Overview of Eating Disorders^[1]

Eating disorder (ED) symptoms include disturbances in eating behaviors that significantly impact someone’s health and wellbeing, spanning disorders with restrictive patterns (e.g., anorexia nervosa, bulimia nervosa) to liberal patterns (e.g., binging eating disorder; Morgan et al., 1999). In the United States, body weight receives much attention in health promotion, as 19.3% of children and adolescents ages 2 to19 years old were considered obese (i.e., a body mass index at or above the 95th percentile), in 2017-18 (Fryar et al., 2021). While health promotion is meant to increase quality of life, fixation on weight management or fear of gaining weight can lead to problematic feeding behaviors. This childhood fear of gaining weight is not a new phenomenon, with the literature pointing to youth being afraid of being fat or wanting to be thinner (Collins, 1991; McNutt et al., 1997; Gustafson-Larson & Terry, 1992). As such, it is crucial that clinicians are well-versed in ED etiology, symptomology, and treatment. Three of the most common EDs are bulimia nervosa (BN), binge eating disorder (BED), and anorexia nervosa (AN).

For those experiencing bulimia nervosa, a behavioral pattern emerges in which an individual eats an objectively large amount of food in a discrete period of time (e.g., less than two hours) while experiencing a sense of loss of control overeating (American Psychiatric Association, 2013). This is then followed by a purging or compensatory behavior to prevent weight gain. Common examples of compensatory behaviors include inducing vomiting, misusing laxatives (Spielman et al., 2020), and engaging in excessive amounts of exercise. These episodes of binging and purging must occur, on average, at least once a week for three months to meet full criteria for BN (American Psychiatric Association, 2013). Additionally, individuals with BN may demonstrate an overvaluation of shape and weight, especially as it relates to self-esteem. Symptoms of BN also include a fear of gaining weight or strong desire to lose weight.

Binge eating disorder (BED) is characterized by consuming quantities of food that are larger than what most people would eat in a short period of time, relative to what others would eat under the same conditions (American Psychiatric Association, 2013; Devlin, 2016) coupled with a feeling of a loss of control over their eating. (American Psychiatric Association, 2013; Devlin, 2016). Other symptoms may include eating much more rapidly than normal, eating until uncomfortably full, eating when not hungry, eating alone out of embarrassment, and feelings of guilt or shame after binge eating (American Psychiatric Association, 2013). BED shares similar clinical features with BN, without the compensatory behaviors to “undo” the binge episode.

Lastly, anorexia nervosa (AN) is characterized by the fixation towards and maintenance of a low body weight through caloric restriction and/or purging behaviors, (e.g., starvation, excessive exercise) (Spielman et al., 2020). Additionally, those with anorexia nervosa commonly display traits of perfectionism or rigidity (Jacobi et al., 2004). Distorted body image is also common among individuals with AN (e.g., they may view themselves as overweight even though they are not; Spielman et al., 2020). Two subtypes of AN are as following: the restricting subtype, which involves severe restriction of caloric intake and/or excessive exercise; and the binge-eating and purging subtype, which involves severe restriction along with recurrent episodes of binging and/or purging behaviors. Given the similarities between BN and AN binging/purging subtype, the DSM-5 differentiates these two disorders by body mass index (BMI) of the individual affected, with BN as the diagnosis if BMI is average or above average (American Psychiatric Association, 2013). However, treatment for these two disorders is often similar, depending on symptom overlap and severity.

As we saw with the case illustration of Sammy, she was demonstrating symptoms and behaviors indicative of anorexia nervosa binging/purging subtype, as she was highly perfectionistic, restricting her caloric intake and engaging in excessive exercise. Occasionally, she would engage in purging behaviors, though her BMI was below average. While she did not report wanting to fit an “ideal” body type or standard, she did report wanting to manipulate her body to be as fit as possible.

Prevalence of Eating Disorders

Lifetime prevalence of AN for youth aged 13 to 18 was 0.3%, with an identical prevalence for both males and females (Swanson et al., 2011). With BN, there is a lifetime prevalence of 0.9%, with a greater prevalence in females than males (Swanson et al., 2011). BED has a lifetime prevalence of 1.6%, with a greater prevalence in females than males. The study by Swanson and colleagues (2011) was a national study that also brings to light the unmet treatment need for these youth, as a small amount of those with the disorder will actually get specific treatment for the disorder. This unmet need is alarming as eating disorders have the highest mortality rate of any psychiatric disorder (van Hoeken & Hoek, 2020 b), and there are strong associations of eating disorders with other psychiatric disorders and suicidality (Swanson et al., 2011).

