Eating disorder diagnosis failing young and old

Eating disorder diagnosis failing young and old

In this third post that June Alexander has adapted from Alykhan’s Asaria’s article on improving eating disorder care for underserved groups, three more underserved groups are discussed — younger children, people with under-recognised eating disorders, and people with higher weights.

Younger children and pre-adolescents

Children under 13, and by implication, their caregivers and loved ones, are arguably underserved for opposite reasons to longstanding/older-age ED sufferers. Whereas older-age people with an eating disorder are often assumed to be consumed by their diagnoses, disordered eating in younger children is commonly dismissed as normal ‘picky eating’, resulting in their eating disorder being underdiagnosed or misdiagnosed by unaware healthcare professionals.

This lack of healthcare professional awareness can have fatal consequences, as was tragically shown by the death of seven-year-old Alfie Nicholls in December 2021. Alfie was not diagnosed with avoidant/restrictive food intake disorder (ARFID) until after he died, despite his family repeatedly seeking help from multiple services.

Clinical education and training is vital to increase healthcare professionals’ awareness and understanding of eating disorder occurrence in younger children. This is particularly important for general practitioners (GPs) and other healthcare professionals working in primary care, as unwell children are most likely to present to them first.

Clinical education and training can teach the difference between eating disorder symptoms and autism traits and behaviours. Although autistic people are more vulnerable to developing mental ill-health (including eating disorders), their neurodiversity is not a disorder requiring treatment.

I am unaware of National Health Service (NHS) guidance specifically tailored for younger children with eating disorders. On this basis, I encourage detailed considerations of how integrated and holistic care may be provided rapidly to this group by healthcare, education, learning disability, and any other supportive services.

Furthermore, given the lack of scientific evidence from randomised controlled trials (RCTs), I recommend a review of individual case reports to help inform treatment approaches. For example, Rosania and Lock’s (2020) case report of a nine-year-old child with ARFID and sensory sensitivities demonstrates the efficacy of adapted family-based treatment (FBT).

Under-recognised and under-appreciated eating disorders

People with under-recognised and under-appreciated eating disorders fall through the care net because healthcare professionals lack awareness of or do not appreciate (take seriously) their specific eating disorder diagnoses.

Under-recognised/underappreciated eating disorders and feeding disorders include:
* ARFID
* Binge eating disorder (BED)
* other specified feeding or eating disorder (OSFED)
* Type 1 diabetes and disordered eating (T1DE)
* perinatal eating disorders
* night eating syndrome (NES)
* sleep-related eating disorder (SRED)
* pica
* rumination disorder, and the proposed condition
* orthorexia nervosa (ON).

Clinical education and training are imperative to increase the awareness and understanding of healthcare professionals in these and other under-recognised/underappreciated eating disorders.

Although orthorexia nervosa is not (yet) recognised in formal diagnostic criteria, I do not doubt the distress and impairment caused by its symptoms. In an ideal world, diagnostic labels would not be required to make healthcare professionals aware of those symptoms, but I do not know how achievable this is in practice. If new diagnostic categories are unfortunately required, I discourage the creation of more “—anorexia” labels.

In addition to improving clinical education/training, healthcare providers must develop psychoeducational resources and guidance tailored for these subgroups. ARFID and Type 1 diabetes and disordered eating are still not mentioned in the UK’s NICE guidelines, and there is only one vague guideline for people with OSFED – “for people with OSFED, consider using the treatments for the eating disorder it most closely resembles”.

Tellingly, in January 2022 (a few weeks after Alfie Nicholls died from ARFID-related complications), the Minister of State for Health and Social Care announced that “NICE concluded following consultation that ARFID is a relatively new diagnostic category, for which there is little evidence on which to make recommendations. NICE currently has no plans to extend the scope of the guidelines to include ARFID”.

Is scientific evidence really needed to make urgent care recommendations for a person who is suffering and dying in the here and now?

To assist healthcare professionals in identifying under-recognised and underappreciated eating disorders, traditional diagnostic/screening tools may be adapted for the subgroups, or new tools may be created for them.

Special diets and disordered eating (SD-DE)

In this article, ‘special diets’ refer to diets that are adapted for reasons not considered pathological. Possible reasons include food allergies, religious practices, ethical/environmental concerns, general health concerns, and neurodiversity traits. Although most people with (or who try to follow) ‘special diets’ do not have disordered eating, they are more vulnerable to developing eating disorders, and when they do, their symptoms are less likely to be recognised or appreciated (as a result of being camouflaged).

