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S4E153: OCRD Series IV, Part III: ARFID: The One Diagnosis That Could Change How You See "Picky Eating" Forever
01:34:30
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- [00:00]
A
Want a recipe for success? Step 1 Visit ocdfamilypodcast.com courses Step 2 Click on my link to browse OCD Training School's amazing course catalog. Step three Enroll. And Step four Enjoy learning with no added cost to you. You can support the OCD family community while grabbing some continuing education or learning how to bridge yourself to self help strategies for OCD. Again, that's ocdfamilypodcast.com courses and use my special link to sign up today. Does your loved one struggle with extreme picky eating? Will they outgrow it? Hmm? Is this just attention seeking behavior or an effort to control or manipulate? Do you always have to prepare a separate meal just for them because they won't eat anything else and you've tried? Will they eventually get hungry enough to eat what you made? Are mealtimes or even looking at your loved ones stressful at this point because you're worried? Have their growth charts been pointed out as a concern by their doctor? Have they stopped growing menstruating? If you've asked yourself one or more of these questions, you're in the right place. Because today we're diving into a lesser understood but incredibly important topic, avoidant Restrictive food intake Disorder or arfid. I'm Nicole Morris, licensed marriage and family therapist and mental health correspondent and let me be the first to say welcome to the family. The OCD family that is. I am here to create a community of support for family members, spouses, partners, parents, adult children as there may be adult words and chosen family of OCD sufferers and their community. I've had over 22 years of experience in the mental health field, but please note that this information does not qualify or substitute as a diagnostic evaluation, therapy or treatment and it is presented on an as is basis. Please follow up with a qualified mental health provider in your area regarding concerns for yourself or loved ones. Thank you for joining us today. Now let's get started. Okay fam. Welcome back or welcome to any newer family joining and a happy Wicked for Good release day here in the States. Patrick and I already have tickets for tonight and it's crazy to think Thanksgiving is now less than a week away if you're listening to this hot off the press. Also late Thanksgiving this year, which means the holiday season is all crunched together, no pun intended for today's topic. And hey, the holidays bring up a lot for a lot of people, especially for people who are distressed and a mess when it comes to food eating, feared consequences and the like. And so it felt appropriate to Feature ARFID for part three of my OCRD series that's short for Obsessive Compulsive Related Disorders. Now, ARFID is officially classified as a feeding and eating disorder, not an ocrd. But it often co occurs with ocd, especially in individuals who experience sensory sensitivities, contamination fears, or intense fears around choking or vomiting. Also known to the fam here as emetophobia. So while it's not the same diagnostic category, it can look and feel a lot like ocd. And many clinicians working in OCD care will encounter arfid. And I have a pretty good theory of why that is family because per the research of Sanchez, Cerizo et al In 2023, the most common co occurring conditions with ARFID include autism, anxiety disorder, ADHD and OCD. And for the return fam that may have been around in season one, when I talked with OCD and eating disorder specialist Dr. Jenna DeLassi, we learned that a malnourished brain mimics obsess of compulsive symptoms. Unlike ocd, when the root cause is malnourishment, we then see a decrease, if not extinction, from these symptoms once nourishment is restored. But it's one of the reasons that many different eating disorder cases might show up on our therapy couch, not to mention the intense CO occurrence where it may be both. And so with that basis of understanding, let's zoom in and learn a bit more about what ARFID is. To do this, I'm going to guide us all to an ARFID chat, ARFID 101, in fact, which was published on the Feast YouTube channel. Now, Feast is a favored resource that I'll be citing throughout our chat today because FEAST is the family. So check this out. FEAST stands for Families Empowered and Supporting Treatment. That's the F E A S T of Eating Disorders. And it's an international organization that is comprised of parents, caregivers, lived experience warriors, and they have so many great resources, information and you can learn more about evidence based treatment or emerging research. It's awesome. And hey, I'm not ashamed to admit it's been a great support even for my family as we have encountered ARFID firsthand. So the OCD family community is to OCD and ocrds what FEAST is for the eating disorder community. So I'll have all the deets cited over on this episode's blog as well as the video we're going to be listening to a couple excerpts from today. All right, so without Further ado, let's hear from Dr. Sarah Raven, describe what ARFID is.
- [05:30]
B
ARFID is an acronym for Avoidant Restrictive Food intake Discourse like that. ARFID is characterized by a pattern of limited or restricted eating which is associated with a variety of either social, emotional, medical, nutritional or developmental consequences. The person's reason for restricting their food intake can vary. So for some individuals, the food restriction has to do with sensory sensitivity, maybe disliking or being averse to a variety of different textures or tastes or smells of food. For other individuals, they seem to just not really have much of a biological drive to eat. They don't seem to get much pleasure from eating. They may not have hunger cues or may not be able to respond to them the way that other people do. And yet for others, it may be a fear of the negative consequences of eating. So, for example, a fear of vomiting after eating, a fear of choking on food, a fear of having severe abdominal pain, a fear of an allergic reaction, or something of that.
- [06:33]
C
Sure.
- [06:33]
B
So what ARFID is not, is it is not something that is related to body image drive for thinness or fear of weight gain. So we very rarely see body image distortion with arfid. In fact, those individuals with ARFID that are underweight are typically very aware that they're underweight, may feel self conscious about being underweight, and may actually have a desire to gain weight, but simply have a very difficult time doing so.
- [07:01]
A
Okay, so are we clocking why we may see ARFID overlapping with our neurodivergent processors? All human beings have sensory systems, but for some of our autistic and ADHD fam, or any neurodivergent processors for that matter, there may be some increased sensitivity. Additionally, what if you're not feeling or knowing how to make sense of these different sensations, be they hunger or satiation cues? Take a person that has alexithymia. What does this feeling mean? What is it indicating? Are you able to feel it before it's screaming at you? But also, Dr. Raven talked about how one or more of these ARFID presentations take shape. So a person could have sensory sensitivities like texture, smell, taste, et cetera. They may fear aversive consequences like choking or vomiting, or I would even add in concerns about lower GI distress. I know GI distress was the driver for my little warrior, or a lack of interest in eating altogether. So this can lead to significant nutritional deficiencies, weight loss, and even disruptions in social or daily functioning. I mean, just think about how many of our social Rituals center around food. We don't have to think too hard during the holiday season, do we? There's a potluck or there's a dinner or there's a family meal. Right, let's keep going.
- [08:26]
B
ARFID is a very heterogeneous diagnostic group. So we tend to see a variety of different ages, genders, body types, personalities and symptom presentations. Much more so in ARFID than with any other eating disorder diagnosis. So just to kind of give you a sense of how heterogeneous this diagnostic group is, I'm going to give a few examples of different individuals with ARFID that I have treated. So the first example was an 8 year old girl who had always been very healthy, very active and had been a great eater, ate a variety of different ethnic foods, fruits, vegetables, just about everything. But then she stopped eating solid food abruptly after she choked on a vegetable. And sadly, right around that same time, within a week of that incident, her grandfather also died of COVID So I think the combination of the trauma of choking plus the death in the family for her caused a tremendous amount of fear around eating. After she stopped eating solid food, she lost quite a bit of weight and then presented for treatment. Another example of a patient I've treated is a 21 year old average weight college student male who had suffered from social anxiety since he was very young and who was socially isolated due to his very limited palate. So he was a senior in college, but he kind of ate like a preschooler, just like pasta with butter, chicken nuggets and french fries. And it hadn't really affected him too much up to this point. But he was interested in dating, he wanted to ask girls out and take them to nice restaurants and didn't want to order off the children's menu. He was also applying to law school. So he was kind of thinking ahead that in the future if he had business meetings with colleagues, our clients, he again wanted to eat like an adult. Another example of a patient I've worked with was a 17 year old girl with a very poor appetite, very low bmi, little interest in food and a history of bullying. Actually she was bullied for being underweight, which made her even more upset, which whittled her appetite even more, which made it even harder for her to eat. And she suffered from a lot of like dizziness, lightheadedness, things of that nature because of the malnutrition. And then a final example of a patient I've worked with was an 11 year old boy who had extreme picky Eating, he had a higher bmi, so there was no nutritional compromise per se. But he ate only three foods. Chicken nuggets only from McDonald's, french fries only from McDonald's and Kraft Macaroni and Cheese. And in his particular case, there was a lot of strained family functioning surrounding his arfid, with some family members understanding and others not understanding and kind of different levels of accommodation. So that's just to kind of give you a sense of snapshots of what different cases of ARFID may look like.