Eating Disorder Development in Youth

The biopsychosocial model, which is nested within our developmental systems perspective, points to different pathways or contributing factors in the development of an eating disorder. Biological factors include heritability of the disorder (Mitchison & Hay, 2014), and for individuals with eating disorders, there can be dysregulated serotonin levels (Jacobi et al., 2004), pointing to bio-psychiatric aspects of the disorder. Regarding life course, the age of onset varies but tends to peak during adolescence (Jacobi et al., 2004; Mitchison & Hay, 2014) with females between the ages of 15 and 19 being most at risk (Mitchison & Hay, 2014; Spielman et al., 2020). This could be in part to the developmental pressures on this age range, explained by various social factors.

Social factors tend to be a default explanation for the development of an eating disorder, often pointing to cultural standards of beauty and social acceptability. The extant literature points to potential precedents to the development of an eating disorder that include family factors like perceptions of parental acceptance and rejection, low parental support, low peer support, and psychosocial impairment (Stice & Van Ryzin 2019; Jacobi et al., 2004; Mitchison & Hay, 2014). These factors may contribute to the pursuit of a thin-idealization by the child, whereby they judge themselves against what they think is the cultural standard and attempt to lose weight to conform to that standard in hopes of gaining social acceptance (Stice & Van Ryzin 2019). With eating disorders, it can be difficult to tease out whether factors are what lead to the disorder onset or if they are the secondary effects of the disorder.

From the social perspective, early reviews show a higher prevalence of disordered eating with females (Jacobi et al., 2004; Mitchison & Hay, 2014) and claims about ethnicity can be hard to determine (Jacobi et al., 2004), with one review noting that ethnicity does not appear to have strong associations with eating disorders (Mitchison & Hay, 2014). This could be in part due to the variance in cultural standards and how culture relates to an individual’s perception of their physical and mental health (Assari & DeFreitas, 2018). Related to mental health, it is common to see childhood factors, such as overly anxious traits or anxiety-related disorders (e.g., social phobia, OCD; Jacobi et al., 2004). Adverse life events, in particular sexual abuse victimization, is a common risk factor (Jacobi et al., 2004).

Developmental Systems Considerations for Eating Disorders

At first glance, Sammy appears to be struggling with normative developmental worries for an adolescent—especially in the context of her hobbies (e.g., soccer) and identity (e.g., goal-driven, high-achieving). Some may say these are problems of affluence, but as we see in the literature, this is not the case (Assari & DeFreitas, 2018; Gibbons, 2001; Gard & Freeman, 1996). Eating disorders comprehensively demonstrate how external systems (e.g., societal standards) can influence the development of emotional problems. Weight stigma and fat phobia are cultural phenomena that may lead to discrimination and stereotyping someone based on their weight or shape. The effects of weight-based stigma are further complicated by the prevalence of bullying, which may be associated with disordered eating (Copeland et al., 2015). Further, adolescents have even greater access to one another with the rise of social media and technology, potentially increasing access to social support, as well as cyber-bullies, as we saw with Sammy.

In treating a child or adolescent with an eating disorder, depending on the child’s unique needs, clinicians should seek to include parents, teachers, guidance counselors, physicians, dieticians, and anyone else relevant to holistic needs of the patient. Biological systems are imperative to consider because of the physiological processes related to weight loss and the mental models that accompany such physiological changes. There is behavioral reinforcement each time she steps on a scale or engages in “body checking” behaviors. Further, macro-based interventions focusing on dissemination of anti-bullying and anti-weight shaming programs in a variety of contexts (e.g., schools, hospitals, etc.) are crucial for providing accessible psychoeducation on disordered eating. Lastly, bullying or other social factors related to eating disorders point to the disruption of social networks for children (Copeland et al., 2015), which can lead to isolation and hopelessness. For Sammy, providing culturally supportive and affirming care, coupled with increasing her connection to the Black community, may improve her treatment outcomes.