In effect, people with ‘special diets and disordered eating’ (SD-DE), a term created for this article, may be considered another subgroup. Thus, clinical education/training is needed to increase healthcare professionals’ awareness and understanding of eating disorders developing in people with special diets. Due to the wide range of possible presentations, wide-ranging case studies should be used to educate healthcare professionals. Below is an example that I have created.

Patient X is an autistic person who only eats processed ‘staple’ foods that she can depend on consistently, such as bread and cereal. X’s GP tells her that she must eat less processed foods because this will extend her life expectancy. As a result of X’s black-or-white autistic thinking, she becomes obsessively fixated on eating only 100 per cent natural foods. Trying to achieve this causes intolerable distress due to X’s inflexibility traits, not to mention the fact that she cannot afford to eat only natural foods. Therefore, she stops eating all foods. Paradoxically, X’s extreme attempts to extend her life expectancy, which were prompted by her GP’s lack of awareness about SD-DE, have now put her life in immediate danger.

In this example, X would probably meet the proposed criteria for orthorexia nervosa, which involves an excessive preoccupation with eating foods subjectively considered healthy/pure/clean/ethical.

Social media ‘wellness’ trends have encouraged the proliferation of orthorexia nervosa symptoms in recent years, a phenomenon exacerbated by the COVID-19 lockdowns (which were profoundly harmful in other ways too). Simultaneously, the promotion of strict dieting by healthcare providers, mass media organisations, and the ‘wellness’ industry has created a weight-stigmatising/weight-phobic environment that normalises restrictive eating.

Forget the soups and shakes

In England, this is demonstrated by NHSE’s ‘soups and shakes’ (or ‘total diet replacement’) prescription diets, which have been proclaimed on their website and newspaper front pages as a cure for diabetes since September 2020.

Notably, having promoted the prescribed starvation when an experimental trial of it began in September 2020, the Daily Mail reported four years later that “12 per cent of those who embarked on the brutal diet managed to stick to it for a full year… in total, only 3 per cent of patients who tried the diet achieved the desired result”.

In NHSE’s 11-page evaluation of the trial, conducted on 7450 people, of whom hundreds are statistically likely to have suffered from an eating disorder before the experiment, there was no mention of ‘eating disorder’, ‘mental health’, ‘mental illness’, or other terms that would indicate the psychological harms of the ‘brutal diet’ were considered.

I encourage healthcare providers/professionals to listen to the words of the lived experience author Nancy Manther, who wrote that “one phrase my eating disorder therapist and dietician used is:

‘All foods fit’. No food is judged, period. The overall goal is to try to eat (and hopefully enjoy) a variety of foods to nourish my body properly. So, with that in mind, I’m reframing my definition of calories… Fact: Starving my body of energy starves my life”.

If I listened to X’s GP rather than Nancy’s therapist/dietician, I would certainly not survive because most of the calories that I consume are from processed foods – I depend on consistently labelled and hygienically sealed/prepackaged ‘staple’ foods due to my obsessive-compulsive disorder (OCD) and an eating disorder. It is inconvenient that many people’s survival in the real world depends on foods considered ‘unhealthy’.

Type 1 diabetes and disordered eating

Type 1 diabetes and disordered eating (T1DE), sometimes referred to as ‘diabulimia’, may be considered another type of SD-DE. Although the label excludes eating disorder sufferers with type 2 diabetes, their heightened vulnerability to SD-DE must also be appreciated. Healthy eating is important for managing diabetes, and people with the condition must be given the practical, financial, and emotional support required to do this.

However, when healthcare providers/professionals define people with diabetes by what they eat and unnecessarily encourage them to excessively restrict and scrutinise their diets, they are arguably colluding with eating disorder voices. In a recent BBC News interview, a Type 1 diabetes and disordered eating patient explained:

“The eating disorder services are like – ‘Don’t read the labels, don’t read the food packages,’ so disregard the numbers. That’s when the interplay between the two services butt heads because one is saying – ‘Pay intense attention to what you’re eating,’ and the other says – ‘Try not to think about it,’ and that’s why I think it’s so important that these guys talk to each other”.

People with Type 1 diabetes and disordered eating must receive joined-up, integrated, holistic care provided by multidisciplinary and interdisciplinary services. Worryingly, a UK Parliament report published in 2024 raised serious concerns about the lack of integration between eating disorder and diabetes services and their inconsistent messages. Of further concern, in a survey conducted by Viljoen et al. (2023), only three out of the 13 adult eating disorder services that responded had received adequate diabetes training.

