How eating disorders are diagnosed.
The medical checks. The pitfalls you can avoid.
How to get specialist care without delay.
This is the whole of Chapter 3 of ‘Anorexia and other eating disorders – how to help your child eat well and be well’. Early intervention is best, so I want my readers to have access to this right away.
Eating disorder or ‘just’ disordered eating?
If you’re already receiving specialist care and you’re satisfied with your child’s diagnosis, feel free to skip this entire chapter. My aim here is to urge parents to seek diagnosis and treatment without delay. If you suspect an eating disorder, you’re usually right.
When a child, caught in the grip of extreme anorexia or starvation, becomes afraid to swallow her own saliva – when she believes that smelling food, taking a shower, or applying skin cream might make her fat – we understand this is far beyond a dietary fad. In the early days, though, we wonder if our children ‘just’ have disordered eating and body dissatisfaction – which are so common that we tend to accept them as normal.
With disordered eating, people eat and exercise erratically. They may chase weight loss through repeated diets; go without food for most of the day, or for several days – framing it as a ‘health hack’; binge sporadically; vomit; use non-prescribed weight loss drugs; cut out entire food groups; and fixate on detoxes, ‘clean’ or ‘healthy’ eating, ‘biohacking’ or extreme muscularity.
Disordered eating, for some, signals the early (‘prodromal’) stage of an eating disorder. Intervene now, and you’ll find it relatively easy to bring your child back to stability before they develop a diagnosable eating disorder.[ii] If your child ‘just’ has disordered eating, you won’t be ‘giving’ him an eating disorder by ensuring regular meals. On the contrary, you’ll relieve him of his present misery and teach lifelong habits for happiness and wellbeing.
I know how parents hesitate to ‘make a fuss’. They fear being heavy-handed. They hope the problem will sort itself out without intervention. Look, that may happen, but nobody can predict whether your child will fall in that category – or how long it might takes. There’s also a risk that, without treatment, a person improves enough to function but never fully recovers. That’s why the advice is clear: begin treatment.
So, what signs should be ringing alarm bells? First, a child or adolescent losing weight, or failing to gain weight. That is never OK (even if classed as ‘overweight’). Also, eating very slowly, fastidiously, using small plates or tiny spoons. Questioning quantities and ingredients. Cutting out major food groups. Fasting ‘for health’. An obsession with cooking… for others. Comments on body shape, mirror checks, body size checks. Exercising compulsively. Low mood and irritability.
A person with disordered eating may enjoy a feast with friends while tutting, ‘I really shouldn’t! Oh, go on, the diet starts tomorrow!’ With an eating disorder, they’re genuinely anxious. They may restrict or purge to calm their guilt. As the illness advances, they may stretch a small salad across starter, main and dessert. Later they stop meeting friends – partly to avoid eating, partly because anxiety closes them off.
Our children are adept at hiding signs. At first, they secretly skip lunch at school. Then they claim they’ve eaten with friends and don’t need dinner with us. They become passionate about ‘healthy’ eating and exercise. We yo-yo between worry and reassurance: relieved when they tuck into pizza, only to learn later they allowed themselves those slices only because they skipped lunch.
There are physical signs that the body is reacting to malnourishment: thinning hair, cold hands, stomach pains, constipation, and fine facial hair. For lots more indicators, including signs of regular vomiting, see the endnotes.
Here’s a tip: take your child on holiday for a couple of days. If they have an eating disorder, you’ll see their tension rise as they try to restrict while acting normal. You’ll see how long it takes them to choose food from a menu. They may argue that as you both had ice cream on the beach, you don’t need dinner – and wouldn’t a run be so much more fun? It’s no coincidence that the busiest time for referrals to eating disorder services is after holidays.
What are the main eating disorders?
In most countries, diagnosis is informed by one or both of these main sources: ICD from the World Health Organisation (WHO), and DSM-5 from the American Psychiatric Association, which I’ll paraphrasing for you now.
Binge-eating disorder, the most common of the eating disorders, is characterised by recurring episodes of eating unusually large amounts of food (significantly more, in a short period, than most people would eat under similar circumstances), during which the person feels they have no control over their eating. Sufferers are highly distressed and are often full of guilt and shame about their binges, which happen on average at least once a week. They may go for hours or days with little or no food, battling hunger, recruiting extreme willpower, and planning weight loss in great detail. If so, they could be malnourished, with medical risks just as severe as those of an underweight person.
