The parent’s part in eating disorders diagnosis

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.

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Eating disorder or ‘just’ disordered eating?

If you’re already getting 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 look for diagnosis and treatment without delay if they are worried that their child may have an eating disorder. That’s because they’re usually right.

When, at the more extreme end of anorexia and starvation, a child becomes scared of swallowing her own saliva, when she thinks smelling food or having a shower or putting cream on her skin might make her fat, you know this has nothing to do with a faddy diet. In the early days, though, we wonder if our child ‘just’ has disordered eating and body dissatisfaction – which are so common that we tend to accept them as normal.[i]

With disordered eating, people eat and exercise erratically. They want to lose weight, they try and fail at all kinds of diets, only eat in the evenings, fast (‘for health’ or weight loss), occasionally binge, vomit or use diet pills, exclude particular food groups, and become fascinated with detox, ‘clean’ and ‘healthy’ eating, ‘biohacking’ or extreme muscularity. Disordered eating, for some, signals the early (‘prodromal’) stage of an eating disorder. Intervene now, and you will find it relatively easy to bring your child back to stability before they have a diagnosable eating disorder.[ii] If your child ‘just’ has disordered eating, you won’t be ‘giving’ him an eating disorder by supporting him to eat regular meals. On the contrary, you will be relieving him of his present misery, and teaching lifelong habits for happiness and wellbeing.

I know how parents hesitate to ‘make a fuss’. Even when they suspect the illness is there, they fear being heavy-handed. They hope the problem will sort itself out without intervention. Look, that may happen, but nobody can predict if your child will be in that category. Meanwhile it could take quite a few miserable years for this spontaneous recovery to take place. Then there’s the issue that without treatment, some people get a little better but don’t fully recover. The risks are just too high. Start treatment.[iii]

So what signs should be ringing alarm bells? First, a child or adolescent losing weight, or not gaining weight. That is never OK (even if classed as ‘overweight’). Also, eating very slowly, fastidiously, using small plates, small 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 will enjoy a feast with friends, while tutting, ‘I really shouldn’t! Oh, go on, the diet starts tomorrow!’ With an eating disorder, the person is truly anxious, and they restrict or purge afterwards. When the illness is advanced, they might choose a small salad and make it last through starter, meal and dessert. Later they stop meeting friends, partly because it means eating, and partly because their state of anxiety closes them off from others.

Our children are adept at hiding signs. At first, they secretly cut out lunch in school. Then they tell us they’ve eaten with friends and don’t need dinner with us. They get passionate about ‘healthy’ eating and exercise. We yo-yo between worry and reassurance. We’re relieved that they happily tucked into several slices of pizza last night. Later we learn that they only allowed themselves pizza because they skipped lunch.

There are physical signs that the body is reacting to malnourishment: thinning hair, cold hands, sore tummy, constipation, and fur on the face. For lots more indicators of an eating disorder, including specific signs of regular vomiting, check the endnotes.[iv]

Here’s a tip. Take your child on holiday for a couple of days. If they have an eating disorder, you will see their tension rise as they try to restrict while acting normal. You will see how long it takes them to choose food off a menu. They may argue that as you both had ice cream on the beach, you don’t need dinner, and wouldn’t it be nice to go for a run instead. 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),[v] and DSM-5 from the American Psychiatric Association, which I’m using below.[vi]

Binge-eating disorder is characterised by recurring episodes of eating unusually large amounts of food (significantly more, in a short period of time, 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, planning weight loss in great detail. If so, they could be malnourished, with medical risks just as serious as those of an underweight person.

