Against a background of renewed infighting over proposed changes to the guidelines for diagnosing attention deficit hyperactivity disorder (ADHD), I go to meet a special needs teacher for breakfast at a popular urban cafe.
Allan has been in the game for over 30 years and currently works at a special school, discreetly tucked away on the edge of a sports field. It’s a bland, Department of Education semicircle of prefab buildings that nevertheless, on the day I visited, set off a familiar prickle of uneasiness in my throat of the kind I felt as a child when we dared each other to push through the tangled oleander bushes and set foot in the mad lady’s garden.
Over coffee I ask Allan for his overview of this predominantly childhood disorder, which seems increasingly prevalent, increasingly medicated and unfailingly the subject of antagonistic debate.
“I wish,” he said, “there was a ‘B’ in that label, to remind people we’re describing behaviour. It’s not leprosy or tuberculosis, it’s the way kids conduct themselves. The rule says, if you sit still and pay attention, you’re a good boy or girl. If you fidget, throw things and jump around, you’re not.”
When our food arrives, he surveys the rapidly filling room. “Take this space, it’s Sunday morning, the weather’s crap so we’re indoors and, by some tacit agreement, we’re obeying cafe etiquette. The latecomers have to wait longer for their food. Tables aren’t cleared quickly because the staff are getting pushed. But do you see any tantrums? That guy’s getting a bit impatient but all he does is try to catch the waitress’s eye, he doesn’t lunge at her or stand up on the table shouting obscenities.”
“That’s because we’re adults,” I say.
“And somewhere along the way we learned how to behave. It’s a mysterious process.”
His students, a group of 12 to 20 adolescents (numbers vary depending on suspensions, no-shows and illness) are classified as emotionally and/or behaviourally disordered. The majority are on drug regimes worked out by their prescribing physicians: Ritalin or dexamphetamine for concentration, Catapres for aggression, Risperdal for mood stabilisation, selective serotonin reuptake inhibitors (Zoloft, Prozac, Cipramil etc.) for depression and some compulsive disorders.
“How do your students feel about taking these potent drugs?”
“They’re not given a choice, are they? They’ve all been kicked out of the mainstream – units such as mine exist to segregate these kids until they come of age, or until they can be re-integrated.”
“Are you comfortable with the status quo?”
“There’s no doubt that an out-of-control kid put on Ritalin settles very quickly. Do I wish there was another way? Yes. The reality is, as teachers we can’t do our jobs when a kid is climbing the walls.”
“But I’m always mindful,” he adds, “that we’re treating a very complex condition in a crude way. In 50 years we’ll probably look back and say, ‘Is that the best we could do? Pills?!’”
The notion that ADHD exists as a discrete entity, with an aetiology and a requirement for medical intervention, is not in dispute within our public education system (though some alternative schools, such as Steiner/Waldorf, hold differing views). There have always been children who were slow to read, or daydreamy, or naughty and disruptive, just as there have always been labels to describe their maladjustment. But only recently have these and other ‘square-peg’ characteristics qualified so many children for a clinical intervention that places them in the morning ADHD medication queue.
The uneasiness of this rush to categorisation can be deeply upsetting to parents such as Donna, whose son, Jai, was recently diagnosed with ADHD. Donna and her son have been bouncing from surgery to surgery looking for answers. Donna knew he was “all over the shop”, but says, “Why did that automatically qualify him as a member of the Ritalin club?”
Donna wants to know how Jai’s unique attributes fit into this neat diagnostic formula. There is no blood test for ADHD, no screening like a mammogram that will pick up a lump or discolouration (there are of course sophisticated MRIs for frontal lobe activity, but I take her point). Donna has read the standard drug printouts given in pharmacies, and feels “none the wiser” about medicating Jai’s problem.
Attention deficit hyperactivity disorder, despite its inclusion in the Diagnostic and Statistical Manual of Mental Disorders – currently in its fourth incarnation and known as the DSM-IV – still does not have the wider cachet of being considered an established truth (such as, say, dyslexia). If it did, the debate wouldn’t flare up every time the criteria are tweaked or the statistics on Ritalin prescribing habits are reported.
To find out how schoolboys (the ratio of boys to girls is about 6:1) qualify for the Ritalin club, I made an appointment to meet Jack, a support teacher, and asked him to talk me through the bureaucratic processes of having a child referred.
Jack sees about 20 cases per week at the early intervention stage, children flagged as needing learning support by consensus of the classroom teacher, school counsellor and a school executive. He works from a script adapted over many years, gently interrogating the child’s self-esteem, questioning taken-for-granted social cues (“this is how you listen”, “this is how others show anger”) and, as he moves through his material, he listens for unguarded, revealing remarks, the way a good interviewer or analyst attunes his ear.
