Neurodiversity & Feeding Therapy

Hello, hello, and welcome to the Feeding Pod. This is your host. I'm Bri - Brianna Miluk - and I am a speech language pathologist and certified lactation counselor. I specialize in infant and medically complex feeding and primarily see patients in the home health setting, although I do have some that I see in outpatient or via tele practice.

I'm also an instructor at the university level and a PhD student studying communication and information sciences. I have a huge passion for evidence-based practice and supporting information literacy in speech, language, hearing, feeding, swallowing sciences specifically as it pertains to social media and translational research.

This podcast is meant to share anything and everything related to being a pediatric feeding SLP, feeding therapist with sprinkling in a little bit about working in academia, being a PhD student, and how to access appraise and implement research into clinical practice. 

Some episodes may contain guests, and I'm already looking forward to some of those coming up, while others might just be me rambling about something that's been on my mind. Regardless, my goal with this podcast is that you walk away not just with newfound knowledge, but with the inspiration to think critically and not be afraid of research.

So, without further ado, let's get into today's episode.

Brianna Miluk: 

Hello, welcome to the Feeding Pod, where we talk about all things pediatric feeding, swallowing, and how to be better providers and how to better support families and their children. So today we're gonna talk about a topic that is newer in the pediatric feeding disorder space, and this is related to neurodiversity affirming care and trauma informed care with autistic patients and other patients with neurodiversity.

So, whether this is ADHD, OCD, autism, or an assortment of other diagnoses that may or may not be influencing how a person is eating. So I wanna talk about this, and this is just kind of a stream of thoughts that have run through my mind at different times, based on different things that I've read and I've heard and, experiences and discussions with autistic people and with autistic adults and while working with Neurodiverse children. 

So, Okay. First and foremost, I think when we think about autism, we typically think about just a very select few characteristics. I think the general public typically thinks about things like echolalia or repetitive and restrictive patterns and behaviors, but all of those types of things can also go into feeding. So, repeating certain types of foods or being very restricted in diet variety, texture variety, the color of the food variety, the taste of food variety. All of those can also play a role in pediatric feeding and swallowing. And I think a lot of times when we think of autistic patients, people go straight to thinking about like those characteristics as they relate to behaviors and communication and forget that those characteristics are a part of that person and they're just a difference and it's really important that we think about how we approach our treatment and services with those patients from a neurodiversity affirming and trauma informed lens. 

So in order to think about using a strength based approach with these clients and their families, we have to really think about how diet culture, and society have influenced our viewpoints on foods and how you're, you know, "supposed to eat" what foods are "good," what foods are "bad." And I bring that up because I think it's really important for us to think about like, okay, are the patterns that somebody's showing in their eating habits, is it really disordered or is that just a difference in their food preferences as compared to yours or as compared to this like overarching viewpoint society has put on the types of foods that we're supposed to have, and then the other lens, we also hear about ARFID, right? So Avoidant, Restrictive Food Intake Disorder. With ARFID the diagnosis states that there has to be food restriction to the point of influencing nutritional intake. So, if a patient does not have nutritional deficiencies, just because they have a restricted diet doesn't mean they have ARFID. ARFID is a diagnosis where the restrictiveness has reached a point that it is influencing the client's ability to gain weight, grow, develop, and meet their nutritional needs and whole other side of that is with ARFID it's really important that you first make sure that that's not actually a pediatric feeding disorder, and that's gonna be in a totally separate episode because that is a topic that I could talk at length about. But if you wanna do a quick, reading or learning about the difference between ARFID and PFD, then definitely check out the resource by Feeding Matters, Dr. Kay Toomey put it together and it is really, really, really wonderful. The team at Feeding Matters puts out a lot of really, really great resources for feeding therapists, so definitely check that out. 

So, kind of bringing that all together. When we are working with patients that have a neurodivergent diagnosis, then we have to think about: is this a disorder or is this a difference? Is this just different than what you eat? Than what I eat? Than what society tells us to eat? Okay. I know, I'm repeating myself here, but it's really important that we recognize that because there's so much variability in "normal."

