: 00:35:59

Yeah, yeah, judgment. Judgment is a huge thing that I've noticed. Like, I always say that one of the biggest topics that I get judgment about is eating.

Like, people really think it's wild that I give Camila chocolate. Or you know, you'll get people saying like this is all because of you. Like, oh my gosh, being like strict enough, you know, putting her enough.

A lot of people who think our fit is not real because it's just a parenting issue.

So there's lots of things like that that you come across and you see or like even just like going out and like if I pull out an arrow chocolate bar, for instance, if we're at a restaurant or something or wherever we might be at the mall, sometimes you'll get looks and things like that or when she's licking her ketchup. So sometimes there's judgment. I've definitely, I definitely think eating is one of the. A hot topic when it comes to judgment. Parents, all parents.

Like, not even for a child with arfid. I think in general, all.

Brittany: 00:36:57

Wow.

Mercedes: 00:36:58

Yeah, wow.

Shawna: 00:36:58

I agree. And that's what sort of inspired this episode is. They do and they. I have typically developing children and I find eating so challenging sometimes.

You know, I'm like, what do I do here? How should I respond to this? And certainly the research and clinically we've changed our views a lot. What are you guys doing currently?

You mentioned that you're working with a psychologist and then is there an occupational therapist or like anyone else sort of on your eating journey?

Mercedes: 00:37:23

Yeah, we've seen an occupational therapist before when she was super little and having some of those challenges. But that's where we kind of were introduced to like food play and things like that. We didn't see her for too, too long.

Now it's primarily the child psychologist who kind of like just oversees everything. If I have questions and things like that, I can go to her. And a dietitian. Oh yeah, yeah, dietitian.

For like supplement purposes or like trying to come up with new ideas. Like for instance, she Eats like, like a chocolate sponge cake.

So like the, we, the dietitian and I will like consult on like how we can get like veggies in it or like, you know, do.

Do certain things to like get more calories and it make it more like dense when it comes to calories or like protein, like use a specific type of milk and things like that. All these types of things. Yeah.

Brittany: 00:38:09

So smart. And what a nice resource to have then for you. And you're the type of parent that's going to try everything. You're going to follow your child's lead.

But then you're also obviously being very conscious about. Okay, the nutrition that I do give her. I want to make sure I'm like doing the best that I can.

Mercedes: 00:38:22

Yeah.

Brittany: 00:38:22

Which is a lot of work.

Mercedes: 00:38:23

Absolutely. Yeah. Yeah, it's a lot of work.

And she gets like her blood work done regularly to see where her labs are at so that we can base her supplements off of that. So. Yeah, it is. There's a big medical component to it. Right.

Shawna: 00:38:35

And I was just thinking probably also like a lot of failed attempts. Right. Where you've remade this cake. I've got to imagine in the. Then she's like, oh my gosh, not the same cake I had.

Mercedes: 00:38:45

Yes. For years she only ate the chocolate sponge cake that her Nona made.

Like she wouldn't, I would make it at home and I don't know what I was doing wrong but she wouldn't eat it. Like, she would not eat it. So like thank God for my mother in law being like an angel. She is. She was like making weekly chocolate cakes.

But now finally Camila like accepts mine, which is like nice, good for you. But yeah, it's crazy.

Brittany: 00:39:08

Yeah.

Shawna: 00:39:09

Yeah. And like as a mom, you know.

Brittany: 00:39:10

Yeah.

Shawna: 00:39:10

You'd only got so much time, then you spend all this time baking a cake and then she doesn't want to eat it and you're like, oh man. Well, we don't really want to eat it either.

Mercedes: 00:39:17

Yeah, yeah, yeah. Oh yeah. There's lots of, lots of trial and.

Shawna: 00:39:20

Error with those chocolate cakes.

Brittany: 00:39:21

Yes.

Shawna: 00:39:24

What's something that you think if there's like a parent that thinks, I don't know, is my child like a picky eater? Should I get more support? Like what are some of those things that you might say to a parent?

Mercedes: 00:39:33

Yeah, I always say, like to really like hone in on your own expectations first around eating. Like we naturally.

Really like I was saying that judgment from other people is a big thing, but honestly our own, our own expectations Are also can also be playing a big role in the relationship that our children develop with food because we do what we pressure our kids with lots of areas. And, like, this whole experience has taught me, like, wow, like, my expectations were really intense for her.

And like, you know, so I always say, like, kind of like, reflect on your own expectations and like, take, take, take eating challenges seriously, of course.

But don't let those expectations cause unnecessary pressure for your child, because the best thing that your child can do is, like, develop a healthy and happy relationship with food. And that's not going to come from an anxious atmosphere.

So, yeah, I always say take them seriously, but also reflect on your own internal expectations with food too, for sure.

Shawna: 00:40:35

And that's great advice. And certainly what we see too clinically. Right. Is sometimes that pressure.

And I tell a horror story on the old episode, on a previous episode where when I was training, really, the training was to hold the food in front of their face and wait for them to bite it. It was awesome. It was terrible to implement, but that's what the research said.

And then, like, my supervisor, of course, would say, like, well, if they don't start eating, they're gonna, like, be malnourished. They're gonna end up in the hospital.

So, like, as a clinician, you're like, okay, I guess that's just what we're supposed to do, do, but thank goodness we have news. That was like, 10 years ago. And so we have, like, lots of new stuff out. And really, that is what the new research is saying, right?

Is like addressing sort of the anxiety around the food and diving into the why behind the behavior instead of just being like, you gotta eat.

Brittany: 00:41:20

Yeah, right.

Mercedes: 00:41:21

Oh, exactly. There's so many things shifting. Like, I work as a public health nurse, and even in my job, I work in elementary school. So, like.

Brittany: 00:41:28

Right.

Mercedes: 00:41:28

I'm seeing even like, like the concept of food neutrality coming into to elementary schools. And I'm like, yes. Like, this means, like, you know, like, don't shame children because of, like, something that they're eating.

Or, like, don't call food junk food. Like, just be neutral about foods instead of, you know, that shame piece. And I just think, yeah, we're. We're getting there. So it's. It's good.

