Eating Disorders
From AFSWiki
Letter from Mary Ann/AFS-International
April 2010
IS IT A DIET OR A DANGEROUS EATING DISORDER?'
In this letter we will take a look at an issue that many AFS organizations have had to address with participants and their host and natural families. The circumstances surrounding eating disorders and their attendant issues are complicated, emotional and rarely straightforward. It is often difficult for participants and their families to comprehend the serious nature of the symptoms and the potential for irreversible health problems that the conditions create. Thus they often have difficulties understanding why AFS makes decisions involving eating disorders symptoms that usually result in early returns to the home country.
To help illustrate some of the points, we will follow a situation involving a participant from several years ago. We will call her Suzy. Suzy is 17 years old and at the time of communication with AFS is preparing to depart for a year program in August. In July, Suzy’s natural family calls the prospective host family to inform them that their daughter has been suffering from anorexia recently but has recovered well. The host family indicates that they are comfortable hosting Suzy but then call the local volunteers asking why AFS had not told them of this condition earlier.
The prospective hosting AFS national office assures the volunteers that this is news to AFS, and that AFS does not accept anorexic students. According to the natural family, the student had lost weight in recent months while preparing for ballet performances.''
Why are eating disorders an issue for AFS?
The majority of applicants applying for an AFS program fall within the age range of 14-18. This is an age when youth often begin to think about weight control and reduction. Such ideas do not necessarily lead to eating disorders, but if they do, they may not manifest themselves as noticeable symptoms until some months later when the participant is on a program in progress.
Eating disorders are an issue for AFS, because
• they cannot be cured in a short period of time;
• their treatment requires attention and decisions that exceed both a host family’s and AFS’ ability and authority to deal with, and, long-term care decisions are best made and managed by the natural parents;
• if the treatment of an eating disorder is ignored or delayed, harmful consequences can result for the participant and questions would be raised regarding AFS’ due diligence in providing support to a participant in need of help.
Persons with eating disorder problems usually do not see the severity of their illness and tend to minimize weight loss or claim that nothing is wrong and that they are not losing weight. This condition can often accompany other problems not as visible as weight loss such as depression, substance dependence and behaviors resulting in self-harm. Because AFS’ primary concern is for the welfare of the participant, it is important for those working with applicants through the screening process as well as those monitoring participant adjustments during the program to be aware of the dangers related to this most serious illness and to take appropriate pro-active measures.
What is an eating disorder?
Eating disorders are medical and psychiatric illnesses that seriously affect the emotional and physical health of adolescents. Those suffering from one of these illnesses become obsessed with food, body image and weight. These diseases have the potential of becoming chronic and sometimes even life-threatening if not recognized and treated appropriately. They can be the source of long-term health issues, some of which may be irreversible. For example, it may not be possible to recover bone density lost during adolescent years, which could lead to osteoporosis. Mortality rates as high as 10% have been reported of those diagnosed with eating disorders.
Unfortunately, we are often confronted with the negative effects that eating disorder problems impose on AFS participants. The need to control eating patterns and dietary intake becomes a primary focus for them. It disrupts their relationships and activities. When the environment around the participant is beyond his or her control, the behavior typically found in a person with an eating disorder actually provides the participant with comfort even if it is self-destructive.
What are the different types of eating disorders?
Information from the U.S. National Eating Disorder Association (NEDA) Toolkit for Educators describes the different types of eating disorders and the symptoms that warrant attention and treatment. The most commonly known are Anorexia Nervosa and Bulimia Nervosa. Eating disorders generally begin around the ages of 14-15 with the behaviors not recognized until middle to late teens. AFS participants exhibiting eating disorder problems and symptoms are most often diagnosed with the anorexia nervosa condition. Anorexia Nervosa is essentially diagnosed when an individual refuses to maintain a minimum normal body weight. That means that his or her weight falls below 85% of what is considered normal weight for the person’s age and height. He or she is intensely afraid of gaining weight, and exhibits significant disturbance in the perception of the shape or size of his or her body. The patient is obsessed with the concept that being fat is such an undesirable condition that it is to be avoided at all cost. Weight loss is self-induced through extreme avoidance of “fattening” foods. It can be further aggravated by excessive purging (self-induced vomiting) and/or exercising. Usually weight loss is self-induced and is accomplished primarily through reduction in total food intake. Although individuals may begin by excluding foods they perceive to be highly caloric or “fattening”, most eventually end up with a very restricted diet that is sometimes limited to only a few foods.
Additional methods of weight loss include the misuse of laxatives or diuretics and increased or excessive exercise. This intense fear of becoming fat is usually not alleviated by the weight loss. Concerns about weight gain often increase even as actual weight continues to decrease. The person experiences a loss of reality regarding their body image. The ‘starved brain’ thinks the body is ingesting a lot of food, when in actuality the person is reducing food intake.