Experiences Across Race and Ethnicity. It is crucial to consider racial/ethnic identity in the identification, treatment, and conceptualization of eating disorders. If conceptual models of disordered eating are constructed with white females as the standard, clinicians may miss clinically significant symptoms from youth of other races and genders. Recent research findings suggest no significant differences exist between racial/ethnic groups in the prevalence of sub- or full-threshold eating disorders (Cheng, et al., 2019; Mitchison & Hay, 2014; Solmi et al., 2016), meaning that these challenges affect individuals across racial/ethnic groups, not just White women. As such, screening measures should seek to be culturally relevant and consider cultural-specific barriers to seeking treatment. One review found that ethnic minority participants may be less likely than White or European-American participants to seek treatment for eating disorders (Regan et al., 2017). As such, it is crucial that clinicians thoroughly assess for disordered eating in these populations and address barriers to receiving treatment accordingly.

Experiences of LGBTQ Youth. The Minority Stress Model (MSM) posits that individuals with sexual and gender minority status could be at increased risk for developing negative mental health sequalae (Meyer, 2003), such as eating disorders, due to a variety of distal (e.g., discrimination) and proximal (e.g., identity concealment, internalized homophobia/transphobia) stressors (Park & Herringer, 2020). One survey suggests that approximately 54% of adolescents identifying with the lesbian, gay, bisexual, and transgender (LGBTQ) community have been diagnosed with an eating disorder, with approximately 21% reporting they have had an eating disorder at some point in their lifetime (The Trevor Project, National Eating Disorders Association, & Reasons Eating Disorder Center, 2018). Treatment considerations should keep in mind that risk factors related to the MSM differ by LGBTQ subgroup (Park & Herringer, 2020). Unique strengths should be identified and utilized in treatment, as research has identified multiple protective factors (e.g., self-compassion, social support) against disordered eating among LGBTQ youth (Rainey, et al., 2018; Watson et al., 2017). Further, clinicians should not only assess for disordered eating psychopathology but also contextual and social factors which may be impacting or maintaining symptomology (Parker & Harriger, 2020). Youth with intersectional identities (e.g., gender, sexual, and/or racial minority status) may warrant the development of culturally relevant and individualized treatment methods.

Assessment

In the treatment of ED, it is critical to evaluate for medical complications that are associated with frequent caloric restriction and/or purging. Importantly, there is no one look to individuals with eating disorders. Though body mass index (BMI) is an important piece in the assessment for disordered eating, it is not enough alone to determine eating disorder presence and severity. For example, individuals with BN are more likely to be about average or slightly above average weight (American Psychiatric Association, 2013) and may be overlooked if a clinician does not assess for other key features of eating disorders.

For patients who engage in purging behaviors, medical complications may arise such as menstrual irregularities, cardiac abnormalities, dental degradation and complications, problems with the esophagus and stomach, and irregularities with electrolyte balance (Mehler et al., 2010). For those with anorexia nervosa, it is common to see issues with bone density, alongside cardiovascular, pulmonary, muscular, gastrointestinal, and neurological complications due to the physical effects of malnourishment. Notably, patients of this disorder often die from medical complications related to cardiac health and dysfunction.

Binge eating is typically seen in youth who have depressive symptoms, larger weight fluctuations, and dissatisfaction with their weight (Devlin, 2016). In assessing for binge eating disorder, clinicians must distinguish between objective and subjective binge episodes (OBEs and SBEs, respectively). OBEs consist of eating objectively large amounts of food in a short period of time while experiencing a feeling of loss of control overeating. SBEs consist of eating a portion of food that is subjectively large to the individual but is not an objectively large amount of food. Gold-standard screening measures, such as the Eating Disorder Examination (EDE; Fairburn & Cooper, 1993), are useful to help parse apart these two binge episodes and determine if this criterion is met in the diagnosis of BED.

Because it is a neurobiological disruption to the reward system in the brain related to eating, a clinician can ask questions like, “Do you feel worried when you have to eat or eat in front of others?” Eating is aversive and anxiety producing; restricting or purging is rewarding. A follow-up question then to ask, “how do you feel when you don’t eat or if you purge after you do eat?” A clinician can ask parents about mealtimes and what they observe in their child during shared meals. Family dynamics and social relationships can sometimes unintentionally contribute to the maintenance of an eating disorder but only within the context described above. Cross-disciplinary collaboration is key as well, and questions to ask medical providers include “What was the historical growth curve for this child?” This can help with seeing previous patterns and establish a future benchmark to determine weight goals.