Shawna: 00:41:52

It is, yeah.

Brittany: 00:41:53

She's lucky to have you as a mom who's so, like I said, like, such an incredible advocate, you know, able to like, hear other people's feedback and.

Shawna: 00:42:00

Then just say, well, this is what.

Brittany: 00:42:01

Works for us and our family and being really strong within your own values. And then also the incredible kind of experience that you had from your work.

Like what a unique experience that you are a public health nurse in a public school and your child, you know, and. Yeah. Is because they're going through something.

So I think your voice is so important and you speak out loud like autism and you know, and I think it's so important. And so we so respect everything that you do. And thank you for sharing your story with us, but also with the audience at large.

I think this is what parents need to hear and parents, professionals need to hear it too, for sure.

Shawna: 00:42:33

Thank you so much, Mercedes.

Mercedes: 00:42:35

Oh, thank you both so much. You guys always make me tear up a little bit. Thank you.

Shawna: 00:42:40

Thank you. Is there anything else that you wanted.

Brittany: 00:42:42

To add before we close this part of our discussion today?

Mercedes: 00:42:46

No, no. I'm just so grateful for the opportunity and grateful to always talk about ARFID when I can. Yeah. Thank you.

Brittany: 00:42:51

Wonderful. So if you don't already, I highly recommend following Mercedes Autism out Loud on Instagram and Facebook.

You're all always sharing stories so thoughtfully too.

I think you do such a nice job at sharing the side of your daughter that's you're not going crossing a line, you know, you're not crossing a boundary. You're sharing it like from a really, really respectful way. And I just love that, the way that you advocate for, for her and for your whole family.

Mercedes: 00:43:16

Oh, thank you so much. I appreciate that.

Brittany: 00:43:18

All right, well, we will talk again, I hope, as always, love to have you back on the podcast. So thanks, Mercedes, and have a good rest of the day.

Mercedes: 00:43:25

You too. Thank you. Thank you.

Brittany: 00:43:26

Okay, bye for now.

Shawna: 00:43:28

That was so awesome to get that real life parent perspective on our fed and what it like, the real impact on their family and sort of some of the things that they found that work, who's involved in their care team currently and how they're navigating that. And now let's dive in more clinically on our perspectives and I think the first part that we often look at from feeding, certainly.

So as a behavior analyst, one of my, like, ethos is to rule out any medical concerns before coming up with any sort of behavior, type of approach. And so in this case, we would refer, I would typically refer to you first, right.

To come and do this oral mech exam, which is jargon to me and I'm sure to our listeners, but I'd have you come in and do an assessment to sort of make sure, like, are things moving properly?

Brittany: 00:44:11

Exactly. We want to stop and like, slow down and think about is feeding and swallowing, like, physically safe, efficient, and manageable for the child.

So speech pathologists, some. Many people.

I've talked about this on the podcast before, but many, many people think of us as just like fixing a lisp or like helping someone who stutters or something like that. But it is part of our scope of competency to our scope of practice, I should say. Not everyone's scope of competency. That's a different discussion.

We are all trained in our master's programs to look at swallowing and feeding.

So things that a speech pathologist might consider around feeding is starting with that oral mech exam like you just talked about, or an oral motor exam. So I'm looking at, like, what do the structures look like? Like, can the child or person, like, move their tongue, their lips, their jaw?

Is there any weakness or paralysis? Is there any. Anything preventing their palate, like their soft palate from moving? Or. Lots of different things here.

I don't want to oversimplify it, but also don't want to talk at large, but there's so many different pieces around the coordination and symmetry and strength that we're looking at, just, like through the structures of the mouth for swallowing. And then, then we're looking at, like, a lot of different chewing skills.

So, like, can they make a ball of food and, like, move it around in the mouth? Is it, like getting pocketed in the sides beside your teeth? Are they drooling? Because what might be happening there?

And then there's, like, lots of things that we're looking at, too. We're on swallowing safety.

And so if someone is, like, coughing after they eat or, like, their vocalization sounds wet and, like, gurgly, those are, like, really not good signs that something is going on. And you would want to refer and get that medically evaluated, like, that wet vocal quality after eating.

So, again, like, I won't go into great detail about these things, but there's so many elements of swallowing safety that a speech pathologist can evaluate if it's in their scope of competency. So if they're competent in doing that.

And so, you know, we want to look at all of that stuff to say, like, is the child avoiding foods because it's generally hard or unsafe for them? Like, are they silently aspirating food? Are they choking and we don't realize it, or is gagging coming up and it's, like, genuinely uncomfortable.

Shawna: 00:46:23

And let's say I can't find a speech pathologist that does this. Is there other professionals that also provide these types of like, could I go see, like, an ear, nose and throat doctor?

Brittany: 00:46:33

Good question.

Shawna: 00:46:33

Or just my GP maybe, and they could help me.

Brittany: 00:46:36

Yeah, yeah. Like Mercedes talked about, too. She went to her family doctor who sent her to a pediatrician. And then an ear, nose and throat.

Like, if a speech pathologist has concerns about, like, is there a palate opening or it shouldn't be, or like, something structural, then they will likely refer to an ear, nose, and throat.

I know some occupational therapists are sort of getting into feeding a little bit more, and that certainly is part of their scope and training to do some aspects of feeding. Speech pathologists are the ones that are trained really in, like, the. The swallowing.

Shawna: 00:47:07

The medical side of it. I don't know if that's the right terminology.

Brittany: 00:47:10

Yeah, Medical.

Shawna: 00:47:11

But the more of the structural component.

Brittany: 00:47:14

Yeah, exactly. And so. Good question. But, yeah, I would follow up with a doctor.

Oh, and then there are speech pathologists that do specialize in feeding, and then there are ones that don't. Like, this is not a part of my, like, every day. And so I know some things and I can look at structures and do something.

But then I would refer to someone who, like, does swallowing, or if you needed a. A specific swallowing evaluation that'll be done in a hospital with a speech pathologist who does that, like, every day.

Mercedes: 00:47:37

Right.

Shawna: 00:47:37

Yeah, yeah, exactly. I do think that scope of practice is really important.

