Editor's note: This text-based course is a transcript of the, Adolescent Eating Disorders And Occupational Therapy Podcast, presented by Lindy L. Weaver, PhD, OTR/L, and Dennis Cleary, MS, OTD, OTR/L.
- After this course, participants will be able to:
- Distinguish between three common eating disorders: anorexia nervosa, bulimia nervosa, and binge eating disorder.
- Analyze how eating disorders can impact occupations and mental and physical health among adolescents.
- Apply knowledge of the functional impacts of eating disorders among adolescents to occupational therapy practice.
Dennis: Hello, everyone. My name is Dennis Cleary. I'm a senior researcher at Cincinnati Children's Hospital, and I'm happy today to be joined by my good friend, Dr. Lindy Weaver. Dr. Weaver, do you want to tell us about yourself and some of your background related to adolescent mental health and eating disorders?
Lindy: Thanks for having me today. My primary practice background over the last 12 years has been in child and adolescent mental health in various settings. I've been on the residential and the inpatient side for much of my career. I've also worked in a partial hospitalization and intensive outpatient program for adolescents with eating disorders. I spend much of my time in the academic setting, teaching about mental health and pediatrics in an OTD program.
Dennis: What program is that, Dr. Weaver?
Lindy: I am in Columbus, Ohio, at The Ohio State University.
Dennis: I've heard good things about that. Do you also work clinically with adolescents with eating disorders?
Lindy: I've spent several years working part-time at our local children's hospital, one of the primary service providers for young people with eating disorders in our area and beyond. I have worked less recently due to COVID and my third child's birth, but I enjoy working with this population.
Dennis: They recently opened a larger hospital. Do you want to talk about that? It's exciting that we have some growth in occupational therapy and mental health right now.
Lindy: Absolutely, especially here in Ohio. The Nationwide Children's opened up its behavioral health pavilion in 2020. I don't know the exact numbers, but they are one of the country's largest pediatric and adolescent mental health centers. They serve young people and their families across the age range from pre-K through high school. The program is also for young adults under their care before adulthood. They service young people and their families for partial hospitalization, intensive outpatient programs, and community and school-based outreach.
Dennis: How many occupational therapists are there now?
Lindy: They have a wide array, but I believe there are probably six to eight occupational therapists.
Dennis: Can you talk about eating disorders and the different types, especially in adolescents?
Lindy: An eating disorder is a broad term in the DSM that encapsulates various conditions, including some of the ones you may encounter in developmental pediatrics. There are eating disorders such as PICA or selective/restrictive eating that you might see in the autistic population. Eating disorder is an umbrella term that includes binge eating disorder, anorexia nervosa, bulimia, and a few others, but those first three are the common ones that impact our adolescents into adulthood.
Dennis: Could you define these disorders a little more?
Lindy: We hear the most about anorexia and bulimia nervosa and their impact. Binge eating disorder is the most common in the US, but we'll start with anorexia as it is more commonly known. A wide variety of symptoms often characterizes anorexia, but the common ones are a preoccupation or an intense focus on food, weight, and certain types of nutrients. For example, they may restrict calories or avoid specific food groupings like carbohydrates or fat grams. Anorexia is extreme dieting and weight loss. There are changes in behavior like control of or avoidance of food. It is also not uncommon to see a withdrawal from friends or their typical activities. They spend a lot of time focusing cognitively on the presentation of one's body. Anorexia nervosa has some of the highest health implications due to restrictive eating that can result in a low heart rate, bone density loss, and heart issues.
Bulimia nervosa is similar in that they may have disrupted eating patterns, but episodes of binge eating characterize bulimia. Binge eating is consuming a large quantity of food in short periods. What distinguishes bulimia from binge eating disorder is that individuals engage in compensatory behaviors to offset the binging episode. It could be using laxatives, purging or self-induced vomiting, or engaging in intense exercise. They try to burn off additional calories.
Binge eating disorder is characterized by consuming large volumes of food in short periods without those compensatory behaviors. In the DSM, there are many other qualifying factors, including duration, intensity, and other co-occurring things.
Dennis: Are these disorders prevalent? It seems we go through periods where we hear a lot about these on the news.
Lindy: This compiled data is from the National Eating Disorders Organization. Approximately five million-plus individuals are experiencing an eating disorder in a given year, which at any given point is less than 1% of young men and women. However, it is also thought that this might be a bit of an undersell as to the exact number.
