Are the medical diagnoses of the children in the documentary shaped by individual factors, or by social and cultural influences?

Problem behaviour such as ADHD in its cultural historical context

One thing the general public seems to agree on is that the term ADHD is popping up more and more. Amidst the conversations of your everyday people you might also hear it said that ADHD sounds like kids just being kids: Attention deficit? it’s not hard to find parents who feel their own kids aren't focusing or paying attention to household or homework tasks; Hyperactivity? having boundless uncontrollable energy is almost a defining characteristic of childhood.
One might well wonder if ADHD, therefore, is just the hypochondriac brigade’s latest infatuation. However ADHD and its diagnosis is a serious business managed by highly qualified clinicians; psychiatrists, who assess and diagnose children and draw up psychotropic medication regimens that that child will have to stick to for most, if not all, of their school lives.

The term ADHD has evolved over time, back in 1902 Sir George Still coined the first instance of the diagnosis as “abnormal defect of moral control in children” but medication for the noted ‘defect’ only came later with the discovery of Benzedrine. Prior to the 60’s ADHD was still, however, not a broadly defined term, so much so that the APA’s first-ever attempt to compile and standardise various disorders did not include this behavioural instance. It was only with the 1968 revision, the DSM-II that saw ‘Hyperkinetic Impulse Disorder’ (roughly the term still used by the WHO’s own manual the ICD — ‘HKD’).

By this time Methylphenidate had already been established as the go-to medication for the disorder. The term ADD came around with the third edition of DSM in the 80’s. This saw the hyperactivity element of the disorder relegated to a sub-type. In ’87, DSM III-r recompiled all three symptoms into one category ADHD; ‘inattentiveness’, ‘impulsivity’, and ‘hyperactivity’ and had no subtypes.

Big changes weren’t on the horizon until 1999 when US laws changed and allowed pharmaceutical companies to advertise directly to consumers, and about the same time in the year 2000 the DSM was further revised to version IV and saw ADHD divided into three subtypes. In practice, this now meant one could meet a subcategory even if one didn’t meet full ADHD categorisation.

The DSM and criteria for ADHD have clearly changed over time, but has diagnosis? Data presented to the US Congressional Early Childhood, Youth, and Families subcommittee in the year 2000 showed rises in methylphenidate prescription by 500% over the ’91 to ’99 period. Over the same period prescriptions for amphetamines such as Adderall increased by a shocking 2000%.

Prevalence was clearly on the increase, and such data during the 90’s obviously led later generations to look at where this increase was coming from. Some groups looked to the DSM. The DSM’s attempts to standardise terms and treatment have been met with concerns that check box style diagnosis encourages a ‘cook book’ approach, leading clinicians to oversimplify diagnosis and greasing the path towards diagnosis of a condition. So aware of this are the creators of the DSM that they may have created a pick and choose catalogue that there is forewarning in later editions of the manual, one critic of the DSM manuals, Phillip Sinaikin, author of the book ‘Psychiatryland’, says it is precisely its ease of being used as a cookbook, that warrants the forewarning, which amounts to tacit admission of its flaws.

On top of this, the eye has fallen on the clinicians themselves. With rising diagnoses the questions arose to whether the diagnoses were misapplied. There was a study done in 2000 by Duke University, where Angold, Erkanli and their team analysed data from North Carolina and discovered there that only 43% of students on medication met the full DSM III-r criteria. Later studies in 2010 by Evans, Morrill and their team established an estimate of 1.1 million false positives globally.

As DSM editions were compared in a meta-study in 2012 by Willcutt for CREBP in Australia, researchers noticed more and more acceptance of prevalence estimates based upon teacher and parent evidence. But how reliable can the untrained citizen be diagnosing a condition? When making this choice it must be born in mind that parents and teachers are primed by advertising to keep an eye out for signs of ADHD, and the DSM’s use of checkbox definitions make it easy for advertisers to make parents and teachers hyper-aware of and to use specific DSM symptomatic terms.