- [11:22]
A
All righty, I appreciate it. So just a quick note that heterogeneous is our fancy pants way of saying the examples are vast and unique. Kind of like snowflakes. They don't have their own little design, their own little imprint. That being said, a critique and concern of research is that it often doesn't reflect diversity super well. And as is the case with many mental health and medical disorders, well, the researchers are working on it and they are. There's a long road to go. Alright, so hopefully those case examples help give you an idea of both how ARFID can present and why it's disruptive. Additionally, you heard Dr. Raven mention pickiness, and while I want to keep and remain the focus on ARFID itself, let me just give you a quick view. Key differences between picky eating and arfid. First of all, picky eating is usually mild or it doesn't get to the point of affecting growth, nutrition or daily life. ARFID in most cases leads to weight loss, nutritional deficiencies or social interference. In that last patient example, Dr. Raven mentioned someone that did have a normal BMI. And this reminds me of a point relevant not only to arfed but all eating disorders. It is a myth that having an eating disorder means you're underweight. Eating disorders, and even disordered eating more broadly does not have a size requirement. And while it may be obvious that for the health and safety of the client of your loved one of the patient, we want to have that healthy bmi, that one data point does not a diagnosis make. We have to look at the whole picture. Additionally, we look at the level of fear or distress that is experienced when we have maybe even a quote unquote extreme picky eater versus arfid. Picky eaters may dislike certain foods, but that doesn't mean they can't tolerate those foods in small exposures. Arfid, on the other hand, involves intense anxiety or even disgusting and even thinking about the food alone can trigger panic or avoidance. And the last quick note, I'll make is there is persistence over time. Picky eating tends to improve with age. I mean, how often have we heard this? I hated this as a kid, I love it now. Our food is chronic and without intervention, it absolutely could worsen. So if you've ever had a friend or family member say to you about your loved one, just give them time, they'll eat eventually when they get hungry enough. Mm, yeah, that line, that's a no go with arfid. You know what happens when an ARFID eater doesn't eat? Maybe you start having to boost nutrition with literal boosts or insurers. Maybe you have to go into the emergency room and get fed nutrition directly. Or in the most extreme of examples, you may even need to have a feeding tube put in. And I don't say that to scare or alarm anyone, but folks saying, just wait, they'll get hungry enough, eventually their privilege is showing because these kids, these adults, it doesn't work like that. And in fact, putting that pressure and stress is really just shooting yourself in the foot because you are amplifying the noise and distress around this panic and fear that already exists. And hey, I've been there, I get it. I think people are well intentioned or they're like, gosh, in my day and age we didn't have this silly problem. Well, this silly problem wasn't your problem, was it? But it's not so silly and it's very distressing when you or your loved one is dealing with arfid. Okay, so with that little side quest of explanation which needed to be said, because if I had a dollar for every time, I'd be doing well, y'. All. But now we're going to listen to Dr. Raven. Overview. Three different ARFID subtypes.
- [15:10]
B
I want to talk a little bit about three different subtypes of arfid. So we have the aversive subtype, the avoidant subtype, and the restrictive subtype. These subtypes are not mutually exclusive. So it's actually pretty common for a patient to have symptoms from two or even three of these different subtypes. So the aversive subtype, these individuals are often normal eaters, maybe even great eaters. Before the onset of the arfid, the onset tends to be very sudden and tends to be triggered by some sort of trauma or extremely stressful experience, experience surrounding food. So for example, the individual may choke or vomit or have a severe allergic reaction and then becomes very afraid of the food or the situations that are related to that particular trauma or in some cases of all foods. And the person may either experience the food related trauma themselves, or perhaps they witness a sibling, a family member, or a classmate who chokes or vomits on. And then it's kind of like a vicarious trauma after that.
- [16:15]
A
All right, my ocd crew. You might be thinking, wait a minute, doesn't that sound a lot like ocd? And maybe a sprinkle or two of emetophobia, that fear of vomiting in there, I like that curiosity, fam. And I'll explore this a bit more later, but for now, it's helpful to note that OCD is incredibly opportunistic. So it could take an issue like a person gagging on a certain food texture into excess and say, yo, if you eat this, you could die. Because remember how you gag that one time? Or for our emet warriors, what if it makes you throw up?
- [16:49]
B
Hmm?
- [16:50]
A
Think about that. They're like, every day of my life. Okay, let's keep going.
- [16:54]
B
The avoidance subtype.
- [16:56]
A
These.
- [16:56]
B
These individuals tend to have difficulty with eating that dates way back to infancy or very early childhood. These are the kids that tend to be very sensitive to smells, taste, textures of food. They are often characterized by extremely picky eating. And this is the subtype that is often comorbid with autism. So these individuals tend to have a lot of difficulty adjusting to baby food. So when they sort of are transitioning away from milk towards baby food and then into solid food, that's when these problems tend to begin.
- [17:29]
A
And it's worth noting our ADHD warriors might experience this too. Sensory processing, again, is experienced by all humans, neurodivergent or allistic. But we can see some earlier routes for ARFID in this avoidant type. Let's keep going.
- [17:45]
B
And then finally, the restrictive subtype. These are the individuals that seem to lack a biological drive to eat. They may have a poor appetite. They may not experience hunger cues, or if they do experience hunger cues, they have trouble responding to them. They don't seem to get much pleasure or enjoyment out of food. They tend to feel full easily. Food tends to be more of a chore or something that they dread or just that they have to get done, rather than something that they look forward to. Oftentimes, parents of kids with this subtype say that when the child was a baby, they have to set an alarm for every two or three hours to remind the child to eat. Which, as any parent knows, most babies come with their own alarm and they let us know when they're hungry. But for these kids, they don't come with their own Internal alarm system. So oftentimes parents have to be the ones that start feeding them mechanically, even from a very, very young age.
- [18:37]
A
Yeah, good points. And also, I'll say again, some of this we can see happen at earlier ages, but I can think of someone in my extended family who absolutely has this restrictive subtype. And partly because of things that are happening and changing neurologically for them, it has just really eliminated those hunger cues and affected energy and all sorts of things. And so you really have to be like, did you eat? You need to eat. We are eating now, but there isn't an internal drive or motivation to do so. Also, it's worth noting that restrictive subtype can also be common enough for our alexithymic warriors, as we mentioned earlier. And that makes sense. In fact, back during the pandemic, I remember one of my families got sick. One with a very healthy appetite, no disordered eating, but they lost their taste temporarily when they got their first and thankfully only bout of COVID And I recall them articulating how depressed they felt about food during that time. It went from this really joyful experience or expression or outlet to something that just felt pointless or useless. Because in their words, what good is food if you can't even taste it? Why take the time, effort, or waste the macros if you don't feel any different and you can't even enjoy it? Now, while that's not the same as having persistent disordered eating, such as we do within arfid, it did give that person an insightful window into how motivating and reinforcing that sense data is. All right, moving on, I want to.
- [20:10]
B
Talk a little bit now about formulation or how we conceptualize our fit. And this formulation is particularly for the avoidant and restrictive subtypes. So as with other types of eating disorders and really all psychiatric disorders and other medical conditions, these individuals tend to come with a biological predisposition that makes them more likely or more vulnerable to developing arfid. So this biological predisposition almost always involves an anxious temperament and a hypersensitivity to body sensations. So these individuals are very, very in tune with how their body feels, almost to a fault.
- [20:48]
A
All right, family anxiety sensitivity has entered the chat.
- [20:53]
B
Sometimes these individuals have extreme sensory sensitivity. They tend to have a lot of cognitive rigidity, like they must do things a certain way. So sometimes there can be some autism spectrum traits there and, or some OCD type traits. And then for the individuals with the restrictive subtype, there's often that lack of hedonic drive, meaning they don't get pleasure or enjoyment from food or other physical sensations that most people do enjoy. So from that biological predisposition spring a lot of negative feelings, negative thoughts and negative beliefs about the consequences of eating. So, for example, typical emotions that may come up for someone with arfid might be disgust, fear, or suspicion when they're faced with Sudan. So in some people, the disgust, fear or suspicion is of any new foods, anything outside of their list of safe foods. And for some people, it may be all suits that bring up feelings of disgust or suspicion.
- [21:51]
A
Negative thoughts, feelings and beliefs, you say, hmm, family. Any guesses on what kind of treatment protocols help with these sorts of struggles? Hold that thought. We'll see if you're right in just a bit.