In bulimia nervosa – the next most common eating disorder – the same criteria as for binge-eating disorder are used, and there can be just as much yo-yo-ing of feast and famine, but in addition, there are inappropriate compensatory behaviours (purging). These could be fasting and excessive exercise, but most often, purging means vomiting or use of laxatives, diuretics or weight-loss drugs. These purging methods carry a high health risk, requiring regular medical checks.[i]
Anorexia nervosa (restricting type) has these criteria:
- ‘Restriction of energy intake relative to requirement, leading to a significantly low body weight in the context of age, sex, developmental trajectory, and physical health.’
- ‘Intense fear of gaining weight or becoming fat’, even though underweight, ‘or persistent behaviours that interferes with weight gain, even though at a significantly low weight.’
- ‘Disturbance in the way in which one’s body weight or shape is experienced, undue influence of body weight or shape on self-evaluation, or persistent lackof recognition of the seriousness of the current low body weight.’
Binge-eating/purging type anorexia is the diagnosis when someone meets the above three criteria and also ‘has engaged in recurrent episodes of binge-eating or purging behavior’.
It’s not bulimia, as bulimia generally doesn’t lead to long‑term weight suppression: most patients are at or above normal weight. And while they might fast for a day or two, their brain isn’t so strongly affected by malnourishment. As a result, people with bulimia can usually participate in their treatment in a way that isn’t possible with starving anorexia patients.
I’ll say more further down about the controversial ‘significantly low weight’ criterion for anorexia nervosa.
There are also classifications for rumination disorder, pica, and avoidant/restrictive food intake disorder (ARFID). ARFID is a common eating disorder, often beginning in early childhood. It’s an umbrella term for a range of difficulties and causes: lack of hunger, extreme picky eating, or a phobia following a choking incident or a fear of vomiting (emetophobia). A common cause is sensory difficulties with textures or tastes (especially in autistic individuals), sometimes leading to a limited range of bland (‘beige’) foods.
Treatment for ARFID needs to be individualised with the help of a good specialist. While this book will give you some skills, ARFID treatment usually requires more collaboration with your child, a slower pace, and recognition of real limitations in what they can eat.
More on my website on ARFID: anorexiafamily.com/classification-eating-disorders/#arfid
OSFED stands for ‘Other Specified Feeding or Eating Disorder’. It’s the most common of all eating disorders diagnoses and is no less severe than binge eating disorder, bulimia or anorexia. A person with OSFED presents with feeding or eating behaviours that cause significant distress and significantly impair areas of functioning, while not meeting the full criteria for any of the other feeding and eating disorders.
For instance OSFED includes binge eating disorder or bulimia nervosa ‘of low frequency and/or limited duration’.
Be vigilant if your child is labelled with a subcategory of OSFED called atypical anorexia nervosa.[ii] This is anorexia nervosa without the ‘significantly low weight’. The best experts want to scrap this category. First, because it’s actually the most ‘typical’ (or common) version of the illness, and just as serious. Second, because having this category reinforces the dangerous notion that people should be treated differently if their BMI (Body Mass Index) is not ‘significantly low’. More on this further down.
In general the treatment for OSFED needs to be the same (and taken just as seriously) as for the most similar illness, whether anorexia, bulimia or binge-eating disorder. In this book, when I mention anorexia, bulimia or binge-eating disorder, please assume I am also referring to their OSFED version.
UFED (unspecified feeding or eating disorder) is often used when there is insufficient information to make a more specific diagnosis.
You may come across an old classification: eating disorders not otherwise specified (EDNOS). Most EDNOS patients would now be diagnosed with anorexia, bulimia or OSFED.
Some conditions are not currently classified as an eating disorder yet often must be treated like anorexia. They involve food restriction, danger to health, and greatly impact a person’s life.
One of these is Type 1 Diabetes with Disordered Eating (T1DE), previously called diabulimia: with this common and dangerous disorder, a person with type 1 diabetes restricts their insulin dose to manipulate their weight.
Another common condition is an extreme preoccupation with health, fitness, and muscularity, leading to over-exercising and disordered eating. Labels include ‘Bigorexia’ or ‘reverse anorexia’. A person may have a distorted image of their body as puny: this is muscle dysmorphia, a subtype of Body Dysmorphic Disorder.[iii] Some will only eat protein or make dangerous use of supplements[iv] or anabolic steroids. Their over-exercise causes injuries, but they keep going. If they’re focused on ‘bulking up’, if they only think of food as fuel, they’ll be somewhere along a spectrum of disordered eating.[v] At the worst end, they suffer from a compulsion to gain muscle regardless of the health and social cost, and they put their bodies through dangerous cycles of ‘bulking’ and ‘cutting’. At first, parents think their child just wants to be fit, yet the youngster is ill from malnourishment, insufficient body fat, and often weight loss.