If support doesn’t work and the notes in a particular student’s file achieve critical mass, a diagnosis is sought. A measurement tool is brought into play, frequently the Conners 3 Rating Scale, a checklist of questions filled out separately by the teacher, the parent and the child, where answers are chosen from a scale of zero (never) to three (very often). The child answers 99 questions, beginning with the mild statement: “I do what my parents or other adults ask me to do,” before probing into darker territory, such as “I am mean to animals” and “I destroy stuff that belongs to other people.” The raw scores are tallied, the computations entered into a matrix and jiggled to produce a transposed score, and the assessor ends up with an ADHD Index Probability Score expressed as a percentage.
A clinician – usually a paediatrician or child psychiatrist – will conduct a physical examination of, and an interview with, the child, before referring to the index reports and arriving at a diagnosis.
“And they usually emerge with a prescription,” says Jack, “especially if they see Dr K.”
“And you see that as a bad thing?”
“From the school’s point of view, a medicated kid is a better kid because he stays in his seat. Resources don’t stretch to individual hand-holding, which is how they see the alternative.” He then gives me his own candid prescription for hyperactive students. “Don’t make them sit in a seat. Get them outside. Play to their strengths. The happiest I ever saw one of my ex-clients was when he got a job stacking shelves at Coles. Kinetic motion, that’s what they’ve got an abundance of.”
Jack has followed some ADHD students from kindergarten through to Year 11. His overview is sobering. “Big improvements are rare. Kids just get older.”
To familiarise myself with the way the DSM is embedded in educational theory, I read Kids in the Syndrome Mix by Martin L Kutscher, a paediatric neurologist who also holds an academic position at New York Medical College.
Kutscher asserts that children rarely suffer from only one problem. A child may have multiple issues – ADHD, say, plus a learning disability, obsessive–compulsive disorder, depression and oppositional defiant disorder (ODD) – and “the issues may exacerbate each other.” Or imitate each other. For example, an anxious child “constantly mulling over anxieties can look distracted, and this behaviour can be confused with ADHD”. These co-morbidities he calls “the syndrome mix” and his book sets out clear guidelines for recognition, intervention and drug therapies. “When behavioural and environmental interventions do not work, then it makes sense to use biochemical interventions, i.e. medications.”
His neat summaries of the way stimulants such as Ritalin and dexamphetamine work to settle distracted children involve analogies that parents such as Donna seem to derive comfort from. “ADHDers are like bicycles without brakes,” he writes. “They careen around, unable to go anywhere but where gravity takes them. The stimulants are analogous to waking up the bicycle’s brake linings […] They make a higher-performing bike.”
The bottom line, pharmacologically, is that the jury is out on how Ritalin actually works. Yet cheerleaders for drug therapies are not hard to find.
I put in a phone call to a paediatrician who regularly prescribes drugs for ADHD (not the Dr K of Jack’s experience, who wouldn’t take my call). “Changes to the guidelines won’t affect my prescribing,” she said, “Guidelines are just that. I make my own clinical judgement calls.”
“Given that you only see the child in your rooms, not at school or in the home, and those judgements are based in part on third-party reports, surely there’s a chance that any extra weight given to impulsivity in the expanded criteria could feed into your future decisions?”
I quickly read to her the four proposed new criteria from the DSM-5 website (acting without thinking, impatience, rushing through activities, difficulty resisting temptation), as well as a couple of headlines from the Australian, July 2011, trumpeting over-diagnosis and over-treatment. While she resisted any suggestion that she may be guilty now or in the future of compromising her professionalism, she conceded that “ADHD is always a hot topic,” and added, rather darkly, that inflammatory headlines could be expected from media sources with links to Scientology.
Slotting a disruptive boy into a special category to appease the system evokes the spectre of social governance, a topic comprehensively explored in Cries Unheard: A New Look at ADHD, edited by the child and adolescent psychiatrist George Halasz.
Psychiatrist Gil Anaf, a contributor, writes: “What if the rapid rise in the number of children being diagnosed with ADHD, together with the commensurate increase in mind-altering medicating of children, were a symptom of a society increasingly in conflict with what it means to have freedom of thought?” Noting that once upon a time medication was the option of last resort, he argues that the rush to medicate is the result of economic rationalism – the stripping of funds and resources from schools – and the fostering of a quick-fix drug regime as a substitute for “empathetic care”.
Just as Freud is seen as passé, argues Peter Ellingsen in the same book, so the ‘mind’ is being passed over for the ‘brain’. While brain chemistry is in the ascendant and once-esoteric terms such as ‘neurotransmitters’ are on everyone’s lips, the slower (more costly) approaches that teach that life is made up of happy and sad, good and bad, will be passed over in the stampede to switch on the lights in the frontal cortex.