- [22:04]
B
For those with the restrictive subtype, oftentimes there's apathy or indifference around food. It's just like staring at a plate of nuts and bolts. It's not something that appetizes for that that seems appetizing or appealing to them at all. So with these negative emotions come a lot of thoughts and beliefs about eating food or what it might be like to eat a particular food. So, for example, a thought might come up of, I won't like any new foods anyway, so I'm not even going to bother trying. So then from those negative beliefs and thoughts about food and about the consequences of eating comes food restriction. And the food restriction can take a variety of different forms. In some people, it's a very limited variety of foods. So these individuals may have, you know, four or five safe foods, and they eat nothing but that. In other individuals, it may be a limited quantity of foods, so perhaps they eat only until they're just, you know, very, very slightly not hungry, but not until they're all the way full, especially for people who are afraid of vomiting or who are afraid of abdominal pain. In some individuals, food restriction takes the the form of skipping meals or snacks if their preferred foods are not available. Then, of course, with food restriction comes nutritional compromise. So the nutritional compromise might take the form of a vitamin deficiency and nutrient deficiency. They may lose weight. They may fail to grow or develop normally. They may fail to proceed through puberty as expected. In some cases, there may be excessive weight gain. If it's a person who eats plenty of food, but only chicken nuggets and pizza, for example. So often, though not always, there's some sort of nutritional compromise involved. And then also we have limited opportunities for exposure. So if someone is fearful or avoidant of foods, they may be very unlikely to put themselves in situations in which different Foods are available. So they may avoid restaurants, they may avoid places, parties, sleepovers, school, lunch, traveling, any situation where they're expected to eat around other people or when they're expected to eat different types of foods. So with these missed social opportunities, of course there can be social isolation, there can be increased anxiety, sometimes depression can set in, but also there's less exposure to peer modeling. So if you don't go out to a Thai restaurant with your friends, you don't get to see all these other kids eating Thai food. And hey, it's actually, actually kind of good. So they don't have a chance to disconfirm their negative beliefs and thoughts around food because they're kind of stuck in this little bubble of I only eat these certain foods and nothing else. And then along with that, they tend to become very, very attentive to small changes in food presentation. So, for example, some people will only eat Kraft Macaroni and cheese, but won't eat any other brand. So. And they tend to be much more attentive to food presentations or taste differences that most people may not even notice or care about family.
- [25:03]
A
This overview reminds me of one of my favorite guest chats that I've had here on the pod with Dr. Melissa Hunt. And it was about IBS and other GI related distress when it comes to OCD, ARFID, mental health, you name it. And as Dr. Raven describes the functional formation of ARFID, it echoes Dr. Hunt's sharing on the subject too. So if this rang one or many bells for you, I'm going to link that episode over on this episode's blog because I think it's really fascinating and I would encourage you to listen. But for now, let's hear more about the aversive ARFID subtype.
- [25:38]
B
Now, I want to talk a bit about how we conceptualize or formulate the aversive subtype of arfid. And this is the one that has the trauma component. So it's similar to the other subtypes, but there's a little bit of a twist because there's typically an event that sets it off. So with these individuals, yes, there's also a biological predisposition. These people tend to come with an anxious temperament and they tend to be very, very sensitive to bodily sensations. So this hypersensitivity, these are often the types of kids that may experience panic attacks because they're so attuned to changes in their body, and then they become anxious about being anxious, etc.
- [26:17]
A
Okay, anxiety sensitivity. I see you creeping around here. I might have to start a tally, fam, but we certainly see this show up in OCD as well.
- [26:25]
B
Then there's the food related trauma, which again can be either something that the child themselves experiences or something that they witness in a family member or friend or even something on tv. It may be an episode of choking or vomiting or severe allergic reaction or something of that nature. It can even be a fear of feeling extremely full and how uncomfortable that may be. So once the person experiences this food related trauma, either in themselves or witnessing it in someone else, their body goes into fight or flight mode. So there's a lot of fear and avoidance and resistance around either around that particular food or that particular situation, or sometimes food altogether.
- [27:08]
A
And I would point out here, fam, that emotional contamination, harm, or even existential themes of OCD and or emetophobia can show up here with arfid. So you see how these disorders then have the potential to really wrestle with one another. Okay, let's keep going then.
- [27:27]
B
After the food related trauma, in part because of the trauma and in part because of the biological predisposition, a lot of negative thoughts and beliefs about food and eating spring up. So these individuals tend to overestimate the likelihood of repeat trauma. So for example, a little girl that I've worked with who choked once on a vegetable and she, she turned blue, but she was fine, you know, she survived. She actually believed that there was a 90% chance that she would choke again if she ate solid food, which I don't have hard data on this, but I think the likelihood of, of choking again is probably quite small, especially once a person is very conscious and chewing their food very well. And these individuals also tend to underestimate their ability to cope. They tend to underestimate their resilience. So if something bad did happen, for example, if I went to school and I ate school food and I vomited in front of my peers, that would be absolutely horrible and I'd never recover. Whereas, yes, that would be embarrassing, but most people would probably move on. So then with kind of the combination, the biological predisposition, the food related trauma, and these negative thoughts and beliefs about food, comes the nutritional compromise, comes the limited opportunities for exposure, and also the food restriction. So with the nutritional compromise, in some cases the person undereats, in some cases the person experiences weight loss or failure to gain weight or grow as expected. Some people tend to develop gastrointestinal symptoms that actually reinforce the undereating or anxiety. So this is pretty common in people who have kind of underlying gastrointestinal issues. They, they do have legitimate GI issues. But then the anxiety about eating amplifies that and vice versa. So it kind of becomes this vicious cycle.
- [29:13]
A
I mean, did we call it or did we call it ARFID and OCD for that matter? Taking fear into excess and then the GI distress, just like Dr. Hunt has taught us about. I mean. Yep. So how do we then make sense of this with treatment? As Dr. Raven will explain, it's important to prioritize needs. And we do this in other areas too, where health and safety is on the line. So when it comes to eating disorders, that's going to translate to getting a person nourished first and foremost. But let's hear the helpful way that Dr. Raven breaks this down.
- [29:49]
B
I look at kind of the clinical significance in order of priority. So in terms of evaluating someone and prioritizing treatment goals, we start from the quality of their nutritional intake. So the most important question to ask is, is this person eating well enough to maintain their health and well being? So, and what is good enough? Well, that depends entirely on the situation. Is the person eating a sufficient quantity and variety of food to, to get all their vitamin needs, to get all their mineral needs, to give them enough energy so that their body functions properly and they're not dizzy? Are they getting their period regularly? If they're a post menacal female, do they have enough strength to participate in the sport that they enjoy, et cetera. So is their nutritional intake good enough for their purposes? Then we want to ask what impact does the ARFID have on their growth and development? So in some cases these kids might be growth stunted. In some cases they might have lost weight, which is almost always a problem in a child or adolescent. In some cases, puberty is delayed. So there may be a girl who's, you know, 13, 14, 15, 16 years old and hasn't yet had her period, hasn't had any breast development. So these are the things that we want to look at next. So as you can see, the person's basic physiological needs have to take priority because without that, without a nourished body and a nourished brain, it's very difficult, if not impossible, to focus on the other important therapeutic elements of their treatment. So next we want to look at the impact of the ARFID on family functioning and sometimes vice versa. So it's pretty common for ARFID to cause conflict within a family. Oftentimes parents have different ideas about how to manage the child's arfid. Sometimes one parent believes there's a serious problem and the Other doesn't, the other thinks that it's a phase that they'll grow out of, etc.
- [31:46]
D
Who?
- [31:46]
A
Us fam. Yeah. If you're listening to this episode as a family member or a lived experience ARFID warrior, you know this all too well. Let's keep going.
- [31:57]
B
In many cases, there's a lot of family accommodation, so the family may avoid restaurants, vacations, social gatherings, family reunions, et cetera, which of course causes the family to become more isolated and limits their contact with other individuals.
- [32:13]
A
Family accommodation. And all our OCD warriors also know these scenarios all too well.
- [32:19]
B
And then also in some cases, other family issues may impact the child with arfid. So for example, if there's conflict between the parents or between a parent and sibling about something else, that may make it more challenging for the child with ARFID to eat sufficiently. Next, we want to look at the impact on social emotional functioning. So is the individual able to do the things that most individuals their age do? So for a child, can they go to school, you know, can they go to play dates with other kids, can they participate in some sort of extracurricular activities? If it is a college student, you know, can they attend class, can they, you know, go out to parties or social gatherings, can they hold down a part time job, et cetera?
- [32:58]
A
And this would also be that d in disorder family, because how is this impacting your home, your work, school, social functioning? That's an important piece. Now, the classification of disorder has a bit more to it, but ultimately this is why people seek help. They're like, this sucks, or this is scary. Or as a parent of an ARFID Warrior myself, I can tell you there is no greater fear than not being able to get your kid to eat. And you really eat a lot during a day. So you get to have this ongoing battle constantly, all day, every day, or so it feels. And there's a real fear like, I don't want to end up in the hospital. All right, let's keep going.
- [33:43]
B
Next, we want to assess for any comorbid conditions. So with arfid, we very often see a comorbid anxiety disorder. We may often see comorbid autism. And then another thing to bear in mind is that, you know, having ARFID as a young child is actually a risk factor for developing another type of eating disorder later in life. So often individuals with ARFID as young children may develop anorexia nervosa after puberty. So that's something to bear in mind as well, because of course, that complicates the clinical picture.
