Podcast Transcript

Episode 68: How Do You Treat ARFID? A Deep Dive with Jaclyn Macchione, MOT, OTR/L, Part 2

[Bouncy theme music plays.]

Sam: Hey, I’m Sam.

Ashley: Hi, I’m Ashley, and you’re listening to All Bodies. All Foods. presented by The Renfrew Center for Eating Disorders. We want to create a space for all bodies to come together authentically and purposefully to discuss various areas that impact us on a cultural and relational level.

Sam: We believe that all bodies and all foods are welcome. We would love for you to join us on this journey. Let’s learn together.

Hello and welcome back.  I’m Sam. I’m here with my co-host Ashley. This is All Bodies All Foods and we are doing part two all about treating ARFID with Jaclyn. Welcome back.

Jaclyn: Thank you for having me again. I’m so excited to cover some more information and to give some support to the viewers for sure. So I’m really excited.

Sam: Well, thank you so much. I know halfway through our part one with you, we realized pretty quickly we needed part two  because there’s so much to talk about, and ARFID is one of those lesser known eating disorders that it really doesn’t get the attention it deserves. So we’re going to give it some attention. We’re going to give it two episodes worth because it’s needed.  So we covered a lot in part one. Folks, if you’re listening in, if you want to go back, if you haven’t listened to part one yet, we talk all about the diagnostic criteria for ARFID, the subtypes,  who’s at risk, signs and symptoms. I mean, it was like, I think, Ashley, you called it a crash course in ARFID.

Ashley: It was indeed.

Sam: It really, really was. And so all about ARFID, if you’re just interested in learning about the diagnosis, and then also we talked about what sessions look like with you in residential treatment, what to expect, all that exposure work you do, all the progress that you can make in  four or five weeks, an amazing amount of progress in such a small amount of time. But for this episode, I thought we can dive into a little more about treating ARFID within a treatment team. A little bit more about what exactly are the differences between getting treated at a residential center compared to an outpatient setting, because you work at both. You work with people in that 24-7 support residential setting, but also you have an outpatient practice. So you might be people wondering what’s the difference? What would benefit me or my child? And then all about the family. How can families and partners support their loved one? We’re going to dive all into that. Yeah, hopefully help people out there who are wondering what can I do differently to support my loved one?

Jaclyn: Sure.

Sam: Yeah, so let’s start with the levels of care. You are our expert, our ARFID expert at Spring Lane at our residential program in Philadelphia.  And you have this private practice where you work with patients. What are some signs that someone might benefit from a residential treatment program compared to an outpatient setting? Like how do they differ?

Jaclyn: Good question. Yeah, good question. I have had the privilege of working in the residential realm, but then also training a lot of our non-residential sites or our outpatient sites in the Renfrew system.  And then, yes, I also have a outpatient private practice too. I have been able to treat ARFID at all levels of care.

Sam: At all levels. And for our audience, that’s residential, it’s partial hospitalization program, it’s intensive outpatient, and the outpatient level.

Jaclyn: Correct. Yep.  Back in the day, I did, when I lived in Nashville, when I moved to Nashville for a little bit, I  was able to work at our non-res, our PHP site, which was awesome.

Ashley: Jaclyn, I didn’t know you worked there.  That’s where I started.

Jaclyn: I did. I did work there. Yes.  I worked there for a short amount of time only because I just had had my second child.  So I was kind of on maternity leave at that time. But yeah, I obviously I love Tennessee and I love that site. And it really gave me a lot of insight into what happens after a patient leaves residential. What happens afterwards? And then, you know, then I opened up my private practice about six, seven years ago and I specialize in ARFID, obviously other eating disorders as well, but primarily ARFID. So again, I’ve had that privilege of seeing a patient sometimes all the way through.

Ashley: That’s cool.

Jaclyn: So starting at res, and then working their way down to PHP, working their way to IOP, and then seeing me at my outpatient practice at the same time. So it’s amazing because for so many years of working at Renfrew before ARFID came around, I primarily just worked at a res site and then boom, I didn’t know what happened afterwards. I would see them at the reunion once a year, which is always wonderful, but I never really got to see what tools they were utilizing in their everyday life that we learned and talked about in res.

Sam: And then the progress they continue to make. You know, we don’t get to see often, but that must be so amazing to see.

Jaclyn: It’s amazing.

Sam: The progress the whole way through.