Anorexia is a lonely disease, and its demands can be exhausting for the patient. Some find support and understanding in some of the many pro-ana (pro-anorexic) websites that are available. These websites provide a wide range of views about anorexia, some of which claim that anorexia is a life style choice and not an illness. If an individual is already suffering from the illness, he or she can become easily susceptible to information that may parallel their own thinking that there is not a problem.
Individuals with Bulimia Nervosa typically are within the normal weight range, although some may be slightly underweight or overweight. Warning signs are a cycle of bingeing - repetitive intake of abnormally huge amounts of food accompanied by a sense of loss of control over eating behavior; completing the cycle, the person with bulimia regains control through inappropriate compensatory behaviors for the overeating such as self-induced vomiting, laxative or diuretic abuse, fasting and/or obsessive or compulsive exercise. Bulimia nervosa is usually diagnosed in mid to late teens or early 20’s.
Who gets an eating disorder?
People from all socioeconomic classes can be affected. Research shows that eating disorders are not restricted to particular cultures, but are found around the world. They affect all races, genders, and backgrounds. Recent psychiatric studies indicate that there may be some genetic factors placing some people at a greater risk of developing an eating disorder when encountering environmental factors that are conducive to dieting and food restriction.
Changing environments (going away to school, going on an exchange program) provide an “ideal opportunity” to change eating patterns, providing a good excuse to “diet” and refuse foods that the individual claims to dislike or cannot eat. At AFS, we more often experience eating disorders being diagnosed with females, but males can also suffer from them. Statistics are scarce but there are indications that up to 10% of those diagnosed with an eating disorder are male. Incidents of eating disorders among males may be under-reported. The literature infers that this is because females are more likely to seek help, and health practitioners are more likely to consider a diagnosis of eating disorder when treating female patients. (NEDA Toolkit)
Can an eating disorder be cured?
There is a tendency to minimize or even negate eating disorders and to underestimate their requirements in treatment. Early intervention with appropriate care can improve the outcome. The literature indicates that there is controversy about the term “cure”. Clinical experts seem to prefer the term “remission”, looking at an eating disorder as a chronic condition which can be managed effectively to achieve complete remission from signs and symptoms. Patients can be at risk of a relapse during some future time and need to manage their relationship with food, concepts about body image and other coexisting problems. Weight recovery is essential, so that the patient can participate in further treatment such as psychological therapy. Recovering to normal weight alone does not equate to being ‘cured’, because of the medical and psychiatric complexity of the illness. (NEDA Toolkit)
Follow up reports from Suzy’s consulting specialist indicate that her weight loss was limited to specific association with ballet and that she had regained the weight in the last few months. Everyone contends that the weight loss was only because of stress associated with ballet and not with any psychological problems. Both natural family and host family are very keen that this exchange takes place.
The psychologist working with Suzy during the previous months suggests that she would like to continue to communicate with Suzy during her exchange year.
If an eating disorder takes some months to manifest, how can AFS learn about it through the screening process?
There is not a crystal ball that will reveal all. There are, however, some screening policies and guidelines that AFS has put in place to help identify areas within a candidate’s application that should be more carefully assessed in order to qualify the candidate for the program.
If a candidate has had a history of, or present evidence of, an eating disorder (including anorexia nervosa or bulimia nervosa) the application must include a written statement from the specific Health Specialist treating the condition, and one from the candidate, each explaining the reason for consultation and treatment. The application must show evidence that the candidate:
• has a full understanding and knowledge of the previous or current condition;
• has not had emergency treatment or hospitalization related to the condition during the pre-ex period; (A pre-existing condition is one for which treatment has been sought or provided in the eighteen-month period prior to the participant’s arrival at the international departure site (the "Pre-ex period").
• a statement from the candidate's attending physician confirming that the candidate has maintained a complete year of stable weight, and that the candidate can maintain his or her weight without continuation of therapy.
Candidates who do not meet these conditions do not meet the medical criteria and are subject to disqualification. (See the AFS Standards Database: Criteria for Candidate Qualification and Disqualification.)
Experts suggest that in screening applicants, AFS should rely on standard medical growth charts for participants, which reflect the reality of the sending country. AFS will be developing this idea further in the coming months to help Partners understand how to use these tools effectively.
In making the overall screening assessment, candidates may not medically qualify, if their applications reveal that there is/was a condition under medical supervision which has been unstable during the Pre-ex period. A situation that develops after selection which negates the candidate’s previous status of meeting the selection criteria is definite cause for rejection by the hosting Partner. (See the AFS Standards Database: “Red Flag” Alerts for use in Medical Screening)
Suzy’s diagnosis occurred after selection within 6 months prior to her departure.
AFS raised concerns that - if she experienced such a severe physical reaction because of a dance recital - how would she handle pressure once in a placement with AFS …new culture, language, climate, school, family, etc. ...all without the familiar supports of her parents and the rest of her family?