There was a study in 2010 where they followed about 500 adolescent girls from ages eight to 20. They found that about 5% of those girls met the criteria for anorexia, bulimia, or binge eating disorder during that period. When they included non-specific eating disorder symptoms in that study (ones that weren't DSM-specific criteria), they found that about 13% of the girls experienced an eating disorder by age 20. Thus, it is hard to categorize, but it impacts many people. Depending on the eating disorder or the presentation, some individuals probably go unrecognized for an extended time.
Dennis: You mentioned gender differences. Are there specific issues around gender, age, sexual orientation, race, or ethnicity that come into play?
Lindy: That is an excellent question. I quoted one study that only mentioned young girls, but it's important to note that eating disorders impact boys and men across the board. Statistics show that eating disorders are lower in males than females; however, some of these differences may be explained by a stigma that males don't have eating disorders. This is not unlike some of the stereotypes that come along with other mental health diagnoses, where young men or boys may present a little differently. Eating disorders may not be recognized in the same way in males and females and may be underreported.
I worked with a group of kids that had a few boys. Even the young girls experiencing intensive eating disorder symptoms had stigma towards the boys in the group. "My eating disorder presents this way, but you probably want to be more muscular, not thin." The young boy replied, "No, my disorder sounds very similar to yours." The girls were surprised as they thought the boys would experience it differently than they would. This perception was fascinating to me.
Eating disorders affect every gender, age, sexual orientation, race, socioeconomic status, et cetera. It doesn't discriminate, but I think that was one of the significant issues that have come up in my practice. There's also some stigma around this prototype of what a particular body would look like if it were experiencing a specific eating disorder. For example, if a person's body isn't overly thin, they must not have anorexia. Conversely, someone with a larger body or higher weight is thought to have an eating disorder. In either instance, this is not necessarily true.
Dennis: In high school, I had some good friends that were wrestlers, and they exhibited many of the aforementioned diagnostic criteria that they were demonstrating at that point. There are now many restrictive diets that are being encouraged, like intermittent fasting, and nutritional advice appears to be all over the place. I am sure some dieticians in your school where you teach may have an opinion on this. Can dietary recommendations get mixed in with these issues around eating disorders?
Lindy: There are multiple layers within the diet culture, especially in Western societies like the US. What can happen is that an eating disorder can go masked or well-accepted because it can fall within what is deemed as the social norm around healthy eating. Someone with an eating disorder may just appear conscious of what they are eating, and a moral value is attached to that in our society. Thus, an eating disorder can go unrecognized for a long time. One example is a young person who becomes a vegan or a vegetarian, which is socially acceptable and conscious. However, for this individual, it may be a way for them to restrict certain food groups. Similarly, there can just be overfocusing on food that improves heart health or joint mobility. These are examples of how an eating disorder may be confused with healthy behavior.
Another diagnosis that I don't have quite as much experience with but might be helpful for you and our listeners to know is orthorexia. Orthorexia is an obsession with proper or healthful eating. This diagnosis goes beyond the person that's very health conscious. They can have rigid and inflexible thoughts about food and eating.
Dennis: Are there diagnoses that often co-occur with eating disorders?
Lindy: Yes. The big one is anxiety which often proceeds an eating disorder diagnosis. Depending on the specific disorder, anxiety disorders are in the 10 to 40% range. There is an understanding that anxiety drives the eating disorder with particular thoughts and behaviors, and the maintenance of an eating disorder can be explained by this anxiety. Depression and obsessive-compulsive disorders are also common. There's a lot to be learned about eating disorders, particularly in young people. Did one diagnosis come first? This is harder to say, but they do often co-occur together.
Dennis: Is there a typical age of onset for eating disorders? Can it start in adulthood?
Lindy: Eating disorders can occur across the lifespan, from childhood even into older adulthood. Onset can begin at any point in life. Many of the disorders we're talking about today have some onset in adolescence, as early as 9 or 10 years of age. I tended to see young adolescents in the 12 to 16 years old range. But, we can see patients as young as six and seven to 18 and 19 years old in a pediatric setting. In girls, symptoms might start earlier related to some social factors that might influence eating disorders.
Dennis: Some of the people listening will be working with people with eating disorders. We may come across individuals in public schools, other settings, or even children in our own families. What are the types of characteristics we might see?
