Juliet is a 16-year-old female who was admitted to the hospital due to chronic abdominal pain, nausea, early satiety, and significant weight loss/malnutrition. She has a long-standing history of intermittent abdominal pain and anxiety and more recently has developed a fear of nausea or vomiting after eating. She denies any concerns about weight gain and reports wishing she could eat like her peers and gain weight.
Jonathan is a 7-year-old male who had a recent traumatic experience where he choked on a chicken bone during dinner. Since that time he has become increasingly afraid of eating most solid foods which has led to rapid weight loss over the past two weeks. His parents report that he appears highly anxious before meals and will often cry and yell when presented with food.
Eating disorder treatment programs and hospitals have long encountered this subset of patients who present with food avoidance and low weight but lack fear of weight gain or becoming fat, a core diagnostic criterion of anorexia nervosa. Under the DSM-IV criteria, the types of patients mentioned above would likely have been diagnosed with eating disorder not otherwise specified (EDNOS). Unlike anorexia nervosa (AN) and bulimia nervosa (BN) which are better defined and understood by providers, EDNOS was often more of a “catch all” category for patients who did not fit neatly into the AN or BN diagnostic criteria. In fact, the majority of patients presenting with eating disorder symptoms were given a diagnosis of EDNOS (Fisher,Gonzalez, & Malizio, 2015; Peebles, Hardy, Wilson, & Lock, 2010).
The EDNOS category was made up of a myriad of patient presentations. For example, EDNOS was a frequent diagnosis for patients with less severe or less frequent symptoms of AN or BN and also for patients with significant medical sequelae related to malnutrition from symptoms such as severe selective eating habits or fear of nausea/vomiting. Due to this range in patient presentation and symptom severity, EDNOS was sometimes perceived as less serious than other eating disorders. For patients like Juliet and Jonathan, this was simply not the case. In fact, there is evidence to suggest that patients with EDNOS were more medically compromised than patients with BN (Peebles et al, 2010) and had similar types of medical complications, although less severe, than patients with AN (Peebles et al, 2010; Strandjord, Sieke, Richmond, & Rome, 2015). Moreover, in a retrospective study Norris et al. (2014) found that almost one third of patients who met criteria for ARFID required hospitalization due to medical instability. Clearly further diagnostic clarification within the EDNOS category was called for and the DSM-5 sought to remedy this in part by further defining this subset of patients.
What is ARFID?
Avoidant/restrictive food intake disorder (ARFID) is defined as an eating or feeding disturbance resulting in failure to meet nutritional needs. This disturbance is associated with one or more of the following: significant weight loss or failure to gain weight as expected, significant nutritional deficiency, reliance on some type of nutritional supplement or enteral feeding, or significant interference with psychological functioning. A key feature that differentiates ARFID from AN and BN, is that the patient with ARFID does not exhibit, and there is no evidence of, concern about weight or shape. The DSM-5 goes on to specify that the eating disturbance cannot be due to lack of food or cultural reasons and is not due to another mental or medical condition. ARFID can manifest in children, adolescents, or adults but is most common in children (American Psychiatric Association, 2013).
Although this is a new diagnosis and much is likely to be discovered about prevalence, associated features, and treatment of this disorder, there is initial evidence regarding characteristics of ARFID. Compared to other eating disorders, patients diagnosed with ARFID tend to be younger, have been ill for longer, have higher rates of comorbid anxiety and medical conditions, and have lower rates of depression (Fisher et al., 2014). Also, a higher proportion of patients with ARFID are males when compared with other eating disorders (Fisher et al., 2014; Nicely, Lane-Loney, Masciulli, Hollenbeak, & Ornstein, 2014). In a recent study, Fisher et al. (2104) identified several common ways ARFID presented in their sample, including: selective eating (28.7%), generalized anxiety (21.4%), gastrointestinal symptoms (19.4%), a past history of vomiting or choking (13.2%), and food allergies (4.1%). Kurz et al. (2016) categorized patients with ARFID in a different manner but also found a high percentage of patients presented with selective eating habits. This study also identified patients with poor food intake related to an emotional disturbance (e.g., anxiety) as well as patients who avoided food due to some specific fear (e.g., choking) (Kurz, van Dyck, Dremmel, Munsch, & Hilbert, 2016). To date there has been one study examining ARFID in adults and there were some differences found from pediatric patients. Specifically, in this study patients with ARFID were all female and most had poor food intake due to emotional difficulties with a smaller percentage due to gastrointestinal complaints (Nakai, Nin, Noma, Teramukai, & Wonderlich, 2016).