In bulimia nervosa, the same criteria as for binge-eating disorder are used, and there can be just as much yo-yoing 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 diet pills. The danger from these is particularly acute and regular medical checks are needed.[vii]

The criteria for anorexia nervosa – both restricting anorexia and binge-purge anorexia – are:

• calorific restriction resulting in significantly low body weight
• intense fear of gaining weight or becoming fat, even though underweight, or persistent behaviours that prevent 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

If someone meets these three criteria and also regularly binges and purges, then the diagnosis is binge-purge anorexia, not bulimia. Bulimia doesn’t have the long-term weight suppression: most patients have a normal or higher than normal body weight. They may sometimes fast for a day or two but their brain is not so strongly affected by malnourishment. As a result people suffering from 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 affecting people since young childhood, and it’s an umbrella term for a range of difficulties and causes. There may be a lack of hunger, or extreme picky eating. A person – especially if autistic – may have sensory difficulties with textures or tastes, perhaps only tolerating a limited range of bland (‘beige’) foods. Some people have a phobia following a choking incident or a fear of vomiting (emetophobia). 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 needs more collaboration with your child, a slower pace, and you may find there are real limitations to 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 serious 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.[viii]

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.[ix] This is anorexia nervosa without the ‘significantly low weight’. The best experts want to do away with 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 eating disorders not otherwise specified (EDNOS). This classification was used in a previous manual, DSM-IV. Many patients who were in this category would now be diagnosed as having 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. Some will only eat protein or make dangerous use of supplements[xi] 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. 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 danger-ous 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.[xiii]

There is also drunkorexia, where an alcohol drinker regularly restricts food to control calories, or to become drunk faster.

‘Normal’ or 'healthy' weight: just as ill

Too often, people get taken seriously only if their eating disorder is anorexia and if they are emaciated. That is wrong and dangerous. Yes, if someone’s BMI (Body-Mass Index) is very low, it’s correct and essential that they get urgent medical tests and the attention of eating disorder services. The reverse is not OK: if your child’s BMI is categorised as ‘healthy’ or above, and they’ve been losing considerable weight, they need the same medical and psychiatric attention as someone who looks very thin. They urgently need to get nourished. Current guidelines make this amply clear.[xiv] A person can be praised for their newly slim figure one day and rushed off to hospital the next.

While a fast rate of loss drives the risk level up, medical attention is also re-quired for people whose weight loss is slow but prolonged, and for people with ARFID whose low weight may be lifelong.[xv]

Below are some of my picks from the UK’s Royal College of Psychiatrists:[xvi]

• “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”

More on my website:

• Atypical anorexia diagnosis? Handle with care[xvii]
• How much weight did your child lose? Weight suppression is critical in diagnosis and treatment[xviii]

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 get nourished and regain lost weight. Be wary of ‘Dr Google’, as it will show you syndromes with symptoms that are actually ‘normal’ in many children suffering from anorexia and malnutrition.

• More on my website:
• Bizarre yet normal eating disorder symptoms[xix]
• About PANS or PANDAS[xx]

Keep the sense of urgency

When I started reading books on eating disorders, I skipped the bits that shouted, take your child to a doctor! I wanted to read only about what we could do as parents. We had an utterly unscientific notion that ‘medicalising’ our children – having them labelled with an eating disorder – could give them an illness they might not have. Perhaps this was just a phase, we thought. When at last I consulted the family doctor on my own, five months had passed since the trigger that had made our daughter decide to cut down on sweets. Only two months before that first appointment, I’d noted in my diary that I was ‘sometimes concerned’ that she was hardly touching her lunch. Young children with anorexia can deteriorate rapidly, and that’s what hap-pened with our daughter. Each day seemed twice as bad as the previous one. Sud-denly we became desperate to have specialist help, very urgently. Luckily, our doctor recognised the signs and symptoms I described and immediately referred us to spe-cialist services.