Brittany: 00:47:42

Yeah, exactly. Yeah. And then there's textures. So even Mercedes talked about with her daughter Camila, like, she still has a preference for pureed food.

And so often we think of that as, like, when children are just starting to eat, we might start with purees.

And so there's lots of different things with textures that we can kind of play around with that maybe might, you know, a child might tolerate something if it has a more smooth texture versus something really chunky or, you know, things like that.

Shawna: 00:48:10

Yeah, I think.

And we'll go in a little bit more to the behavioral approaches here, but I find this part to be really interesting because behaviorally, sometimes we might say, like, let's start with the puree, and, like, gradually work up to the pear.

Brittany: 00:48:22

Yeah.

Shawna: 00:48:23

You know.

Mercedes: 00:48:23

Right.

Shawna: 00:48:23

Pear puree. How do we get to the pear? Yeah. And I would never know how to, like, make different textures, you know, just not something I was ever exposed to.

Mercedes: 00:48:31

Right.

Shawna: 00:48:32

Whereas, like, in hospital settings and stuff, there's, like, lots of cool ways that they do different texture progressions and that sort of thing. And that's where the collaboration can come in, beyond just this first assessment where you're Identifying where are their preferences.

It can, like, keep going with along their food journey.

Mercedes: 00:48:45

Right.

Brittany: 00:48:46

And yeah, it's surprising actually, how many different levels of textures, even within sort.

Shawna: 00:48:50

Of what we would call like a.

Brittany: 00:48:51

Puree SBA speech with all just might have like 10. I don't even know because it's not like, like I said, it's not what I do every day, but, like changing from this kind of puree to this kind of puree.

So sorry, if you're listening and you're a medical slp, you know, love to chat with you more. But yeah, the texture is all I'm trying to say, can be a really big part of it. Yeah. So there's so many different things.

And of course, we know with our autistic population that sometimes sensory experiences can be different for them. And so we talked about gagging, but also maybe like, what if they're more sensitive or responsive to smell or, like, touch or.

Mixed consistency is again, is part of it. And so are they seeking, like, really strong flavors or crunchy textures? Oh, my goodness. I have an anecdote here.

As we're talking about textures and flavors.

Sean and I hung out on the weekend and I brought the candy for the kids because we went to this fair and I ended up picking up spicy gummies and my daughter ended up putting five in her mouth, and she so bad they are more spicy than. What did she say a banana pepper?

Mercedes: 00:49:54

Oh, yeah.

Shawna: 00:49:54

She said, yeah.

Brittany: 00:49:56

And your husband tried like, one, and he's like, oh, yeah.

Shawna: 00:49:58

And you like spicy food?

Brittany: 00:49:59

Yeah, it was. It's actually like chili pepper. I saw it. It was so. I don't know.

Shawna: 00:50:03

I've never seen this before. Now I'm constantly on the lookout for a spicy candy. What a weird thing. I had no idea to look for that.

Brittany: 00:50:10

So, you know, are you an experience.

Shawna: 00:50:12

Like that then the next time someone gives you candy, you're going to be skeptical, and I will totally.

Brittany: 00:50:15

Exactly. And so is that like. And I was to think, like, who would ever want, like, spicy candy?

But if you're like, a strong seeker of, like, something really intense in your oral sensory kind of preferences, then maybe you would like the spicy candy for sure.

Shawna: 00:50:31

Yes, exactly. So true.

Brittany: 00:50:33

Okay. All right. So so many different things here that I could go on and on about further sort of the speech pathology perspective.

And so we're not just sort of saying, like, will the child eat it? We're looking at, like, can their body manage it safely and comfortably? We have to, like, look at that.

Do they have the oral motor skills to, like, chew food, swallow safely, and then, you know, we're not, like, going in with pressure. Of course, we're looking at, like, what can their body handle? So that's usually our first step, for sure.

Shawna: 00:51:02

And I feel like that's such a. A missed step when behavior analysts are asked to support feeding.

And something that really, from that bites training that we did really opened my eyes to this idea of, like, making sure to get that formal evaluation done because it gives us so much information. Right. If eating's been hard or painful or overwhelming, then the behavior itself has this long learning history.

And I need to factor that into my plan.

And then if there is concerns around their ability to move food or whatever comes from this oral mech exam is going to change my target foods and all that stuff. Right. And so I think it's a really important step that does often get missed in clinical practice, mostly because.

Or maybe one factor being, like, who's paying for that and how do we do it? Right. This really the number one barriers in collaboration, Right. Are time and money.

Brittany: 00:51:56

Exactly.

Shawna: 00:51:57

And so I think it's an important step that should not get overlooked. It's usually like a single appointment.

You can get some of these things looked at, and then you might even be able to get some hypothesis into what's going on just by doing, like, a food inventory. Right. And seeing where their preferences are land. Then you can come in with, like, already some ideas around, like, oh, I better look into this.

They're only eating purees. I wonder if chewing is really tricky or something like that.

Brittany: 00:52:19

Yeah, yeah, fair.

Shawna: 00:52:21

And so one of the things that doesn't work is just, like, forcing that bite.

Mercedes: 00:52:27

Right.

Shawna: 00:52:27

And again, in the food research, it says it takes, like, a lot of exposures to really, like, a food. And so it makes sense that we're thinking, like, oh, you just need to try it. And then you're gonna like. Like, who doesn't like, like, Right.

Regular candy.

Mercedes: 00:52:40

Right.

Shawna: 00:52:41

Like, if you're thinking that, why won't they just try it?

Brittany: 00:52:44

Right.

Shawna: 00:52:44

I remember we had a meeting with a family and they're, like, celebrating that their child had, like, a Timbit or something.

Brittany: 00:52:48

Right.

Shawna: 00:52:48

And it's like such a little thing because you think, who doesn't like a Timbit?

Brittany: 00:52:52

And for our non Canadian listeners, those are little donuts.

Shawna: 00:52:55

Yes. And so.

Brittany: 00:52:57

I know. Yeah, you're right, though. She was so excited to just, like, have pizza at a birthday party or,.

Mercedes: 00:53:00

Like, have a piece of cake.