Picky Eating vs. ARFID
It is important to note that selective or picky eating is fairly common, especially among younger children (Nicely et al., 2014). Children may avoid foods due to taste, smell, or texture and numerous parents have experienced a phase when their child only ate a select number of foods or refused to eat entire food groups. For many children this will resolve or children will still be able to meet their nutritional needs in spite of low variety of foods consumed. However, when picky eating results in failure to gain weight, significant weight loss, nutritional deficiencies, or issues with psychological functioning, then a diagnosis of ARFID is likely appropriate.
How Can I Tell if My Child is At Risk: Tips for Parents
Some of the reasons for disrupted eating patterns may be more straightforward for parents to identify than others. For example, ARFID symptoms are easier to detect when the child experiences a specific incident such as a traumatic choking episode or a period of vomiting that results in food avoidance and significant anxiety related to eating. Knowing when picky eating or gastrointestinal complaints with food avoidance cross the line into ARFID may be more challenging. The most tangible warning sign for parents is weight loss or lack of weight gain. Many parents do not regularly weigh their child but may notice that their child’s clothing has become baggy, they appear thinner, or they are not growing at a similar rate as their peers. As mentioned above, many children go through a period of picky eating which may be worrisome for parents. Fortunately, picky eating is not necessarily a problem unless it results in health issues or interferes with the child’s functioning in a significant way. When gastrointestinal symptoms accompanied by significant weight loss have been evaluated by a physician and found not to be due to an underlying medical condition, ARFID may be considered. Other warning signs include increased parental frustration that eating has become a “battle” due to their child’s anxiety about consequences of eating (e.g., nausea), narrowing of food preferences, or apparent lack of interest in eating. Parents also may be shocked to find that their child is hiding/throwing away food instead of eating it or not being truthful about the amount of food eaten due to the child’s anxiety about eating.
How Can I Tell if My Patient is At Risk: Tips for Physicians
Given the weight loss and potential medical complications associated with ARFID, physicians may be the first point of contact for these patients and their parents. Physicians may notice that a child has a persistently low percentage median body weight, has “fallen off” of his or her typical weight/growth curve, or that his or her weight/growth curve is trending down (Bryant-Waugh, 2013; Fisher et al., 2014). More specifically, examination of the child’s body mass index (BMI) will help determine if there has been significant weight loss, failure to gain weight, or failure to grow in height at the expected growth trajectory. However, other times clues may be less obvious such as slowly becoming increasingly selective with foods, decreased interest in eating, eating smaller and smaller amounts of food, increased gastrointestinal complaints or general somatic complaints (e.g., headaches, not feeling well, etc.) related to eating, or increased anxiety around meal times. Thus, when physicians notice weight loss or failure to meet expected growth, it is important to inquire further about a child’s feeding patterns, any changes in eating habits, and what seems to be impeding eating such as somatic symptoms or anxiety. Asking parents to bring in a food log or describe their child’s typical food intake can help physicians determine if nutritional needs are being met. Physicians should also look out for medical indicators of nutritional deficiency or malnutrition (Bryant-Waugh, 2013). Signs that indicate the need for hospitalization for medical stabilization include severe malnutrition, bradycardia, hypotension, hypothermia, orthostatic changes in heart rate or blood pressure, or acute food refusal (American Academy of Pediatrics, 2003; Peebles et al., 2010).
How is ARFID Treated?
