Is Childhood Bipolar Over Diagnosed?: Fashion and the DSM
The DSM – the Diagnostic and Statistical Manual of Mental Disorders – is recognised today as the bible of psychiatry. A comprehensive list of all the mental illnesses that officially exist and their symptoms, this book is extraordinarily powerful: the words within its pages have influenced countless lives.
But have those lives changed for the better? Is the DSM a scientific benchmark or, as some have attested, is it – like changing skirt lengths – driven by fashion?
Psychiatrist Robert Spitzer was the man who created the manual’s elevated standing (and hefty size). When he took on the job of editing DSM-3, in 1973, it was just 134 pages long, and hardly anyone had heard of it.
‘For six years Spitzer held editorial meetings at Columbia. They were chaos. The psychiatrists would yell out the names of potential new mental disorders and the checklists of their symptoms and there would be a cacophony of voices in assent or dissent – the loudest voices getting listened to the most. If Spitzer agreed with those proposing a new diagnosis, which he almost always did, he’d hammer it out instantly on an old typewriter. And there it would be, set in stone.’
‘That’s how practically every disorder you’ve ever heard of or been diagnosed with came to be defined.’
When the new DSM was published, in 1980, it was 494 pages long.
Ronson describes the result, with 83 new disorders, as a ‘gold rush for drug companies’; Spitzer agrees.
‘I love to hear parents who say, “It was impossible to live with him until we gave him medication and then it was night and day”,’ he told Ronson happily.
Bipolar disorder was one of those additions to DSM-3. In 2000, childhood bipolar – previously thought to be rare, even non-existent, before adolescence – was added to the DSM-4.
Allen Frances, editor of DSM-4, has recently talked about regretting his role in the further expansion of classified mental illnesses (32 more disorders were added and the manual grew to 886 pages under his editorship). What he calls the ‘false epidemic’ of childhood bipolar is one of his most pressing areas of concern.
Childhood bipolar really took off at Massachusetts General Hospital, where prominent child psychiatrists developed the theory that developmental differences in children mean that they have a different bipolar presentation from that of adults. ‘Rather than clear-cut cycles of mania and depression, bipolar kids were said to have continuous irritability, moodiness, and behaviour problems,’ wrote Allen Frances for Huffington Post recently.
He says that the backers of this approach lobbied hard for their new definition to be included in the DSM, but it was rejected for lack of scientific evidence. ‘This did not inhibit the enthusiasm of the new thought leaders in child psychiatry as they spread their new gospel.’
Pulitzer prize-winning novelist Jennifer Egan wrote a long profile on childhood bipolar for the New York Times in 2008. She reported that ‘nearly every clinician [she] spoke to said that bipolar illness is being overdiagnosed in kids’; in studies by the National Institute of Mental Health, ‘only 20 per cent of children identified with bipolar disorder are found to meet the strict criteria for the disease’.
Why does this matter? Children diagnosed as bipolar are medicated with antipsychotic and mood stabilising drugs that have serious side effects. Complications include major weight gain, obesity, diabetes, cardiovascular disease and possibly shortened life expectancy.
‘The problem is not that medications are being used at all (sometimes they have to be), but that they are being used so much, so carelessly, so early in life, and for such inappropriate and sometimes trivial indications,’ says Frances.
Jennifer Egan found that the drugs used to treat irritable, aggressive children are often the same as those used for bipolar disorder; she spoke to one of those psychiatrists who were influential in the redefinition of childhood polar, Janet Wozniak (director of the pediatric bipolar-disorder program at Massachusetts General Hospital). All but one of the manic children in her original study had ADHD; Egan found that ‘a severely irritable child who has ADHD could be, theoretically, only one symptom away from a bipolar diagnosis’.
Gabrielle Carson, director of child and adolescent psychiatry at the Stony Brook University School of Medicine, has studied childhood childhood mania for many years, disagrees with the new childhood bipolar. She told Egan that it is rare in children under ten and presents in the same discrete episodes of mania and depression as bipolar adults, not in chronic irritability.
She believes that a large group of aggressive and explosive children who are ‘diagnostically homeless’ are being relabelled as bipolar – and that this is a concern.
Jennifer Egan also spent time with the families of children diagnosed with bipolar.
One family, where the parents are both bipolar, had two bipolar children; the whole family are medicated for it. This may not be as odd as it seems; a recent study shows that children with even one bipolar parent are 13 times more likely to develop the disease.
Marie’s daughter Phia was ‘overstimulated almost from birth’, becoming hysterical in response to ordinary sights and sounds – her mother couldn’t wear coloured shirts, for example. Phia tormented her brother and had silly moods that spiralled out of control. ‘She was asking for medicine for at least a year or so,’ Marie told Egan. She asked, ‘Isn’t there anything they can give me to help me calm down?’
Much of her extreme behaviour eased with medication, though it has fluctuated, with her medication adjusted accordingly. Phia’s friends don’t know she’s bipolar and she worries the would judge her for it; Marie says her parents and siblings don’t believe her children are bipolar and disapprove the medication, while the school also has doubts. Marie herself has questioned it; the the burden of responsibility for her children’s diagnoses weighs heavily on her.
‘I re-experience some mourning or grieving for the kids with each medicine change,’ she told Egan. ‘The unknowns are so daunting and somehow I feel guilty for taking such risks.’
In 2006, in Boston, Massachusetts, four-year-old Rebecca Riley died of an accidental overdose of the antipsychotic medication she’d been prescribed for her bipolar disorder (diagnosed when she was two-and-half). Her parents, who were convicted of murder, had ‘got into the habit of feeding her the medicines to shut her up when she was being annoying,’ wrote Jon Ronson.
Her mother, Carolyn Riley, was interviewed by 60 Minutes after Rebecca’s death. Ronson reports the following exchange:
Reporter: Do you really think Rebecca had bipolar disorder?
CR: Probably not.
Reporter: What do you think was wrong with her now?
CR: I don’t know. Maybe she was just hyper for her age.
Join us next Tuesday night for our Intelligence Squared debate on whether Our Children Are Over Diagnosed. Melbourne Town Hall, 6.30pm-8.30pm.
Speakers for the proposition are Jane Caro, Martin Whitely, author of Speed Up and Sit Still: The Controversies of ADHD and Jon Jureidini, child psychiatrist, professor in psychiatry and paediatrics at Adelaide University and spokesman for Healthy Skepticism.
Speakers against the proposition are Nicole Rogerson, CEO of Autism Awareness Australia and director of the Lizard Children’s Centre, Katie Allen, paediatric gastroenterologist and allergist in the field of Food Allergy at Melbourne’s Royal Children’s Hospital, and Jane Burns, public health academic and advocate, and CEO of Young and Well Cooperative Research Centre.