- [34:15]
A
And of course we'll add OCD here as well, because as we've already discussed, that overlap is high. And sometimes even what people conceptualize as the co occurring anxiety disorder is actually ocd, where the distress manifests as anxiety. That's practitioner pickiness there. But I can tell you from the lived experience, family side of it, you just know it sucks and you know, anxiety is there. Call it, dress it up, whatever you want, it's a problem.
- [34:45]
B
And then finally, we want to look at the patient's subjective distress. So what is their quality of life? What bothers the patient about this issue? You know, do they believe they have a problem with food? And if so, why is it a problem? To what extent does it interfere with the life that they want to live? So the treatments for ARFID really are all. Because this is a pretty new diagnostic category. This is all sort of in its infancy, but the treatments that exist are all adaptations of other treatments that have an evidence base for treating other eating disorders.
- [35:19]
A
Okay, so we're into treatments. And for anyone that was guessing a little bit ago, let's see if you were right. Time to check our work.
- [35:28]
B
So first we have cognitive behavioral therapy, or cbt.
- [35:32]
A
Uh huh.
- [35:33]
B
So CBT for children and young adolescents always involves family involvement. Family tends to play a very strong role in the cbt. It involves psychoeducation, both for the patient and for the parents, and a lot of self monitoring, which can be done either by the patient if they're a teenager or an adult, or by the parents if it's a child or maybe a less cooperative adolescent. And the CBT tends to target the maintaining mechanism. So what is it that is maintaining this eating disorder? The eating disorder is very often maintained by avoidance. So avoiding particular foods, particular situations, that tends to perpetuate the symptoms. Undereating tends to kind of perpetuate itself. So the less the person eats, the, the less they want to eat, and so on and so forth. And then a lot of the thoughts and beliefs around food also serve to maintain or perpetuate the eating disorder, and those are targeted in CBT as well. Next we have family based treatment, or sbt, which is the gold standard first line of defense for children and adolescents with anorexia nervosa as well as bulimia nervosa. So with an adaptation of FBT for arfid, it actually looks quite similar to FBT for anorexia nervosa. We start by increasing the parent's urgency and mobilizing the Parents anxiety, which in the case of arfid can often be harder than for anorexia nervosa. So in the case of a child with anorexia nervosa, very often they are a normal eater, a healthy person, you know, growing normally, and then all of a sudden at age 13 or 14, you know, they fall off their growth chart, they start restricting their food intake, they lose a lot of weight, et cetera. Whereas for, for a child with ARFID, they may have been suffering for, you know, 10, 12 years prior to coming in for treatment. And so there's a lot of fatigue in the child and in the family of having dealt with this problem for so long. And also a sense of, well, my child's already made it to age 12 or 13 or 14 and they're still okay. So, you know, so it can be harder to recognize the situation as a crisis with ARFID than it is for another type of eating disorder.
- [37:47]
A
Our OCD warriors can relate. Most people don't find out about having OCD for an average of 14 to 17 years. So by the time you're getting a diagnosis and proper evidence based care, whether we're looking at OCD or arfid, in this case, these patterns and disorders are ingrained.
- [38:08]
B
So in SBT for arfid, we work to empower the parents to take responsibility for helping the child meet their treatment goals. And initially in treatment, in the first phase, the parents hold that responsibility. But later, as we get into phase two of fbt, the responsibility for meeting treatment goals is transferred back to the child or adolescent or young adult, whoever it may be. And then finally, in the third phase of fbt, we work to help the individual establish a healthy identity separate from the ARFID that they've typically been suffering for for a very long time. Then finally, we have some medical interventions. In some cases, individuals with ARFID may need to be hospitalized for medical instability, either for bradycardia or hypotension, or electrolyte imbalances, particularly if there's a lot of vomiting involved. Some individuals may need a feeding tube if they are not able to take in enough nutrients orally. That's fairly uncommon with arfid, but it does happen. And then finally, there are some medications that are used with arfid. Now, all of these medications are off label. To my knowledge, there aren't any FDA approved medications for arfid, but doctors will often extrapolate and use medications that have been found effective for similar conditions.
- [39:28]
A
Okay, we're not going to do a Deep dive into the medications. But again, this video is going to be linked along with all the other resources over at OCD Family Podcast and you can hear more about Dr. Raven talking about medications or you could also chat with your child or loved one's pediatrician in the case of pediatrics or your family doctor. So now we are going to jump ahead and we're going to talk about what kind of tools from these adapted evidence based practices are most useful for ARFID warriors and families.
- [40:02]
B
ARFID TOOLBOX so when I'm working with an individual and family with arfid, I like to put together an individualized ARFID toolbox. So that toolbox is going to look different depending on that patient and their symptoms and goals and the family's strengths and goals as well. So there are a number of different strategies that can be used. We would never use all of these strategies with any one patient, but kind of pick and choose based on what that person needs. So for individuals who are not consuming enough calories and or have not grown or gained weight as expected, we have a lot of different strategies for increasing caloric intake. So there are strategies such as using liquid nutrition, ensure or boost high calorie shakes and smoothies are often used. Eating six times a day is frequently recommended. Using supplements such as Feni calorie or Carnation instant breakfast, fortifying foods with oils and things of that nature. Eating very nutrient dense foods to try to pack more calories and nutrients into a smaller volume. These are all things that, you know, parents of kids with other types of eating disorders such as anorexia nervosa, use frequently in their treatment as well. Sometimes we use a food hierarchy. So a hierarchy is a strategy that's used in a lot of different types of, of cognitive behavioral therapy. For anxiety fear hierarchy.
- [41:29]
A
We have some exposure work entering the chat.
- [41:33]
B
So what we tend to do is we'll come up with a list of about 10 different foods that the individual wants to be able to conquer and we'll rank those from most challenging to least challenging and then we'll kind of work our way up the ladder. So the person starts with an exposure to the least challenging food. Once they've mastered that, we move on to the next one and the next one and so on and so forth, which tends to have the effect of increasing the person's confidence and motivation to move forward. Exposure therapy is another very common technique that's used in a lot of different types of CBT for anxiety disorders, PTSD and ocd.
- [42:10]
A
And just like a Little asterisk note here. Yes, we use exposure therapy for ocd, but we don't forget that RP in our exposure therapy, our exposure and response prevention.
- [42:24]
B
Exposure therapy for ARFID can take a few different forms. Some cases, it's exposure to feared foods or feared food situations such as restaurants, parties, things of that nature. In some cases, it's interoceptive exposure, which means exposure to bodily sensations that the person finds very aversive, such as a feeling of being very full or the feeling of swallowing and having a lot of food in their throat due to fear of choking. Cognitive therapy, again, is very frequently used in the treatment of anxiety, depression, and other mental health issues. With cognitive therapy, we learn to identify and challenge some of the thoughts and beliefs that are unhelpful or that are keeping the person stuck. Food chaining is a way of kind of gradually transitioning from a preferred food to a food that the person desires to eat.
- [43:19]
A
Oh, the flashbacks. But I do love this. Food chaining is really helpful. And back when my ARFID warrior was a we tot, we participated in a group feeding therapy where this was a cornerstone of the treatment. Because if we can make these little pivots between color, shape, texture, crunch, smell, you name it, then it becomes less intimidating and easier to make this little nudge, not giant leap to the next food. So the therapists played a lot with the food and the kiddos played a lot with the food. And this really helped to break down some of that tactile defensiveness as well. And sometimes just took the pressure away from the expectation of, you have to eat this instead. We're playing with it, we're touching it, and oh my goodness, just even touching the food was the first of many wins. Even if it was to say, no, thank you, I don't want this, I don't want to eat it, I don't want to touch it, I don't want to see it. In my warriors group structure, there was a no, thank you plate, in fact, where you could move the unsightly offender if needed. You could even cover it up with a towel if you wanted to. And if you're thinking, but what you played with the food, yeah, playing is processing for kiddos. But also if I'm offended by a carrot, for example, and I can muster the courage to pick it up, even if it's with the tippy tips of my fingers, and put it on the no, thank you plate, maybe cover it because it's so triggering for me. But then, I don't know, turn this carrot Plate into a riveting game of peekaboo. You would imagine as you find and hide and find and hide and find and hide that carrot, it becomes less and less threatening, even if I'm not eating it, just having it there. In fact, now it's fun and it's silly, because where did it go? Oh, here it is. It still may be way too triggering to eat or even bring to one's lips. But if I can play peekaboo with the carrot, I'm probably going to get to a place where I can actually sit there, be its neighbor covered or uncovered, and care much less about its presence there. And for our arfid warriors, that's a big win. So these little movements are what makes something like food chaining so helpful. And for my warriors group, veggie straws were one of the few things that every participant in the group was willing to eat. So they would start off with that. A win. Same color straw for everyone, fully intact. And then the next food would share some of those common properties with that orange veggie straw. So now we're going to a carrot tidbit. Similar width, similar length, similar color, also crunchy. And we'd have those little pivots to get through a little menu.