Jaclyn:  The whole way through. And what’s interesting too, I notice is when somebody is in residential, then they step down to a PHP where they are living at home. So I get to see them in their natural environment and how different they present.  Much more relaxed, you know?  It’s on a different level. I mean, treating outpatient versus Res is very different. So you do get to see them in their natural environment and you get closer with the family as well, which is really, and their loved ones when you’re treating outpatient. But going back to your question of the difference, how do you know if a patient needs residential versus other levels of care for ARFID?  So what comes to mind when I think about this is when I’ve had a patient at my practice who is a new patient, has come to my practice for an assessment, and I notice that they, what’s another great reason about working here is I know, very quickly what level of care is going to support them best, because I know all the levels of care. So I think about the medical piece of this, how are their labs looking?  So I’m looking at their labs, I’m talking to their PCP or their pediatrician, and their weight, obviously, that we have to consider their weight at the time and how much nutrition they’re actually getting in, their intaking. So I think about that. I also think about what the family is able to provide for them. Like, are they able to really support them at an outpatient level of care or do they really require the support that residential can give them? Right? I also look at, you know, how many sessions do they need a week with me?  You know, residential, get three a week.  Outpatient, they get one a week. So, yeah, can I really support them and their work  and,  you know, when I’m seeing them one day a week versus three times a day for sometimes four days a week. I mean, four times a week, three to four times a week. So, for about 30 minutes to an hour each session. So, I consider all of that, you know, and also, obviously, what their responsibilities are in the outside world, you know, are they working? Are they at school?  Are they able to take time away to go to residential? So there’s so much to consider when you’re having that conversation with the family and the patient about possibly needing a higher level of care. So there’s a lot to consider.  And, you know, sometimes it takes us saying, we’re going to try this out. Let’s see how you respond to the exposure therapy.  And I’ve been doing this a long time, so I can quickly realize this is going to take a while for them to start taking risks with me.  This might take too long.  So residential would be better for them because naturalistically they are taking risks here in residential every time they go into that dining room.  They’re taking risks-food risk.  they can, they get more acclimated to it when they’re in residential than you do outpatient. So you have to decide really how are they responding to the treatment and the interventions. And if they’re not really responding well to them outpatient, it’s a pretty big sign that they need a higher level of care and more support.

Sam: Right. So many factors go into these assessments. And just a reminder to our audience, if for any providers out there or family members, Renfrew will do an assessment  and does, you know, help you not only figure out what the diagnosis is, but what level of care best matches what you need  based on everything you said, Jaclyn, like medical issues, are there psychological issues on top of the ARFID? Oftentimes there are eating disorders so rarely travel alone. Are there issues with you getting support? Is your family really able to eat meals with you and support you every single day, every single meal? And it’s not always realistic, but getting the support of the community can be so helpful in residential too. Like other people who have ARFID. I’m sure people maybe come into residential and it might be the first time in their lives they’re ever meeting someone else who also has ARFID.

Jaclyn: Yeah, that does. Yeah. And I also do consider, you I know the part when I talk about our, unified treatment model a lot and the tools I use from there in ARFID treatment and the emotional piece of all of this, you know, it’s not just about sensory issues, and you know, there’s a lot of fear involved and anxiety. And I consider that too, you know, am I going to be able to provide enough emotional support to them in the outpatient world as opposed to coming here and getting all those wonderful tools that they get in residential. And like you said, Sam, connecting, oh my gosh, connecting with other people who are going through the same issues they are. That’s a huge factor too, I consider when we talk about what level of care is appropriate for them. And sometimes I just say, listen, how about we give Renfrew a call, 1-800-RENFREW, let’s give them a call and let’s get assessed. Let’s see. Because sometimes they need to hear somebody else say, this the level of care you need. I really do push for that, really do because  it’s one thing for me to be telling them and the family. It’s a whole other ball game to have Renfrew telling them what level of care is appropriate.

Ashley: Yeah.

Sam: Exactly.

Ashley: So Jaclyn, thinking about residential and the work that you do there, I’m curious about the various like experiential groups that are done at the residential level. And is there anything, could you share with us what groups are done and then what groups really support our folks that we work with, with ARFID?