Intervention

The treatment of EDs requires an interdisciplinary team that includes a mental health clinician, a dietitian, and medical provider (American Psychiatric Association, 2006). In respect to the cognitive aspects of the disorder, therapy will focus on the primary thoughts and behaviors (e.g., restriction, purging) as well as how these behaviors impact family and social relationships, as well as overall functioning (American Psychiatric Association, 2006). ED prevention programs can be helpful with disseminating psychoeducation for common symptoms of eating disorders, such as the idealization of thinness, body dissatisfaction, BMI indicators, eating behaviors, and eating-related emotions and cognitions (Stice et al., 2013). Programs conducted in schools with multiple sessions have demonstrated increased effectiveness in reducing future eating disorder onset (Stice et al., 2013). While there is research about what works for treatment, barrier to seeking and receiving treatment is gatekeeping, which, in the context of EDs, involves the held belief that an individual (whether self or someone else) with an ED is not “sick enough” or “thin enough” to warrant serious treatment or attention. Clinicians should be mindful of and address these barriers when discussing treatment options with their client.

In treating AN, it is recommended that the client receives a combination of psychotherapy, nutritional rehabilitation, and medical monitoring (American Psychiatric Association, 2006; Linardon et al., 2019). For youth requiring more intensive medical services, the primary and initial focus will be on rehabilitation of the body (American Psychiatric Association, 2006). Higher calorie refeeding has been seen to reduce days of inpatient treatment (Garber et al., 2020). For those who are not medically compromised, the level of care can range from inpatient programs to partial hospitalization to outpatient programs (American Psychiatric Association, 2006). Weight gain is a core part of treatment, which is a major barrier among individuals with EDs seeking treatment. In inpatient recovery, patients are observed during mealtimes and are not allowed to restrict, binge, or purge. Patients are giving up control over the type and amount of food they are consuming, which can change their weight and shape. It makes sense, then, why individuals with EDs may be ambivalent about receiving treatment, as it would involve losing perceived control over their bodies. Providers should be aware of something known as refeeding syndrome, a metabolic problem that can be fatal (American Psychiatric Association, 2006; Garber et al., 2020), in which someone who is malnourished consumes too much food too quickly, and the body has difficulty digesting it, causing other medical problems.

Cognitive behavioral therapy has been the recommended therapy for eating disorders (Linardan et al., 2017). Third-wave behavioral interventions such as Dialectical Behavior Therapy (DBT) and Acceptance and Commitment Therapy (ACT) have yet to show the same efficacy as CBT for eating disorders. However, there is promise of their use in prevention programs (Linardon et al., 2019). Motivational interviewing can be a key part of therapy as well, as motivation is a key predictor of change for individuals with EDs (Wade et al., 2009).

Clinical Dialogues: Working with a Family in an Eating Disorder Program with Amy Mack, LCSW

Sean E. Snyder, LCSW: To start, Amy, how does someone enter into the world of treating eating disorders? It’s such a specific area.

Amy Mack, LCSW: What drew me to the CHOP position was not so much that I had eating disorder experience, because I didn’t. I had family therapy experience, and our model of treatment at CHOP is family-based treatment. It was a fit for me practice-wise, and then I became competent and well-versed in the eating disorder specialty.

Snyder: I appreciate hearing those clinical stories too, because it can be hard to know what you’re passionate about until you do the work. So, it seems you had some foundational skills, and as you worked with eating disorder cases, you built a passion and a specific skill set.

Mack: I always try to highlight that I did take a hiatus for a number of years and had three kids and then was able to really return to the field and have a good job. I feel that’s something as a woman that is important for readers to hear. You can make it work for yourself professionally.

Snyder: Absolutely, it can take some creativity to sustain the work as a helper. Thanks for sharing your background.

Let’s pivot now into your world at CHOP’s eating disorder program and start with engagement. It’s interesting for eating disorders because it’s so medically complex; there’s many psychological layers, and in practice, I’ve seen youth have multiple psychological assessments before they finally land in the right spot with an eating disorders clinic. Given all that, what is it, then, for you when you come in contact with these families? What is it to engage with them, and what are some strategies that you use to join with them?

Mack: The families that make their way to the CHOP eating disorder program typically have early onset restrictive eating disorders, so we’re catching it in the first year or two of diagnosis for the most part, which has the best outcomes. Across the specialty, if you can intervene early and quickly, you can have good results. When we get them at intake, families are typically very stressed, very overwhelmed, and scared. For some of these families, the diagnosis of anorexia nervosa is out of left field. Parents feel very guilty, thinking “how did I miss this?”