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[xxi] to be done, some of them urgently. Refer your clinicians – whether your family doctor or emergency services – to these. Bring a printout. For instance, a simple blood pressure reading isn’t good enough: what’s needed is the difference between lying and standing (orthostatic). And normal blood test results can hide bigger issues due to malnutrition.[xxii]

Click for medical checks

Risk assessment, physical examination and LOTS more for the UK: Medical Emergencies in Eating Disorders (MEED), Royal College of Psychiatrists, UK, for all ages

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

“Blood parameters that fall within laboratory reference ranges are frequently seen in advanced uncomplicated malnutrition and should not be taken as cause for reassurance.”[xxiii]

Getting a referral for diagnosis and treatment

It really pays off to treat early, while symptoms are still relatively manageable. And yes, that’s precisely when parents tend to watch and wait ‘so as not to make things worse’. The truth is, we can’t do any harm by getting a specialist assessment, and if your child does have an eating disorder, delays make treatment harder. If you con-sulted your doctor about Stage 1 cancer, you wouldn’t expect to have to wait until it has progressed to Stage 2.[xxiv]

Some family doctors (a primary care provider, general practitioner (GP) or paediatrician) have caused harm when ruling out anorexia because the person is too young, or male, or not emaciated[xxv]. Some even praise the young person for their ‘healthy’ eating and weight loss.

The worst-case scenario is when a parent is disbelieved and branded as over-anxious or even harmful. I’m going to help you prepare for your first visit to a doctor or specialist, so that you get what you need even if it turns out the person you’re consulting doesn’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. And list symptoms, data, and a few well-chosen anecdotes to illustrate your points. For example:

• What your child ate and drank yesterday / this week.
• Foods your child now refuses.
• The exercise he takes. Give figures for the last week or month.
• The kind of 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 hairs on the face or body, changes in the menstrual cycle.
• Psychological changes, mood, behaviours, including any obsessions or compulsions and any self-harm. If he pinches at invisible flesh on his tummy, demonstrate it. If your child weighs himself repeatedly, say so. Also say if your child has been lying, hiding food, secretly exercising or trying to make himself sick. Describe how he resists when you try to feed him.
• Any vomiting or use of laxatives, diuretics or diet pills. Your child will need medical checks without delay, whether or not he’s underweight.
• And finally, say you believe, from your research and observations, that your child has an eating disorder and that they need 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. Indeed whenever interviews or questionnaires[xxvi] are used to assess your child for an eating disorder, it is good practice for parents to be included. A young adult has a legal right to keep you out, but you are always allowed to write or phone in with your list of symptoms.

Don’t allow 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? It’s not relevant to diagnosis or to the first phase of treatment.

‘Wait and see’ is not acceptable when you suspect an eating disorder. Insist on an urgent referral – both to get expert diagnosis and to start treatment. Note that in England there is such a focus on early intervention that parents can bypass the GP and self-refer to specialist services.[xxvii] If you are 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.[xxviii]

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 to know 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, ‘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 that you ask the family doctor to keep it that way. Get your kid to stand on the scales facing backwards. Later, when you speak to a specialist, you can discuss whether to go for open or blind weighing, but 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, phone, write, document everything, use com-plaint procedures, use your local politicians and parent networks. Any immediate medical worries, visit emergency services, armed with a printout of the required checks.

If a doctor is blocking access to specialists because they believe your child is fi-ne, here’s a rather extreme and uncomfortable tip: turn on the audio or video recorder on your phone while your child is acting in highly symptomatic ways.

If you’re on a waiting list, I suggest you phone regularly to check on the refer-ral, and that you inform the 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 and begin your part of the treatment.

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Endnotes [Click]

[i] A study of over 80,000 US adolescents found disordered eating behaviours among 57 percent of young women and 31 percent of young men. Croll, J., Neumark-Sztainer, D., Story, M. and Ireland, M. J., ‘Prevalence and risk and protective factors related to disordered eating behaviors among adolescents: relationship to gender and ethnicity’ in J Adolesc Health (August 2002), vol. 31, no. 2, pp. 166-75. http://www.ncbi.nlm.nih.gov/pubmed/12127387

[ii] Therapists Lauren Muhlheim and Therese Waterhous present two case studies in support of early intervention: ‘Can FBT Strategies be used for early eating disorder intervention and prevention?’ in https://www.feast-ed.org/can-fbt-strategies-be-used-for-early-eating-disorder-intervention-and-prevention/