There's so much variability in function, right? Let me give you an example. There's differences within all of us, so like I don't really like to eat eggs sometimes I can do it if it's like on a sandwich or something, but majority of the time I can take like two or three bites and then I'm like, mm, nope, something about this just can't do it. It's really hard for me. Some people love eggs. Some people don't like sushi. I love sushi. We all have preferences, but as long as these differences and these preferences are not so restrictive that it's influencing us thriving and being well-nourished. And also, who's to say that we have to get our nourishment from very specific foods? I mean, there's so many dieticians that will speak about how we can get the nutrition we need from a variety of different foods, and that doesn't mean we only have to eat fruits and vegetables or that doesn't mean we have to only eat fruits and vegetables in their raw form. We can eat them with a bunch of different seasonings, we can eat carrots. That's literally what I had for lunch today. I had some carrots and I dipped them in ranch cause I think they taste better dipped in ranch or dipped in hummus than they do plain. That doesn't take away the nutritional value of carrots.

Okay. So I wanna kind of shift gears here a little bit and kind of talk about this as it relates to adult food differences. One example of this that I think people will relate to or be familiar with is the content creator and influencer Elyse Myers. Now she has talked, at length multiple different times about her food preferences, and she will go through certain foods for breakfast, lunch, and dinner. Time and time and time again.

Like she will eat the same thing for breakfast, lunch, and dinner for weeks, weeks, weeks, weeks, weeks. And then all of a sudden one of those things, or one of the meals will just be, she'll be repulsed by it and then she'll just find a different one and start back over. And she talks about how she's done this like pretty much her whole entire life.

She's always had these types of habits. And when we think about ARFID, we think about feeding differences. This is a difference, right? She is still a very high functioning adult who is constantly working on bettering herself and others, and she has an amazing platform that she speaks on, and she's really trying to normalize like it's okay to be different.

It's okay for us to not all be the same, and she's nourished. And that's what matters, that she can wake up and she can play with her son and she can hang out with her husband and she can create memories and she can create content so that we can watch it and feel better about ourselves. And so, you know, that's a perfect example of why we have to look at it as like, is this disordered or is it just a difference?

There's also another person I wanna mention who talks about her experience with ARFID. So, Rachel Dorsey is an autistic adult. She is an SLP, and we will link her blog post below where she talks about her experience with ARFID, and one of the biggest things she talks about is: first of all, what it feels like to her, how it varies depending on her mental health status.

So, whether she is very, very anxious, she's having a stressful time, that's going to exacerbate her ARFID. She also talks about how we really need to be careful in trying to push widening variety, pushing large volumes of certain foods that are not preferred at that time on kids who are having sensory or psychosocial difficulties around mealtimes, cause that can be very traumatizing. 

One of the things she talks about with Arfid that I think is really powerful is that she is aware that during these times when her diet becomes very, very restrictive, that she needs to eat, she knows she needs to eat the typical variety of foods that she is more willing to eat, but, and I love this quote, she says, "The shame with ARFID is multidimensional. There is the shame of not being able to eat, combined with the shame of knowing you are an inconvenience for others, combined with the shame of this possibly never ending." And I just think that's so powerful because it's like the children we work with also feel that they know, they sense that anxiety, they sense what we're trying to push on them.

They sense these feelings and by pressuring it during these times, we're not helping. And what we should be focusing on as professionals is why did the child start to limit their diet? And I am speaking on after you've ruled out those medical components, right? So, this is, after medical components have been ruled out or managed, and you have this child who's still just really anxious and nervous about approaching mealtimes about new foods.

Or maybe sometimes they eat a good variety, but the holidays come up and the family's traveling and they're feeling overwhelmed and their foods go down to a handful. That's okay. There's so many other ways to get nutrients in that we can think about during those times. So, you know, during those times, what can we do as providers to support the family to say, "Hey, you know, when this happens, here's some options for you.

First, you're gonna make sure, that you're continuing to support the child, you're following their lead. They're communicating something's wrong, something doesn't feel right, and if I eat that thing, I don't feel safe around it. It doesn't feel safe right now. It doesn't feel okay. And you need to trust them on that.

And by trusting them, they're going to trust you and that's gonna help in the long run. So, we don't wanna push anything for short-term gains because what might be the negative long-term implications of that? We wanna think long-term. And by thinking long term you're going to be supporting love and connection and relatedness and competence, and respecting their autonomy."

All of those principles of using responsive feeding practices. The other thing I wanna point out or talk about that, that comes up to my brain is like whoever said that, in order to discharge a child from feeding therapy or like in order to determine that they have disordered eating, like a feeding disorder, that they have to be eating five foods from every food group or 10 foods from every food group?