Lindy: That's an excellent question. I surveyed my students who had just come from their Level I mental health fieldwork, where most were in various settings, primarily working with adults. The survey asked, "How many of you have seen someone with an eating disorder?" All 49 of them raised their hands. It is common even in the adult population. I have even gotten some questions from other professionals working in sports about what to keep in mind. Each disorder looks a little different; some things may be socially acceptable or look like typical behavior. You mentioned wrestling, where dropping weight is not unusual. I think the biggest thing to look for are changes in the young person's behaviors and statements, particularly around their bodies, food, and movement. You want to watch how they interact around meal times. Are they leaving the table very quickly after a meal is consumed and gone for some time? Does that look like a pattern? Are they going to take a run immediately after they eat? Is there an intense focus on food, weight maintenance, or weight loss? Is it sort of different than what it was, or does it seem like they are in distress if they cannot engage in that exercise pattern? You want to look at the flexibility piece. Are they compelled to do something every day, above and beyond the norm? I've heard families mention that the young person used to enjoy going out after Friday night football games with their friends and getting ice cream or going to dinner, but now they have stopped. There is a lot of socialization around food, so they may want to stop attending. There may be high weight fluctuations, whether up or down. Other physical indications, like fatigue, emotional lability, irritability, or sadness, may indicate that their nutritional status is not as balanced as it should be. Sometimes, these are typical changes in adolescence and not quite at the threshold of an eating disorder.
Dennis: I know every situation will be slightly different, but if you're a treating therapist and you suspect someone on your caseload might have an issue, what do you recommend?
Lindy: Every young person is a little different, and I think you're right. If you have a relationship where you have the opportunity to engage with that young person, that's what I would recommend. Is there a private time to approach them and say something like, "I've noticed that you're not sitting with your friends at the lunch table anymore," or "I've noticed that you haven't been packing a lunch?" You can try to engage with them. I'm not saying that the young person will come right out and say that they've been restricting their food or engaging in compensatory behaviors. Still, you are opening the door to learning a little bit more. You may find out that maybe there's a food insecurity situation going on at home. That's something different from an eating disorder, but it is imperative to ask. They may open up that they are under some pressure with a sports activity or something else. They may dismiss the suggestion that anything is wrong, but you have a least initiated the conversation.
If you are working on a team or with other individuals, you can also ask if they have seen anything. For example, you can ask a classroom teacher if they have noticed a behavior change or have any concerns. Gathering this information can be trickier to navigate in your personal life, whether it's someone in your own family, a neighbor, or a friend. Often, adolescents may be close with a parent of a friend or someone else and may disclose to that person that they are having issues. This information may then get relayed to the adolescent's parents. There are many pathways for those disclosures, but it's about being as nonjudgmental and curious as possible. What's happening and driving the behavior?
We carry a lot of our stigmas around this behavior. Again, the dieting culture and eating healthy is prevalent. We may also think, "Why can't you just fix it?" These are challenging disorders, so being nonjudgmental and learning as much information as possible is crucial.
Dennis: You mentioned the best "Ted Lasso" quote, "Be curious, not judgmental."
Lindy: Did I steal that quote? I also use some of the language from mental health first aid training. It is all about listening to a person nonjudgmentally.
Dennis: When in doubt, go back to "Ted Lasso." When I was growing up (I am a little older than you, Lindy), we didn't have social media. Does social media play a role in eating disorders?
Lindy: There are some social media and digital impacts on eating disorders, and I am sure there are many studies. For example, fitness trackers can reinforce some of the obsessive or compulsive behaviors around movement or exercise, calories, et cetera. There is also rampant posting about health supplements, workouts, and food. I probably could survey at any given time my friends and see many on some health journey or diet. Again, dieting can be healthy and normal. However, during adolescence, individuals are figuring out their identity and doing social comparisons with others. Seeing people look a certain way or engaging in different physical activities can add a lot of pressure. Some social media accounts are dedicated to facilitating and reinforcing eating disorder behavior and other types of self-harm. For most of our young people, it's about the preoccupation with and putting a value on particular body types. What's beautiful? I remember getting these subtle messages from TV shows, magazines, ads at the grocery store, et cetera. Our young people are getting bombarded with that message 24/7. There are many subtle and implicit as well as explicit ways that social media can play a role in eating disorders.
Dennis: I know a local occupational therapist that works in adolescent mental health. One of the first things they do when folks come into inpatient is they take their phones, or their phones don't come with them. She said it's very soothing for them not to have access to their phone, and it reduces stress levels for some. Is that something that you've seen?