Jaclyn: With ARFID, yeah.  So one, you know, what I want to say about that is,  you know, we do take this team approach. When I have a patient who I’m going to see with ARFID, you know, we do take into consideration what groups are suitable for them.  If they are formally diagnosed with ARFID,  they don’t have body image issues.  So going to a body image group isn’t the best idea for them all the time. So I work with the therapist because the therapist works with the patient to determine what groups they should be going to throughout the week. So I put my two cents in a lot of times and say, based on my assessment, I don’t think this person is appropriate for this group. I think they benefit more from this group.  What comes to mind is, you know, when I do, we have an ARFID group. Like I think I mentioned that in part one, we actually have an ARFID group where  we are working  together. And sometimes we, you know, I’m teaching them how to cook some of the foods that we are  trying.  So what comes to mind is there’s these Kodak cups that I’m a huge fan of. They really push the protein. Texturally, they’re very easy.  And they just require water, stirring, and putting them in the microwave. That’s it. Making sure that the foods that we’re trying really make sense to their life outside of here. Are they really realistically going to be cooking these foods?  So I want to make sure that they’re prepared for going home, you know? So they will be in the kitchen with me sometimes cooking and preparing things. I’ll have them do maybe putting the water in the cups and stirring and I’ll bring it to the microwave.  So those, you know, that’s really helpful. We do them that during the ARFID Party a lot of times. I think about too, like the T stage groups with the unified treatment model, the T, when they get to T stage.

Sam: Our transformation groups?

Jaclyn: Yeah, transformation groups.  And I’m lucky again to be running some of those groups again.  So that’s all exposure based. So what’s really cool about that too though is that, you know, my ARFID patients get to do the exposures very early on in their treatment, which is different from the other patients, but by the time they get to the T stage groups, they’re already experts in exposure  work. But those groups are so helpful because you can go to the grocery store with your therapist. You can go on an outing. You’re walking down an aisle that typically you avoid, maybe due to texture reasons or if it’s a medical-based subtype patient, they’re afraid of having allergic reaction to peanuts. So maybe they avoid the peanut  butter aisle.  So we do offer these experiential opportunities for them, these groups, to get them prepared for home.  My patients really enjoy the art groups for sure. I  mean, they love the art groups  because our art therapist does a wonderful job of incorporating sensory work into the art therapy groups for my patients.

Sam: That is really cool.

Jaclyn: Which is really great. So, so him and I, Kyle and I will talk about, you know, sometimes if we’re sharing a patient and they’re working on their, they have this subtype, the sensory based subtype of ARFID, I know that they’re having a hard time with tactile aversions, touching things. Kyle can provide  some of those tools and some like paint and clay and all of that, so they can continue working on building their sensory tolerance in these other groups too.

Sam: That’s incredible. 

Ashley: That really is. And it points out that sometimes it’s not necessarily about the intervention, but it’s the process of the intervention, right? It’s just like it’s them getting familiar with the texture and the feel of the different clay or the pastels.  I feel like when I’ve done some creative arts group, pastels can bring up a lot of emotions for people because they can be messy and kind of get everywhere. So that’s really cool.

Jaclyn: Yeah, the connection, I think I might have mentioned this in part one, too, of the connection of  their tactile experience  of, you know, being able to touch something or have some sensory stimuli on their body,  like clothing, for example, you know, where the kind of clothing, people may have aversions to that. But when you think about that and you’re like, okay, well, that means that there’s aversions of something touching one’s skin, certain textures touching one’s skin. Well, the same applies to inside your mouth. You have skin in your mouth. So it makes sense that a lot of those folks that struggle with tactile aversions also struggle with texture intolerances.  So we do see that strong connection.

Sam: That makes so much sense when you explain it that way.  Yeah.  It’s like we have skin all over. So of course you would be experiencing some hypersensitivities.  Jaclyn, you mentioned the team approach, which I think is so important to talk about eating disorder care.  The standard really, no matter what eating disorder it is, we take a multidisciplinary approach. And the same is true when we talk about ARFID, so I was hoping you could say a little bit more about how do you work with the rest of the team when you’re supporting a patient?

Jaclyn: Yeah, yeah. So I love going to team meetings, of course, treatment team meetings where we discuss the patient in depth.  And each member of the team is there to be able to talk about their goals for the patient, how the patient’s progressing.  I really love going. I love bringing an OT perspective to the treatment team.  So, you know, in the treatment team, it’s funny because they all get very quiet when I start talking, because it’s some material and some education that they have an experience maybe in their schooling or in their clinical life. So being able to talk about the sensory impact the patient has with eating is really important and be able to describe what they’re experiencing.  Also oral motor work always is fascinating, I feel like, to the treatment theme of, you know, talking about chewing and how chewing and swallowing really affects one’s experience with food and eating.  And then the other thing that comes to mind is just, I really take a developmental approach when it comes to eating. And I think about the skills needed to eat and there’s 32 steps to eating, like 32 required steps to eating.