Willcutt’s study showed teachers as the prime source of referral to clinicians. But the school environment with its year age-range cut-offs and exam deadlines is a difficult environment to assess individual characteristics without being influenced by the tendency to compare. In this way, children who have birthdays at the end of a school year are almost a whole year younger than some of their fellow pupils, this makes comparison misleading. So established is this fact it was pointed out over 40 years ago in 1971 by a study by Doorbos which showed comparingly younger students were more likely to double a year and were at greater risk of being referred to SEN classes. This comparative bias was reexamined in 2014 by Krabbe, Batstra and their European team who showed that the same group were two and a half times more likely to get diagnosed with ADHD as their older classmates.

Starting as the young one of the class will lead to one acting as the young one which can lead to labelling and treatment as such as inherently ‘immature’. Labelling and expectancy bias has been shown to reinforce the behaviour. This same issue is evident with boys who are acculturated to ‘boisterous’ behaviour, even before their hormones add to the problem. There is no surprise to hear that in 2003 the Annals of Family Medicine published a study showing boys consistently get diagnosed more often than girls at a rate of 3 to 1.

When confronted with this important warning from research Krabbe, Batstra and their team wanted to see how aware of comparative age bias the teachers and clinicians were. Their study revealed they were overwhelmingly unaware. It seems fair to assume it wasn’t so much deliberate malpractice, as just not having the knowledge that their judgement was routinely compromised and this represented examples of potential failure of the diagnosis process. It leads us to wonder, is this always the case? Aside from referrers’ inadequate knowledge on the subject, psychiatrist and author Phillip Sinaikin has another theory.

In chapter 3 of his book on the subject, he discussed how financial considerations by hospitals and clinics may push up diagnosis. He suggested bluntly that the hospital essentially wouldn’t get paid unless the visit was deemed medically necessary by the insurance company. The insurance company making its decision based upon a multiple digit reference number. It became known to hospital administrators where Sinaikin worked that the DSM’s axis of diagnosis ‘Axis V’ had to be below 40 (from 1>100) before Medicaid and medicare would pay, administrators heavily suggesting that the patient probably wouldn’t be in the hospital if it wasn’t below 40.

Insurance motives or financial pressures aside, there are yet more potential confounds. Aside from age and gender, another indicator of higher ADHD prevalence is the social and economic link. A massive 2013 study in the UK by researchers using the Millenium Cohort Study found children living in social housing were three times more likely to be diagnosed. Similarly, children raised by single parents were again more likely to be diagnosed with ADHD than those raised by two parents.

Diagnosis of Problem behaviour up close

There are so many potential influences on children’s behaviour that all these studies confirm the frailty and subjectivity of the ADHD diagnosis and researchers have discovered many potential indicators of misdiagnoses. With the rising awareness of ADHD and its potential misdiagnosis, a documentary was released called ‘Americas Medicated Kids’. Louis Theroux put together this documentary which proposed to take a look at the life of children who had been diagnosed with behavioural disorders and look at what their life was like and what had lead to their diagnosis.

It was always going to be a tough project with a camera crew in tow. Louis comes across as somewhat bias by priming his audience with terminology such as ‘drugging kids’ and inferring throughout that the behaviour he sees may be construed as within normal range, and that perhaps the children were being medicated for mere ‘childish behaviour’.

With hints of drugging for childish behaviour in mind, there is at one point a clip shown of a clinician asking a child if they experience ‘lots of energy’, and a follow-up question whether they have ever felt ‘really really happy’, the clip which follows is of clicking a mouse on some medication, followed by a clinician “so I press here for 30mg, 1 cap in the AM, that sounds like you”, and suddenly the subtext of the documentary is clear: with just the click of a button we are medicating children for child-like behaviour.

Throughout we see the children have readily accepted their roles as patients or ‘Druggies’ as Kaleigh, one of the subjects, puts it and more or less take their medications without much fuss. Theroux asks early on to Hugh Kelly, the main subject, whether perhaps he likes taking the medication, and the response is surprisingly in the affirmative. Even though Kaleigh who, when being asked the same question by Louis, suggests she doesn’t like telling people and doesn’t want to think in those terms, but when taking a ‘holiday’ from the medication shows palpable signs of frustration, clearly wanting to take her Adderall pill. Though whether this frustration is dependency on her identity as taking pills, or actually symptomatic of her behaviour disorder is unclear.