Sometimes parents can be in denial, based on their own experience with eating and weight stigma. You never know what’s going to walk in the door. Sometimes a family is “we’re all in, we’re all on board, anything you say we will do.” But then other times, it takes a ton of psychoeducation and a ton of hand holding and support to really help them understand what’s happening to their child. Plus with the complication of the medical piece alone, a lot of our kids end up in the hospital for medical stabilization, which is not the same as inpatient eating disorder treatment. It’s medical stabilization, and then they will either discharge to our outpatient program or sometimes kids need more than what we can offer, so they’ll discharge to programs outside of CHOP.

So, if a patient and family—I am in the field social work, I hate calling them patients, but in the world of CHOP we call them patients—so when a family, because we only treat the family, it’s a family-based and evidence-based treatment model called family-based treatment which is not structural family therapy. It’s a manualized treatment protocol rooted in both understanding the neurobiology of anorexia but also rooted in some family systems theory. Our program is influenced by the family-based team model; we don’t follow the evidence-based practice by the manual, but it’s influenced by that model.

Sometimes parents will come in having done some research and understand that this is a family-based treatment model. Our early sessions with families are really around supporting them, to understand the diagnosis, then collaborating with the medical team to get the kids out of the acute medical crisis. Then, the behavioral health component continues from there, but when we’re first meeting families, it’s really about getting them stable. I always say, “If you had a hole ’n the boat, you wouldn’t spend a ton of time trying to explore why the hole got there… you’d want to get to shore, and then we do that work on the other side.”

Snyder: When we meet with our patients or clients, everybody has a unique circumstance, but it sounds like especially with eating disorder patients, there’s so many different things going on. How do you prioritize tasks in treatment?

Mack: It’s so confusing to families that the treatment is weight restoration first and therapy later. Parents think, “Wait, this makes zero sense!” But there’s neurobiological elements to anorexia. The reward system in the brain gets very malfunctioned, so there’s no insight and no ability to have an insight-oriented therapy session with a kid. I don’t know if you guys are familiar with the term anosognosia, but it’s basically a word that means that the person with the illness doesn’t realize how sick they are. It’s a common phenomenon with people with schizophrenia. People with anorexia can have anosognosia, where they say “I’m fine, I don’t know what’s wrong. It’s you guys that all have the problem.” Therapy doesn’t work when someone’s in that place mentally, so the work with the family is really coaching the parents on the front end to help their kid with the core part of treatment for anorexia. The only treatment for anorexia is that the child has to gain weight, and bottom line, kids don’t want to do that. They’re terrified of it, so it’s hard with the first couple of months of treatment being no fun at all.

Snyder: Right, these youth know all the tricks and all the things that are going to cause them to gain weight, even with medications that can help them manage their mental health.

Mack: It’s really helping parents manage their own distress because when their kid is upset, and they have to make them do something that makes them very upset, that’s really hard for parents. Our engagement with parents is a lot of validation for the parents, lots of education about behavioral theory like ignoring what you don’t want to see repeated, labeled praise for when someone’s doing something well.

Snyder: It seems like there are so many things to juggle. Where do you start? I know you said medical is the emphasis of treatment, but I’m wondering about family systems and the core family processes that we have a little more of a hand in shaping (we aren’t medical providers, so we don’t have a direct hand in that treatment). With family systems, guilt and blame can emerge from a very painful experience for a child and family. Is that or other particular types of psychoeducation that you start with families?

Mack: We come from the family-based treatment model which has a very agnostic view on causal factors, so we don’t care, or it doesn’t matter how someone got an eating disorder. We know that it’s an energy imbalance within the body that activates a genetic vulnerability in the brain, so the old theory of an overbearing mom or a kid that wants control is not the present-day theory about the development of an eating disorder. Parents come in thinking those old theory things. There’s a huge stigma around eating disorders because of those old views of what causes it, and it’s a very misunderstood illness. People without the present-day understanding of it tend to say, “Well eat, it’s simple.” A lot of the psychoeducation around blame and parental thoughts like, “How did I miss this?” is really validating for the parent, that is that eating disorders are a pernicious illness that can come out of left field. You could be the most helicopter parent in the world and still miss this disorder. It’s really helping parents to understand that there is no blame, nobody did something wrong or caused this to happen. Now, we’re going to get ourselves out of it.

Snyder: That almost like other types of mental illness, where parents are asking themselves, “where did I go wrong?” and really, it’s the developmental systems at play that produce these emotional problems for kids. It reminds me of what you said earlier; we don’t have to worry about how the hole got in the boat, let’s try to plug it up, get to the shore where it is safe, then take care of the details later.

