ARFID and Autism: Conversation Surrounding The Physical, Social, And Psychological Implications of Feeding Disorder

Mya Thomas (host): Welcome to TheParentPartner, an initiative I started with the intent to equip parents of children with Autism with a supportive community, relevant knowledge, and direct guidance in learning through each moment while celebrating every achievement. If you’re new here, I’m glad to have you, welcome. And if you are returning, I’m glad to have you back! So this month there's a lot of food holidays coming up,  the American holiday Thanksgiving, and also any sort of winter holidays that are coming up regardless of what you celebrate, usually there is food involved. And I think this is  the perfect time, while the months are dwindling to the end of the year, to talk about Avoidant or Restrictive Food Intake Disorder, better known as ARFID, why it’s prevalent in children with Autism and how it ultimately affects their development. I wanted to give the floor to Rachel Rivera, who I had today on the podcast. Firstly, I really wanted to thank you for coming on the podcast, and thank everyone who is listening! So I’ll give you this time to introduce yourself. 

Rachel Rivera: Awesome, thanks so much, I’m so excited to be here! So, my name is Rachel Rivera, I am now a fifth year Clinical Psychology candidate at the University of Rochester in upstate New York. My research and clinical interests broadly focuses on improving culturally responsive care and support for Autistic people across the lifespan and a lot of my work has specifically focused on kids, adolescents and young adults as it pertains to sensory processing, identity stress, and selective eating, which is something I am excited to talk more about today!

Mya Thomas (host): Thanks so much! And I love how you also talked about the different stages because ARFID does not only impact you in childhood and it can impact your outcomes later on in life, which I think is really interesting! I wanted to start this conversation by a question that a lot of parents may have in mind if they already have a child diagnosed with Autism and may suspect that they have ARFID as well. What is ARFID and does it differ from typical childhood food pickiness? And does it also differ from disordered eating? 

Rachel Rivera: Yea, so this is a really great question. So ARFID was introduced in the newest version of our diagnostic and statistical manual, so the DSM-5. It used to be called Childhood Selective Eating Disorder. And so, it’s what we really think of as really selective eating, and now we know again, it’s ARFID instead because we are extending it beyond childhood. Some of the traits that we think of with ARFID are again a sense of restriction on food that is typically based in either an aversion to certain sensory experiences,  certain textures or tastes, or an aversion to certain consequences. So if someone has had an experience with choking or gagging, they might avoid certain foods that they associate with those experiences as well. And oftentimes this can also again be experienced in severe cases that lead to malnutrition or not being able to get enough value in their diet or have enough variety in their diet. 

And this differs, for the second part of the question, so how does this differ from childhood- or selective-eating in general or other eating disorders, and these are two really important distinctions. So tackling it for how it differs from selective eating in general, againthat key piece is thinking about the severity of the selective eating and impact on nutrition, and kind of being able to sustain one’s body. And so for selective eaters, we know based on research that its pretty typical for kids to be selective eaters from ages 2-6, and we know that there's a sense that it’s a pretty universal experience and we also know that in Autistic kids, they are more ly to be selective eaters and that after that kind of normative period of selectivity, they are also more ly to be selective eaters into adolescence and young adulthood as well [inaudible].

So what selective eating is again this sense of not having as much variety in your diet, maybe liking certain safe foods, I know for Autism some of these foods may be  preferring more uniform-seeming foods,  foods   will look the same and taste the same every time you eat them. It could also be refusing foods and new situations, so this idea that we call food neophobia is really common in selective eaters as well. So [this is] when presented with a novel or new food item, being more ly to refuse that than other kids is also pretty common with selective eaters. But again his piece when we think of  how it differs from selective eating to ARFID is really again the level that its impacting , and the anxiety surrounding eating. So for selective eaters, they might just have their preferences and might be able to get their daily nutrition and adequate vitamins and nutrients whereas those with ARFID present with pretty severe anxieties surrounding food situations and meal times or in the presence of certain foods. 