- [46:06]
B
Fading in is a technique that we often use for people who have a fear of vomiting. So, for example, a person who won't eat solid food due to a fear of vomiting, we may start off with apple juice, and then we move on to applesauce, and then we move on to applesauce with little tiny chunks of apples in it, and then applesauce with larger chunks of apples, and then an apple cut into quarters, and then finally a full apple. So in that way, it's. It's similar to introducing a baby to solid foods. And we do that pretty gradually as well as the baby gets more teeth and is able to swallow more deconstructing foods. So this involves, like, gradually becoming more comfortable with different components of a food in the service of eventually eating the full. So, for example, if someone wants to be able to eat pizza, which is common because it's kind of a staple of kids parties and sleepovers and whatnot, we might start off with first having them eat the dough, and then on a different occasion, have them eat the cheese, and then a different occasion, have them eat the sauce, and then another occasion, the pepperoni, and then kind of mix and match different permutations of those ingredients until finally they're eating the full sliced pizza.
- [47:20]
A
Yep, yep, yep. I remember those days. But Also, it's interesting because this deconstruction idea came up even during this year's holiday episode, which will premiere the first Friday in December with regards to cereal. So I love it. I'm here for it. Great example.
- [47:39]
B
There's a strategy called Food Detective, which tends to to be most effective in children, particularly those who have sensory issues around food. So we learn to, you know, take a piece of food during the session and explore it with all five of our senses. And the idea behind this is to help the person learn to approach versus avoid the foods that they find disgusting or aversive or that they're afraid of. Relaxation training, which again, is often used in cognitive behavioral therapy for different types of anxiety disorders that may involve deep breathing, meditation, mindfulness strategies, progressive muscle relaxation, yoga, things that help to relax the body and the mind, to help the person manage the anxiety that they have around them. Values work, which comes from ACT acceptance and commitments, therapy that is sort of looking at or helping the patient to define what it is that they value, what it is that they want out of life and how to get from where we are now to there. So if they value, you know, socializing, going out more with friends. Okay, what do we have to do in terms of your food intake to get you to the point where you're comfortable socializing with friends, going on dates, going to parties, et cetera. And then finally, as I've mentioned previously, there are some medications that can be used off label either to increase appetite, to reduce anxiety, to reduce obsessive compulsive symptoms or cognitive rigidity.
- [49:09]
A
All right, I love it. It's such a great toolbox. And we're actually going to look at some of these examples of values work and act in action. See what I did there in a little bit. But first, we're going to round out the end of our toolbox. We got just a couple more tools in our ARFID toolbox, and then we will look at a couple different examples.
- [49:33]
B
So how do we define recovery from arfid? Well, recovery from ARFID looks different than recovery from anorexia nervosa, bulimia nervosa, or binge eating disorder. So with anorexia bulimia, binge eating disorder, the goal tends to be to get the individual back to the person that they were before they develop that eating disorder. Right. So with one of these other types of eating disorders, we're looking for full weight restoration, return to their historic growth curve for height and weight, moving through puberty normally, complete absence of binge Purge symptoms, complete absence of food restriction, et cetera. So it's fairly clearly defined. We're looking back at the person that they were before developing the eating disorder and getting back to there. With arfid, it's a lot more challenging because very often these individuals don't have a normal to go back to. They may have always been very, very picky. They may have always had sensory issues around food. So they may have always been very underweight. And so we don't always know where their body is meant to be. We don't necessarily have a healthy eater person in mind for them to go back to. So it's quite a bit different. How do we determine whether a person is recovered or in recovery? We want to see if their nutritional intake is good enough to sustain basic health. So are they getting enough calories, vitamins, nutrients, proteins, carbohydrates, fats, et cetera? Are they growing and developing normally? Are they where they're meant to be in terms of height and weight? Again, this, it might be a guess where they're supposed to be, maybe based on the height and weight of their biological relatives. If it's a person who's always been very small for their age, we also want to make sure that they're progressing through puberty as expected. If it's a person who's in early adolescence, we want to look for improvement in their social, emotional health and in their family functioning as well. So is the family as a whole functioning well enough to support this person continued recovery? Have the issues within the family that have been exacerbated or caused by the ARFID been worked through and dealt with? And then finally, we want to look for a reduction in the patient's distress and an improvement in their quality of life. So does the patient subjectively say, yes, I feel better, I like my life now. You know, I enjoy my social media life. I'm able to do the things that I want to do. So recovery from ARFID may not ever mean being a, quote, unquote, normal eater. Oftentimes these individuals are picky eaters for life, and that's okay. So a person can be a very picky eater, but still eat enough to maintain normal growth and good health. They can be a very picky eater and still participate in social events. So we want to get them to the point that they are eating well enough to meet their goals socially, emotionally, and and physically.
- [52:20]
A
Of course, I appreciate Dr. Raven managing that expectation that you're not going to just go to, quote, unquote, normal eating. But we want to be able to see nutritional needs are met, development is thriving, social, emotional, health, family functioning, their quality of life is better, their distress is down, they're going to be a picky eater. Okay. I think almost having that mindset that yeah, it'll be picky, but it can be better than this. Yeah. So now we are going to switch gears to show some examples from an amazing pint sized influencer who is facing her ARFID journey on her channel at My Arfid Life. And all the clips that I'm going to feature and play from today are going to be linked over on the blog as well. But I just know you're going to fall in love with this girl, Hannah and her bravery and how articulate she is as well. Hannah's mom and this family's strength. So we'll start off with her mom who is joined by Hannah as Hannah's mom describes how this process unfolded.
- [53:23]
D
Hi, I'm Hannah's mom and we decided to give you guys a little bit of background about our family and also why we started this page. So we are a family of five. Hannah is the youngest of three. She has two older brothers. All three of them have very different eating habits. Our oldest son has autism and he was a picky eater. And then as the years went on, by the time he turned about six, he started eating more variety of foods and he absolutely loves fruits and vegetables. And he's a pretty healthy eater. He is still pretty particular with the kinds of stuff he likes, but he will try anything and it's not an issue. And then our middle son will eat anything. He is not a picky eater at all. He doesn't like fruits and vegetables, but that's a typical kid thing. But he, he loves meat, loves chicken, fish, he'll eat just about anything. And then we have Hannah, who was also a very picky eater and we were hoping that she would follow her brother's footsteps and overcome it. We did feeding therapy with her as well in hopes that, that we would see progress. And it was a very painful experience. It was very traumatic for her. She had very bad anxiety going to feeding therapy and it just became too overwhelming for me and I decided that this was doing more harm than good and so we stopped doing that. But when she was doing feeding therapy, one of the things that motivated her to eat things was us saying things to her like let's take a video and send it to your therapist or let's send a video and send it to your doctor. And so she would do it for the camera. And of course, I wasn't sending it anywhere, but it gave her that motivation. But what really took a turn for us was when Hannah was about 4, her growth on her growth chart started going in the wrong direction. So kids are supposed to grow at the same rate, well, at their growth on their curve. And her curve started going down the wrong way until she finally fell off the chart. So in the last four years, she's gained 10 pounds. Since we started this journey, she has gained 1 pound. So that is amazing news. And so we were getting really concerned. And, you know, the doctors were saying that she can eat ice cream 10 times a day, chips, whatever it is that she needs to eat just to get the calories in. But even that was very challenging for her. And because she doesn't like so many things, even being allowed to eat ice cream 10 times a day wasn't working for her. So finally, about three months ago, we were driving to Chick Fil A, and in the car, I asked her, you know, what do you want from Chick Fil A? And all of a sudden she started crying and started getting very upset and finally opened up to us and said, every time you talk about food, it makes me really anxious. And I could feel this. This emotion coming from her. And I didn't realize how bad it was impacting her. And so I decided there's obviously a lot of underlying stuff going on. I'm going to figure out something because we need to help her. And so I started researching, looking for an eating disorder specialist. Because, you know, you call your insurance company, they give you a list of psychologists, and then you call them and you ask them, you know, do you specialize in eating disorders? And they say, well, no, not really, but I know how to deal with eating disorders. But I knew that I needed something very specialized, especially since ARFID is still pretty new and not everybody knows how to treat it. And so I was very concerned about just seeing somebody who didn't have the experience and having it do the opposite of what we needed it to do.
- [57:43]
A
I know, I know many of you listening can relate to this because whether it's ARFID or OCD or an ocrd, sometimes depending on where you live, it can be extremely frustrating and disheartening to find somebody that just has common knowledge, let alone training in how to help. Let's keep going.