Brittany: 00:53:02

But for him, that was not part of his preferred foods. Yes.

Shawna: 00:53:05

And so if you think, like, if they're not taking a bite of candy or like a sweet treat or something like that, then, like, I think again, there's like, probably something else going on that's impacting their ability to try new foods or participate in meal times. And so short term compliance, me forcing this bite on you might win today.

Brittany: 00:53:24

Yep.

Shawna: 00:53:24

It is not going to win the long game.

And that's really, again, what I think really boils down to most of our strategies and things that we talk about on the podcast is like, I'm playing the long game here. I could win short term, but I really want to win long term and, like, develop these, like, real life skills that you need.

Brittany: 00:53:39

Right. And real life, like, healthier habits around eating too.

And so, you know, one bite under that, like, stressful condition doesn't mean they're going to learn to like, like, food and trust their body and, like, feel safe eating and all of those things.

Shawna: 00:53:51

Exactly.

Brittany: 00:53:52

Especially if we know, like, anxiety can be part of it.

Shawna: 00:53:54

Exactly. And then, like, food and mealtime become these, like, condition signals of, like, this sucks. I don't want to do that. And distress, really.

Mercedes: 00:54:02

Right.

Shawna: 00:54:03

And so now we're not really working on you liking broccoli. I am contributing to a potential long learning history of challenging eating.

And then I've also probably now made broccoli, this thing that you'll eat because you think I. Or like, I'm making you eat it.

Brittany: 00:54:19

Yeah.

Shawna: 00:54:19

But you're not going to eat it on your own. And at the end of the day, like, that's my goal.

Brittany: 00:54:23

And so does this translate to when we're thinking about, like, if I. I were to do feeding therapy in the clinic? Are you as a behavior analyst, like, right. Doing it in the clinic.

Like, I could maybe get you to eat that broccoli in the clinic, but, like, you're never doing it outside of this condition or something like that. Which is why we, like, have to look at how we're changing the way we do feeding therapy.

Shawna: 00:54:38

And I'm not unlocking, like, sort of that bigger picture goal.

Brittany: 00:54:42

Yeah.

Shawna: 00:54:42

Right. Is like, I don't know, let's add broccoli into your inventory because I forced you to. Now I got to do the same with red peppers.

Then I got to do the same with carrots, you know, and I just have to go through all the veggies that I want to add in instead of sort of addressing this potential underlying anxiety or texture preference, et cetera. Like, maybe if I just pureed the broccoli, then they would eat it and like it, you know, or maybe they won't.

Mercedes: 00:55:06

Right.

Shawna: 00:55:07

But I think by forcing a bite, you're really like not addressing the core issue, which is potentially some anxiety around eating, some of those sensory preferences around eating, and then they're still gonna go to the birthday party and not be able to eat anything.

Brittany: 00:55:18

Yeah, right, right.

Shawna: 00:55:20

And so I think, like I said, that just take a bite solves like sort of a short term problem potentially.

It makes meal time so awful for everyone and everyone's probably distressed, you're probably overwhelmed, you know, but it's really not helping that big picture goal. And so some of the things that we might hear like, oh, just take a bite, even if you're kind of joking, no dessert until you try it.

That's certainly like an old school thing that we might hear. And even I don't know myself as a exhausted parent sometimes, you know, just like, oh, just eat this thing.

Brittany: 00:55:49

Oh, yeah, exactly.

Shawna: 00:55:51

Trying like different spoons or bargaining or countdowns, all of those things are again, just sort of missing the point.

And that's where we want to take that step back and really do some of those evaluations around their relationship with food and understand that learning history.

Brittany: 00:56:06

Yeah. And then something I know that we talk about all the time is like looking at patterns and like, what are the patterns really telling us?

Because that's what we need to look at. So it's not just like a one off, someone didn't want to eat a, you know, at the cake at the birthday party that day.

It's like looking at these patterns and how do we understand that?

Shawna: 00:56:22

Exactly.

And I think with ARFID in particular, and certainly from a behavior analytic perspective, we might just boil it all down to like escape maintained behavior. So that means something you're doing to get out of it. I let you out of. And then as a parent.

Mercedes: 00:56:33

Right.

Shawna: 00:56:34

I let you out of it and you won. It's sort of this chain that we might see. And then parents thinking like, oh, I just failed. I just let you in. You got out of this. You manipulated.

Manipulated me.

Brittany: 00:56:44

Right.

Shawna: 00:56:44

We hear that word manipulation often. And by boiling it down to this escape maintained behavior without asking those further questions, like, what are they trying to escape from?

Is it truly the broccoli or is it actually this, like, meal time altogether is just like very overwhelming.

Brittany: 00:56:58

Right, right. And then like we said, it could be like there's like gagging or choking fears or the sensory overwhelm involved around it.

And so we're not really looking at any of those things. If we just like kind of go and blame this as just like escape, maintain behavior.

Shawna: 00:57:12

Exactly.

Then it becomes this manipulation thing and stimulating of it could have been an insight into communication opportunities or like what are you trying to tell me?

And I think when we sort of default to like, oh, you're just manipulating me, it like it paints the kid with a pad with a bad brush, of course, and then changes also the way that we interpret the behavior.

If we feel manipulated, then you're gonna respond maybe in a way that's like angry or like more coercive because you feel like you were wronged or manipulated. Where sometimes the escape is really, really like them communicating like, I can't do this. Right, right.

Brittany: 00:57:43

And certainly not to deny that this is stressful. You know, families going through this, incredibly stressful.

And like Mercedes mentioned for Camila, you know, they're really having to prepare a lot before they go anywhere and prepare what her safe foods are going to be. And so, you know, not taking away that this is very stressful.

We're looking now at like how can you notice these moments, notice these patterns and like get different, different opportunities for communication instead of like looking at it as like a blame or manipulation.

Shawna: 00:58:11

Yeah, exactly, exactly. And so we are sort of shifting this idea of like how do we get them to eat into a more neuro affirming lens where we're looking at the context. Right.

Everything around eating.