They might struggle to get that variety and that appropriate amount of nutrients and vitamins. So that’s what differentiates those two. 

When we think about ARFID compared to all of the other eating disorders that we see in our diagnostic and statistical manual, ARFID is one of the only ones that has nothing to do with this idea of body weight or body image. When we think of things  anorexia which is this idea of food restriction, which is very similar to ARFID because you’ll see food restriction, you’ll see that people might have difficulty getting enough nutrition, but where they differ is you'll see folks with anorexia or bulimia who have a focus on this idea of perfectionism or wanting to look a certain way. They are pretty fixated on their diet, so they really think about food a lot, whereas when we think about ARFID, people who have ARFID are really more thinking about, instead of thinking about the body image, they’re more focused on the aversive consequences or the sensory experiences. That’s what’s driving their lack of interest in food. So, again thinking about if you really don't like the texture of things like blueberries or mushrooms and maybe the thought of them makes you gag, that’s going to make you not want to eat those types of foods. So it really has nothing to do with that idea of looking a certain way, it’s more focused on your body’s physical reaction to certain foods and wanting to stay away from that, so that’s how those differ. 

Mya Thomas (host): Thank you, I think that’s really interesting how you compared it to other eating disorders, and I didn’t really think about how, with other eating disorders  bulimia and anorexia, it’s more  centered on the possibility that there might be a good consequence,  losing weight or  fitting a certain body image. Whereas for ARFID, it’s really focused on “what’s the worst that can happen” in any given food situation where it's  terrible outcomes, fear of choking, or just general fear or anxiety surrounding the food, which I think is really interesting to distinguish because the research is very novel in the 2000s when it came to  anorexia and bulimia, when they were looking at the social implications and it was probably the media and how people discussed people's bodies and how violent language could have played a role in  the expectations on women and all sorts of things. Whereas now, I love your research that you're doing now we're looking into an eating disorder that is not focused or pinpointing on the obsession of  a good consequence. It's more  the attention to the possibility of something bad coming from eating a certain food, which is really interesting. And I feel  I've never really heard about that in terms of eating disorders. I feel  there's this stigma where it's everyone who has an eating disorder is obsessed with the way they look, which one, I feel  research probably has found that that might not be true. It could be  societal pressure,  even parental pressures or  comments, but ARFID seems  it's purely coming from within, and it's also their fear of food and food outcomes, which is really interesting. So I know you talked about a lot of the sensory sensitivities or  aversions that come with having ARFID. And I feel  parents who already have a child who's diagnosed with autism are already going through what most parents go through, which is the early intervention, and if they need to, they can get the speech therapy, the occupational therapist,  everything is for Autism which is really good. I think if you've seen my Early Intervention podcast,   that I really do love the idea of early intervention and that research is so amazing now, and you can diagnose it at nine months old, which is amazing, but they may just put it under the same  umbrella as autism, where it's food aversion, sensory sensitivity, that's all autism. And I don't know if the subconscious putting it under that  umbrella is a good or bad thing or neutral thing. So I was wondering if there's any particular reason why ARFID is so prevalent in children with autism, and if parents should get their child separately screened for it?