- [58:06]
D
So I found an eating disorder specialist who happens to be out of state, which is really sad that it's so hard to find people who know some, you know, Specifically about arfid. And she started seeing her via Zoom twice a week. And they do therapy, and they do exposures and eating. And it still gives you anxiety. Right. When you do therapy. Because she knows that when she goes to therapy, she has to try foods that she doesn't necessarily want to try. And I've noticed that when she does it at her free will and she's the one who's choosing what she's trying, she's not as anxious. But the therapy has definitely been helping her a lot. She's learning a lot of coping skills and techniques that she's using to calm herself down and to better understand what is exactly giving her that anxiety. So the therapy has been very successful. And when she started therapy, we had actually had an appointment with her pediatrician, who had mentioned that it's really important for her to supplement her nutrition with the supplemental drinks, like Ensure, that type of stuff. And it was either that or having the risk of being put on a feeding tube, which obviously we wanted to avoid at all costs. And that was something that really made Hannah. It made you anxious. Right. Every time you would hear more than anxious. Yeah. When you would hear about feeding tubes, you would get really scared. And she wanted to do whatever it took. So we started her on the Insure plus. And it was a struggle again, because there's so many texture issues involved that it was hard for you to get it down.
- [60:00]
A
Yeah. For anyone who has ever. For your own reason or a loved one's reason, maybe you have an aging parent who needs supplemental nutrition, or maybe you have a child that needs that supplemental nutrition. It's kind of like a protein shake in the sense of, like, it's an acquired taste. And if you already are avoiding foods with different textures, different tastes, different weight, because drinking Ensure is not like drinking water. When you think of kind of the weight, even of the liquid, it can be a real struggle. And so I appreciate that she validated, like, because as a parent, when you're in a situation like hers, and it's like, she has to have this, it's on the line. You feel how dire that nutritional need is. It's hard, because what if they refuse to drink it? You have to get real creative sometimes.
- [60:58]
D
We would try to time it and see if she could beat her last record. And then the thought came to me, and I said, why don't we record you drinking the Ensure and we'll send it to your therapist? Because that was motivating for her back when she was doing ot. So that's what we did. And then the idea came to me and I thought, oh, why don't we start an Instagram account where we can share this with our friends and family and she'll have a support system and maybe she'll be motivated to do this for them.
- [61:32]
A
So she's getting into how they created Instagram as Well as the YouTube channel. I think they're probably the same content, but I'll link those over on the blog. Right now we are listening via YouTube. But I just want to take a quick moment to note because I've seen this come up outside of ARFID as well. And it's just, it seems important, it seems worth noting. So I just want to highlight and differentiate something here. Hannah's mom is discussing how they started this account as a motivator. If I could embolden, emphasize that without busting anyone's ears here, I would. But it was a motivator because it was a motivating tool that worked for Hannah in the past and because she also consented and agreed to it and was motivated to participate in it in the present. I'm emphasizing this because I want to be very clear. This was not a shame driven activity such as I'm going to record this and send this to your therapist or somebody you really care about if you don't eat. And I want to state that because for a whole host of things, family, I have heard this kind of comment as a practitioner, even at sports practices, from other parents or whatever, and perhaps you have as well. But it's really important to state, just like we talked about earlier with the picky eating business, you cannot shame or force your child, your partner, your loved one, your parent, another person to eat. You just can't. And if you try, you're just amplifying that distress. And with more distress is more problems. And with more problems, you are taking yourself further away from your goals. So for Hannah and her mom, for their family, this worked because Hannah was motivated by that. And that really emphasizes what Dr. Raven was talking about when she was talking about leaning into those values. And also poor little Hannah and I'm sure everybody in the family was like, we don't want a feeding tube. Oh my gosh, is there thing we can do. But can you imagine the pressure if you're already terrified by food and then they're like, you're gonna have to this tube put in your stomach to feed you nutrition. If you can't figure this out, I mean, stress express. All right, let's keep going.
- [63:49]
D
And that's the other thing is it when you have Arfid, a lot of people around, you don't understand what it is. And you know, as you've seen through the comments, many people just say, oh, it's just a picky eater. So going to holidays, family functions, it's really challenging because people don't understand. And we, you know, bring our own bag of her safe foods. And everybody starts asking questions like, why don't you try this, why don't you try that? And just saying that alone would make you very uncomfortable, right? Yeah, yeah, yeah.
- [64:32]
A
I've been there. Packing a picnic of food to go get food. I remember those days. And they emphasize how that brought stress for Hannah. But I also want to say a shout out for mom there and the families because not only can it make the Arfid warrior feel that stress, but it stresses families out too. I mean, think about it. Why do people even go to restaurants so they don't have to cook, so they can have a warm meal brought to them, they can feed the family. It can take less time, it can be quick, it can be convenient. You don't have to do the dishes, pick a thing. But when you have someone with ARFID and you're going to a restaurant with your packed picnic of safe foods that you gotta clean when you get home, it's not convenient. It's more stressful than it's worth, even in a lot of cases or so it can feel. Because even though, again, as we've heard, exposure is important when you're surviving in those trenches. And then you get what I have to believe, and I do believe actually are mostly well intentioned comments from the peanut gallery going, oh, have you tried this? Yeah. Have you tried feeding them? Oh, yeah, thanks. Thanks for your great idea. Have you tried it a different way? Have you tried calling this thing a chicken nugget? That is clearly not a chicken nugget. And they are adept to all the differences in brands of chicken nuggets. And you want to be like, oh, no, it's just chicken. People don't want to be lied to, they don't want to be tricked. And if they already have a lot of fear about food and you trick them again, you're taking steps backward there. All right, let's keep going.
- [66:03]
D
I thought if we do this platform on, on Instagram for friends and family, maybe they'd have a better understanding as to why she is the way she is. And maybe they would think twice before they would make any comments like that to her. And so that it's kind of how we started it. And so we filmed a few videos, and then before we knew it, it went viral. We had no idea. It was fascinating to all of us because we just didn't understand, like, what happened.
- [66:34]
A
I know what happened. Do you know what happened? People felt hope. They felt seen. They felt less alone. They felt supported. They build awareness. They saw advocacy in action. They felt inspired.
- [66:49]
D
It's been an amazing experience. Hannah has progressed so much in this last month since we started this journey. You know, parents asking their kid to do something, it's not so easy. But when you're doing it for the camera, for thousands of people who are cheering you on and giving you that motivation, it gives you that reason to do it. And so we decided to allow her to pick the foods that she is interested in trying. And we've been looking at all of the recommendations you guys have been giving. A lot of people are struggling with Arfid as well and have given great suggestions, which I think you've been trusting. Right? What they've been suggesting and something I.
- [67:40]
C
Do before I try a food is I draw a picture of Mr. Arfid and I throw it away.
- [67:45]
D
That's right.
- [67:46]
A
Right.
- [67:46]
D
To. To get yourself ready to. To fight your fear. Right. To go.
- [67:50]
C
I told him to go to Antarctica.
- [67:52]
A
And not come back.
- [67:53]
D
That's right. So, yeah, I mean, it's been an amazing experience. We're so thankful for all of the love and the support, and we have been getting messages from all over the world of people saying, you know, thank you for spreading this education. I've never heard about this before. Or you just answered, you know, so many questions that I've had. I've been struggling myself or my child has been struggling, and now I know that there's a name for it. And it's amazing to see that there's others out there like her. And so it doesn't make you feel so alone, right. Like, you feel like you have other people who understand you.
- [68:38]
A
Amen, Mama. Amen. I mean, that's the power of community. And that's why I say every episode, if not multiple times per podcast, you are not alone, because you aren't. I'm not. Hannah isn't. Hannah's mom isn't. We are not alone. And the strength and power and courage of community is contagious in the best possible of ways. And so with that foundation, let's hear how Hannah uses her channel to practice her exposures and fear hierarchies. We've heard some chat about safe foods, which Literally are the foods we can eat without issue. Something we haven't gotten into in this episode, but I will note is when you have a very small list of safe foods, as much as you appreciate that consistency, sometimes you run into food jagging as well, where the warrior's like, you know what? I'm tired of this food. But it's one of their very few foods. And that is a stressful day when you realize, oh my gosh, I got a freezer full of chicken nuggets and now it's like, I never want to see a chicken nugget again. It makes sense why you're tired of it. And while sometimes you can earn back or re establish it as a safe food, I'd be lying to you if I said that always happens. Sometimes you lose it to the feared food list. That being said, though, with treatment, there's a lot of hope. And so we're going to look at some specific examples from Hannah's Sweet channel. And again, all of this will be linked over on ocdfamilypodcast.com on this episode's blog. But first, let me give a little trigger warning, because if anyone listening has misophonia and really struggles with any kind of crunching, chewing, breathing, slurping sounds, this will be a trigger for you. I'm going to play her video in full, but this is really, really helpful content. And so if that's you, I would recommend maybe even muting the video and watching it with subtitles because you're not going to want to miss out on what Sweet Hannah has to say. Her insights, her awareness, her descriptions, all the things are solid gold here. So proceed with caution. See if there's a way you can modify or adapt things to be able to increase access. But I do want to give you guys a little war. And because it's part of her process, I am not going to be editing. All right, so we're going to start off with the safe food for Hannah, and you're going to hear how she's coupling the safe food with another food that she has struggled with to see if that helps. Also, I want you to keep in mind the structure of these exposures. She really is a food detective. So you're going to hear how she visually inspects it, smells each food before trying it. She's going to take a total of three bites every single time, which we'll have more on that later. And she describes the taste and texture. So she's really using so much of her sense data to evaluate the food And I love this because whether we realize it or not, all of this goes into eating, along with the physiological process of chewing, moving food physically through the mouth, swallowing, and then she ends every video with giving her suds score. Suds, which we use in the OCD world as the well stands for subjective units of distress. And it is a rating to express, to give some of that self monitoring. As Dr. Raven talked about earlier how distressing this practice was. So for Hannah, A1 would be like the hardest, most miserable, most distressing, scary thing ever. And a 10. That's as good as it gets. Yummy in the tum. Mm, good. Okay, so let's listen to Hannah in her own words, trying her safe food.