Lindy: For many young people, there can be an initial increase in anxiety over not having a connection, as there are many positives to tech and social media avenues. However, I have also seen the freedom even in adults from not having the pressure of constantly checking their phones and seeing those images.
Dennis: Eating is an occupation that we're doing three to five times a day, depending on the advice that you're following. I would think this would make it harder to diagnose and treat.
Lindy: Yes, it is interesting as eating is essential to our existence. It can make treatment challenging depending upon the severity level of the illness, but it involves intervention in a much broader scope. This is why many young people are engaged in family-based care. Often young people are dependent on their families for shopping and meal preparation, so there is an oversight and understanding that needs to occur with the whole family unit. You can imagine how challenging that might be for family members to take days off of work and come together to support someone's treatment. This intense type of support is often not feasible for many families due to logistical challenges and sometimes the need for ongoing supervision in more severe cases. You are also trying to break some of the ingrained eating disorder thoughts and behaviors to help them occupationally function better. It is not the same as other maladaptive disorders like substance use. You are trying to get the person to stop using the substance as part of the recovery, but in an eating disorder, the pathology is around food which is again necessary. It's not just about getting them to eat again or differently but also helping them figure out ways to cope and engage in that occupation.
Dennis: I see how that could be challenging. From a scope of practice standpoint, what are the types of things you will do as part of your evaluation and treatment?
Lindy: Some of our focus is determined by the other folks working on the team, what makes the most sense to divide within your particular skill sets and the level of collaboration. Research shows that there has been an underutilization of OT. In addition to weight restoration/stabilization and regaining appropriate eating patterns, it is about restoring the physical elements of the individual's life. Many patients say, "How do I live my life again?" or, "How do I find meaning and pleasure in leisure activities?" They also must figure out how to prepare food and eat socially again. Many have to reintegrate into school and other activities.
The main areas I work on, sometimes with a dietician, are meal prep and planning while helping them deal with anxiety. I have set up practice activities like mock sleepovers with pizzas or going out to a restaurant. A little less common might be working on a client with bathing and dressing. Most of my clients are not physically or cognitively limited in their ability to do those activities. Still, they may have body image issues or challenges that must be addressed. I've had some that have neglected their hygiene because they didn't want to touch or see their bodies. Working on distress during ADLs is something we've done.
Finding enjoyable activities is another critical area. These individuals have spent much of their time maintaining their eating disorder and have done little else. We may have to educate them about movement and exercise as this has been restricted during the initial treatment. We want folks to reengage in activity in a healthy way. They may have been a track star but now cannot do that while in treatment, so I can help them identify other meaningful activities.
Dennis: You talked a little bit about inpatient and outpatient. Can you talk a little about how that occupational therapy role might differ based on those two settings?
Lindy: Inpatient is more intensive with increased supervision around eating. We focus on initial stabilization, meals, and the cognitive therapy piece driving thoughts and behaviors. As they get a little bit healthier with their eating patterns and develop coping tools, we can begin talking about leisure and activities. Outpatient treatment provides less supervision as they are managing their eating disorder better. We may start to look at socialization and community integration. It's all dependent on the severity of the illness and the stage of recovery.
Something to consider is that a young person coming into intensive care like inpatient or a partial hospitalization program probably are under or malnourished in a significant enough way that their brains are not working particularly well. Processing high-level thoughts and making choices may be complex. Remember what their brains and bodies can take as you layer in different activities.
Dennis: Does Nationwide help a student transition from inpatient to outpatient and work with the school?
Lindy: Absolutely. The program at Nationwide is similar to other pediatric programs in Ohio. Not many care options are available to young adolescents and adults with disorders. Families often travel across the country to go to treatment programs, particularly more intensive ones. At our hospital, there are three program levels with a lot of coordination that happens between inpatient, partial hospitalization, and intensive outpatient. These teams meet together and decide what level of care is appropriate for the client. Some young people will go back to their local communities for outpatient care if they're not close. Many private practitioners, notably medical dieticians, do a lot of private eating disorder care, but the team will help with that transition. The Nationwide program has a school teacher that helps clients keep up with school and help them to reintegrate. As mentioned earlier, there is also some family involvement due to the age group.
Dennis: Are there issues getting occupational therapy covered to work with this population? It is probably going to be very dependent on the setting.