Rachel Rivera: Yeah, really great points. And I think given the research, we see such an increase in research over the past five or so years of really giving more attention to ARFID and understanding it. I think it's been a long time that we've looked at selective eating, especially in childhood and autism. But now thinking of this, this DSM disorder, that's an eating disorder,, again, trying to parse apart how that's different from selective eating and how it's different from autism, I think is so important. Because again, not all autistic folks will have ARFID and not all people with ARFID will be autistic. And I think it's important to find those distinctions and have better precision medicine and feel  we can equip parents and caregivers to, and even autistic kids, adolescents and young adults to understand when something might be again, just them being more selective versus when it's then impacting their wellbeing or their physical health, I think is so important to catch that as quickly as we can, because we don't want to have the negative impacts of that impact on nutrients and vitamins and nutrition overall. Things about ARFID and autism, I will say  in terms of prevalence rates, we still are getting prevalence rates and understanding how common it is. I think the highest rate I've seen is that ARFID and autism can co-occur as highly as in 21% of people. There are, whereas  when we compare it to something like anorexia, the prevalence rates have ranged from  5% to about 23. So it's kind of in a similar vein of where we see anorexia and autism co-occurrence rates. Some of the reasons that we might see an overlap between autism and ARFID is we know there are some behavioral and cognitive features of autism that have some of the same psychological underpinnings of ARFID. One of those pieces being that cognitive inflexibility. Having real difficulty understanding that, again, if you had one blueberry that really wasn't great, or you didn't like the texture that one time, that feeling  you need to stick to that insistence that , I'm not trying other blueberries if I had that bad experience. So having that insistence on sameness, which we know is a trait of Autism, also can very, very much co-occur with traits of folks with ARFID. Also, again, that sensory piece, which we know a lot of autistic folks meet criteria for having some kind of sensory sensitivity. And we know foods have so many different sensory features, the experience of smelling foods or tasting foods or seeing the way foods look, there's so many features of sensory sensitivities that go into that experience of eating at mealtime. So having some kind of sensitivity in one way or another can really impact, again, a core criteria of ARFID, which is having that aversion to certain textures or tastes or smells. So that could be another reason why they really overlap. And then thinking about that almost overgeneralization or attribution of those aversive experiences. So gagging and choking, and then really feeling inflexible in your willingness to kind of set shift or shift attention between, again,  your past experience and what's presented to you now. I worked with a young adult who I diagnosed with ARFID and autism within the past year, who their parent described to me that they had a negative experience with choking a few years prior. And when they were presented with a new food, they would sit for four hours in front of the new food and not eat it because it took so much, there was so much anxiety surrounding wanting to try something new and challenge that belief that they had in themselves. That's a little bit of where we see some overlap as well. And again, even though there are some differences in that you might have some autistic folks who are selective eaters who don't necessarily screen for ARFID. Again, we really want to get a sense of how it's impacting their wellbeing. And I think this gets to your point a bit about “do we get a kid screened? Do we not get a kid screened?” I think that important piece of nutrition is so important. So seeing again is my kid exclusively eating the same exact thing and I need to give them [inaudible], I think one thing that always stands out to me is , if a parent needs to introduce a supplement  Pediasure or something else to make sure they're getting enough nutrition, then talking to your pediatrician and being really explicit about the different behaviors and not just what foods are my kids eating, because that won't be enough information.

It's again, that could just be that you're not getting enough variety and explaining if there are any aversions to certain foods? Is your kid fearful or really anxious around mealtime? Does it feel like there's this marked fear or  clear distinction that there's something that they're upset about eating above and beyond just having certain preferences, because that'll be important to convey. And there are some measures that are still being developed by some folks at Vanderbilt and their eating disorders lab, who do a lot of work on ARFID, and there's what's called the nine-item ARFID screen. It was developed by Zickgraf and colleagues. It's nine items that they can fill out and see how high that a child, adolescent, or young adult might be meeting on the scale for ARFID. I've found that when I've worked with new cases who have suspected ARFID, it's something I've also  pulled out now to see again, is this something that's Autism and selective eating, or does this feel  this is something a bit more with regards to eating? So I think it's really important again, when you're talking with medical professionals to not just report on the dietary variety, but also what mealtime looks like and how the kid or adolescent or young adult is feeling around mealtime. Because I think that gives important context to differentiate between those experiences. 