Like other eating disorders, ARFID has potentially serious medical consequences and early intervention is important. When a child experiences weight loss or failure to maintain expected growth rate, it is important to consult with a medical professional to rule out any medical issues that may be causing the weight loss. This is especially true for children with gastrointestinal complaints accompanied with significant weight loss. Once possible medical explanations for the weight loss/failure to maintain expected growth are ruled out, early referral to providers who specialize in the treatment of eating disorders is recommended. Treatment of ARFID typically involves a multidisciplinary team including a mental health professional who specializes in eating disorders, a physician, and often a dietitian. Children with significant weight loss should be closely monitored for nutritional deficiencies, electrolyte imbalances, cardiac sequelae, and orthostasis throughout treatment. Some may initially require nutritional rehabilitation in a hospital or intensive treatment program.
Since this is a new diagnosis, few treatment studies have been conducted on the treatment of ARFID specifically. Fortunately, early case reports (Bryant-Waugh, 2013; King, Urbach, & Steward, 2015; Norris, Spettigue, & Katzman, 2016) and a recent pilot study (Sharp et al., 2016) have demonstrated effectiveness in treating ARFID. It also is important to remember that clinicians have been treating patients with ARFID for years, even though it was called EDNOS. Thus, there is a much larger research base on the treatment of feeding/eating issues that treatment providers can utilize when developing a treatment plan for a patient with ARFID. These include but are not limited to family-based treatment for AN (the Maudsley approach), cognitive behavioral therapy for anxiety symptoms, and behavioral treatment for feeding issues. Now that the diagnostic criteria for ARFID has been laid out, researchers can focus on tailoring existing treatment techniques to this population as well as developing novel treatments specifically for patients with ARFID.
One factor that appears to be key is matching the type of treatment to the presenting features. An essential first step is accurately identifying the reasons for poor nutritional intake. For example, a patient who is primarily not eating due to fears of choking would likely benefit from methods that have proven to be effective in the treatment of anxiety/phobias (e.g., cognitive behavioral therapy). For patients who present with sensory issues related to eating, behavioral techniques may be beneficial. A child with significant anxiety about gastrointestinal pain or vomiting after eating may benefit from the family-based therapy approach of parents taking responsibility for weight restoration coupled with individual therapy focused on anxiety management.
With the addition of ARFID to the DSM-5, this subset of patients with significant eating disturbance who lack concern about weight or body shape has been formally recognized. However, symptom presentations within this category are broad and range from children with a long history of selective eating to acute food refusal due to a traumatic incident involving food or vomiting. Parents and physicians should be vigilant for changes in weight or eating habits as well as chronic low weight/lack of growth and selective eating. Treatment should include medical evaluation for nutritional deficiency and malnutrition and close follow-up by a multidisciplinary team. It also is important to match the treatment to the reason for the eating disturbance. With proper evaluation and follow-up, the prognosis for patients with ARFID improves.
Mary is a 35 year old woman who is of normal weight. She frequently diets, going through bouts of restricting calories for a few days, and then binges on her “forbidden foods.” Mary constantly worries about food and calories, even when she is busy doing things she likes, like being in the company of friends or reading a book. Mary is worried she may have an eating disorder, so she tries to find more information online about what her diagnosis might be. She quickly realizes she does not meet criteria for anorexia nervosa (AN), bulimia nervosa (BN), or binge eating disorder (BED), which are the only eating disorders Mary has ever heard of. Mary feels confused and disheartened.
Does Mary’s experience sound familiar to you? If it does, you are not alone. Actually, Mary very likely does meet criteria for an eating disorder – OSFED. Other Specified Feeding or Eating Disorder (OSFED) is more common than the other, more commonly known eating disorder diagnoses, like AN, BN, or BED. In fact, in our outpatient eating disorders clinic in Boston, OSFED makes up about 25% of all diagnoses. Clinicians and researchers used to think of OSFED as a kind of subthreshold eating disorder (ED), but in fact research shows that individuals with OSFED have similar levels of impairment and share similar genetic risk factors to individuals with full threshold EDs (Fairweather-Schmidt & Wade, 2014). Our clinic frequently receives calls on our intake phone line from people of all ages, races, and genders who seek an evaluation, but who qualify their symptoms by saying “I am not underweight so I don’t know if I really have an eating disorder” or “I don’t binge every single day, so I’m not sure if this is really the right place for me.”
AN and BN are extreme examples of eating disorders, but are relatively rare, with lifetime prevalence rates at only around 1.7% and 0.8% respectively (Smink et al. 2014). Due to the media attention these disorders receive, some people with clinically significant eating problems (but who don’t meet criteria for AN or BN) may not realize that their symptoms, too, have a name. The often impairing and distressing symptoms that these individuals are experiencing are well deserving of clinical attention and we are always glad they called us for help.
Luckily, the newest (5th) edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) included an improved classification, featuring broader diagnostic criteria, for diagnosing eating disorders. For example, many individuals who normally would not have met criteria for AN or BN in the 4th edition (DSM-IV) would now receive such a diagnosis in DSM-5 (Quick et al. 2014). DSM-5 also improved on the criteria for OSFED. Where DSM-IV labeled eating disorders that did not fit into any category as eating disorders as “Eating Disorder Not Otherwise Specified (EDNOS)”, DSM-5 replaced this category with OSFED.
OSFED includes five specific example presentations. Atypical anorexia nervosa (OSFED-AA) is a type of OSFED that encompasses individuals who have a fear of weight gain and body image disturbance, but who are not underweight. OSFED – Purging disorder describes individuals who engage in purging but do not engage in bingeing, while OSFED – Night eating syndrome is likely appropriate for an individual who wakes up, after already having fallen asleep, and consumes a large amount of food. Two OSFED categories capture the symptoms of individuals who are both bingeing and purging (OSFED-BN) or just bingeing (OSFED-BED). But perhaps binge frequency isn’t as important in determining impairment; one study found that feeling a loss of control while eating, rather than binge frequency and size, is a better predictor of clinically significant binge eating (Vannucci et al. 2013).
Some individuals may be experiencing distressing eating symptoms or attitudes, but still might not fall into any of these categories. For these individuals, a diagnosis of OSFED-Other can be assigned. A 2014 study found that, among patients presenting for outpatient eating disorder treatment, two thirds would have been diagnosed with EDNOS in DSM-IV, whereas just over 1% had a diagnosis of Unspecified Feeding or Eating Disorder (UFED) in DSM-5, which is to be used when not enough information can be obtained in order to assign a more specific diagnosis. In our clinic, both OSFED-Other and UFED are becoming more rare, given the multiple broad examples of symptom presentations offered in the OSFED category.
So, overall, DSM-5 succeeded in adding specificity to various symptom pictures. Some medical professionals argue that OSFED categories may unnecessarily pathologize symptoms, like negative body image or dieting, that many individuals may experience to some degree over the course of their life. However, most patients are relieved when a clinician can assign a diagnosis to the suffering they are experiencing; it is often validating for an individual’s suffering to be recognized and named. Further, from a clinical standpoint, treatment can be formulated to address only the symptoms the patient is currently experiencing, rather than a “one size fits all” model.
A 2013 longitudinal study found that individuals with OSFED-BN and OSFED-BED eventually developed BN or BED over the course of the 8-year follow-up (Stice et al. 2013). Therefore, not only are these OSFED categories useful for patients, they may help clinicians identify who might be at risk for developing another eating disorder diagnosis later on.
The good news is that individuals with OSFED can benefit greatly from treatment. A popular evidence-based treatment for eating disorders is enhanced cognitive behavioral therapy (CBT-E; Fairburn 2008), which has been shown to alleviate symptoms in individuals with OSFED-BN as well (Waller et al. 2014). Researchers are also working on other ways to disseminate treatment to individuals who have OSFED. For instance, a randomized controlled trial of an Internet-based intervention showed that, among individuals with OSFED, both eating disorder attitudes and behaviors (like bingeing and purging) were significantly reduced (Jacobi et al. 2011) compared to the control group.
If you would like to learn more about OSFED, Almost Anorexic: Is My (Or My Loved One’s) Relationship with Food a Problem? is a helpful, reader-friendly guide written by Dr. Jennifer J. Thomas, the co-director of the Eating Disorders Clinical and Research Program at Massachusetts General Hospital. In sum, if you think you might have OSFED, please don’t hesitate to seek treatment. Your experiences and symptoms have a name and are valid and worthy of attention and because they are treatable. Instead, you could follow Mary’s example: she went to see a psychologist and was diagnosed with OSFED. He recommended she enroll in weekly sessions of CBT-E, after which Mary saw significant improvement in her binge frequency and her attitudes about food and eating in general.
It took me years to realize that the horrifying and vitriolic treatment I have received in this culture because I am a fat woman is a product of bigotry – not a product of my personal failure be thin.
It is very difficult in this cultural moment to imagine that anti-fat bias – in medical, personal, romantic, or professional settings – is morally inexcusable because it is maintained and substantiated through discourses of public health and personal wellness. I assure you, however, that marginalizing people because of their size is without a doubt a morally inexcusable act. The “demand for health” is made in a vacuum, willfully refusing to engage with the reality that stigma creates shortened lifespans and lowered quality of life.
For a very long time I believed that fatphobia was my fault. I believed that doctors and peers, strangers on the street, and advertisers had the right to shame, deride, and humiliate me because I had fundamentally failed at fulfilling an acceptable cultural expectation. I realize now that it is not acceptable to expect people of all genders, races, and cultural backgrounds to conform to one body type. Now I see the danger of a demand for homogeneity.
Currently, we believe that the solution to fatphobia is for all fat people to become thin people. This belief positions fatphobia as natural and inevitable, neither of which are true. Fatphobia is a learned ideology. Now that I am a fat activist who refuses to engage in weight-loss measures, I realize how absurd it is that the onus of bigotry be placed on the victims and not the perpetrators. It baffles me that the fatphobia apologists within the medical community hide behind empiricism, when the most obvious empirical truth is that it takes considerably fewer resources to stop being a bigot than to stop being a fat person.
I have firsthand experience with the ways in which gender and race compound fatphobia. Fatphobia maps onto preexisting inferiority ideologies taught to women and people of color. As the girl child of Mexican immigrants, I realize now that I saw dieting as both a behavior that was appropriate and desirable for my gender, as well as a behavior that indicated my desire to assimilate into mainstream (white) culture. I internalized the belief that my body was inferior because the boys at school told me it was, and they felt the right to control and police my size because of the misogyny they themselves had internalized. As Sander Gilman points out in his book Fat: A Cultural History of Obesity, “Dieting is a process by which the individual claims control over her body and thus shows her ability to understand her role.”
Since creating Babecamp (www.virgietovar.com/babecamp.html) – a 4-week online course designed to help people who are ready to “break up” with diet culture – in Winter 2015, I have taught almost 200 people how to deconstruct the history and mechanisms of diet culture. I work primarily with women, and so many of them believe they have a problem with food. In actuality, for many of them, their relationship to food is a metaphor for their relationship to mainstream culture.
“I came to realize that my starvation was a metaphor. My plate was the ring, the battlefield, a tiny physical space (my whole world) where I could live out all the unnecessary satisfaction I had inherited, that I sensed all around me, in real time. I was being starved emotionally and spiritually—no meat, just bones—and so of course I learned to accept it and do it and love it. Eating meant freedom, which I had no appetite for. Each bite represented the most unfeminine of acts to me. Bites were the units I used to measure the distance to my biggest dreams. Food was failure.”
In response to the current cultural paradigm around fatness, I have devised a campaign called #LoseHateNotWeight, which focuses on the idea that it is not weight that needs to be shed but rather the ideology that we are never good enough (self-hatred). I argue that fatphobia is maintained by the drive for homogeneity and its resulting hate-based systems like racism, classism, and sexism. And so, if self-acceptance and self-love are our goals, we cannot ever achieve them through self-hatred. Weight loss does not lead to the positive emotional outcomes we expect because there is no amount of weight we can shed in order to change an ideology. We must change our minds and our hearts, not our waistlines, to get what we want most from life.