Sam: What are some of them? That sounds like a lot. I would have guessed like three to five.

Jaclyn: Yeah. I mean, there’s, know, the oral motor work where, and the sensory work too, the sensory motor work of,  you know, being for your brain to be able to processing what you’re putting in your mouth, you know, and then being able to figure out what the next step is. So there’s a lot of tongue movement, there’s tongue lateralization that needs to happen from moving food from one side of your mouth to the other. There’s patients that come in here that had never developed that skill. So they’re only chewing on one side of their mouth. And then that a lot of times dental issues start happening. Unfortunately, when you are only chewing on one side of your mouth. 

Sam: Like overuse? 

Jaclyn: Overuse, yes.

Sam: Oh, I see.

Jaclyn: Where your teeth are worn down, there’s a lot of cavities on that side.  The other thing is it definitely impacts pacing at a meal. So if you’re only chewing on one side of your mouth, you’re only picking up saliva from one gland on the one side of your mouth and not the other gland. So you’re chewing double the amount of time if you’re only taking saliva from one side of your mouth.

Sam:  Yeah. I never even thought of that.

Jaclyn: Yeah, it’s fascinating.  Of course, swallowing, there’s a lot of skill that needs to be done with swallowing. So what happens is if somebody didn’t develop one of the skills, I need to one, notice  and assess that and also come up with a treatment plan for that. So that’s incorporated into the ARFID work.  Sometimes the patient has no idea that they  didn’t develop this skill until I bring it to their attention.

Ashley: And they could go for years.  I mean, their whole lives without realizing it.

Jaclyn: Yeah, and like, their family or their friends or loved ones, whoever is like, oh my gosh, why does it take you forever to eat? I get that a lot, I hear the patients say that people comment on how slow they are to eat. And then once I tell them, oh my goodness, like there’s an oral motor issue going on, they’re like, wait, oh my gosh, it’s so validating. It makes sense to them now.  And the good news is it can be treated.  It can be treated. So going back to the treatment team,  just like you guys are like, oh my gosh, I haven’t thought about that, same reaction I get from the treatment team. You know, it just gives the treatment team a better understanding of the person as a whole.  Because without these assessments with what I’m doing, no one’s going to notice that, you know, no one’s trained the therapist, the dietitian, no one’s trained in this oral motor work.  So, you know, it’s really fascinating and it just provides so much validation to the patient. It really does. Once you give them an answer of what is going on and why they’ve struggled for so long. It’s like a weight is lifted off of their shoulders.

Sam: Right. It’s like they get answers to questions they didn’t even know they had.

Ashley: Yeah. This is really making me curious about like, have you seen a lot of misdiagnosis then in the past as far as ARFID is concerned?

Jaclyn: Yeah, lot. Yeah. I’m seeing it.  It’s hard because you want clinicians, you want pediatricians, you want doctors to be able to diagnose this and all of that. But I see what’s happening now is there’s just surface level questions being asked to these patients. So for example, you know, are you a picky eater? Oh my gosh, yes, I’ve been a picky eater my whole life. Oh, okay. Do you struggle with body image issues? No. Okay. It’s ARFID. It’s ARFID. You know, I’m diagnosing them with ARFID. You know, like does this interfere with your psychosocial functioning? Yes. Okay. ARFID. And then they, you know, and then they get here and I’m like, hmm, you know, I’m asking the deeper, I’m digging deeper. I’m asking the right questions. I don’t want just the surface level answers. I really want to get to the root of this and what is impacting their eating. Could be many things impacting their eating. You know, sometimes we realize this is somebody with OCD. They’re picky because of their OCD. So it’s important to really get down to the root of it and be able to ask the right questions and know what to ask.

Sam: Right.

Ashley: So I wouldn’t want us, you know, as a therapist to like overstep here and take on your role because you’ve obviously been trained in this as an OT.  And would there then be like helpful questions that like in addition to just the, you know, like the simple questions, not that they’re simple, but that you mentioned, would there be some more, some additional questions that we could ask that would be helpful?