Mya Thomas (host) I think it's really cool that there's a screening process with this, just because it's , now there's a possibility that parents with both children with autism and ARFID don't have to just group it under the  umbrella of autism, which I think is really cool. And this brings me to my next question, which is, are there specific social attitudes that pediatricians look for? I don't know if the nine item ARFID screen looks  I guess the social relationship that they have with food. And also I think in, I guess the adolescent  climate where food is more of a thing that they do where they go out with friends and they eat food and they even cook food with friends. I was wondering if that impacts their socioemotional relationships with others, if  they are just experiencing these aversions or fears surrounding any sort of food. 

Rachel Rivera (host): Yeah. And this is again, such a great question. And I think to answer the first part for when doctors are looking for ARFID,  again, definitely capturing a sense of that fear and anxiety surrounding mealtime, and also differentiating that from understanding other eating disorders. So if there's a desire for thinness or if there's a focus on body image, then there might be, again, then we might want to look into other eating disorders instead of ARFID. But I think capturing this child, really fearful of choking or gagging or certain textures of foods or tastes of foods, that's really capturing ARFID compared to just selective eating or other eating disorders, and then when thinking about it, I love this question of social emotional experiences and relationships, because I knew before we were chatting a bit before we started recording how eating experiences are so nuanced. It's pretty rare that we're just eating by ourselves in isolation for our entire lives. When we're young, our eating experiences are shaped with eating with maybe family or caregivers our siblings or in school systems we're eating at lunchtime, which for autistic kids can be really overwhelming with so many social interactions happening really quickly and potentially being an overstimulating environment. And as we get older, there is going out to restaurants there's making food with other people. Food experiences are so nuanced and present a lot of different potential challenges.  , and so I think, again, when we think about some of these social communication difficulties that are present in autistic folks and how this might interact with social challenges present with ARFID I think it, I would say there's no  one size fits all answer. I think it's really going to be dependent, I think, if some of the challenges that people who might have both might share in terms of what might it look to go out to a restaurant that you've never been to? Would you even want to go out to a restaurant you haven't been to?  Would you even wanna go out to a restaurant you haven't been to if you're fearful of what the food might be? Or how much advanced preparation might you need to do some research on the menu? Also, are these new people you're going out with who might not know some of your safe foods or who might not know how to react when you're being certain selective? As I mentioned this before of .. even as someone where I grew up with food allergies, having a similar stressor do other people here know I have a food allergy? How are they gonna react when I have to awkwardly ask a waiter if they use peanut oil? That was something I was always really anxious about. And so again, when we think about some of the anxieties that are surrounding food for ARFID and around social interaction for autistic folks that can provoke a good amount of additional anxiety or stress. I think of when you're thinking about some of that anxiety and those challenges, how that might limit your ability to feel present in focusing your bandwidth to those social interactions. So maybe if you're so focused on having safe foods or avoiding those aversive consequences, you might miss out on some social interaction opportunities. So I can definitely present some challenges for just social-emotional health. And that's something I'm, again, studying right now is some of the impacts that these experiences and how autistic folks perceive their selective eating, how they perceive the impacts of selective eating on their social life and on their mental health and physical health. And I think it'll be really important to, again, understand that nuance and that difference and how that can be impactful. Because I think, again, it's not just physical health. I think there's more to understanding this and it's really important for people to consider that.

Mya Thomas (host): Thank you for that. I think it's really cool how you're able to focus on the fact that it goes beyond physical health, because I feel  the first concern is just  the physical health, the digestive health,  just going with what your pediatrician says, which is so important as well if they're experiencing  their child is going through  some sort of constipation and they need to add fiber to their diet somehow, or are experiencing  a nutrient, a nutrition deficiency. I think it's really important to think about physical health, but  ARFID is not something that just goes away. So I think it's really crucial to think about the  long-term  social impacts as well. And I think something that I really  love to talk about on my page is just  having a safe environment or home environment where  children with autism can learn by doing, and then giving them those tools and appropriate reinforcements before putting them out into the real world and allowing them to  generalize those skills. My dad always used to be like “you only get good at doing things by doing things.”And I'd be like “oh my goodness!” But that is the best policy I feel  in terms of learning anything. And I think that, that being said, a lot of the kids that I work with, it involves a lot of social or communication training. Whereas, I think relationships with food are a bit different. I don't have as much experience with that. I wanted to know if there were any  interventions or methods that parents could use with their children to develop more flexible eating patterns over time, or is ARFID more of a chronic feeding disorder that just takes a different route? 