See also an adaptation of FBT for the ‘prodromal’ or ‘subsyndromal’ or ‘subthreshold’ stage, in ‘Family-based treatment for prodromal anorexia nervosa’, Corine Sweeney, Katharine L Loeb, Amy Parter, Lisa Hail, Nancy Zucker. In Chapter 9 in Family therapy for adolescent eating and weight disorders edited by Katharine Loeb, Daniel Le Grange and James Lock, Routledge, 2015 amzn.to/3jVPjO7)

[iii] Anorexia studies show that some people recover without treatment, and some don’t. If you do nothing, your child may be among the relatively ‘lucky’ ones: it looks as though approximately 50–70 percent of individuals with anorexia attain a complete or moderate resolution of the illness by their early- to mid-twenties. We’re talking maybe five to seven years of illness or more. And what if your child is not in the lucky group? We have no way of predicting if, untreated, she would be part of the 30 to 50 percent for whom anorexia becomes a severely disabling chronic or fatal illness. Kaye, W. H., Fudge, J. L. and Paulus, M., ‘New insights into symptoms and neurocircuit function of anorexia nervosa’ in Nature Reviews. Neuroscience (August 2009), vol. 10, pp 573–84. nature.com/nrn/journal/v10/n8/execsumm/nrn2682.html
Regarding the mortality statistics, there is hope in a study of women followed for 10 years after diagnosis, most of whom were doing pretty well. Mustelin et al, ‘Long‐term outcome in anorexia nervosa in the community’ in Int J Eat Disord 2015; 48:851–859, doi.org/10.1002/eat.22415

[iv] I list signs on anorexiafamily.com/school-early-detection-eating-disorder See also feedyourinstinct.com.au

[v] The International Classification of Diseases (ICD) icd.who.int/en

[vi] The American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders (DSM-5) (fifth edition) is referred to – to varying degrees – in a number of countries. More detail on my website anorexiafamily.com/classification-eating-disorders

[vii] More on effects and medical checks in ‘How self-induced vomiting impacts your body’ by Pamela K. Keel. edcatalogue.com/self-induced-vomiting-impacts-body

[viii] Examples in ‘OSFED, the “other” eating disorder’ by Lauren Muhlheim verywell.com/osfed-the-other-eating-disorder-1138307

[ix] Hay, P., Mitchison, D., Collado, AEL, González-Chica,DA, Stocks, N., Touyz, S. 'Burden and health-related quality of life of eating disorders, including Avoidant/Restrictive Food Intake Disorder (ARFID), in the Australian population' J Eat Disord. 2017 Jul 3;5:21 www.ncbi.nlm.nih.gov/pubmed/28680630

[x] Listen for example to The Full Bloom Project podcast fullbloomproject.com/podcast/boys

[xi] Bryn Austin, 2019, pewtrusts.org/en/research-and-analysis/articles/2019/06/05/study-ties-some-dietary-supplements-to-medical-harms-in-children-young-adults

[xii] universityofcalifornia.edu/news/22-percent-young-men-engage-disordered-eating-bulk

[xiii] See for instance NEDA’s guide on orthorexia nationaleatingdisorders.org/learn/by-eating-disorder/other/orthorexia

[xiv] Risk assessment, physical examination and LOTS more for the UK: Medical Emergencies in Eating Disorders (MEED), Royal College of Psychiatrists, UK, for all ages: tinyurl.com/muv44e9u. 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 doi.org/10.1176/appi.books.9780890424865.eatingdisorder02

[xv] Medical Emergencies in Eating Disorders (MEED), Royal College of Psychiatrist, UK tinyurl.com/muv44e9u

[xvi] Medical Emergencies in Eating Disorders (MEED), Royal College of Psychiatrist, UK tinyurl.com/muv44e9u

[xvii] Atypical anorexia diagnosis? Handle with care anorexiafamily.com/atypical-anorexia

[xviii] How much weight did your child lose? Weight suppression is critical in eating disorder diagnosis and treatment anorexiafamily.com/weight-suppression-target-atypical-anorexia