- [72:23]
C
Today I'm going to be trying Nutella pretzel sticks. Usually I don't try new foods on the weekend, but I saw these at the store yesterday, and they looked really interesting, and I really wanted to try them. So far, I've tried a lot of things with Nutella, like the breadsticks, the cookies, and many more. And so far I haven't liked any of them yet. But since I really love pretzels, I. I hope I'm gonna like these. They just smell like pretzels and Nutella. Here I go. These are. These are so good. I can't stop eating them. The flavor of salt mixed with Nutella is so good. The texture with the crunch and the creamy is so good. I rate these a 10 out of 10, and I'm adding them to my seafood list. My mom always jokes around and says that all my safe foods are foods that are really hard to find in the store. If you haven't tried these yet, I highly recommend them, like, and follow my ARFID journey to see me try new foods.
- [73:53]
A
Love it. All right, first off, get it, girl. Second off, mom, I feel you. I stand in tribute. It is so tricky already feeding our R fed warriors. And then at certain times, like, the one thing they'll eat is really hard to get or the stores stops carrying them or whatever the thing is. And you're like, I need this, but I love it. And Hannah, way to be working on the weekend. I love that. So she usually takes a break. Then again, I love that idea of really limiting. It's not like every single time is going to have to be an exposure. We need our breaks. But she was like, I am so motivated, and it was such a natural, pure motivation that she's like, you know what? I'm doing it. I'm doing it. These look good. I want to Try it. And she was hopeful, she was excited, which is so, so awesome. But to top it off with a new safe food. So the pretzels were already safe. Now we have the addition of the Nutella. I mean that's amazing for a prospective family. I think I saw from grazing through Hannah's channel that she's in third grade. Don't quote me on it, but I think third grade was what she said. And third graders are typically between 8 to 9 years old. So if we think about this, the guideline for those info sheets that you might get at a well child appointment for 8 to 9 year olds say that kids between 8 and 9 years old should comfortably eat anywhere between 50 to 100 plus different foods across all categories, meaning fruits, veggies, grains, proteins, dairy and snacks. But when we look at our research based clinical measure like the NIAs or the nine item avoidant restrictive food intake disorder screen, say five times fast, we find that kids with ARFID may eat fewer than 10 to 15 safe foods total with rigid preparation requirements or maybe only certain brands permitted. So it's not like all chicken nuggets. It was the McDonald's chicken nuggets. And you might think, but a chicken nugget is a chicken nugget. Nay, nay. There are different textures, crunch, flavor, density, spices, the chewiness of the chicken, 100% white meat versus a blend, potential sogginess of the breading. All of this and so much more are highly impactful for the eater, even if they feel pretty similar to you. So I love that Hannah actually enjoyed Nutella for the first time. And not only that, but it's now being added to her safe food list. She had had it with some other things that she didn't like, but now she's realizing that she does like it after eating it with her safe food. So we can even think of how we faded in the Nutella and made just a little pivot. I love that she scored it a 10 out of 10. And I'm gonna tell you those tens are pretty rare. And to that end, it's not required or even necessary that every food experience gets to a 10. But when you have an eating disorder like ARFID, having a 10 out of 10 experience with a new food is so special. All right, so Hannah gave us a great example of what a 10 looked like for her. Now I'm going to pick a random video. She has a number of different videos her trying different foods and we'll see how it goes. We'll see what she comes up with. And again, I'll link this over on the blog if you want to watch that as well.
- [77:16]
C
Today I'm going to be trying a bagel with butter. I like my bagels warmed up instead of toasted because when they're toasted, the color changes and the texture also is changed. I also don't like condiments because they change the flavor and texture of foods. My mom cut it up in little pieces because I have a wiggly tooth and it's really hard for me to bite into things. Smells like a normal bagel. Here I go. It's not something that I like, but it's also not something that I don't like. But the thing that I don't like is the butter on my fingers. And the thing that I like is the it has a lot of flavor still and it's not dry. I rate this a similar 6 out of 10. I think I still prefer my bagels plain without butter, like, and follow my orphan journey to see me try new foods.
- [78:52]
A
All right, so I like how she described the color and the texture changes depending on how the bagel is eaten or prepared, as well as the feel and even, say, the butter residue on her hands. All of this data is being absorbed when she's eating, so she's helping to break it down. And she's doing it so mindfully. And this helps fam because it can create then that cognitive feedback loop. When we are able to slow down the process and pump the brakes to recognize what we liked, what we hated, and everything in between, it helps to reinforce the learning in the brain. So what can Hannah learn from this experience? Well, she might like the flavor, right? And she likes the bagel not being so dry, but that buttery feeling on her hands. Mmm. Not her favorite. So maybe next time if she's interested in trying this again, she could use utensils like a fork and a knife to keep that greasy texture of the butter from getting on her. Or maybe she thinks, you know what? I like it when the bagel has a little more flavor and isn't so dry with a condiment. But that butter felt too greasy. So maybe next time I can try a different condiment and see if I like it. When we think back to the first exposure example, we heard that that worked well for her when it came to the Nutella. She had tried Nutella with other pairings, and it just. It wasn't her thing. She didn't give up on it. She continued to try it in different ways, but once she tried it with the pretzel sticks. The combo was a 10 out of 10. So that cognitive feedback loop was really, really helpful because she was able to determine, here were some of the good things, and here are the things I didn't like. And now we can make these little pivots to try an approach again.
- [80:41]
D
I love it.
- [80:42]
A
And that's why a lot of us OCD practitioners will also pair this kind of cognitive feedback skill with something like ERP exposures, because there's a treasure trove of learning available with with each practice we try. Okay, so now we're gonna go to our third and final example with sweet Hannah regarding a feared food.
- [81:02]
C
Today I'm gonna be trying sweet peas. I've tried snow peas and sugar snap peas, and I really didn't like both of them. So today I decided I was gonna try sweet peas without the pod. Smells like a chunk of, like, grass with dirt. Here I go. I can't believe I just did that. I never thought I would be able to do that. It tastes like grass with bits of dirt. The one thing that made it really hard for me is that the first bite was crunchy, and then the second bite was mushy, and then the last bite was crunchy again. Since the texture changes every time, it makes it really hard for me to know what to do expect. I'm glad to say that this is going off my fear food list, but I don't think I'll be eating these again for a long time. I rate these a 4.7 out of 10 like and follow my arfid journey to see me try new foods.
- [82:28]
A
She's the sweet pea, isn't she? Oh, my gosh. She's the best. The more I hear, the more I love Hannah. I. I think that's. I'm gonna guess we're all kind of in that camp right now. But what's so, so good and makes my therapist's heart smile is that she touches on some really important points. So she hasn't loved peace. This is a different yet another type of pee. And if you could see her sweet little face or jump on over to the channel and watch the video, I mean, she's already, like, going into it with doubt written across her face. But to me, that gives her all the more credit for trying it and facing it. Because she already knows she's probably not gonna like it. Which for a person with arfed, is only going to amplify the fear or distress around facing this food. Second, I think this video points out why the three bite approach is so very Helpful. So first, I'm gonna let her explain why she does three bites and why that matters to her because it's just the absolute cutest and best. But then I'm going to add in one more point I've learned as both an Arfid parent and an OCD practitioner. So let's hear from Hannah first.