Rachel Rivera: Awesome question! And again, not a one size fits all answer. I think a bit of it depends on the level of severity of either nutritional impact. Again, because you said some of the first thing you might want to tackle is if it's impacting someone's nutrition, we want to make sure that they're getting enough to support their physical health so that it doesn't impact other aspects of their physical health. So when food selectivity within ARFID becomes extremely disruptive or leads to malnutrition or other serious health issues, it's kind of important to think about some kind of  feeding, other feeding intervention or feeding methods for some more intensive type of understanding feeding problems. Again, we really want to focus on health first before we tackle other aspects of ARFID. So again, if there's some significant issue as it pertains to that disruptive selectivity a feeding clinic is one really great option. There's other types of, again, medications or treatments or therapies that might help in cases of ARFID. It's important to note that ARFID and autism,  I said before, are really individualized disorders. So if you're getting one type of therapy or supports for autism, it's not necessarily going to be the same for ARFID. Given that they can both manifest in different ways, they both kind of exist on this continu  of experience. Other providers that can help with ARFID, things  nutritionists, dietitians, primary care physicians, again, thinking about accommodations in the home, in school, how to make kids more comfortable with and safe trying foods or challenging some of their food aversions if they feel ready. Introducing safe foods that, again, will get them enough nutrition is really important. There's also for kids who might be a little bit older and can do a little insight-based therapy, there's actually a specific type of CBT that was modified for ARFID. So again, challenging some of those really rigid or stringent beliefs about sensory aversions or aversions to gagging or choking and working on feeling supported and safe to do so in an environment is also a great option as well. And I think, and again, I think just having supportive people in your life, which I think goes for both autism and ARFID is having people who will understand that this is a part of you as a person and give you a safe and accommodating environment to, again, feel  if you're in a mood where you can try one of your, maybe your foods that you're scared of and have an environment where you could feel supportive, that'll be great. But I think just having those people can make a world of a difference. And there are a lot of folks online who have ARFID who have been open about their own journeys of working with their families to try new foods to feel supported. So there's also communities online and probably locally as well where you can get connected with. 

Mya Thomas (host): I think it's really cool that there are interventions possible for this, like CBT, because I know for any sort of social, social communication training, we use FCT. And I think we've also used a bit of cognitive behavior therapy, but I think it's really cool that it can kind of encompass this as well. Especially now that we have established this is just as much a socially impacting feeding disorder as much as it is, impacting digestive health and things like that. And that being said, I think holiday time is the time when you combine the both, where there's, , a lot of socialization, you're talking to a lot of family members who are like “oh I held you when you were this small” And you’re really exchanging a lot of words with a ton of people, while also sharing food and establishing these memories with one another, which can be a fairly anxiety-inducing experience for someone who experiences either autism or ARFID, or both. And I think that's a lot to navigate through. I was wondering what you would recommend for parents who are helping their child navigate these settings where they're in the social environment already, they may be feeling some sort of anxiety, but then there are tons of food around where, but they don't really, love or gravitate towards any of the foods that are present in the setting. 