Another common phenomenon is orthorexia, an obsessive rigidity around eating ‘healthy’, ‘clean’, ‘pure’ or organic. The person may cut out entire food groups. As restrictions become more rigid, orthorexia can morph into anorexia. Either way, malnourishment and an obsessive mindset make it miserable or dangerous.[vi]
There is also drunkorexia, where an alcohol drinker regularly restricts food to control calories, or to become drunk faster.
How bizarre is your child’s eating disorder?
Do you believe your child’s symptoms are so weird that surely some other illness is present? It’s still urgent for your child to be nourished and regain lost weight. Be wary of ‘Dr AI’, as it will show you syndromes with symptoms that are actually ‘normal’ in many children suffering from anorexia and malnutrition.
More on this website:
Bizarre yet normal eating disorder symptoms
Get the right medical tests and urgent intervention
Whatever your child’s current weight – low, normal or high – if they are restricting or purging, there are established medical checks[i] to be done, some of them urgently. Refer your clinicians – whether your family doctor or emergency services – to these. Bring a printout. For example, a simple blood pressure reading isn’t enough: what’s needed is the difference between lying and standing (orthostatic measurement). And normal blood test results can mask bigger issues caused by malnutrition.[ii]
“Blood parameters that fall within laboratory reference ranges are frequently seen in advanced uncomplicated malnutrition and should not be taken as cause for reassurance.”
Click for medical checks
For the US and worldwide: Academy for Eating Disorders (AED) Guide to Medical Care aedweb.org/resources/publications Also The American Psychiatric Association Practice Guideline For The Treatment Of Patients With Eating Disorders, Fourth Edition, 2023
‘Normal’ or ‘healthy’ weight: take it just as seriously
Medical tests and prompt eating disorder treatment are essential for any child who’s been losing weight – even if their weight loss has brought them into the so-called ‘healthy’ BMI range. Current guidelines make this clear. Appearance is deceptive: a person can be praised for their newly slim figure one day and rushed to hospital the next. Emphasise to clinicians the amount and speed of weight loss, as these are what most affect physical and mental state. The best gift you can give your child—whatever their BMI—is early intervention, and your vision of full recovery.
While a fast rate of loss drives the risk level higher, medical attention is also required for people whose weight loss is slow but prolonged, and for those with ARFID whose low weight may be lifelong.
Below are some of my picks from the UK’s Royal College of Psychiatrists:
- “Weight loss in children and adolescents is often more acute than in adults, due to lower body fat stores, thus medical compromise occurs relatively frequently”
- “Patients can appear well and this can falsely reassure the clinician.”
- “Due to the nature of eating disorder cognitions and associated distress, a patient’s fear of weight restoration may limit their capacity to provide an accurate account of their presentation. This can falsely reassure the clinician about the assessment of risk.”
- “Patients may have an extremely powerful drive to exercise […] that can override their lack of nutritional reserve, so that they appear very energetic right up to a physical collapse.”
- “High risk: Rapid weight loss at any weight e.g. in obesity or ARFID”
Atypical anorexia diagnosis? Handle with care
How much weight did your child lose? Weight suppression is critical in diagnosis and treatment
Keep the sense of urgency
When I started reading books on eating disorders, I skipped the parts that shouted, ‘Take your child to a doctor!’ I wanted to read only about what we could do as parents. We had the common but unscientific belief that ‘medicalising’ our children – labelling them with an eating disorder – could give them an illness they might not have. ‘Perhaps this was just a phase’, we thought. When I finally consulted the family doctor on my own, five months had passed since the trigger that had led our daughter to reduce sweets. Two months had passed since I’d noted in my diary that I was ‘sometimes concerned’ she was hardly touching her lunch. Young children with anorexia can deteriorate rapidly, and that’s what happened with our daughter. Each day seemed twice as bad as the one before. Suddenly we were desperate for urgent specialist help. Fortunately, our doctor recognised the signs I described and referred us immediately to specialist services.
Getting a referral for diagnosis and treatment
It really pays off to treat early, while symptoms are easier to shift. And yes, that’s precisely when we parents tend to watch and wait ‘so as not to make things worse’. The truth is, you can’t do any harm by getting a specialist assessment, and if your child does have an eating disorder, you’ll be glad you got a head start.
Some family doctors (primary care providers, general practitioners (GPs) or paediatricians) have unintentionally caused harm by reassuring worried parents, advising them to come back in two months if things get worse. If you consulted your doctor about Stage 1 cancer, you wouldn’t expect to wait until it had progressed to Stage 2.[vi]
Sometimes a doctor doesn’t diagnose anorexia because the child is a boy, or very young, or doesn’t appear very thin.[vii] Some doctors even praise children for their ‘healthy’ eating and weight loss. The worst-case scenario – rare, thankfully – is when a parent is disbelieved and branded as over-anxious or even harmful.