Mack: It is remarkable how the brain is really healing, and this healing affects the rest of the body. The origin of it is in the brain, and once the brain is healing with restored nutrition, a lot of those why questions tend to subside. Once the crisis settles down, the parents may care less about wanting to figure out how it happened; the process of recovery resolves those questions for them. For some kids, once their weight is restored, their energy is restored, and they’re bouncing back.

Snyder: How much do you engage with family together versus child and parents separately?

Mack: The sessions are ideally with both caregivers, and we have to be mindful that people have jobs or family structures are different, and everyone cannot be there at all times. We don’t do any individual therapy.

We have the kids present, but it is mostly geared toward supporting parents. Initially kids will have opportunities to talk and participate, but it’s not unusual to hear screaming and crying and yelling from our patients because they’re acutely ill, and the intervention is no fun for them. My goal as a clinician is to develop rapport with the whole family, and most often, I can get the kid to buy-in to liking me. Every once in a while, there’s a kid that’s says, “I freaking hate you,” and that’s fine, but having that rapport with the family unit is key. It’s not until later in treatment that the kid become more involved. This may sound harsh, but their opinion doesn’t matter early on because it’s usually not in line with treatment goals, and we are talking about a very lethal disorder.

Snyder: The child wants to maintain starving themselves or intense exercising or whatever it is to maintain that dangerous weight.

Mack: Yes, and the child will say it’s not fair. From a developmental standpoint, I talked about this with parents, that a family treatment model in which parents make decisions for them causes  friction for a kid with an eating disorder that onsets during adolescence. This is a time where kids want independence and they don’t want their parents telling them what to eat, but that’s what you have to do in our intervention. The parents are going to run the show for a little while, and the bulk of the friction is kids feeling resentful that their parents are all up in their business.

Snyder: Eventually, there is the transition to the child becoming able to be in charge of their own eating, right?

Mack: There are three phases of family-based treatment. Phase one is weight restoration, where parents have autonomy over meal choices, activity choice, activity involvement, etc. When a patient’s weight is restored either all the way or most of the way, we start shifting autonomy back to the kid to make age-appropriate, independent decisions around food. If the kid never made dinner, we’re not going to now have the kid making dinner for the whole family, but they can chose their own snacks, chose their own breakfast, lunch, or whatever food with oversight by the parents. Phase Three is full transition to the pre-illness functioning, where the child can be age-appropriate and engage socially again. We want them in age appropriately managing their own self-care stuff. The course of this takes probably 12 months.

Snyder: It sounds like a gradual release of responsibility to get the child stable and giving the adequate level of support to the parents. And the course of an episode of care has different levels and types of supports (e.g., nutritionists, medical professionals like doctors or nurses). I’m interested now to learn more about how behavioral health fits into it all specifically, for instance, when you’re doing your intakes. When you do your assessment, is it more from a family systems lens? Is it focused on symptomatology and functioning, considering that you do have one slice of this youth?

Mack: We have a very structured intake process which does include a medical/adolescent medicine piece, a dietitian piece, then we’re the behavioral health piece, so we do a very standard biopsychosocial assessment. In the mental health diagnostic world, we would say someone has anorexia, whereas in the medical world, they get a malnutrition diagnosis. The anorexia diagnosis is the behavioral health piece, so we’re assessing for the criteria that if it’s in the DSM. I keep saying anorexia because the majority of our patients have anorexia, and we don’t really treat bulimia or binge eating disorder. Most of the kids we see have a restrictive eating disorder.

In getting started with an assessment, I say to the kid, “I imagine you’re not super psyched to be here today,” and they will say, “Ugh, my mom made me come.” Given that, I open up with, “Tell me in your words: what got us here?” What I love about family treatment is that there’s always a story, and inevitably the family tag-teams the creation of it. There’s a lot of very common stories there, like, “Well, I was in health class and the teacher was talking about sugar, so I wanted to cut out my sugar and then it spiraled from there.” I had a very interesting case recently where the kid has a specific phobia of vomiting. Her fear of vomiting was causing her to restrict what she was eating. The brain doesn’t know the difference; the brain doesn’t know if you cut your sugar or if you’re afraid of throw up or if you grew five inches and didn’t gain any weight, the brain doesn’t know the difference, and if you have the genetic vulnerability to developing the disorder, it doesn’t matter how what led to the weight loss or the energy imbalance. It’s that it happened, so we have to sift through the story.