The current resurgence of interest in ADHD concerns proposed additions to the current diagnostic checklist in the DSM-IV, as consultants draft the DSM-5, due in 2013. The proposals affect the ‘H’ part of ADHD – that is, the symptoms of hyperactivity and impulsivity, where the four new behaviours are described in the sub-category ‘impulsivity’. (Impulsivity is gaining on hyperactivity to such a degree that you wonder whether the new acronym might better be ADHID.)
The child who used to have to exhibit a minimum of six out of nine persistent behaviours in order to be diagnosed now, under the new scoring system, has to score six out of 13, a change that has been described as “lowering the bar” or “widening the net”. Western Australian Labor MP Martin Whitely blogs furiously on the topic: “The people who wrote the proposed DSM-5 diagnostic criteria obviously suffer from commonsense deficit disorder.”
On a cool, sunny day in early August I drove through rural New South Wales to a School for Specific Purposes (SSP) in which, it might be reasonable to say, ADHD rates as a minor disorder in a mixed population of students whose problems include Asperger’s syndrome, autism and acquired brain injuries. Behind tall imposing gates are a circular driveway, a statue to the founder, acres of well-tended lawn and single-storey, ranch-style buildings connected by wooden walkways.
I waited for the principal in the staff lunchroom, noticing the paraphernalia that distinguishes this school from others: two-way radios, locked doors, distress monitors. On the walls, the laminated school motto, “Be Safe. Be Respectful. Be Responsible.” The staff, who are used to observers (this school is a model worth emulating), offered me a friendly acknowledgement as they sat down to eat. There is a collegial atmosphere, and something else: like the messages of the posters, they have practised calm for so long they appear to live it.
I’m here to see the pointy end of the hyperactivity spectrum, the school of last resort for both junior and senior students (all boys this term but girls do come here) for whom regular school has been a disaster and the interventions championed by the anti-drug lobby (fish oil, diet restriction, rigorous exercise, psychotherapy) are never going to cut it. Or, rather, the place for children who become receptive to behavioural modification only when they are medicated to baseline.
The term ‘co-morbidity’ pops up very quickly in our preliminary discussion. On any journey into the world of the troubled learner, it is easy to be confused by the signage. I was taken to see Aaron, who has ADHD, post-traumatic stress disorder, ODD, depression and reactive attachment disorder. He can be inattentive, impulsive, anxious, defiant, unteachable – indeed unreachable – and low in spirits concurrently. “Whoa,” I want to say. “That’s a lot of labels to pin on an eight year old.”
Aaron has a truly awful backstory, characterised by abuse and neglect. He lives, figuratively, in a leaky boat captained by an aged male relative. When I meet him, he is colouring in, sitting on a low stool beside another boy, both lulled by the calm voice of their teacher. My presence changes the dynamic quickly. Aaron assumes the posture of a dog, scampering on all fours, woofing and barking at the interruption. When asked to resume his seat, he throws himself across the room in a series of rolling somersaults that land him at another table where three more boys are working with an aide. He crawls under their table, lifts it on his back so that the books and pens roll off, which in turn sets off a chain reaction.
If it was left to me, I think I’d begin shouting for order, so it is a lesson in technique to watch the two teachers and the principal reassemble the tableau as if it were merely a case of an overturned jigsaw puzzle. Aaron’s teacher holds his hands with firm downward pressure. He wriggles, barks, rotates his head. “Breathe,” she says. “Breathe.” The principal engages one of the other boys with a distracting question and a gentle but firm repositioning of his limbs, as he coaxes him back to his chair.
In the senior boys’ room, there’s a sign over the whiteboard: “When I’m calm, I’m smart.” Many windows have been replaced with perspex. There are gouge marks and other signs of teenage lashing-out. I visit this room twice on different days, the second time to speak with Brian, a 12 year old who had been sulky and withdrawn first time around. This day he is talkative.
As we circle the room and I make notes on the wall charts (“What is a joke?”, “How do we enter a room?”), Brian moves to a computer terminal and asks me if I’m trying out to be a teacher at the school. He is a well-proportioned, good-looking boy with kind eyes. I find myself curious about how he ended up here, at the school of last hope. “I’m researching the drugs used for helping concentration,” I say.
He answers my questions with the world-weariness of one who has been on the program since he was nine. “I’ve had them all: Dex, Catapres, Ritalin, and the long-acting one. Now I just do Ritalin, one tablet in the morning and one long-acting one.”
“So, do the drugs help?”
“Yeah. On Ritalin I just come in and get straight into my work, which is not like me.”
As he speaks he wriggles, presses random keys on the keyboard, swivels his chair, scratches his arms, but always returns to full eye contact.
“What about without the drugs?”
“Nah, I get dizzy, sick in the stomach, don’t wanna do my work.”
“What do you do then?”
He grabs a sheet of paper and skims it across the room. “Throw it down. ‘Not doing that.’ Go for a walk, think about stuff.”