Let’s make sure you get what you need – as many parents do nowadays – from your first visit to a doctor or specialist, even if they don’t have the required expertise.
What to tell the doctor to get help fast
Start your visit efficiently with, ‘I think he has an eating disorder’, and ‘We’ve come for health checks and an urgent referral to eating disorder services’. Bring a printout of the medical tests mentioned above. List symptoms, data, and a few well-chosen anecdotes to illustrate your points. For example:
- What your child ate and drank yesterday or this week.
- Foods your child now refuses.
- The exercise he takes, with figures for the last week or month.
- The things he thinks and talks about (‘Yesterday he asked if he was fat 15 times’).
- Any physical changes: weight loss, sunken eyes, dry skin, cold hands, hair loss, fine facial hair, changes in the menstrual cycle.
- Psychological changes, mood, and behaviours, including any obsessions, compulsions, or self-harm. If he pinches at invisible flesh on his tummy, demonstrate it. If your child weighs himself repeatedly, say so. Also mention if he’s been unable to tell the truth, hiding food, secretly exercising or trying to make himself sick. Describe his resistance when you try to feed him.
- Any purging: vomiting, use of laxatives, diuretics or weight-loss drugs. Purging indicates an urgent need for medical checks, whether or not he’s underweight.
- Finally, say you believe, from your research and observations, that your child has an eating disorder and needs specialist treatment urgently. A good generalist should know that if a parent suspects an eating disorder, they’re probably right.
Make part or all of the first visit alone so that you can talk freely and precisely. Our children can put on a great show of being well. That’s why whenever interviews or questionnaires are used to assess your child, it’s good practice for parents to be included. A young adult has a legal right to exclude you, but you’re always allowed to write or phone in with your list of symptoms (more in Chapter 12).
Don’t accept delays to eating disorder treatment on the basis that your child also has anxiety or other psychological symptoms. Don’t allow time-wasting explorations into ‘root causes’. Did you breastfeed? Was there a divorce? This is not relevant to diagnosis or the first phase of treatment.
‘Wait and see’ is not acceptable when you suspect an eating disorder. Insist on an urgent referral – for both expert diagnosis and treatment. In England, early intervention is valued so highly that – in principle at least – parents can bypass the GP and self-refer to specialist services.[ix] If you’re unhappy with your family doctor, change them. And if they’re referring you to a specialist who turns out to be inadequate, insist on another referral.[x]
What you don’t want your child to hear from a doctor
I’m glad I consulted our doctor alone the first time, because it allowed me to describe my child’s moods and behaviours freely.
I also needed reassurance that the doctor wouldn’t make unhelpful comments in front of my daughter. I needn’t have worried, but I believe it’s a valid precaution. I’ve heard of clinicians saying things like, ‘You’re nice and slim!’ or ‘We all need to eat less fat,’ or ‘At your age, no one wants their mum or dad telling them what to eat!’ And the one I really dreaded for my innocent ten-year-old: ‘So, tell me, do you make yourself vomit? Has that ever occurred to you?’
If your child doesn’t already know his weight, I recommend asking the family doctor to keep it that way. Have your kid stand on the scales facing backwards. Later, when you speak to a specialist, you can discuss whether to go for open or blind weighing (Chapter 6). For now, your life will be much, much easier if your child doesn’t make today’s weight his upper limit.
“My daughter’s issue was that she couldn’t eat. She didn’t even think about her weight before people started weighing her and commenting on weight loss. After that, every time she learned she’d put on a fraction of a pound, it was extra hard to feed her. We had to insist on blind weighing.”
While you’re waiting for a diagnosis and treatment
If you can’t get prompt treatment, keep pressing: phone, write, document everything, use complaint procedures, reach out to local politicians and parent networks. For any immediate medical worries, visit emergency services, armed with a printout of the required checks.
If a doctor blocks access to specialists because they believe your child is fine, here’s a rather extreme and uncomfortable tip: record audio or video while your child is acting in highly symptomatic ways.
If you’re on a waiting list, phone regularly to check on the referral, and inform services of any worsening symptoms or behaviours. Good treatment providers try to prioritise their waiting list, so they need that information.
Even when the ‘system’ is less than ideal, there is much you can do for your child right now. You can get a head start by beginning your part of the treatment at home.
The book contains numerous endnotes with links, relevant to this text.
More on my website:
- Some statistics: how common are the various types of eating disorder?
- International: treatments, standards, help specific to your country
- If your child is/was classed as 'overweight': Atypical anorexia diagnosis? Handle with care!
Onwards:
* Next: Chapter 4: Treatment – the essentials *
Resources to help you right now:
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