Jaclyn: I would say it’s just, it’s really being curious and there’s no stupid question. You know, like as a clinician, I think sometimes we think like we should know the answer to that. Like, why would I even ask that question? That sounds stupid of me to ask it or like, I don’t know. Like, no, like be curious. Like if someone’s saying they’re having a hard time with their chewing, okay. Like even if you don’t know what to do with their answer. A lot of times I hear clinicians say like, well, if I ask the question and then they give me this answer that they’re having a hard time with chewing, I don’t know what to do with that, Jaclyn. Like so sometimes it’s not asked, you know? So it’s having confidence that ask the questions and if you don’t know what to do with it, that’s okay. It is okay. Just be very curious, you know, tell me about your chewing, you know,  like take me through, you know, say you’re, you’re chewing, um, uh, chicken, like grilled chicken, you know, take, what is that like for you? Like, tell me what’s happening in your mouth.  You know, if, if, if these red flags are popping up where you think, Oh my goodness, there’s something else going on here. You know, that’s where you would point them, you know, consult with, if you’re in the Renfrew system, I mean, the outpatient sites call me. The PHPs call me all the time. Jaclyn, I have this patient. Can I just pick your brain for a minute?  So use your resources. But it’s really about digging deeper, and when, I tell the dietitians here all the time, our new dietitians, when they’re  learning about ARFID treatment and  they come and they watch me treat. After a while, I say to them, like, tell me what your gut is telling you about this patient. What is the feeling?  Does it feel like ARFID? Or do you think something else is going on, as well? So it really takes a lot of digging on our part and asking a lot of questions. I always tell the patients, I’m so sorry to be asking you all these questions, but I want to figure this out with you.  So we work as a team. But yeah, I would just say to be really curious that if, and if you, even if you don’t know what to do with the information right then and there, still ask, still, you know, because they want to get help, you know, they’re more than willing to answer the questions. But yeah, if something just doesn’t sound right to you or, you know, you’re kind of like, Ooh, that sounds a little different than what I’m used to seeing in our anorexic patients or patients with other eating disorders, you know, don’t be afraid to keep asking questions and then, you know, go to the, go use one of your resources to  get some more answers or some support, you know, from a supervisor or from, you know, I always tell everyone, just give me a call.  Pick my brain. Let’s talk it out. I would say, let’s talk it out. Let’s talk it out.

Sam: I’m just thinking to myself, you know, for certain patients, if you’re only treating ARFID sort of with like exposure therapy and that sort of thing, but you’re missing all of the oral motor stuff that could really be interfering also, it’s almost like you’re only doing half.

Jaclyn: Half the work.

Sam: Half the work.

Jaclyn: I always say that you’re only doing half the work.  And you know, that’s why I say it’s so important, you know, when somebody is looking for somebody to help them with ARFID, making sure that you go to somebody who can treat it all. You know, like it’s good to have a team around you. I always say it’s so, I mean, outpatient, I tell the patients you really need a therapist, you need a dietitian, you have an OT,  but making sure that there’s somebody there that can do all the work and understands all the eating disorders. Cause I, you know, there’s a big majority of patients that come here that struggle with anorexia and ARFID. So you need to be very careful because you don’t want to reinforce the other eating disorder with what you’re telling them about ARFID. You have to be able to treat them both at the same time.

Sam: Absolutely.

Jaclyn: So making sure when you’re looking for a provider, you’re asking the questions of does the provider treat oral motor issues? If I have an oral motor issue, you know, can I be treated by this provider? Do they have experience in other eating disorders as well?  Can they do the emotional work as well? So I always tell my outpatient patients, it’s not just about building sensory tolerance here, it’s about doing the emotional work that goes along with it. And you have to be able to address both. Or again, going back to what Sam says, you know, you’re only getting half the work.

Sam: That’s such a good point.

Ashley: The emotional and the sensory. Is there, I don’t know, I know you said no question is a bad question. Are there other diagnoses that you see that co-occur frequently with ARFID? I know you mentioned OCD earlier.

Jaclyn: Yeah, OCD, ADHD, I mean, we talked about the 4 As last time.

Sam: Oh, the 4 As. That’s in part one.

Jaclyn: But, you know, ADHD, I see co-occurring a lot. mean, a lot.  Autism, I’d say about 50 to 60 % of my patients have an autism diagnosis.  Anorexia, like I see that happening later on in development, you know, where ARFID was, they struggled with ARFID from birth and then, you know, they get into their teen years maybe, and they, you know,  they end up having anorexia as well. So they’re having two of these eating disorders and a lot of times they’re very opposite of each other. And it’s a war, you know, they describe it as this big war going on between the two where it’s very easy to just say, forget it, I’m not doing it, I’m not eating any of it because like I can’t eat this because of this and I can’t eat this because of this. You know what I mean? It’s like, you know, again, going to providers that understand both, you know. So I see anorexia, sometimes bulimia, binge eating as well is something I see  a lot in the pediatric population where sensory wise, the only textures that they can tolerate is maybe carbohydrates, you know, one to two textured foods.  And then they aren’t eating other foods, you know, so the only foods they’re eating are carbohydrates. So sometimes they just get stuck on one food group and then they end up overeating one food group because they’re not eating any other food groups.