Rachel Rivera: Yeah, this is a really good question, especially this goes back to the point I was talking about, even though it's not an intervention, having people in your corner, above and beyond, any intervention is so important for support and accommodation…When we think about the anxiety around social situations for autistic folks, as well as the anxiety around food for people with ARFID, a lot of these food holidays or big social gatherings can induce a lot of anxiety around both, and both [of these] can come up. I think having parents or caregivers, I think the important thing is just being aware of that level of anxiety, and maybe it's not the time to push your child to try something new or take on one of the foods that they have an aversion to or are scared to try. I think it's okay to lean into safe foods at this time and just show your child that you support them and you want to accommodate them. I think there's a time and a place to challenge and to try to veer off of some of those safe foods and a holiday, Thanksgiving or any of the winter holidays, might not be that right time. And that's okay. I think just being attuned to are there certain situations in these environments where my kid might be becoming more anxious,  maybe if a family member is trying to give them certain foods and they're refusing or they're being questioned why, stepping in and being like “oh, no, it's okay.  we are going to try XYZ food” or “we're going to have XYZ food today.” And that's it. They don't need the cranberry sauce, if that's not their vibe. And that's okay. So I think just being both an advocate and a support and understanding that there will be a time and a place to try new things. And maybe it might not be this Thanksgiving, but maybe with time and support, it could be next Thanksgiving or the Thanksgiving after that we try the cranberry sauce. And also, maybe it's also okay that they never want to try it. And I think being just supportive in that is such a good way to, again, , start to decrease some of that anxiety in those situations, knowing that you have someone else who is attuned to how you're feeling. 

Mya Thomas (host) Yeah, absolutely. I think it's really important to just recognize that a lot of people that you may know are just picky eaters. I know picky eating is different from ARFID as we've established, but I don't think we walk around villainizing or chastising our friends who are picky as well, and we just allow them to gravitate to the foods that they desire, especially around holiday time. I think that's the very best time for there to just be choices and fun, and just establishing relationships with those around you rather than focusing on the food politics that may be going on and wondering “why don't they want to try this or why don't they want to even engage with their cultural foods? And  I want my child to love their cultural food.” Well, the holiday time may not be the time, but… as we said with maybe with some sort of intervention or practice, maybe next Thanksgiving or just in the future in their adulthood, they may open up to some of these foods, which would be really amazing. And lastly, I just saw a few posts on different groups on Facebook and different social media platforms centered around people documenting their own ARFID experience. These could either be people who were diagnosed with ARFID as a child and are now grown up and have an adult platform where they discuss it, or this could be parents of children with ARFID or ARFID and autism. And some of the parents expressed a lot of concerns about if they have family history of type two diabetes or predisposition for heart disease. And of course, that concern is very valuable, especially when you're thinking of your child's physical health. But on the other hand, there were just some who wanted to expose their child to different foods and alleviate that stress surrounding food with maybe experience, or just open them up and not try and limit their experience, or broaden their horizons when it comes to food. And these parents mentioned that eating for their child seems  either a total bore, a tedious chore, or just an overall unpleasant experience. And I was wondering if you believe that it truly matters if ARFID impacts people's eating habits if they end up getting their vital nutrients, even if it's without the variety in their diet. 