I'm looking at their, the environment, I'm looking at their sensory preferences, I'm looking at how their mouth moves, I'm looking at the current inventory of foods that they eat and sort of dissect each of those to try and figure out little pieces. Because as Mercedes said, often the kids can't explain what their preferences are. Right.

They can tell you I don't like that or I want that, but maybe not tell you which why that's the case.

Brittany: 00:58:44

Right, right.

Shawna: 00:58:46

And so when we look at feeding interventions for arfid, it doesn't mean that we're not doing anything or we're not looking at their nutrition or we're just like, wow, whatever you say goes, you know, or like this is just a symptom of autism. Right.

We want to look at taking that sensory experience into account, looking at their oral mechanism, whatever those things are, and how to get together.

Brittany: 00:59:08

Exactly. And this is like truly neuro affirming feeding care. So we talked about how feeding therapy was done like maybe 10 years ago in ABA field.

And it's, it, it doesn't and it shouldn't look the same Today.

Shawna: 00:59:19

Yeah, exactly. And again, the bites.

The Broccoli Boot Camp book, I will put in the show notes is excellent resource, I think, for taking a neuroaffirming approach to feeding. Very digestible to parents. Great for clinicians. It has maybe four or five different approaches you can take. And they.

And you'll find, like, one works well with one individual, doesn't work with another, et cetera. So I find it's like a great tool to have in your toolkit for getting creative with what feeding interventions could look like.

Brittany: 00:59:47

And that one specifically is a behavior analyst and a speech pathologist. It's a really brilliant and the best of two.

Shawna: 00:59:52

That's probably why I love it.

Brittany: 00:59:53

Yeah, exactly.

Shawna: 00:59:55

And so, like, one example that they talk about is like, plate A and plate B. And so again, I used to run plate A, plate B back a long time ago.

But what we would do is plate A has like our target food, which is, let's say, is broccoli. Plate B has their preferred food, which is candy. That's like the old school way of running it.

The new way is more like plate A has a selection of things that you get to try whatever you want. And then plate B has another selection of things. You're sort of just switching between the two. And then you might have preferred foods even on both.

Right. It's just like sort of thoughtfully presented food. So instead of this idea of like, nope, my target food for you is broccoli. You must eat broccoli.

We're more so saying, like, okay, we're trying to expand your textures. For example, I know you already like these crackers. Can I, like, get you to do some other crackers first?

And then maybe we could move to bread or something like that, you know, and so just like, again, you're looking more at that sensory experience, sort of how they are responding as well. And so one of the things we talk a lot about is those indicating behaviors. So what do they look like when they're don't like the food?

Like, you know, what's that first sign that this is already, like, starting to lead to an anxiety buildup?

And how do we respond to that in a way that's like supporting their autonomy and this removal of ascent while still, like, sort of making progress on our eating or looking at our eating skills? And so we usually try to build from those safe foods. So looking at if they like ketchup, do they only like Heinz ketchup?

Could we start introducing another ketchup?

Brittany: 01:01:33

Right.

Shawna: 01:01:34

And sometimes what we might. Because again, it would Depend on sort of the why behind. Behind the ketchup only thing. But if it's like a taste thing, and I don't.

I'm fearful of new tastes, then sometimes what we might do with the ketchup is start with the. With the ketchup. We might start with Heinz ketchup and then just add in like a teaspoon.

Brittany: 01:01:53

Right.

Shawna: 01:01:53

Of the other ketchup.

Brittany: 01:01:54

Yeah, I wonder that.

Shawna: 01:01:55

And then mix it all together. And then gradually you change it so that then for their brain, it's not signaling.

Signaling that fight or flight response because it doesn't taste new.

Mercedes: 01:02:02

Right.

Shawna: 01:02:03

However, I will say our neurodivergent friends usually have a very sophisticated palette when it comes to their ketchup.

Brittany: 01:02:08

Yes.

Shawna: 01:02:08

And so they will cat the smallest change there sometimes. And so you kind of like, that might not be a good strategy then.

Mercedes: 01:02:14

Right.

Shawna: 01:02:14

And like, you also want to be communicative about these changes for the most part. I think from a neuroaffirming lens of like, hey, I did mess with your ketchup and you're not going crazy. Right. You know, and so we might.

Sometimes we use different colors of plates or something to show like, these are different foods. These are the ones that you're used to if they're have trouble, see, with understanding language or something.

It's amazing what they can pick up with different colored plates or different. We use it in many different ways other than just food. And so often we'll build out from seafoods. That's a really nice option.

And then I do find that collaborative with the family is like usually very, very insightful. What are you guys usually eating? You know, what's the exposure? What are they eating currently at home? Where do your goals go?

What would be impactful to your family? And helping them come up with some of those strategies, like Mercedes said too, sort of changing their own expectations and feeling.

Sometimes it's just nice to have someone say, you know what, it's okay if.

Brittany: 01:03:11

She just eats ketchup today, right? Yeah, yeah, yeah, exactly. Because you've gotten a lot of judgment like she talked about.

Shawna: 01:03:17

Exactly, yeah. And so we're not talking about something like, just try this at dinner tonight and let's see what happens. It's gonna likely be this like, more.

Brittany: 01:03:28

Thoughtful approach that we're taking and then involving the family, of course. But then we really find that good services, especially for this type of restricted eating, is going to need a multidisciplinary team.

So just like Mercedes talked about, they have a psychologist helping them. And then in Our experience, behavior analysts working with speech pathologists and then also dietitians or occupational therapists.

Like, you might need a team that's going to support this because everyone does bring a slightly different lens. And then they're all bringing it in together. And then.

And if you were listening to this and had suspicions or suspected your child might be highly restrictive eating, then I would be looking for someone who has extensive experience specifically in feeding and arfid.

Mercedes: 01:04:09

Right.

Shawna: 01:04:09

Yeah, exactly. And it's not just because they're a speech pathologist or because they're a behavior analyst, that that's their area of expertise.

And so once we get all this information from something like collaborative assessments, that's when we're able to come up with a plan, certainly as behavior and analyst, sort of bringing in all these different perspectives of something that we do often and matching those up to what the child needs and what works well for the family and what's feasible. And for many families, the first step is not adding a new food.