Sam: Getting the variety. 

Jaclyn: Sometimes that occurs.

Sam: And then anxiety, think, was that an A?

Jaclyn: Oh, anxiety. Yeah. mean, always anxiety. Always anxiety. I get a patient that’s like, no, I have no anxiety trying new foods, because if they didn’t have anxiety trying new foods, they’d be trying new foods, know? Right. Of course, helping them with their anxiety.

Sam:  Well, and also malnourishment plays a role.  And so I always say the malnourished brain is an anxious brain. The malnourished brain is a depressed brain.  I imagine, do you see depression also?

Jaclyn: Yes, I do. Especially in my teenagers, I do, because I think ARFID affects them socially so much, so much, where they really isolate themselves. Depression and isolation go together a lot of the time. So where they aren’t hanging out with their friends, they aren’t attending events anymore, birthday parties, and that really takes a toll on them. So I see a lot of anxiety and depression, especially in our teenage population.

Sam: Yeah, it’s so hard.

Jaclyn: That’s where people are noticing, you know, like, I think I talked about in part one where I have a big, in my private practice, I have a big group of kids that are like 10, 11, 12, 13 years old, a big group of them. And, you know, I asked the parents, why now? You know, why? Just out of curiosity, you know, why did you seek help now? And they said it was too difficult to hide from their friends.  Their friends are noticing in the cafeteria, why do you eat the same thing all the time? Or they offer them something, “hey, try this”. And the kid, “no, I can’t do that.” So  then the friends start asking more questions where they’re expected to go to school events where they don’t know what the menu is.  So they are so nervous about going, like the food piece of it that they decline the imitations.  So they’re not showing up.  And, you know, their parents said, “we can’t do this anymore. We can’t feed them before they go to birthday parties anymore. We can’t, the excuses are running out.”

Sam:  Yeah. Yeah. It’s interfering with their happiness, their social life. Sure. Makes a lot of sense.  I know I’m looking at the time and really I’m hoping that we can talk about families. What are some of the ways in your experience where families maybe try to help? Maybe we can normalize some of the ways families respond, but also how they can also, you know, support a little more effectively.

Jaclyn: Yeah. I mean, what I want to say about families is like, one, there is help out there. I think a lot of times they think we’re stuck. Like, there’s no one that can help us.  But there is absolute help out there. And I know for a long time, they might’ve been living with this for so long, trying to help their child or their loved one and didn’t know where to go or like maybe they’re telling the pediatrician, but the pediatrician isn’t taking them seriously of how severe their picky eating is. You know, we keep hearing they’ll grow out of it. I mean, I think the pediatricians say that often and the doctors, you know, and I’m seeing a shift, thank goodness,  seeing a shift where they’re saying, wait a minute,  talk to me more about the picky eating. Like how picky are we? Which is wonderful.  So, and the other thing I want to say to the parents is like, this is not your fault either. I think a lot of times the parents blame themselves  of, “did I do this to my child?  Was there something I could have done differently?” And most of the time, no, there’s nothing you could have done differently, you know, or, “oh my gosh, Jaclyn, I think I’ve made it worse. You know, I think I’ve really made it worse.” And, you know, I’m a parent. I get it. I have a son who’s a picky eater. I get it. And you want to just help and you want to do the best that you can. But that’s where professionals need to step in and give you as a family support. I’ll tell them, “listen, guys, like you’re on break now, let me do the work. Like you’re done, you’re on break, like let me do it.” They’re like, “what?” And I said,” that’s it.” Like I always give my patients homework. They always have homework when they come see me, but it’s not hard homework, it’s fun homework. But that’s where the parents, the families can support is the homework that I give them, which may be for them to, you know, pick up a type of yogurt that we tried in session and they really enjoyed it. So the homework would be for mom or dad or whoever to purchase that yogurt and try it at home. That’s where you can support them. So yes, I tell them they are on break. It is my turn.  Let me do the hard work.  And again, it’s not their fault. This is not their fault. We’ve learned that the sensory-based patient is born with it.  They’re born with their sensory system, just not all organized.  And again, not to blame themselves.