People with higher weights

This group includes people who have healthy weights but are not underweight. As a result of widely held misbeliefs that people with serious eating disorders must be underweight, healthcare professionals are less likely to recognise and appreciate (take seriously) eating disorder symptoms in people with higher weights.

As with other groups, clinical education and training are required to increase healthcare professionals’ awareness and understanding of eating disorder occurrence in people with higher weights.

This training needs to teach non-weight-stigmatising healthcare practices, including thoughtful language/communication and dietetic approaches that do not focus on weight loss.

Stigmatising healthcare practices deter people from accessing help

Weight-stigmatising/weight-phobic healthcare practices, including NHSE’s prescribing of starvation diets and their insensitive anti-obesity public messages [e.g., “if as a nation we keep piling on the pounds around the waistline, we’ll be piling on the pounds in terms of future taxes needed just to keep the NHS afloat”] collude with eating disorders that healthcare providers are supposed to treat, not encourage.

A parent caregiver interviewed by LaMarre et al. (2024) “described encounters wherein medical professionals prescribed particular ways of eating and moving that ended up being detrimental to health… medical weight stigma was a part of the ‘perfect storm’ their daughter had experienced that resulted in her eating disorder.”

As a result of weight-stigmatising/weight-phobic healthcare practices, people with binge eating disorder are particularly deterred from seeking help. An outpatient eating disorder service in Australia reported that binge eating disorder accounted for only 1.5 per cent of their referrals, compared to 60 per cent for anorexia nervosa and 15 per cent for bulimia nervosa, despite binge eating disorder being more prevalent than both anorexia and bulimia.

Binge eating disorder is no less serious than bulimia, which is no less serious than anorexia.

In fact, I have experienced binge eating (symptoms) as being more punitive than food restriction, yet unaware healthcare professionals associate binge eating with overindulgence and a lack of self-discipline.

I implore healthcare providers/professionals to recognise and appreciate the seriousness of binge eating disorder (and other eating disorders that predominantly involve binge eating).

As a first step, NHSE could update its Service Specifications for adult eating disorder inpatient services, which currently do not have a distinct category for patients with binge eating disorder. Inpatient services only accept those considered most seriously unwell, so the implication is that binge eating disorder is not serious enough to warrant inpatient treatment.

Furthermore, I implore an end to the practice of rationing healthcare resources based on weight/body mass index (BMI) considerations. In the NHS, the Medical Emergencies in Eating Disorders (MEED) guidelines explicitly warn against weight discrimination. Yet, there are numerous accounts of bulimia nervosa patients with dangerous electrolyte levels being taken less seriously than AN patients with normal electrolyte levels and stable (albeit low) weights.

For example, a bulimia nervosa patient reported “several instances where I was not taken seriously because of my normal weight… [and] was able to discharge myself with a potassium below 2.5mmol/L or even 2.0mmol/L” Brown et al. (2016) reveal that “throughout the NHS, there is an ethos of gatekeeping to optimise the use of scarce resources… in some areas, only low-weight patients are allowed access to specialist care, which creates a perverse incentive for further weight loss in those who are perceived as ‘not ill enough’.”

Atypical anorexia nervosa (AAN)

Atypical anorexia nervosa is a subcategory of OSFED created for patients who meet all ‘typical’ anorexia criteria except for the underweight BMI criterion. Arguably, it is one of the most explicit manifestations of the stigma and weight discrimination experienced by the subgroups mentioned in this article.

Verma (2023) compellingly explains why people labelled with atypical anorexia nervosa “need and deserve better language.” Additionally, I query the label’s clinical utility, as relative BMI changes are more important risk indicators than absolute BMIs at given points in time.

The label may counterproductively result in higher-BMI patients who have lost weight rapidly being taken less seriously than lower-BMI patients whose weights have not changed for many months.

Hebebrand et al. (2024) propose an ‘atypical’ subcategory of anorexia nervosa (not OSFED) based on premorbid BMI. Still, I feel the problem needing to be addressed is healthcare professional unawareness rather than patient ‘atypicality’.

Aly’s complete article

To read Aly’s full article, complete with references, go to: https://jeatdisord.biomedcentral.com/articles/10.1186/s40337-024-01145-2
Additionally, Aly’s article will continue to be explored over the next few weeks on www.lifestoriesdiary.com/blog