Like where did this arbitrary number come from? And why? Because we get nutrition from a lot of different ways. And for some patients, if that means when they're having a really stressful time or they're really anxious or there's been big changes in their routine, and the only thing they can control that makes them feel safe and secure is mealtimes.

And the only thing they want during that time is a supplemental shake or the only thing they want during that time is a list of five foods. It's gonna be okay. There are supplements and vitamins that they can take that are going to support that. And I agree, I think food is a very social experience, but for some people, social experiences are already significantly more anxiety and stress inducing.

If you throw on stress and anxiety, I mean, I can tell you when I'm super anxious or I'm super stressed out, I'll forget to eat, or I don't want to eat cause I'm not super hungry. And then you have some people that when they get super stressed or they feel super anxious, they want to eat a lot or they, like unconsciously eat.

So, there's two sides of it, right? Like that can also happen. And so, who are we to say how a person has to eat in every single situation all the time? The other thing is, when working with any patients with feeding disorders, but especially with patients that have more restrictive diets, that is due to a neurodivergency or a difference in their brain, is we have to think about how diet culture affects us as professionals and or the family we're working with. If we don't have a good relationship with food, then we have to pay special attention to that. We should be striving to heal our relationship with food, and we need to be cognizant of that when we're working with kids and families to not put that pressure onto them. If you got a thing, with sugar, that's your business. And it's not necessary to push it on a family. If a child is very highly malnourished and all you can think about is how much sugar is in that supplemental shake. It's not the time for that. Uh, no, no, not the time for that. Honestly, never the time for that sugar is not bad.

When it comes to the nutrition side of stuff, definitely work with a registered dietician nutritionist who can guide you on that so that if a child does have a diet that's restricting to the point of having malnutrition or missing certain key nutrients, then yes, work with them. Figure out what supplement, what shake, what can you add to their diet? Prioritize those. If you're working with a patient who has ARFID, or you're working with a patient who has a very highly restrictive diet, but they are not nutritionally malnourished and they do not want to work on that, don't work on it.

I'm gonna quote Rachel Dorsey again from her blog because I think she just says it really, really well. Rachel States, "Based off my clinical experience, personal experience and education, I believe that feeding therapy for neurodivergent restrictive eaters with no or resolved oral motor limitations or medical complications. [Again, we've ruled out any feeding skill or medical standpoints] should not focus on feeding therapy."

She further goes to say, "If the child eats 10 foods and a multivitamin and there aren't any nutritional or weight concerns, this child should not receive feeding therapy because the feeding therapy is focused on making that neuro divergent child less of an inconvenience. And it can have devastating consequences."

I mean, snaps, Rachel. I'm here for that. And you know what? We have to listen to autistic voices to tell us how to approach these situations, to guide these situations. If somebody wants help, if this child wants to, then yeah, sure we can help them. 

We just need to make sure that we're not causing any long-term trauma for short-term gains. Feeding therapy is not the end all be all. It's not what life's all about, and I appreciate people like Rachel for sharing their story so that we can learn more about approaching patients and families that have a child with feeding difficulties or ARFID diagnosis. 

So, I'm sure that this was a difficult conversation and for some of you, this might really like, "Whoa, that completely changes my approach to some of these things and makes me think about it in a different way," and if that's the case, awesome. I hope so. I hope that this brought about some different ways of thinking and differences between that and your approaches that you've done in the past, and I hope that you'll consider making a shift and working on providing more neurodiversity affirming care, which ultimately is trauma informed care, which is what is going to be best for our patients and families in the long run.

Be sure to follow for more episodes. Hit the subscribe button. I don't know where it is. I'm, I'm new to this whole YouTube thing. Okay. And we will have linked down below all of the resources that we talked about and a couple other articles that we recommend reading. Again, it is Bri here and thanks for watching or listening. Have a great day! Bye.

Thanks for tuning in to the Feeding Pod this week. If you enjoyed today's episode, please don't hesitate to share this podcast with your friends and colleagues. And leave us a five-star review wherever you're listening from. If you're interested in learning more about pediatric feeding and swallowing, be sure to follow Bri - me - on Instagram, or check out my website where you can get access to more courses and information, www.pediatricfeedingslp.com. Again, thanks for being here and listening to my ramblings, and I hope you'll keep listening. Until next time, cheers.

References:
Rachel Dorsey - ARFID Again

Kay Toomey Picky Eater vs. PFD vs. ARFID

Elyse Myers https://www.tiktok.com/@elysemyers