We're kind of working on protecting what they already have to make meal times feel safer.

Brittany: 01:04:46

Right.

Shawna: 01:04:48

And so I think that's an important reframe, too. Like, I want to make meal time because often, like with Mercedes, right. She's saying, like, from six months old.

Brittany: 01:04:55

Yeah.

Shawna: 01:04:55

Meal times have been tricky. And, like, we've tried everything. And I gotta imagine it's like, exhausting. And when we look at sort of our own reinforcement, you've probably.

As a parent, you're probably dreading meal time sometimes, too, because you're just like, I don't know what I can do here. It doesn't matter what I try.

Brittany: 01:05:11

Right.

Shawna: 01:05:11

And so sometimes that reframe and reset of, like, let's just keep the current food and let's figure out a strategy around the. Those current foods is important and can be, like, a really nice starting point. Instead of swallowing a new food.

Brittany: 01:05:25

Right, right. And just adjusting our own expectations.

Shawna: 01:05:27

Exactly.

Brittany: 01:05:28

Our own sort of bias around food and all those pieces. Yes.

Shawna: 01:05:31

And so we might start with, like, let's stay at the table. Yeah. Let's have a new food on the table. Right. Because sometimes even the smell.

Brittany: 01:05:38

Right.

Shawna: 01:05:38

Of a new. If someone made me sit in and tuna was, I would leave the table.

And so allowing those safe foods nearby or allowing other foods nearby your safe foods. And like, some of those environmental manipulations can give us, like, a step forward.

Because, like, Mercedes talked about going to a restaurant was really hard.

And so I want to work on some of these other things that are also important that don't have to do with me holding a spoon in front of your mouth or even really manipulating what you currently eat.

And so we want to look at preparing our food and how we're doing it because we know with Arfid, sometimes there's this like fear of newness or change in the routine that can make the meal time challenging. And so we want to kind of all work together. Right. I might have an idea as a behavior analyst, you might have an idea as a speech pathologist.

But really it's a family that needs to tell us what that first goal should be. What would be the most impactful thing I could do. Right. That would support your family.

And they might say, I wish that you would just eat whatever we eat.

Brittany: 01:06:44

Yeah, of course.

Shawna: 01:06:44

But let's take a step back and like, what can we do to just make meal time more calm?

Brittany: 01:06:51

Yeah, exactly. And the child has to be part of it. So like you already said, like, you don't want to just like sneak something in.

And then, you know, we're not like trying to trick the child or like hide something and then, you know, sort of go around them. Like Mercedes said really nicely with Camila, like, she's really following her lead.

So she's setting the environment up and the food environment up as best as she can. But then she's like not forcing or pressuring and making the child really part of it.

Shawna: 01:07:19

Exactly. And it could be those small changes. Right. Let's drink from a new. Let's go shopping, get a new cup.

Brittany: 01:07:23

Yeah, right.

Shawna: 01:07:23

And see if that's. And then if they're like, no, thanks, I don't want to do that, then that's probably not like the great starting point.

We could get new lunch containers. We could. I had a child one time that only ate granola bars, that they were cut into fours and each piece had to be the same.

And so in this case, like, could we come to like, try it cut in three, you know, and again, you're looking for their buy in. If they can talk, then great, let's chat about it. Otherwise I might just show them visually. And then they could say like, yep, I'll try that.

Or no, that's too different for me with their body.

Brittany: 01:07:53

Right.

Shawna: 01:07:54

Because if their problem is fear or anxiety or that sensory or overwhelmed and that like pressure, like we've said so many times, really, you might see some short term success, but it's not going to win the long game. And then the damage of this trusting relationship is really hard to go back on. You know, the learning History there comes back to the front.

And so really we want to pick, like, these small moments where we think we can make some steps forward that feel comfortable, too.

Brittany: 01:08:21

And for the family, like, often parents are working, kids are at school, and then you're coming home and dinner is like. Like one of the times we're getting with our kids, you know, and then it's like bedtime happens so quickly.

And so if the whole meal time, I mean, again, like, we want to acknowledge this, can be very, very stressful. But if the whole thing is about, like, adding extra pressure and adding extra layers, like, that's just not enjoyable family time then. At all.

Shawna: 01:08:44

Exactly. And that's where we want to really look at, like, what's driving the restriction.

And so if they had, like, a traumatic choking event, then maybe we want to look at being calm around, like, at mealtime, you know, I call we all sit down to dinner, and you're calmly sitting there. Whether you actually eat something is not my goal right now. It's just like, let's, like, sit and feel calm around food again.

If the smell is overwhelming, then maybe tolerating eating your dinner in the dining room instead of the kitchen. And then, like, gradually working back to the kitchen could be, like, a good strategy there.

Or coming up with, like, I don't know, nose plugs or something. I don't know, like, something else that feels good to the child. And then looking at the, like, a small step forward is, like, really exciting. Right.

And celebrating those tiny moments that sometimes I think it's hard to take the time. Sometimes life's so busy, like you said. Exactly.

And so really looking at what is driving this and what would be, like, a small step forward that we can make today.

Brittany: 01:09:44

Yeah, exactly.

Shawna: 01:09:45

And so the goal is, like, not eat more, you know?

Brittany: 01:09:48

Yeah, right. Yeah, exactly. We talked about that earlier.

It's like, you got to have the safety and trust regulation, and then sometimes there's skill building, like if there is, like, a swallowing challenge or something, and, like, some coordination needs to be strengthened or, you know, something needs to be like a more efficient swallow or something. They maybe just, like, need to build some skills. And so that's sort of what we're going for, is like, not just, like, eat more right away.

It's like looking at all these other things.

Shawna: 01:10:10

Yeah. With, like, an end goal, I think was something flexibility and to make sure we're meeting those nutrition needs. Right.

I did want to shout out, there's some really interesting work from Holly Gover and colleagues. She presented at the Ontario ABA conference in November. And I loved her presentation. I will also link her recent studies in the show notes.

And they're really looking at food selectivity through a lens that prioritizes, like, choice and ascent. And then they also also, I think in the second article, talk about trauma informed care.