Sam: I think that’s so important. No matter what eating disorder there is, I think the tendency is sometimes like, who do I blame? Is it their fault? Is it my fault? Is it, you know?

Jaclyn:  Is it the doctor’s fault? Is it, you know, oh, is it because I’m a picky eater? I get that a lot. “Jaclyn, like, you know, is my, is my child like this because I’m a picky eater? Like, did I do this?” And, you know, I say, I don’t know, you know, like at the end of the day, like we can’t spend a lot of time worrying so much about what should have been done, what could have been done. The focus is on what we’re doing right now and what we want for their future and what we’re working towards and how they can support them now. So it’s ever too late to support now.

Sam: Yes, that’s such good guidance. I’m just curious, Jaclyn, are there any like quick do’s and don’ts that you have to teach parents or you like to teach parents in the beginning?

Jaclyn: Yep. Yeah. So just like any eating disorder, I mean, working here for years, I’ve always told the parents like, and the loved ones and the patients do not label food “good” or “bad.” Food is food. You know, there’s not good foods and there’s not bad foods.  Food is food. It’s neutral. You know, so I do a lot of times have to educate the families on that because they have, you know, mentioned, you know, my office, I’ll hear them say the J word and my junk and my, you know, skin crawls, the word junk,

Sam: The junk food.

Jaclyn: Because, you know, what happens with ARFID patients is like that junk food is their safe food is something that they are eating to for them to survive. Like that’s all they can do. So by labeling it something negative, then it’s easily internalized for them to feel that they’re doing something wrong.

Sam: Yeah, like am I bad because I’m eating this? Honestly, it’s of the only things I can eat.

Jaclyn: Only thing they can eat, right? So educating them on all foods, all foods fit, I always say. And, you know, making sure that when they do food exposures, like, you know, I tell them you’re on break, do not do a thing with them until I tell you to do anything with them. You’re there, like you’re there to support them with the work. But when it’s time for the parents to start doing, and by the way, a lot of the times the parents are in session with me. So I’m modeling how I’m approaching the exposure work and what language I’m using, which is so important. So I’m also treating the parents along with the child, as well. So we’re in this together. So just reminding them that setting up a safe environment for them to try foods is a do. Make sure that you’re making it fun. Like I always say, there’s one rule and I tell the patients here,  I tell the patients outside of here that there’s one rule and that’s to have fun while we do this.  You take the pressure off somebody, they’re more willing to do it. Instead of them, a lot of our patients are people pleasers.  So I don’t put any expectations on them and I say, need you to try this, but you do it any way you want. This is like on you, you decide. One of the don’ts to that is  I would not have the kids trying food during meal times. You know, if they’re not ready to try foods during meal times, I like to keep the exposure work separate in the beginning.  So it might look like, you know, they can always ask like during dinnertime, “oh, you know, I just cooked  this, you know, I baked this new dessert. You know, would you like to try it?” If the answer is no, okay. Okay, not a problem. always, you know, you can present them with the food, but you listen to their no’s because they may not be ready for it yet.  So I like to make the exposure work at home, something separate, something fun. And if they can, something the whole family can do, you know, so we’re not sitting there saying, “okay, we’re going to sit down and do exposure work now. Okay, take it, you know, here’s your fork here.”

Sam: Spotlights on you.

Jaclyn: Spotlights on you. We’re all watching you.  But make it like a family event. For example, I like to do Chobani flips with the patients.  And so they’re yogurt and then they have these fun little toppings that you can flip into your yogurt.  So I do this during one of our ARFID parties too, where I’ll purchase a bunch of Chobani flips. So there’s different kinds of yogurts, different kinds of toppings. And I treat it like an ice cream bar. You know, so some of the, I’ll tell the families, get a few of these, open them up, have everybody, you know, taste the toppings, taste the yogurt separately,  make their own yogurt sundae, you know, make your own pizza, have make your own pizza night  where the goal is for maybe the patient to try one of, like a topping that they typically don’t eat on their pizza.  But again, making it really fun, not having a lot of expectations on them and taking away the pressure for sure. 

Ashley: Those are some really, those really are fun strategies.  When you said make it fun, I’m like, how do we do that?

Sam: I know.  And I love that you just call it a party for how you label it really matters. 