When it’s clear that there’s enough criteria for anorexia nervosa, then we know that this family team model is the gold standard in treatment. We try also to get a sense for family structure, family function, school. The visual in my head is school, family, friends. School because that is the natural setting for youth, friends because those who set social norms, and families because they are central to treatment. We need engaged caregivers that can work well together. Siblings matter as well because the whole system is affected by the illness.

It’s important to note that fear of gaining weight is just a fear; having such thoughts doesn’t mean anorexia, but you have to show through your behavior that you’re not supporting your own growth and development. A kid could say I don’t care about gaining weight, but if they’re not eating enough at each meal, then that’s the behavior that leads to disorder.

Snyder: I think you bring up the idea with the fear and the phobia. It’s making me think of things that generally overlap with other conditions, and I’m thinking OCD. I’ve seen this with folks with anorexia; they’ll do body checking behaviors. It’s like a compulsion after the obsessional thought about their body image, so it almost seems like OCD. Or addictions even, features of repetitive behaviors that have a negative impact on the person.

Mack: There’s a huge overlap. It’s interesting sometimes parents will say I think my kid has OCD because of all the issues around eating. That’s mainly anorexia, but OCD and anorexia overlap frequently. The perfectionist trait can be a psychological vulnerability. With substance use and eating disorder, it’s worth noting that these both have genetic factors, so it’s not surprising to see overlap in how the behaviors manifest.

Snyder: What about within race and ethnicity? Or socioeconomic status even? Do they affect the presentation of this disorder?

Mack: This illness does not discriminate across socioeconomic factors, across races ethnicities. What is particularly interesting is cultural expectations, values, standards, even ontologies. For example, I have had a couple Chinese American or Chinese students whose parents immigrated from China. One of these students came to Philadelphia to go to one of the private schools outside of Philly. They lived with a host family, and the child developed anorexia and was hospitalized. The parents flew from China to America to do a family-based treatment. Using an interpreter, I was trying to explain what anorexia is. Eating disorder is not a diagnosis in China; there’s not even a word for it. So yes, there are some cultures that do not name eating disorders.

Regarding the aesthetics piece, there’s a misunderstanding that social media or, in previous generations, looking at magazines causes eating disorders. It’s certainly a systemic factor but those factors again don’t cause eating disorders. The thin ideal and messaging is a social context, but again, at the end of the day, anorexia is caused by an energy imbalance in the brain.

Snyder: Culture as context for sure. What’s interesting, though, that despite our knowledge of eating disorders in our culture, structured assessment tools seem few and far between. Does your team use specific tools or use certain progress tracking instruments?

Mack: We have an eating disorder behavior scale that our kids take at the beginning of treatment, and they take it once a week for six weeks. It’s easy for kids to misrepresent themselves on that, so that’s why we do it for six weeks to establish a baseline, then we do a treatment outcome rating too. We also look at depression scales because a lot of times kids that are malnourished have low mood symptoms. These can resolve with renourishment but also they may not which is whole other diagnosis. We also look at a parent accommodation, and that scale measures how much does a parent accommodate for the distress of the illness. We want to see that decrease over time, so the parents are involved in our measurements. It is critical to address accommodation behaviors by parents, because that is shown to be a driver of prolonged illness.

Part of our data tracking is to align with what research has established; if a kid can gain four pounds in the first four weeks of treatment, prognosis is better for full recovery. So, in addition to behavior, we track weight. We know that the physical body heals much more quickly than the brain; a youth can have their vital signs normalize very quickly, fortunately, but their brain lags behind in recovery. They may end up stabilizing medically in a very short period of time where we are able to avoid acute issues like cardiac arrest, but the youth is still showing a lot of eating disorder behaviors. That can be very frustrating for the kids who will mention, “Well, the doctor says I’m fine, why can’t I go run five miles?” It’s really our job to really manage the behavior piece, but obviously the physical piece matters and goes hand in hand.

Snyder: That’s so interesting that the brain recovery lags behind and is not recovered as soon as the body is physically stable.

Mack: The reward center in the brain has misfired repeatedly, and we have to repair it through behavioral intervention which takes a long time.

Snyder: To recap, on the medical side, they’re tracking with malnourishment, and anorexia is the behavioral component, so it makes sense to really focus on the behaviors themselves. That’s what is going to lead to a fuller recovery on a holistic level.