- [83:40]
C
Today I wanted to tell you guys about why I do the three bite rule. Usually when you try food, you're supposed to try 8 to 12 separate times. The reason why I do the three bite rule is because on the first bite, it's really shock. So you need to give it a safe shot. On the first bite, Mr. Arfid is really loud. On the second bite, Mr. Arfid quiets down a bit, but he is still really loud. By the third bite, Mr. Brain tells Mr. Arfid to quiet down so that he could focus on the flavor that he's eating. Whenever I'm trying a new food because I'm so anxious, it's really hard to go into a positive mindset. After every bite I take, I get less scared and I know what to expect. Expect. And it's easier to hear Mr. Brained. It's really hard to take the second and third bite if I really don't like a food. But because I know what to expect, it makes it a lot easier to eat the food again. When I take three bites, it shows me that I can be brave and overcome my fear. You should try to do three bites too, so you can feel like a superhero. Like me. Like it. Follow my Arfid journey to see me try new food.
- [84:49]
A
I mean, I dare you not to smile. Yes, you are a superhero, Hannah. And you see, fam. I mean, I. I could have summarized why she does the three bites, but it's too good. You have to hear it from her. But I also love that she externalizes her Arfed as Mr. Arfed. You heard earlier. She starts before any exposure. She draws a picture of Mr. Arfed and throws it in the trash. He goes to Antarctica, and what that represents is throwing him far, far away. So I like that she's separating out me doing this from Arfid doing this. It's a helpful skill. We do it with OCD and a number of other things, too. Externalizing that piece can be so helpful. Okay. And then her description reminds me a bit of almost like a wise mind approach from dbt, where she both honors the feeling or the reaction of shock and maybe even sometimes the horror of facing this new food with a rational, thinking brain that she expects this to decrease in intensity with each bite. I love it. Because. Did you also notice how she described the texture changing? You guys, this right here is why a lot of fruits and vegetables are hard for people with arfid. Because just think about it, if eating is already a challenge for you and you have something like the sweet pea here, in Hannah's case, knowing what to expect or how to manage expectations is so important. But with fruits and veggies, it can be really hard to gauge. In her case, the first bite was crunchy grass with bits of dirt in it, as she described, and then the second bite was mushy. So if we're thinking from the three bite rule, okay, that first one's gonna be a shocker. And then the second one isn't anything like the first one, but it's the same food from the same pea pod. That's confusing. And then the third bite, back to crunchy again. It's unpredictable. And just like our OCD warriors, the strive for certainty is real for our ARFID warriors. So the fact that it changes from bite to bite, maybe even from the same pea pod, is hard. And for the sake of example, let's think about how this might look in fruits, too. Take a container of strawberries. Have you ever rinsed and prepared strawberries, taken a bite and thought, oh, goodness me, these are so sweet. Oh, yum. But then you grab another strawberry, you take it from that container, and you sink into it, anticipating that super juicy, super sweet strawberry, and it's sour. Now, here's the thing. Me, as a non arfid individual, I actually like tart fruit as well. But if I expected that bite to be sweet and it was tart, that's definitely not my favorite. It's jarring, it's dysregulating, it's unpleasant. So now we apply this idea of the inconsistency and surprise to an arfid warrior that's already fearing, panicking about food. No wonder trust gets broken. They can't count on this food tasting the way it should taste, because the taste is all over the place. Place. On that note, this is why brand specific foods sometimes are trusted. Like, again, our example before was the McDonald's chicken nugget, because the chicken nuggets or tenders or whatever across different manufacturers or even different restaurant chains are prepared differently, may be cooked differently, may have a different texture or coating, maybe a different size or color. And to a non arfid warrior, you might think, I mean, a chicken nugget's a chicken nugget, but it really isn't. And to an ARFID where that attention to detail comes down to whether or not they feel safe and survival. So I love that she was able to explain the differences in her sweet pea so well because I think it's helpful and informative for the rest of us as we continue to hopefully illuminate why this data is so important. Additionally, I love that Hannah didn't love this food, but still got to celebrate the win of taking sweet peas off her feared food list. You don't have to love the food for it to not be feared anymore. You can not like it and not fear it. Similar to OCD warriors doing ERP exposures around obsessional content. The point isn't perfection with your suds score no matter what, or doing something no matter what until it doesn't bother you anymore. It's not a realistic goal. Like Dr. Raven said earlier, you're probably always going to be a picky eater. There's probably going to be things you don't like about it. But just like I was saying at the top of the show, one of those key differences between picky eating and something functioning within ARFA is you can still tolerate it even when it's picky eating. That's very, very different than fearing the food. So she didn't love it. She scored it a 4 7. She's like, it's close to half, but I can't. I can't with the half. So 4 7. We. We see you, Hannah. No worries. But she also learned that, you know what, even if I don't like it, even if I still have some distress, I don't have to fear it anymore. And now she feels some industry and autonomy and she can have a choice. She can opt out and say, oh, I don't want that. No, thank you, I don't need to try it. Instead of going, I could never.
- [90:09]
D
Right.
- [90:10]
A
So good work, Hannah. You absolutely should be proud of yourself. I think I can speak for us all when I say we are proud of you too. You did a great job. Intrusive thoughts. All right, fam. So as we wrap up these examples and our learning about arfid, I typically try to dedicate some time at the end of each episode in my Intrusive Thought segment to figure out a practical application of how we can apply what we learned today into something useful for us. And for this, I'm going to turn back one more time to sweet little Hannah and her sweet courage. Because I couldn't say it better myself. So listen up.
- [90:50]
C
Today I wanted to talk about the importance of getting uncomfortable. To be comfortable. Everyone prefers to stay in their comfort zone because in their comfort zone they feel safe and they know what to expect. It's always easier to do things that we know and are comfortable with because it won't bring us any anxiety in trying something new. But if we don't do things that are hard and uncomfortable, we're missing out on a bunch of opportunities that can help us learn and grow. Imagine yourself at a sleepover at your best friend's house. What if they don't have an extra mattress or an extra bed for you to sleep on? You would have to bring a sleeping bag and sleep on the floor. You're going to be pretty uncomfortable at first, but then if you stay in that position for a long time, then you're going to get very comfortable and you will fall asleep. When I started this journey, I was really uncomfortable with trying new food. But now every day I'm getting more and more comfortable with trying new foods because I'm doing it over and over again. I'm learning that the more I face my fears of trying new foods, the less scared I am to do it. Last year I did a speech on Georgia o' Keeffe and I wanted to share with you guys one of my favorite quotes by her. I've been absolutely terrified every moment of my life and I've never let it keep me from doing a single thing that I wanted to do like and follow my orphan journey to see me try new foods.
- [92:11]
A
It's so good, Anna. My gosh, there is so much freedom available in getting comfortable with being uncomfortable. It's not fun. But being able to face that unlocks new learning and new possibilities. So whether you have ocd, arfid, another ocrd, you and your loved ones, you know how small our worlds can get and shrink. That's when you start missing out on those sleepovers or those restaurants or the travel or going anyplace that doesn't have a working kitchen. Holidays become distressing when a disorder becomes the governing authority over our lives. But there is hope, fam, and facing the distress in service of your values. Maybe a sleepover in Hannah's case, or that date for Dr. Raven's client. Or maybe even being able to have that business lunch and land that well deserved promotion because you weren't too afraid to face the plate in front of you. There is freedom in getting comfortable with being uncomfortable. So thank you Pham for joining us. As we learned about arfid and again I'm going to link Feast as well as Hannah's YouTube channel and Instagram account all the resources and details, research etc that we've discussed in this episode over@ OCD familypodcast.com but I'm wishing you all well family as we go into the holidays and and I welcome you to come back next week too because we are having a special return guest in Dr. Anthony Pinto and he is bringing some special guests with him as well as we raise more awareness and hope for OCPD warriors and families. Because just like Hannah taught us, just like her mom taught us, just like our warriors teach us, we are better together. Thank you for joining me and our OCD Family community. If you enjoyed what you heard today, please like and subscribe to the OCD Family Podcast wherever you enjoy your podcast. Did you find this content helpful? Please consider leaving a review. The more people that know they're not alone, the better. For more information regarding today's podcast, please visit ocdfamilypodcast.com and remember to join the email list while you're there. It will provide you with the most up to date information, resources and the download on the family chatter. Oh yeah, nothing says family like taking a page from Hannah Lee and spreading hope for all to see. That's right, I went there and you can too@ocdfamilypodcast.com hey practitioners, if you're looking to deepen your understanding of obsessive compulsive related disorders, check out the OCD Training School's amazing course catalog on emetophobia, what to do when you have co occurring eating disorders and OCD and process based therapy for BFRBs. Plus tons of OCD trainings and self help courses. Add that many of the trainings are APA, ASWB and NBCCCCE eligible with both live and on demand options. I mean say less. So head on over to ocdfamilypodcast.com courses to learn more because when you use my special link you will be supporting the POD at no extra cost to you. So let's get to learning family because we are better together.