“Do you worry?”
“Yeah. Like, is today going to be a crap day? Stuff like that.”
Later in the principal’s office I remark on Brian. A feeling is stirring inside me, a commingling of sorrow and concern that a nice boy should be so burdened at 12. As I’m taken through Brian’s case, the term co-morbidity comes up again, and I hear the assessments that led to his placement in an SSP school. Diabolical home life, conduct disorder, persistent violence directed towards younger kids, knife wielding, bullying, expulsions, going AWOL. Department of Community Services.
The rationale for medicating boys such as Aaron and Brian seems valid given their circumstances, but does the logic extend to every fidgety, tantrum-throwing child? Why the percentage creep in overall ADHD diagnosis – 6% trending upwards towards 10%?
The impressive thing about stimulants is that they work quickly, in 20 minutes. Staff at schools can tell at a glance if ADHD students have had their pills or not. Students who arrive unmedicated may be sent to the office to take their dose and wait till it kicks in before coming to class.
I made an appointment to see another paediatrician and swiftly learned he took a dim view of media commentators criticising the practices of professions for which they are not trained. When I asked him to comment on recent headlines about Professor Joseph Biederman, the American psychiatrist whose work has been influential in the redrafting of ADHD guidelines, he got up from his chair and began packing up his kit. “Joe [Biederman],” he said, “is a decent bloke, and I find your question frankly insulting.”
“He is said to be in the pocket of Big Pharma to the tune of US$1.6 million.”
“Now that is plain nasty muckraking. He’s head of a big faculty at Harvard where money comes in for this and that, he doesn’t keep an eye on every penny, you can’t. It could have happened that funding came in and he wasn’t even aware of it.”
“What do you think of drug companies funding trials of their own products?”
“Who else has got that sort of money? Trials cost a lot.”
“But what if, as appears to be the case with Professor Biederman, a positive heads-up is given to the company before the trial is even complete.”
“Look,” he said, snapping his bag shut, “a good man here in Australia was crucified by this sort of innuendo, Daryl Efron, and it’s totally ruined him, knocked him for six.” (Efron is a paediatrician who resigned in 2007 as chairman of the Draft National ADHD Guidelines Committee after his ties to pharmaceutical companies Novartis, which makes Ritalin, and Eli Lilly, which makes Strattera, another ADHD drug, were made public.)
On the table between us is a laminated diagram showing a synaptic gap. Even after I’ve told him I have a background in pharmacology he points to the space like a drug rep detailing a new product and shows me where Ritalin (purportedly) exerts its action. Then he tells me about an experiment with rats: happy rats given food at the press of a button; frustrated, sad rats, sometimes given food and sometimes a shock when they press the button; a third group, treated like the second but given Zoloft (the selective serotonin reuptake inhibitor about which I’ve written extensively but must listen to his lecture on). The Zoloft rats accept their miserable fate because of the neuro-protective action of the happy pill. “You cut up their brains, look at their neurons. Sad rats, shrivelled neurons. With Zoloft, long and healthy strands, that’s neuro-protection, simple.”
He continues: “Drug companies are not the bogeymen they’re made out to be. I give lectures, I go all over the place, I collect my $700, and it doesn’t affect what I say or what I present one bit.”
Really, doctor, I think, as he shies away from my proffered goodbye shake.
Later as I was transcribing our conversation I saw my notation “FITH”, a throwaway comment made as he bustled me out of his room. “Some kids just have FITH syndrome. We have to deal with it.”
FITH? Fucked in the head.
In this field, where acronyms buzz like bees in a bottle, George Halasz proposes altering the dominant one. In his experience, the “family ecology” behind the child requires careful unpicking. When children do not experience stability and reliability in the formative years they are traumatised (like the rats who press the food lever in vain), which can lead to hyper-arousal, hyper-reactivity and, ultimately, to reactive attachment disturbance (an approved DSM category). Halasz proposes changing the ‘A’ in ADHD from ‘attention’ to ‘attachment’, and the ‘H’ from ‘hyperactive’ to ‘hyper-reactive’ thereby setting the disorder in a context and pointing the arrow in the direction of meaning. The interventions he frames may or may not include drugs but will always include psychological support for parent and child.
For parents such as Donna, the long-term fears are: Will my child be OK? Will he grow out of this disorder? Are there positive sides to ADHD? Professionals such as Kutscher say a wholehearted “yes”. “Fortunately,” he writes, “the physical hyperactivity almost always resolves by middle school. We never see a 60-year-old man jump out of a shopping cart.” And there are websites that celebrate famous sufferers – longs lists of actors, singers, entrepreneurs, scientists.
Donna’s immediate quandary – should she wait, or medicate? – may be decided for her, in the end, by the social strictures that squeeze a boy who can’t stay in his seat.
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