Rachel Rivera (host): Such a great point! And…this gets into this experience of how ARFID isn't a one size fits all diagnosis in the same way that we know Autism isn't. And I think when we're looking at people's individual experiences on social media, whether it's Facebook or TikTok or Instagram or online communities, it's going to feel different for each person and their family of how they all experience that person's ARFID and distress related issues. And so I think it's important to think about if they're getting their vital nutrients. I think if they still have a diagnosis of ARFID the question is:  are there other areas of their life that their eating is impacting? So again, getting back to that socio-emotional experience: is this person extremely anxious or distressed when presented with different foods? And would it be important to think about not just trying new foods in different environments or navigating safe foods, but will it be important to understand how to make this person feel more successful in different social eating environments and minimizing some of their anxiety or feeling left out in certain situations. And so I think it's important to tap these other areas of understanding ARFID about above and beyond just nutrition, which I think is oftentimes what we mentioned before, what's focused on first, and it is so important to think about: getting enough nutrition. But also again, targeting those other areas, I think just, and talking to that person themselves or or being attuned to that person's cues. If your child feels totally happy and they're getting enough nutrition, eating their same 10 safe foods, and they have not the greatest variety we'd want in the world, but they have variety, and they're feeling content at this time…Maybe we let it ride out for a few years and , then we don't push trying a bunch of new foods, but if we're still seeing that there's some distress in different situations, then again,  taking it on then and trying to push the boundaries a little bit more and seek extra help when it arises then. So I think, again, it's just being,  I mentioned before with parents and caregivers at  the Thanksgiving table, just  being that support and advocate and tuning in to understanding what the cues of your child are, whether it's that anxiety or that distress or whether they're feeling pretty cool about where they are right now. I think that's just important for everyone to kind of play detective a little bit and to keep tabs and checking in with healthcare providers, with your child, with each other, just to make sure that, again, we're not constantly pushing again,  trying new things, but we're also not necessarily just hanging back and saying , well, we'll just, we're good now. We just won't do anything. So I think it's just a balancing act. And I think that's the importance of kind of this response of care is feeling  it's ever evolving in response to how that child or that person with ARFID and autism is presenting at that time and how that might change [inaudible].

Mya Thomas (host): Yeah, I think it's really awesome that you mentioned it's a balancing act because, I've been reading  a lot more about , I guess, neurotypical views of autism and  how sometimes we don't recognize that we are the privileged community in comparison to people with autism in terms of , we get to speak about it and we get to , diagnose it and we also get to , treat it. Whereas , I think the neurotypical views the neurotypical view on it is , oh my gosh, they're restricting themselves. They're not experiencing all the different foods they can experience. But if there are people with autism who just see food as  a means to live, I eat just to sustain myself and that's it. Then maybe they don't have to have the biggest culinary  experiences ever where they don't need to try  the fruit and the cheese and the this and that. Whereas , there are a lot more colorful experiences in their life where they're, they might be super interested in something else, cars or  art or something else where food is just, I have to eat because I'm a h an. Whereas , some people may find worth in exploring different foods if they care about food. One of the kiddos I work with, he loves to bake and he's always baking either  a plain vanilla cake or  a plain chocolate cake. And his mom will sometimes be , do you wanna try something else? And she's not forceful in any way, but she's , I know you love to bake, maybe we can try baking something new. She's not  forcing the textured cherry custard or something down his throat, but  she'll offer something else as an option just to  give him the opportunity to broaden his horizons. But if not, then he can stick to baking the vanilla or the chocolate. And I think that's really important for us to recognize that as I guess, neurotypical people who also aren't in these people's families, it's not really our prerogative to really be that they're not getting the most out of their  food experience, because the most out of their food experience could just be feeling safe when eating food. And that might be what's truly important. And also I think the pediatrician may have more of a say than I do, but I think it's really important to just  allow a child or just  even an adult now with ARFID to rely on their doctor and their families in order to kind of, I guess, help them broaden their experience, unless it's become  fairly restrictive where it's impacting their nutrition, then that's where others can step in, in my opinion. And I will ask a last surprise question. Do you have any advice for parents of children with autism? Or, I know you talked about how this even impacts their adulthood, which is super important to recognize just because it's , it's not something that's outgrown. We were talking about selective eating, usually being outgrown by six years old. And do you have any  sort of advice for anyone who is a parent of someone with ARFID? 