Jaclyn: Yeah, it’s really funny when we have the ARFID parties in residential, we’re in our dining room and there’s a glass door so people walking by can kind of see what’s going on in the party. You know, we’re all laughing. We’re all having a good time. There’s 30 foods out on the table and the other patients who don’t have ARFID, you know, walk by and think, what are they doing in there? You know, we’re having a good time. “Hey, what group’s that? I think I might have ARFID.”  But again, really trying to make it fun. If really my biggest advice to clinicians to families is, you know, taking the pressure off really makes a world of a difference. And I think when you think about parents trying to get children to try food, I’m guilty of this, that you say, “okay, here, why don’t you try this?” You know, and everyone’s looking at the person, and they’re like, “no, I don’t want to try it.” And they’re like, well, “why not?” Like, “I just don’t want to try it.” Well, “how do you know you don’t like it”, they’re like, “I don’t think I’m going to like it.” “Well, how do you know you’re not going to like it?” Like the, they’re being interrogated a lot.  And of course, there’s a lot of pressure there. They’re not going to want to try that. Like, they’re not going to be motivated to try it.  So taking that fun approach makes a world of difference. It really does.

Ashley: That’s awesome. OK, Jaclyn, we really are running out of time. But maybe one more thing.  You label for us maybe a place that our clinicians, those that are providers that are listening here, can get more resources on ARFID or learn more about ARFID. Yeah, I mean, I always go to NEDA’s website, you know, they always have up to date  research for sure. And this is going to sound like, I don’t know, I mean, I say this and I worry about saying this sometimes of social media, like going to the right clinicians on TikTok or social media, because there’s a lot of wonderful educators out there and therapists with experience that can walk a parent through what an exposure looks like and really just educate them.  Again, you need to be careful with all social media.  But I’m noticing a lot of wonderful, helpful information is popping up  on those  platforms.  Of course, there’s the Academy of Eating Disorders is one, NEDA, Renfrew, of course, go to our website. We provide information on there.  But research, there’s a lot more research coming out now. I always say like after 10 years that a diagnosis is out, you start to see more research. All the 10-year studies, the five-year studies are now published. So, you know, taking a look at the latest research is always, you know, helpful to look at, especially with the clinicians, you know, seeing how ARFID’s being treated, the difference between how ARFID’s being treated now versus when it first came out. You know? But yeah, and then also your medical team, you know, your pediatricians, your family doctors, making sure that you are being very clear on, you know, your child’s picky eating or your picky eating. Because again, when you hear the word picky eating, you know, it doesn’t sound that severe.  And, you know, there’s a difference. And I think I mentioned this in part one, that you can grow out of picky eating, but you don’t grow out of ARFID.  You know, you need treatment with ARFID. You need help and support with ARFID.  So when you’re describing to a doctor that my child’s picky, you know, then they’re like, “okay, they’re going to grow out of it.”  But being very clear with the doctor of, “okay, I did some research. I looked this diagnosis up. It’s called ARFID.  You know, can you look over the criteria with me right now? Because I have a feeling my child may be experiencing this.”  So doing your research and really advocating for yourself and your child is so important.  So important.

Sam: That’s why we wanted to spread more awareness about this so people can advocate and have the terminology to bring to their doctor or you know, bring to their child’s therapist who may be trained in eating disorders to make sure their child can get what they need. Jaclyn, I know we’re out of time. If there’s one thing you’d like parents and partners or any kind of support person to take away from this episode, what would you want that to be?

Jaclyn: You know, I actually asked one of my patients over at my practice this question. You know, if you were to talk to the families and you were to talk to patients, what would you say? His response is, it is always so much scarier in your head than what is actually done during the work. The work is easier than what you’ve made up in your mind.  It’s so much easier. And I think about that a lot, that  sometimes you just need to take the risk and ask for help, ask for treatment. And again, like I’m bringing the fun word up again, but it’s hard work, but it actually is so rewarding and it actually can be fun, believe it or not.  You know, so yes, that sometimes fear is just really standing in the way of something great.

Ashley: Yeah.  Thank you so much, Jaclyn. We really appreciate you being here really for both parts. Thanks for being willing to come back.

Jaclyn: Oh, this was wonderful. And I hope people who are listening, you know, maybe this will help them reach out and get help. But there is help out there.

Ashley: Awesome. And yes, and thank you so much to all of our listeners. We really value you being here with us. Thanks so much.

Ashley: Thank you for listening with us today on All Bodies, All Foods, presented by the Renfrew Center for Eating Disorders. 

Sam: We’re looking forward to you joining us next time as we continue these conversations.

Ashley: Thank you for listening with us today on All Bodies. All Foods. presented by the Renfrew Center for Eating Disorders.

Sam: We’re looking forward to you joining us next time as we continue these conversations.

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