Mack: I have this visual pie chart that I call the recovery pie, and every piece of the pie is equal in size, and the pieces include weight, vital signs, return of your period if you’re female, decreases in anxiety around eating, increased flexibility with eating, decreased eating disorder behaviors (which could include breaking your food up into little pieces or hiding food) then return to activity while maintaining weight. and return to socially appropriate relationships. That’s eight slices, and they’re all equally as important as the other. Somebody can be weight restored and have their vital signs stable, but outside of the home it’s too stressful. Just having vitals back to normal is not going to help you in the world, I always say to kids, “If you want to go eat pizza with your friends, if you want to go to college and live in a dorm and socialize (which tends to involve eating), we have to work on this stuff.” It’s all connected and impacts functioning on so many levels.

Snyder: Throughout all your responses, Amy, we have been getting a flavor of what intervention looks like. You showed us the phases of treatment, about family work like caregivers accommodation behaviors, the domains of intervention. Are there specific techniques that you use in working in the family-based model?

Mack: My systemic family therapy skills really take center stage. I’m picturing a scenario where you have a mom and a dad that don’t get along, and each one is trying to align with you against the other. There’s a lot of structural skills that you want to use, even so much as how you set up the room in person, where maybe the mom and dad have to sit next to each other and the kids sits next to you. In that instance, you’re really trying to foster an alignment between the parents who are hierarchically over the kid for now. A lot of times you’ll have families come in, and the kid plops themselves right between the two parents which literally splits them.

In terms of micro skills, it’s a lot of reflective listening; it’s a lot of validation. It’s a lot of being curious, with our reflections and statements “It seems like this; this is what it sounds like to me; am I hearing it correctly?” There’s a lot of sessions rife with troubleshooting around the intervention not seeming like its working, and it’s problem solving with the family; what should we do? It can be helping them dissect the problem and then helping them come to it themselves or sometimes they need direct direction. Most of the time, its’s helping them use their own strengths, too. Come up with ideas that work in their system. Problem clarification is huge so that the family can be empowered to understand what the problem means to them and can mobilize their own strengths to resolve it.

There are times where you’re the expert (and I’m sensitive because these families have so many specialists working with them, and they receive that expert opinion) so you’re sharing the expertise of behavioral treatment for eating disorders. Being strength-focused is key, where it is the notion of recovery.

Snyder: The systems perspective is critical, because there can be feedback loops that the family can’t get out of or don’t know they are in. It’s a matter of clarifying that in a strength-based way to help get them unstuck.

Mack: Thinking of systems, people getting into the work of eating disorders and family work need to get comfortable with chaos. Our job isn’t to make things calm all the time; it’s to help the family reorganize patterns of behavior that work for them. That is not a neat and tidy process

Snyder: Now, I love CBT, but I’m thinking that this model is less about cognitive restructuring or purely teaching parent management skills. It is behavioral in the sense that if we change family behavior and restructure the family environment, change happens, but that really comes from a family systems approach. The thought processes change if we can change the family process, if the child can get medically stable as you mentioned, where the low mood resolves with renourishment.

Mack: There is definitely room for more traditional CBT or DBT, where you may teach skills. There’s also something called cognitive remediation, which is a therapeutic approach that’s addressing inflexibility. A lot of kids with anorexia innately are very rigid, so we have groups in our Intensive Outpatient Program called “Brain Gym,” where we look at those drawings that have two images depending on how you view it (the vase or the faces example). I’m learning how to explain something in a different way, and we have them pretend that there’s an alien here explaining how you make a Spotify playlist. Seems simple enough but sometimes they can be so detail focused that they miss the big picture, or vice versa, and we’re trying to infuse some flexibility. So all in all, we have a multimodal approach to treating eating disorders

Snyder: It really does come back to that holistic pie you have in your head; we need to address these different aspects of recovery and our interventions need to match those needs.

We are nearing the end of our time, Amy; any parting words for our readers?

Mack: I would encourage clinicians to be confident. You are working on a multidisciplinary team with their own priorities for treatment; you’re working with resistant children, and you have to manage chaos. So be confident in your training, in your protocol, and be that steadying force for the family. It can be scary for some of our young clinicians to manage all of those competing demands, but you learn by doing, and in order to do it, be confident and trust your clinical judgment and your supervision. You never know what’s going to walk in the door, so we need to be in a good place in order to serve the families where they are at.

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