The parent’s part in eating disorders diagnosis

Find out how eating disorders are diagnosed, the pitfalls you can guard against, and get tips on how to get expert 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 getting specialist care and you’re satisfied with your child’s diagnosis, feel free to skip this entire chapter. My aim here is to help parents who haven’t yet sourced competent treatment.

When you see someone with a diagnosed eating disorder close up, you understand how this is an illness that requires prompt treatment. You can see how this person has no choice around their thoughts, beliefs or behaviours. When your perfectly fine 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.

It’s quite possible that around half of the rich world has something rather different: disordered eating.[1] People don’t like their bodies, they worry about what they eat and how much they exercise, they diet, they binge, they weigh themselves, they use diet pills, they worry about particular food groups and have bouts of ‘healthy eating’ and detox. If you ask any of these people to join you for a birthday meal, they may experience a twinge of internal conflict, they may promise themselves that the diet starts tomorrow, but unlike someone with an eating disorder, they’re unlikely to feel panic.

There may be some overlap between eating disorders and disordered eating, but it’s important not to lump the two together, because they require completely different levels of support. The mechanism of causation is probably different too – eating disorders have a strong genetic component.

Someone with disordered eating can safely continue living with their hang-ups or they may gain freedom through their own efforts, with a low level of support. With an eating disorder there are some people for whom the illness resolves itself without the level of intervention I describe in this book. And in the same way as many illnesses come with different levels of severity, eating disorders seem to hit some people harder and longer than others. But in general, people with eating disorders need specialised care and intensive support.

If your child has an eating disorder, the earlier you intervene, the better. Yet in the early days it can be difficult to tell if your child ‘just’ has disordered eating, like many of her school friends. At this stage she may not restrict her food in a consistent manner. One minute you’re worried because she’s gone for a run and missed lunch, then you relax as she happily tucks into several helpings of pizza. For all you know, the only reason she’s allowing herself the pizza is that she skipped lunch. My hunch is that you should intervene if any of the following makes your heart skip a beat.

Can you identify if your child’s drive to restrict food (or to compensate for calorie intake) is a compulsion, or if she has any choice over it? Do you get a sense that food or body shape or exercise are her main preoccupations, that she is becoming unwilling and unable to eat and that she is giving up on the good things in life because of it? Is she avoiding food in order to feel safe and free of anxiety, or does she ‘just’ want to lose weight to fit into a party dress? Has her mood taken a dip, and is she withdrawing from you or from friends?

Here’s a tip I’ve heard both from our GP and our eating disorders specialists: if a parent thinks their child has an eating disorder, they’re most probably right.

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Getting a referral for diagnosis and treatment

In an ideal world, parents would consult the family doctor as soon as they suspect their child has an eating disorder. The doctor would be knowledgeable about eating disorders, and would ask the right questions to tease out relevant signs and symptoms. Specialist treatment would be offered without delay. No parent would need to read this section.

But in the real world some doctors fail to diagnose or they misdiagnose. Some adopt a wait-and-see approach, which the child can pay for dearly. In some regions, even when family doctors act swiftly, there is a long waiting list for mental health services. As Dr Rebecka Peebles says in an excellent conference video for parents and doctors, if you consulted your doctor about Stage 1 cancer, you wouldn’t expect to be told to wait till it’s progressed to Stage 2.[2]

We got close to the ideal world, but for many families the road is quite bumpy.[3] The worst-case scenario is when a parent is disbelieved and branded as over-anxious or even harmful. In this section I want 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 is not up to date in their knowledge.

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 a completely unscientific notion that ‘medicalising’ our child – having her labelled with an eating disorder – could give her an illness she 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. Rapid deterioration may be a characteristic of anorexia in young children and that’s what happened in our daughter’s case. Each day seemed twice as bad as the previous one. Suddenly we became desperate to have specialist help, very urgently.

Our doctor recognised the signs and symptoms I described and immediately wrote a referral to Child and Adolescent Mental Health Services (CAMHS). There were delays due to administrative hiccups. We were given the surreal news that the waiting list was 12 months. I was frequently on the phone to the CAMHS receptionist to report on my daughter’s worsening condition. Our struggling health service works best for those who have the education and assertiveness to push, and within two and a half weeks, we were sitting in our first session with a CAMHS nurse.

How are different types of eating disorder diagnosed?

Your family doctor’s job – at least in the UK – is not so much to diagnose as to refer you to a specialist who is competent to make a diagnosis. There are hotly debated criteria to diagnose eating disorders. In most countries, diagnosis is informed by one or both of these main sources: the International Classification of Diseases (ICD)[4] from the World Health Organisation (WHO), and the Diagnostic and Statistical Manual of Mental Disorder (DSM-5)[5] published by the American Psychiatric Association (APA).

In the UK it seems that we keep an eye on the DSM but use the ICD more. ICD is soon to be revised and is likely to contain similar updates to those of DSM-5.

So what are the DSM-5 criteria for eating disorders?[6]

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.

In bulimia nervosa, the same criteria as for binge-eating disorder are used, but in addition there are inappropriate compensatory behaviours (purging) such as vomiting, laxative use, fasting and excessive exercise.

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 lack of 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 even higher than normal body weight, and their brain is not 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.

There are also classifications for rumination disorder, pica, and avoidant/restrictive food intake disorder (ARFID).

Equally concerning, and at least as frequent, are eating disorders categorised as other specified feeding or eating disorder (OSFED), and unspecified feeding or eating disorder (UFED).[7]

You may come across eating disorders not otherwise specified (EDNOS). This classification was used in the previous manual, DSM-IV. Many patients who were in this category would now be diagnosed as having anorexia, bulimia or another specified eating disorder.

Some conditions seem to have all the main elements of a diagnosable eating disorders but are not presently classified as such. The uncontrollable urge among some body builders to gain muscle regardless of the health and social cost, the rigid diet of protein and supplements, the distorted perception of being puny (muscle dysmorphia) is sometimes called reverse anorexia.[8] Another phenomenon is orthorexia, an obsessive rigidity around eating ‘healthy’, pure or organic, to the extent that people become ill from malnourishment.[9]

Difficulties with diagnosis

The current DSM criteria are a vast improvement on the previous edition of the manual, but you may still have problems getting the most appropriate treatment because the old criteria tend to stick around among clinicians. For anorexia, unhelpful criteria that have now been dropped include low-body-weight thresholds and the loss of periods. However, note that ‘significantly low body weight’ remains as one of the criteria for a diagnosis of anorexia, and because of this, children can be failed by the system. According the UK’s Royal College of Psychiatrists:

“Young children and pre-pubescent adolescents may present without the typical features (e.g. absent periods or significantly low body mass index (BMI)) found in adults, and the behaviours associated with eating disorders are often covert […] The most medically compromised patients can have a normal weight.”[10]

The ‘significantly low body weight’ criteria won’t distract anyone who understands anorexia, but sadly it can mislead clinicians who are less informed.

“The doctor said, ‘Your son doesn’t have anorexia because his BMI isn’t low enough.’”

The reason some kids are not underweight is they started off overweight and have shed a lot of weight dangerously fast (and have been praised for it). Another reason might be that their parents have done an amazing job of getting them to eat in spite of everything, or that the parents took them to the doctor early.

The current diagnostic criteria may fail to catch the illness early, before there is weight loss and cognitive distortion. This is tragic because early treatment is shorter and more effective.

Anorexia, bulimia, binge eating: artificial distinctions

Don’t be surprised if you find none of the diagnostic criteria for various eating disorders perfectly describe your child’s symptoms. There are overlaps and even specialists don’t all agree on the diagnostic criteria. It’s quite common for sufferers to swing from one type of eating disorder to another. The distinctions help researchers to be consistent but they are rather artificial. Some therapists consider that distinctions are not relevant to treatment (this is called the ‘transdiagnostic’ model of eating disorders).[11]

Consider for instance a child who has lost weight, refuses most foods, is anxious and withdrawn, and needs to be fed by nasogastric tube. Sounds like anorexia, right? But what if this child knows he’s thin and would like to gain weight? According to DSM-5 he doesn’t have anorexia because the third criteria doesn’t apply. He’ll be categorised as having avoidant/restrictive food intake disorder (ARFID). Yet most experts would consider him to have anorexia and would treat him accordingly.[12]

Even within one official diagnostic category like restricting anorexia, there are individual variations. For instance among those affected many, but not all, have at some stage been afraid of swallowing their own saliva. Many, but not all, can’t sit back in an armchair. Many, but not all, have a bullying or cajoling internal voice.

What is certain is that all types must be taken seriously. You don’t need to be emaciated to be in danger. All eating disorders are challenging to treat and can cause immense distress to sufferers and their families. Vomiting and laxative use present particular risks to health.

An unlikely worst-case scenario

I want to warn you of one, very unlikely, risk of misdiagnosis, so that you can avoid it ever happening to you. If your child fits the stereotypical picture of a teenage anorexic girl, you’re unlikely to have problems with diagnosis, so skip the following story.

It is not impossible that a poorly trained clinician will interpret signs of undernourishment or self-harm as child neglect or abuse and dismiss the possibility of an eating disorder. I befriended a mother who lived under the threat of child protection measures as she struggled to get help for her seven-year-old. Her requests for a second opinion were repeatedly blocked, something other clinicians find quite unbelievable and completely out of order. As I write, thanks to this woman’s courage, perseverance and networking, eating disorders experts are now treating the little girl for anorexia. They’re working closely with the parents and things are looking good.

I sincerely hope that the following tips will guard against you ever facing such a distressing situation.

What to tell the doctor to get help fast

I would recommend you do a little homework before your first visit to a doctor. Your doctor may need more than vague impressions to make a referral or diagnosis. And in some countries, like mine, they need to allocate spending responsibly. Also, you don’t yet know how knowledgeable your doctor is. If your child is very young or is a boy or isn’t very thin, there is a risk that an eating disorder will be dismissed out of hand.

What do I mean by homework? I mean preparing a list of symptoms, accompanied by facts and a few well-chosen anecdotes to illustrate your points. If all you tell your doctor is ‘My son is hardly eating’, you’re dependent on your doctor’s skills to draw pertinent information out of you. It’s more helpful to say, ‘Yesterday all he ate was such and such and all he drank was such and such. When I asked him to eat more he said, ‘“$%#!$%!”’.

Here’s a list to help you prepare for your appointment. The examples relate to an eating disorder that has probably been going on for weeks or months . If your child’s symptoms are milder, get him treatment before he gets to this stage:

  • 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.
  • If your child vomits or uses laxatives or diuretics, make sure you talk about that, as it should prompt your doctor to begin monitoring your child without delay, whether or not he’s underweight.
  • And finally, tell your doctor that you guess, from all the research you’ve done, that your child has an eating disorder and that you need some help urgently.

Consider making the first visit to the family doctor alone so that you can talk freely and with precision. If you take your child with you, be aware that he may put on a great show of being well and may lie about how little he eats or how much he exercises. If a doctor isn’t aware of the extent to which an eating disorder can lead normally honest people to lie, you may be the one who’s disbelieved.

Sadly there are cases of a family doctor or a psychiatrist concentrating on anxiety or obsessive-compulsive disorder (OCD) symptoms when the most urgent, life-threatening matter is an eating disorder.

If you’re dealing with clinicians whose competence and expertise you’re uncertain about, my tip is to concentrate on the types of symptoms I’ve listed above. For instance, it’s not appropriate for clinicians to question you about your own – possibly traumatic – past, or to ask if you breastfed or had postnatal depression. Don’t let them dig around for ‘root causes’ in your child’s early years: this information is not relevant to diagnosis, and in the wrong hands, may land your kid with individual psychotherapy instead of specialised eating disorder treatment.

If you disagree with your family doctor, insist on an urgent referral to a specialist. If your disagreement is with a specialist, in my country the procedure is to ask your family doctor 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[13], and use all your networking skills to make contact with parent advocates, eating disorders specialists, paediatricians, or psychiatrists who can open doors for you when your current treatment providers are putting up barriers.

If for some reason you want to bypass your family doctor, find out who else, in your country, can do a referral. 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 these clinicians, you can ask them to refer you to one of the country’s specialist NHS units.[14]

Remember, if a parent thinks their child has an eating disorder, they’re most probably right.

We parents know how dramatically our child has changed and how odd their behaviours have become: our task is for us to convey this to the gatekeepers.

It is accepted good practice for parents to be included in the consultation to assess a child with a suspected eating disorder. If you feel that clinicians are failing to diagnose competently, be aware that the gold standard is the Child Eating Disorders Examination Interview (Ch EDE I).[15] I never noticed it being used with my daughter.

I want to offer you one more tip in case you’re having trouble being believed. Switch on the audio or video recorder on your phone while your child is acting in highly symptomatic ways. I’m not sure how ethical this seems to you, but if your purpose is to save your child’s life, you can’t go too wrong.

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 reduce how much fat we eat,’ 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 you do consult on your own, you’ll probably need to return to get your child’s health checked. If your child doesn’t already know his weight, I recommend that you to keep it that way. Ask for 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

My own experience was good, and yours may be just as smooth. If you are less lucky, I hope that this book helps you to network, to get help, and to keep pushing. At the same time, 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

[1] A study of over 80,000 US adolescents found disordered eating behaviours among 57 per cent of young women and 31 per cent 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

[2] 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.

[3] In Bev Mattock’s book
When Anorexia Came to Visit: Families Talk About How an Eating Disorder Invaded Their Lives
(http://amzn.to/1bcKzbS), you can learn from the experiences of a number of UK parents as they navigated the health service. Our story is included.

[4] The International Classification of Diseases (ICD) from the World Health Organisation is due for revision and will probably use criteria similar to those in DSM-5. Criteria are in Chapter V: F50. http://apps.who.int/classifications/apps/icd/icd10online2003/fr-icd.htm?gf50.htm Or for a short description: http://www.eatingdisorders.org.au/eating-disorders/what-is-an-eating-disorder/classifying-eating-disorders/icd-10

[5] 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.

[6] There’s a handy description of each eating disorder criteria from DSM-5 on the
Eating Disorders Victoria website http://tinyurl.com/qy3hsde
. For a short description of how they differ from the previous manual, DSM-IV, read ‘Welcome Changes to Eating Disorders Diagnoses in the DSM-V’ by Deborah Klinger, http://tinyurl.com/q7rcwbd

[7] One eating disorder which might look like anorexia, but isn’t, is food phobia. Dr Julie O’Toole writes a good explanation in ‘Food Phobia, The Kartini Clinic Recipe’ http://www.kartiniclinic.com/blog/post/food-phobia-the-kartini-clinic-recipe/

[8] For an introduction to reverse anorexia, or muscle dysmorphia among body builders, see
Dr Stuart Murray’s interview
on TakePart Live http://www.takepart.com/video/2014/11/17/eating-disorder-opposite-anorexia

[9] See for instance NEDA’s guide on orthorexia https://www.nationaleatingdisorders.org/orthorexia-nervosa

[10] Junior
MARSIPAN
: Management of Really Sick Patients under 18 with Anorexia Nervosa, report from the Junior MARSIPAN group, College Report CR168 (January 2012), Royal College of Psychiatrists London,
http://tinyurl.com/ku79htm

[11] Christopher Fairburn, who developed and researched cognitive behaviour therapy (CBT-E), proposed a ‘transdiagnostic view’, arguing that bulimia, binge-eating disorder and anorexia all have the same maintaining factors that need to be targeted. Fairburn, C. G.,
Cognitive Behavior Therapy and Eating Disorders
(http://amzn.to/1s6sFOj).

[12] This example comes from Dr Julie O’Toole’s article about DSM-5 diagnostic criteria and about anorexia in very young children, ‘The very young child with anorexia’, http://tinyurl.com/pquwb7y

[13] In the UK, consult the Citizens Advice Bureau, which has an arm specialised in patients’ rights.

[14] The Maudsley hospital in south London provides a national eating disorders service (outpatient and daypatient) for children and adolescents. This is where FBT (or what is called ‘The Maudsley Method’ in the US) originated from. They accept referrals from CAMHS clinicians or consultant paediatricians anywhere in the UK and can give treatment or just a second opinion. https://www.national.slam.nhs.uk/services/camhs/camhs-eatingdisorders/ They are training CAMHS teams in England and Wales in family-based approaches (similar but different to FBT) and in multi-family therapy.

In north London, Great Ormond Street Hospital for Children has a
Feeding and Eating Disorders Service
. They accept referrals from CAMHS clinicians or consultant paediatricians anywhere in the UK and can give treatment or just a second opinion, http://tinyurl.com/qhv63c9

In Scotland, CAMHS can refer under-12s to the Royal Hospital for Sick Children in Glasgow.

[15] 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. You can see the
adult questionnaire
at
www.rcpsych.ac.uk/pdf/EDE-Q.pdf
. The adult questionnaire and interview are also in the CBT-E therapists’ manual: Fairburn, C. G.,
Cognitive Behavior Therapy and Eating Disorders
(http://amzn.to/1s6sFOj). The child version of the interview is named ChEDE-I.

Notice that there’s a lot about shape and weight, which some people with anorexia say is not relevant to them. This questionnaire would not have done much for the ‘holy anorexics’ of yesteryear.

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