There were a number of warning signals in Suzy’s situation. However, the desire of the hosting and sending families to have her take part in the program was very strong. Her psychologist also supported her participation, making it especially difficult for AFS to resist moving forward with the placement.
Consultation was made with a specialist on the hosting side. The psychologist recommended that she not take part in ballet on the exchange year since this seemed to trigger the anorexic episode. It was further recommended that she initially be treated as healthy and that AFS not make arrangements for her to see a doctor early in the exchange. The recommendation was to monitor Suzy’s behavior and consult medical authorities if necessary as with any other student. So, Suzy traveled to the host country to begin her program.
How can host families and local volunteers learn that there may be a problem?
After all they don’t really know what is “normal” weight or appearance for someone who recently arrived in their home, especially if the participant assures them all is well and denies weight loss.
If a participant appears abnormally thin and seems to continue to lose weight, it is appropriate to consult a physician. Weighing less than 85% of normal body weight for a person’s height and age is a significant sign of a possible eating disorder and cause for consultation with professional medical and mental health professionals. While the host family, volunteers, or office staff cannot know what is normal for any given participant, medical professionals will have that information; it is widely and normally used.
Not eating, eating erratically, or significant changes in normal eating patterns such as eating alone are indications that support intervention may be necessary. AFS support contact persons are not expected to act as professional therapists or deal with problems that begin to move outside normal adjustment areas, but they need to maintain close examination and monitoring of situations through monthly contacts and other communication which could help identify potentially serious problems. Involvement at the very early stages of a developing situation can make an enormous difference in the Partner’s ability to help resolve difficulties at an early stage and to help the natural family and participant understand the severity of the situation. (See the AFS Standards Database: Volunteer Support Tool – When to Contact the National Office)
We have already looked at the role that body imaging concerns and the distortion of size and shape perception can contribute to the development of eating disorders. Along with apparent weight loss, some other indication factors should be cause for concern:
• A rigid low-fat diet during which the participant avoids foods that may be nutritional “because they contain fat”.
• Consistent dieting or chaotic food intake. The individual may not eat and may skip meals being too busy with other things. He or she may avoid eating meals with family members or friends, preferring to eat alone. He or she may discard food. Some individuals hide and hoard food and do not like to eat in public. Eating in secrecy enables the person to control what the food intake is without supervision or interference.
• Signs of compulsive behavior with digestive issues and/or development of food rituals. An example would be moving food around on a plate to give the impression of eating. It could involve excluding all but a few types of food and taking a lot of time to sort and re-arrange the food. The individual might concentrate on eating odd combinations of food and require they be eaten at only certain times, not necessarily at meal times. The person might be pre-occupied with food issues – cookbooks, recipes and preparing food, but avoiding eating.
• Habitual use of laxatives or non-prescriptive diet aids.
• Frequent trips to the bathroom after meals. Signs of vomiting not related to gastrointestinal illness.
• Excessive exercising often related to stressing the importance of low weight maintenance to enhance some objective – sports, dance, etc.
• For females, suspension of menstrual periods for 3 consecutive months or longer.
How can AFS help participants demonstrating these behaviors?
The behaviors described above are worrisome symptoms and signs that AFS needs to seek medical advice. AFS does not diagnose or make interpretations of eating disorder symptoms – we rely on advice from professional medical practitioners. The medical practitioner can help to pinpoint the extent of the weight loss. Weighing less than 85% of normal body weight for a person’s height and age is a significant sign of a possible eating disorder and cause for consultation with professional medical and mental health professionals. It is AFS’ responsibility to communicate the severity of the participant’s condition and help the natural family understand the need for their attention in the treatment of their child. Early treatment may be the best way to prevent the disorder from progressing. Identifying the early signs and seeking immediate treatment can help prevent further medical complications from the illness and long term medical problems.
If the host family is willing to support the participant undergoing therapy while on the program, why does the participant have to go home? Why can’t the participant undergo therapy while on the AFS program?
If an eating disorder is diagnosed, return to the home country is the recommended procedure, so that the participant can enter necessary treatment under parental supervision. Recovery from an eating disorder can take months or years. The general treatment period for Anorexia Nervosa is about 48 months. Setting limits is part of the treatment for anorexia and the natural family is in the best position to oversee the treatment. If the natural parents do not take direct control of the situation, it would negate a significant part of the therapy. Only the natural parents have the authority and legal relationship with the patient to manage the kinds of restrictions and the daily monitoring that is required as part of the treatment. The parents also have to be available to make on-the-spot decisions about the course of treatment. Some of these decisions can be very difficult and can involve the parents taking control of the child’s food intake and potential considerations about hospitalization. The parents will need to monitor the child’s treatment with professional therapists and other professional support arrangements.