[xix] anorexiafamily.com/bizarre-normal-eating-disorder-signs

[xx] anorexiafamily.com/pans-pandas-bge-inflammation-eating-disorder

[xxi] For the UK: Medical Emergencies in Eating Disorders (MEED), Royal College of Psychiatrist,: tinyurl.com/muv44e9u In particular, page 184, in Appendix 3. You could also point clinicians to Annexe 1.
For the US, see the Academy for Eating Disorders (AED) guide to Medical Care (pint out pages 8 to 9) and the one for Nutrition Treatment (print pages 18 to 22): aedweb.org/resources/publications
Lots of useful standards also in The American Psychiatric Association Practice Guideline For The Treatment Of Patients With Eating Disorders, 2023 doi.org/10.1176/appi.books.9780890424865.eatingdisorder02 Also Medical Management of Restrictive Eating Disorders in Adolescents and Young Adults, The Society for Adolescent Health and Medicine (SAHM), J Adolesc Health 71(2022) doi.org/10.1016/j.jadohealth.2022.08.006

[xxii] Dr Jennifer Gaudiani in ‘Sick enough’ https://amzn.to/3AKDWQb)

[xxiii] Page 29 of Medical Emergencies in Eating Disorders (MEED), Royal College of Psychiatrists, UK: tinyurl.com/muv44e9u

[xxiv] Video of Dr Rebecka Peebles speaking at Maudsley parents’ conference on ‘Eating Disorders: What Pediatricians and Parents Should Know’, http://vimeo.com/50460378. I highly recommend this one-hour talk as I found it informative and empowering.

[xxv] If your child is ‘not underweight’, see my page Atypical anorexia diagnosis? Handle with care anorexiafamily.com/atypical-anorexia

[xxvi] Christopher Fairburn developed and validated adult and child forms of therapist-led interviews (EDE-I) and self-report questionnaires (EDE-Q) to assess the presence and degree of an eating disorder. I never noticed it being used with my daughter, which is fine with me as it focuses a lot on some symptoms and not on others. There’s a lot about shape and weight, which isn’t an issue for everyone. This questionnaire would have missed the ‘holy anorexics’ of yesteryear. You can get the adult questionnaire from corc.uk.net/media/1273/ede-q_quesionnaire.pdf, and background information on corc.uk.net/outcome-experience-measures/eating-disorder-examination-questionnaire-ede-q/. The adult questionnaire and interview are also in the CBT-E therapists’ manual: Fairburn, C. G., ‘Cognitive Behavior Therapy and Eating Disorders’ (amzn.to/3yKJSHQ). The child version of the interview is named ChEDE-I.

[xxvii] In England parents of under-18s can self-refer to their closest specialist eating disorders service, according to the ‘Access and Waiting Time Standard for Children and Young People with an Eating Disorder. Commissioning Guide’ which I explain on anorexiafamily.com/nhs-england-commissioning-guide-eating-disorders-access-waiting/. Also, anywhere in the UK, a school nurse can refer to Child and Adolescent Mental Health Services, and of course you can also change your general practitioner (GP). If you have no confidence in any of your clinicians, you can ask them to refer you to one of the country’s specialist NHS units (more in Chapter 12).

[xxviii] In the UK you have to ask your GP to refer you to another specialist for a second opinion. I know of families for whom this hasn’t been straightforward: if this happens in your case, get an advisory body to inform you of your rights. In the UK, consult the Citizens Advice Bureau, which has an arm specialised in patients’ rights, or BEAT. Wherever you are, network with parent advocates, eating disorders specialists, paediatricians, or psychiatrists who can open doors for you when your current treatment providers are putting up barriers.

[xxix] anorexiafamily.com/workshops-eating-disorder

[xxx] anorexiafamily.com/statistics-prevalence-incidence-how-common-eating-disorders-anorexia-bulimia

[xxxi] anorexiafamily.com/international-eating-disorder-help

More on my website:

• My online workshops so you can get started with the essentials right away

• 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!

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Onwards:

* Go to: Table of contents *

* Next: Chapter 4: Treatment – the essentials *

Resources to help you right now: