When John and Julie Armstrong’s 12-year-old son, Jed, told them that he wanted to get fit in the summer of 2014, neither thought anything of it. A keen footballer, Jed designed a regime of exercise for himself – sit-ups, push-ups, and squats – and started to watch what he ate.
“I kind of thought that I was a bit overweight,” Jed, now 13, recalls. There was no particular trigger for wanting to do something about it, he says no bullying or teasing: “One day I just started thinking of it.”
What happens with young people is that they take on these messages [of health and fitness] to an absolute extreme.
Susan Sawyer, Adolescent health director, Melbourne Royal Children’s Hospital
But somewhere along the line, he started to think of little else, and his health kick became distinctly unhealthy. In his mind, he wanted to take his short, 50 kilogram frame down to 35 kilograms. He eventually got to 36 kilograms.
By April, John and Julie were starting to worry. Julie had had anorexia and bulimia in her late teens, and knew the signs. She watched Jed starting to exercise in his room with the door closed, and noticed that he was eating much less. He was changing too. His mood became lower and he wanted to wear thick clothes all the time because he was cold.
They spoke to a counsellor at Jed’s school, who suggested he see the school psychologist. She in turn recommended an outside psychologist, and it was there they heard the word they were starting to fear: anorexia.
In the last week of term two, Jed emailed the school psychologist to tell her he felt sick and couldn’t concentrate. Soon after, with his heart rate just 44 and his blood pressure dangerously low, the family rushed Jed from their Melbourne home to the Royal Children’s Hospital, where he was diagnosed with atypical anorexia and admitted for two weeks.
Point of difference
The “atypical” part of the diagnosis is a relatively new phenomenon. The sufferers are atypical because they have all the symptoms and signs associated with anorexia nervosa, but they are not underweight at the time of diagnosis. In fact, many are overweight or even obese before they start losing weight and some remain so on admission.
Michael Kohn, co-director of Eating Disorder Service, Sydney Children’s Hospital Network, Westmead, says he has also seen a rise in cases of atypical anorexia, both in the children’s and the adult hospitals: in fact, 31 per cent of patients at Westmead and a somewhat smaller proportion at the children’s hospital are atypical cases.
Associate professor Kohn says that, in the adolescent group, he is also seeing more patients with the traits of autism too, such as inflexibility in thinking and high anxiety, which in turn makes them more vulnerable to eating disorders.
Director of Centre for Adolescent Health at Melbourne’s Royal Children’s Hospital Susan Sawyer said her team have seen a huge rise in incidence – a fivefold increase in just six years – to the point where a third of their anorexia patients now fall into the atypical category.
While it might be tempting to think that the young person is becoming healthier by shedding a large amount of weight, Professor Sawyer says, in fact it is highly dangerous to do it so dramatically, sending the body into shutdown to survive. Like those with typical anorexia, patients present with low heart rate and blood pressure, dizziness and fatigue, and girls have sometimes stopped having periods. Then there is the mental health problem to deal with: low mood and anxiety, the obsession with food, the terror of gaining weight or becoming fat.
“It would certainly seem to be the rapidity of the weight loss that is the problem,” she says. “This weight loss that had been voluntary then becomes involuntary as the disordered thinking takes over.”
Otherwise, it is thought that atypical anorexia has much in common with typical anorexia: its onset is about 13 to 15 years of age, it has both medical- and mental-health symptoms, and about 90 per cent of patients are female.
Anorexia generally is a poorly-understood disease and notoriously difficult to diagnose. Professor Sawyer says that, understandably, GPs are often not catching the signs of atypical anorexia in its early stages, because the patients are not underweight and because they are often skilled at hiding their illness.
“Parents know there’s something very seriously the matter, but the attitude in primary care can be … let’s just wait and see what happens,” she says.
The sudden appearance of young people with atypical anorexia has a number of causes. Firstly, the mental health “bible”, the Diagnostic and Statistical Manual, has recategorised atypical anorexia away from a general grab-bag of non-specific eating disorders. This distinction makes the number of cases more obvious. But Professor Sawyer believes there is also a real rise in its incidence, and says it is no coincidence that the spike in these cases has happened alongside loud and public concern about our obesity epidemic, emphasising the need to eat well and exercise.
For young people who already have low self-esteem, anxiety and a vulnerability to eating disorders, that message can be taken too literally. None of the patients were in a formal weight-loss program before being treated for anorexia and there is rarely a single, traumatic event that acts as a catalyst: the disease instead tends to take them by stealth. Once in its grip, patients become obsessed.
“What happens with young people is that they take on these messages to an absolute extreme,” she says.
Professor Kohn says that likewise, none of the patients in the Westmead hospitals were on a formal diet program before becoming ill with atypical anorexia, but organised sports, with their focus on fitness and healthy eating, can be a particular risk for those who are already vulnerable.
Despite the difficulty not just of diagnosing but also treating the disease – hampered by the fact that it prevents patients from wanting to recover or even acknowledging that they are unwell – doctors are having success in treating young people with family-based treatment (FBT), a “tough-love” approach that involves the whole family ensuring that the young person eats and gains weight.
And it is the initial weight gain that is key: before the disordered thinking can be addressed, patients have to start eating properly and gain weight in order to recover. Even so, one-third of patients will go on to have the disease in adulthood, and “that has really devastating consequences,” Professor Sawyer says.
Atypical anorexia patients in fact seem to have more success at recovering from the disease, Professor Kohn says, because they have the vulnerability but not the same genetic predisposition to the disease. They are also less like to binge eat and need readmission to hospital.
Martin Pradel, team leader of FBT in the mental health team, says families often enter the six-month program distraught and overwhelmed.
“Parents come to us demoralised, confused, very guilty about the fact that their child has got to this position. And often they see themselves as the cause,” he says. Instead, they are reassured that they are in fact the solution.
“Over time the child begins to see that the parents are taking charge of this.” And that means that sometimes just one meal – and patients are required to have six a day – can take two to three hours.
The Armstrongs know how arduous FBT can be. John says they would sometimes spend eight hours a day at meal times.
“Every meal would be at least an hour. There was yelling, there was tears for both of us,” he recalls. “Every mouthful had to be coaxed – ‘come on, mate, have another mouthful’.”
Ultimately, though, it was Jed’s determination to make himself well that has proved the turning point. As he tells it, one day he was playing at a friend’s house, struggling with his illness. The next day, buoyed by a possible holiday with his friend if he was well, he felt determined to beat the disease. He slowly gained weight, and now has recovered enough to train for footy three nights a week and play matches on weekends.
“Jed still struggles, I can see him struggling,” John says. “But he’s so strong and so determined … He really is dedicated to getting himself well.”