AFS cannot assume any of these responsibilities and neither can the host family, since the natural family is the primary and legal caregiver. Only the natural parents can make and sustain the commitment to the long time frame needed to improve their child’s well-being.
Some may remember a previous Letter on “What’s so special about the AFS Medical Plan?” In it, we had a long discussion on the AFS travel medical insurance plan and the conditions that apply to situations, identifying AFS’ approach when a participant develops a gravely ill condition requiring ongoing therapy and care. These are situations that necessitate care and treatment decisions by the parents or guardian sometimes on a daily basis. AFS does not assume a custodial relationship with the participant. This role remains the responsibility of the natural parents or guardians while the participant is on the AFS program. In that capacity the final determination of medical care and treatment is the decision of the natural parents or legal guardian. AFS often acts as the in-between channel for information sharing. By getting the participant home under these circumstances, AFS’ liability is reduced, because decision making is assumed directly by the parents or guardian in the home environment. AFS removes itself from the vulnerable positions as a conduit of critical information and as a decision maker. (See the AFS Risk Management Database: Training Materials).
What if the natural family does not agree with the decision for an early return for treatment?
From past experiences we know that weight issues may have been a concern prior to the participant’s departure from home. It is not uncommon for some participants to want to lose some weight before the program starts. However, it can lead to problems if the positive feedback on appearance acts as a catalyst for the participant to continue losing weight to the point of developing dangerous eating patterns to accomplish this goal. Onset of the illness can begin months before the participant leaves home, so it is important to take note of any earlier discussions AFS may have had with the natural parents on this subject. In some situations the natural parents may have been aware of some dieting issue and did not see the significance of it. In some situations they may have been aware and chose not to see the importance of it in connection to the adjustment stresses that their son or daughter has had to endure while on the program.
It is not always possible to know how much of the situation is known to and understood by the natural parents, especially if the participant is in denial about the condition and communicates this to the parents. Some parents may have an awareness that things are not going well even if their child is saying that everything is fine. They need AFS’ support to help their child understand the need to return home.
As with any support situation, it is important to provide as much factual information as is possible so that the parents can develop a better understanding of the situation, especially if the condition is unknown or new to them. AFS needs to provide the details on the situation that raised AFS concerns to the parents (and perhaps also to the participant) and should describe and give examples of all the symptoms and behaviors that have been observed by members of the host family, school personnel, close friends as well as any observations of the AFS support contacts. It might be helpful to review the monthly contact reports to note any observations made earlier by the contact person that might relate to the eating disorder concerns, (withdrawal from hosts and friends, disinterest in school and social events, etc.).
Finally, it is important to stress that this is an illness that requires close attention and care by the natural parents since treatment decisions can only be made by them; AFS cannot assume these decisions.
Suzy traveled to the host country and within the month after arrival her physical and mental state started to significantly deteriorate. Not only did she lose weight, but she became emotionally unstable and withdrew from her environment and the people around her despite attention and support. A medical evaluation confirmed the re-emergence of the anorexic condition of such severity that she required a medical escort to accompany her home.
What is it that we learned from Suzy’s situation?
AFS was alerted by the future host family that Suzy had been treated for an eating disorder within 6 months prior to departure. There had not been communication by the natural parents with the AFS Partner since selection and placement proceedings. When AFS asked the parents about the recent anorexia, reassurances were provided by the natural parents and Suzy’s attending psychologist that the condition was an isolated occurrence. AFS did not do a thorough follow up on the information available nor did AFS receive from the natural parents any voluntary chronological details of the illness that occurred in the past 6 months. Concerns and questions remained about Suzy’s behavior over the last half year. There was pressure from both families that Suzy take part in the program as planned. The parental pressure and the shortness of time to thoroughly assess the new developments were stressful factors contributing to the decision. In the end, while all intentions were supportive and well meaning, it was not the experience expected by Suzy, her parents and her host family.
Could AFS have predicted this outcome?
It is not possible to know, but the results reinforce the reason we have developed policies and procedures which help us make decisions that keep the welfare of the participant as AFS’ primary concern – even if the decisions AFS makes may not always be well received or appreciated.
Dieting is not unusual, especially for adolescents as they are everywhere surrounded by “ideal” body images in advertising and media exposure. After all, no one wants to look “fat” since thinness, erroneously or not, is so often equated with beauty. Glamorous photographs of ultra-thin models and actors can provide unrealistic body image goals. In and of itself, attention to food intake and regular exercise are part of healthy living. However, excessive attention in conjunction with other warning signs, raise some ‘red flags’ that necessitate AFS’ proactive intervention.
Acknowledgements:
Denise M. Heebink, M.D. – Pediatrics and Adult and Child Psychiatry
2008 National Eating Disorders Association Educator Toolkit
Web address: NationalEatingDisorders.org
AFS Standards, Policies and Procedures Database
AFS Risk Management Database