So looking at that learning history as well and factoring that into your intervention,.

Brittany: 01:10:45

And it's that this is the stuff that feels so different from, like, previous approaches that were used in ABA and maybe other therapy styles as well, that we're just like, solely focused on getting that bite in. I did want to ask you, Holly Gover, is it a BCBA or like a behavior analyst? Yes.

Shawna: 01:11:00

Yeah.

Brittany: 01:11:01

Cool.

Shawna: 01:11:02

And yeah, like, our old kind of things were on escape extinction extinction, which means, like, you don't let them extinction means you'd, like, don't let them escape it.

Brittany: 01:11:10

Right.

Shawna: 01:11:10

And so if you think, because the hypothesis is that the behavior is escape motivated, they want to get out of eating.

And so you teach them that no matter what they do, it doesn't work and they don't get out of eating is sort of like the theoretical principle behind it.

Brittany: 01:11:22

And it kind of feels like you're stuck in this room and we're never leaving or you're never leaving this table and you're never getting away from the spoon that I'm holding in front of your mouth.

Shawna: 01:11:29

Yes. And I do think there's feeding clinics that potentially still run this model.

But that's where I was very excited with Holly Gover's presentation and the bites as well. I think it also unlocked, like, these other feeding strategies that are way more neural affirming and flexible.

Brittany: 01:11:45

Yes.

Shawna: 01:11:45

And feel good as a clinician. Yes. In Holly Gover's one, the thing that I love is that they were bringing ascent back into the food hierarchy trying.

And so what they were doing is they would put like a board in front of the child and they got to choose how they were going to interact with the food versus me just holding the spoon out.

Brittany: 01:12:08

Right.

Shawna: 01:12:09

And with that autonomy, you think like, oh, well, there's always going to choose to touch it.

They thoughtfully changed up sort of the learning conditions so that they could encourage the child to take those brave steps, but also be fine if they don't feel like today's the day to take that step. And so in their research, they're really trying to build this idea of resilience grit around food, I would say, and food intake.

And then without adding in that trauma or like, added pressure, that I think some escape extinction approaches. Certainly could be contributing to.

Mercedes: 01:12:47

Right.

Brittany: 01:12:47

And there is a visual associated with it that the client actually interacts with.

Mercedes: 01:12:51

Right?

Shawna: 01:12:52

Yeah, yeah, yeah.

It's quite complex, but it's very interesting and I definitely recommend the her research because it did result in eating those non preferred foods without being coercive or running a spoon in the face scenario.

Brittany: 01:13:07

Very cool. And yeah, love seeing some of those new ways of doing something and the research behind it. Now we tried this with someone at the clinic, didn't we?

Shawna: 01:13:16

I adapted it for a different behavior for increase. It was going into the bathroom. The client was fearful. And so what we did was we adapted it so the.

That again instead of being like first you go in the bathroom, then you, I don't know, get the iPad. I'm not sure what usual approach would be was like he seemed to have like some real anxiety around the flushing and the sounds and all that.

And so we use this idea of there's like many different steps you can interact with in the bathroom. Could walk by, you could touch the door, you could put something in it and leave. You could go pee, you could wash your hands.

And then he got to choose sort of what he was doing. Cool.

Brittany: 01:13:50

Same kind of approach, different sort of thing we're tackling or something. We're trying to help the client learn. But cool. Okay.

Mercedes: 01:13:57

Yeah.

Shawna: 01:13:57

Different behavior for increase but similar idea where like again, instead of just like ignoring the sensory or mental health components that might be contributing to the behavior, we are addressing or trying. Right. To address those through thoughtful presentation of materials and arrangement of the environment. Right. And so anyways, I love it.

We'll link her stuff in the show notes.

Clinically it is quite complex and if you don't usually do feeding, reading this article does not mean that you should start running feeding interventions. Right. But when I saw her speak at on Taba, I thought, oh wow, this is like a really cool push forward for feeding in aba for sure.

Brittany: 01:14:37

Cool.

Shawna: 01:14:39

So in a feeding intervention we are not again just looking at how many bites did they swallow and that sort of thing. And again, I think that's where the research is really coming into.

Brittany: 01:14:47

Yeah.

Shawna: 01:14:48

Is we're really paying more attention to those indicating behaviors. How do they tell us that they're in disruption, stress or. And then why.

Mercedes: 01:14:55

Right.

Shawna: 01:14:55

I want to dive in even further than that than just like simply saying, oh, it's escape maintained.

Mercedes: 01:14:59

Right.

Shawna: 01:15:00

Well, why is it escape maintained? Most people are eating food.

Brittany: 01:15:02

Yeah.

Shawna: 01:15:02

You are not.

Mercedes: 01:15:03

Right.

Shawna: 01:15:04

And so diving into that why a little bit more to create this environment where eating feels Safe or meal times feel safe.

Brittany: 01:15:11

Yeah, exactly.

Shawna: 01:15:13

And so for our parents, I would say don't go home and run a feeding program, for sure. It's so complex, and especially with Arfid. Right. And I feel like that's the difference between these two episodes.

One, if you have more of, like, a picky eater and that sort of we expect. What did we say, like, up till, like, seven years of age and even beyond, like, certainly eating.

Like, I have many eating preferences, as Brittany is highlighted. I do, too. And so we all have those things.

And again, I think if you, like, reflect on your own eating, that you might notice certain things for yourself or maybe you don't. And I'm just very neurotic. I don't know.

Brittany: 01:15:48

No, no. I will not touch muscles. Like, even the thought of putting that.

Shawna: 01:15:52

In my mouth, that's disgusting to me. But I know some people love it.

Brittany: 01:15:55

So I have my own things.

Shawna: 01:15:56

Yeah. So I think if we're, like, curious about our own eating.

Brittany: 01:15:58

Yes, yes.

Shawna: 01:15:59

When we look at picky eating. Right. That can be a helpful lens. You know, what would be helpful to them.

And then again, looking at those patterns over time is helpful with the picky eating. The Instagram advice might work just fine. When we're looking at our fed, it's going to up. There's so many layers.

You likely need this multidisciplinary team to come and help with your understanding of what's going on, how to adjust your own expectations. And sometimes I think as a parent, just someone saying, like, it's okay to do that. Right. Is reassuring.

Certainly around eating, like, I know as moms, and I'm sure dads do feel this pressure. You know, I want my kid to be nutritious, and I want to, like, my job is to provide you with nutrients.

And if I'm not doing that, I might feel like I'm feeling. And so professional team can really be helpful there.

Brittany: 01:16:41

And like, so many different elements, like we said.

So with we're doing highly restrictive eating with an autistic child, then I would sort of emphasize that you need the psychologist, like Mercedes was saying, someone to help the family as a whole understand what the approach that we're taking and sort of counseling you through that, because there's so many things that you need sort of the counseling for the speech pathologist told to look at the physical safety of swallowing, the behavior analyst to look at, like, what sort of why the behavior is happening and how to move through it. So lots of little pieces along the way that not one person usually could do with something like this.

Shawna: 01:17:19

Exactly.

And I think the key takeaway I take from like our conversation with Mercedes is if you're in this phase where you're not sure if your child has arfid, but you suspect that as to really try and take that pressure away for now, you know, think about what does success look like that's beyond expanding their foods? You know, can we have calmer meal times? Can we figure out a routine that works well for you and for me and your brother and, you know, the.

The whole family is functioning well and reach out for that extra support? Because I don't think most of the time you can like, kind of figure it out alone.

Brittany: 01:17:55

Yeah, exactly.

But if we're going to kind of leave parents with those thing to sort of start noticing or take notes on, it might be things like how many foods are accepted. And so, you know, like, what are they. What are they eating? What are their safe foods?

And then thinking is like, are there entire food groups missing from that? And then like we talked about, like, is there swallowing issues like gagging or gurgling, wet voice. Is there like distress and panic or shutdown?

Shawna: 01:18:23

Right. Yeah, exactly. And then of course, looking at their growing and nutritional intake take. Is it affecting them?

Is it affecting their ability to participate in things like birthday parties or even our family meals? Does. Is what I'm doing making things worse?

Brittany: 01:18:38

Right.

Shawna: 01:18:39

I think that certainly has happened to me. And like, no judgment. Right. We're all just like trying our best to solve sort of these complex problems. Yeah. And so when I.

Is what I'm doing making this worse or better? Right. And then have I noticed any of those, like, gi discomfort sort of things or like mechanical things like they're to.

Brittany: 01:18:54

Trying choking, constipation is another one like pain and belly, you know, all of those things. And so again, you would want a doctor involved so that they can look at the medical side of everything. So lots all of that to see.

You know, for parents, some takeaways is like keeping meals predictable and like stop making every meal a test. I say this for language acquisition, for feeding.

Mercedes: 01:19:18

Right.

Brittany: 01:19:19

Everything is like, life is not a big test. And so often we need to like, step back.

Shawna: 01:19:24

Yeah. And trying to get rid of that one more bite, you know, because one more bite actually does not make a difference. And I remind my family of this too.

Mercedes: 01:19:30

Right.

Shawna: 01:19:30

Like, one more bite of broccoli is not actually going to impact their like, nutritional intake, you know, and what I'm doing instead is making it sound like broccoli is a bad Thing. And I love the word that Mercedes use, that food neutrality idea. I thought that's like, so such a great word for it.

Track those patterns without trying to infer too much.

Like, and that's something as a behavior analyst we're really trained on, is like gathering the information and looking for patterns and trying to remove my own bias or feelings around it. And then you could try out some small changes over time. You know, is it a different brand of ketchup?

And again, though, you want to come back to those tracking patterns and trying things out over time. Different shapes, different temperatures and that sort of thing.

Brittany: 01:20:14

Yeah, exactly.

So, you know, when we look at it through a multidisciplinary lens, we're stop seeing the child is like something difficult like we talked about, and just like, ask better questions. And having a big team to support you through this can ask all the right different kind of questions.

Shawna: 01:20:28

Exactly. And then as a behavior analyst, we're really looking at those patterns and what's been happening in the child's learning history.

And we care about what their emotional state is when it is time for either eating. And then are we making progress towards sort of these goals that food is safe, adults are safe. Your removal of ascent matters.

The way that you're communicating about food matters to me.

Brittany: 01:20:52

Yeah, exactly. So it's not always just about eating more food.

Shawna: 01:20:56

Exactly. Yeah.

We want to help the child build this, like, safer, more flexible, functional relationship with food in a way that their body and nervous system can handle. And like, in some cases, that's not going to look like eating hot hundreds of food.

It might look like eating two foods from each category or something like that. And one final shout out to the Broccoli Bootcamp book. It does have some appendix in it that helps you gather some of that information.

It'll give you a food inventory and that sort of thing.

Brittany: 01:21:22

Nice.

Shawna: 01:21:23

Awesome.

Brittany: 01:21:23

So we're not just, like, trying to win that bite. We're trying to build the conditions where eating is safe and flexible and possible and just like, more hopefully just better for the whole family.

This is a complex topic, though, I will say, you know, we touched on a lot today, and it is very complex.

And so we welcome your thoughts, your feedback, if you have suggestions, if you work specifically in this area and want to chat with us, we'd love to reach out to you and connect and parents, if you're in this and feel like you have questions, certainly we're here to help you find a path and help you navigate some of those tricky, tricky times. So, again, thanks for joining us. As always, if you liked this episode, please share it with someone who you think might benefit from it.

Send us a direct message or a dm, give us a rating on Apple or Spotify, and tune in next time as we continue to explore different topics with autism and always looking at a neurodiversity lens with full heart. Thanks so much everybody.

Before we go, we want to remind our listeners that topics we discuss in the podcast are not a replacement for professional medical advice. Please contact a professional if you have questions.

Shawna: 01:22:34

And just a heads up, we'll use both identity first and person first language to respect different preferences. We'll also see treatment and therapy since we come from a clinical space, but always with respect and a focus on what works for each person.

Brittany: 01:22:47

See you next time.

Shawna: 01:22:48

Bye. Sam.