Rachel Rivera: Yeah, I think my biggest advice is that, don't take on everything at once…eating experiences are so nuanced and that there's so many different things at play when we think about what it is for someone to be eating. There's so many biological influences, sensory influences, socio-emotional, there's so much that goes into eating that you can't climb the mountain in one day. And I think that's really important for both parents and caregivers to understand that they take things one step at a time. You're doing a great job. You don't have to do it all at once. And I think getting connected with supports who will help you, whether it's pediatricians or dieticians or nutritionists or therapists will help get there step-by-step. And also I think, again, understanding when we look at these nuanced eating experiences across the lifespan that what's going on right now might be different in a few years and then might change again in a few more years, and I think all of us, our food preferences and experiences change and I think, again, we might've all ourselves had difficulties with certain textures or at certain restaurants or had had a really bad experience where we choked one time. I think there's, I think understanding that what's going on right now might look different in five, 10, 15 years and understanding that there might be other important aspects to think about and look for whether it's again,  impacts on mental health or impacts on someone's social life or  I mentioned before,  are there impacts financially on someone's financial wellbeing if they have to go to the same grocery store to make sure that their foods look the same way or that meal planning might be more difficult if you're taking a lot of time to prepare it the same way. And culturally, how might it feel for families if their child doesn't  eat food from their culture? There's so much nuance and I think just understanding that it's not gonna all happen in one day and that's okay. And that as long as you, that the first step is just understanding that why your child might be selective to the level that might cause disruption or impairment in their wellbeing, I think is just the first step and understanding what ARFID might look  will help then again,  just get the ball rolling and then getting connected with people from there is really important. And I think it's a journey as all things are, but I think there are a lot of resources and there's more and more coming out about our understanding of ARFID and autism and how those two might intersect that I think, there's going to be more supports in the future and I think that's awesome.

Mya Thomas (host): Awesome, I love that piece of advice and I really am interested in your research. I think it's really with the times! I guess people don't understand that food can be such a charged thing? For me, I get to just eat every day. I have  one or two things that I don't  and I'm just , I never have to buy those because they're things that are not essential to my well being or my nutrients. I'll stay away from calamari and blueberries and call it a day? Some people still have foods that are even offered everywhere. They still find a bit of some lack of comfortability with it or  a food neophobia when it comes to new foods or , it's just  something that a lot of people can take for granted and see as , oh, it's normal because you just pick what people eat, what they will eat.  no one's going to go out of their way every single day and eat something that they don't . But for someone who does have ARFID, every day can seem, every offering that you get of a different food can seem very much  anxiety inducing. And I think that it's so important to focus on the fact that  food can be , I guess  experiential in a way. I don't even know if that's a word, but it's a very,  a, it can kind of make or break your experience with anything. , some people just will stay away from a food for the rest of their life or associate a place with a certain food, which can lead to any sort of either positive or negative feeling. And I think it's really important to just recognize all of these things and just give parents the tools and information to just work through it with their child, rather than just either viewing it as , oh, it's just childhood pickiness. And maybe even having a negative connotation with it because that is not necessarily something that has to be the case. So I really wanted to thank you so much for coming onto the podcast. I think this is a really interesting topic that I am not super well versed in. So you brought a lot of very amazing information to this. And I really hope that anyone who's watching found this very helpful. And, if you have any questions or comments, you can leave it either on the comment section of this podcast, or you can email theparentpartnertpp@gmail.com. That's theparentpartnertpp@gmail.com. Thank you so much for listening!

Source List:

Kozak, Agata, et al. “Avoidant/Restrictive Food Disorder (ARFID), Food Neophobia, Other Eating-Related Behaviours and Feeding Practices Among Children With Autism Spectrum Disorder and in Non-Clinical Sample: A Preliminary Study.” International Journal of Environmental Research and Public Health, vol. 20, no. 10, May 2023, p. 5822. https://doi.org/10.3390/ijerph20105822.

Stephanie Bethany. “Avoidant/Restrictive Food Intake Disorder | ARFID and Autism.” YouTube, 11 Nov. 2021, www.youtube.com/watch?v=adGThP_UEWc. 

Zickgraf, Hana F., and Jordan M. Ellis. “Initial Validation of the Nine Item Avoidant/Restrictive Food Intake Disorder Screen (NIAS): A Measure of Three Restrictive Eating Patterns.” Appetite, vol. 123, Dec. 2017, pp. 32–42. https://doi.org/10.1016/j.appet.2017.11.111.

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