Lindy: You have tapped into my lowest level of expertise here. In my program, we didn't bill for individualized services because we were lumped into a per diem charge.
Dennis: So you are saying the insurance base X amount of dollars per day. In that case, we need to advocate to the medical director about the value of occupational therapy services.
Lindy: Absolutely. We have had good luck in this area. Our administrators see a lot of value in our services. Our program also has massage therapy to help the clients relax. I have not seen this service provided anywhere else. We had a person that solely worked on coverage for the clients. It's a challenge sometimes because insurance companies do not think you are sick enough. What does sick enough look like? Often, these individuals have significant mental and physical health concerns but don't meet the criteria for insurance.
Dennis: Many times in mental health, our services are covered as part of the room rate. It is vital, especially in training hospitals, to ensure that occupational therapists have a decisive role. We love our recreation therapy friends, but we must ensure that our scope of practice is unique and different. For example, one of the OTA listserves showed a rec therapist working on ADL goals in a mental health setting. We need to be strong advocates for our profession to ensure that the services we provide continue to be at a skilled level of care.
Lindy: Absolutely. Different states have specific criteria and billing for qualified mental health providers.
Dennis: Could you talk about some of the challenges of working with some of these patients?
Lindy: One thing I already touched upon is the cost both in terms of time and money for the families. There is also a lack of resources and programs. Even in our program, the wait lists are incredibly long. These are not disorders that can wait, unlike a cavity at the dentist. Thus, not being able to access that care can be scary and challenging.
There are a couple of things that I have found personally challenging. There is sometimes a misperception that these young people aren't ill or aren't having challenges as they might present typically. They're talking and laughing, and it's different than you'd expect. There can be some subtleties around how this illness looks. You have to be open to challenging your belief about what the condition looks like and not underselling or overestimating them. If I had met some of these clients in a different setting, I might have thought they were doing well. However, when you see them at a meal or talking with their families, you see a different side.
You also have to challenge your stigmas around eating and weight. I had to relearn and investigate if I had a healthy relationship with food or any preconceived notions. I started noticing that during a typical dinner out with friends, the conversation revolved around good food, bad food, calories, et cetera. It is a big challenge not to bring these thoughts into the clinical setting.
Dennis: What do you find rewarding about working with this population?
Lindy: I find working with young people to be rewarding across the board, particularly the adolescent population. There's more neuroplasticity, and the eating disorder may be less ingrained. There is a lot of reward in seeing them tackle one of the hardest things in their life.
I mentioned comorbid diagnoses, how many of our young people have experienced trauma, and the many family dynamics that come with that, even in the most well-functioning families. I appreciate how brave they are and what they do every day is motivating to me. They are often fun, creative young people.
Dennis: Gotcha. Yesterday, I saw one of my coworkers and her daughter. As the mother is an oversharer, I knew the daughter had an eating disorder in the past. She seemed to be doing well. Can you talk more about where occupational therapy practitioners can find more information about this population besides OccupationalTherapy.com?
Lindy: You will probably see these diagnoses across settings from the adolescent child through adulthood. You are more likely to work with this population in a mental health setting. Eating disorders are a fascinating intersection between physical function and mental health as they are deeply entwined. In mental health settings, we have to have the skill set to understand their thoughts and how they drive behaviors. Most hospitals have a program, and community health agencies specialize in eating disorder treatment. You can approach them for more information. There's a program here at The Ohio State University, and a capstone project is another excellent way to learn about this practice area. I could also see an OT partnering in private practice with a dietician or another discipline.
Dennis: You are also a huge advocate for first aid mental health training. Correct?
Lindy: Absolutely. I'm a youth mental health first aid instructor. This is a great way to gain more insight into mental health and ways to support a young person who is in crisis.
Dennis: Dr. Weaver, thank you so much for your time and expertise on this subject. We're always trying to find new resources to learn about new practice areas.
Lindy: There are some excellent OT chapters in some of our textbooks. Additionally, the National Eating Disorder Association website is beneficial to friends, families, and practitioners. There's even a spotlight somewhere about someone who went on to be an OT. There is lots of cool stuff out there. Thanks for having me.
Dennis: Have a great day, everyone.
Please refer to the outline and handout.
Weaver, L., and Cleary, D. (2022). Adolescent eating disorders and occupational therapy podcast. OccupationalTherapy.com, Article 5513. Available at www.occupationaltherapy.com