More clear is the case of Jack who is shown to be on anti-depressants at the age of 6. Apparently suffering anxiety from various scenarios such as wearing a puffer jacket and losing at games, reinforcing the theme of the documentary, Louis quickly points out that he too doesn’t like losing at games. The clinician points to Jack’s problem behaviour being the violence that follows from his anxiety such as throwing tables and punching staff. When asking a clinician about when a tantrum becomes a disorder, the clinician defines the problem behaviour as when it means a child can’t function in school. This seems to be a pretty solid socially centred reason but as the clinician makes the reason for Jack to have taken medication, Jack has an episode and hides beneath the table, having lost a game again. To most minds, one must be thinking — it doesn’t appear like the medication is working. Almost in answer to the audiences doubts, the clinician reassures Jack (and the audience) that this is improved behaviour.

This brings me to an interesting point, there was a lot of labelling going on and it was very clear from the children’s’ own interviews that they had imbibed this terminology. Suggestion was everywhere, at one point at the beginning of the documentary, with Hugh, we see a clinician first ask how he is at school, and then suggesting that “you are much better, even today I can see the change”. Despite then showing awkward rebellious behaviour as he leaves, the clinician implies he was much worse. Then he says, rather tellingly, that Hugh still leaves without shaking hands, and that with that they are training him.

It seems the clinicians have a pretty high standard of behaviour and control expectation. This is echoed by the parents of the children. When asked about what started Hugh’s diagnosis we hear a story of how Hugh as a seven-year-old stood in the middle of a road and threatened to commit suicide. This led his mother to take anti-depressants. The parents use clinical terminology, such as “suicidal ideation”, and reveal in their conversations levels of research done on the pros of medication, at one point stating “If you continue to not medicate, the highs and lows become much worse”. This suggests she is referring to the bipolar disorder known for it’s high and low moods for which she gives Quetiapine, which Louis reveals to the audience is untested in people under 18. One has to ask who would make a claim about necessity on a drug untested on children.

Louis takes the question to the head of the Pittsburgh Western Psychiatric Institute and asks “Do you ever see parents come in here who seem ‘messed up’? and think, if I were a kid with these parents, I’d probably show symptoms of ADHD.” The head clinician with a serious gesture confirms this. Louis follows it up, “what do you do, do you medicate?”, The reply comes as the audience silently expect an objective and reasoned “no”, “perhaps, a little bit sooner”.

The complicity of the clinician to appease parents comes as ill news. It seems that struggling parents can solve their children’s temper tantrums by a trip to the psychiatrist. Theroux points this out when in a car with Hugh’s mother after a morning row about using the shower, He asks “do you see bad behaviour or a set of symptoms?”

“he’s trying to hurt me”

“there are some bad manners that need addressing.” He responds.

“It infuriates me, it drives me insane that I have a child that does all that and I can’t do… I can do something about it, but if I discipline more about that kind of stuff it’s more arguments, and more yelling… so it’s just a matter of deciding what's more important…”

The implication in this exchange is echoed by Kaleigh’s mother who switched the medication from melphenidate to Adderall saying “she’s easier to deal with now”. The parents use this terminology around their children in the documentary and the labels seem to stick. The children all seem to be playing roles that are reinforced by those around them. Theroux notes this in Hugh’s bad behaviour noting that it seemed effected “He seems like he feels the need to be surly…he doesn’t want to allow himself to be the nice kid that he is”.

We see affected behaviour when Jack loses a game to Louis, almost on his mother's cue “did Louis just win?” and as Louis points out that this behaviour looks like a tantrum within ‘normal range’ his mother fires back that she can set him off if he would like to see it. Each parent when asked this form of question replies in the same vein, that Louis is not seeing them before they were medicated.

It can’t be ignored that because the camera crew are there that the kids were always going to act up to the camera and put on personas. For this reason, it is impossible to gauge how genuine the cases were initially. We are left not knowing whether the ‘normal range’ that Louis implies shows that the parents merely had a low tolerance for “childish behaviour” and preferred “drugging” their kids over “addressing bad manners” though certainly the documentary provides glimpses that this may have been the case.

Whether the parents did or did not take an easier way out, my own thoughts end with the clinicians and the diagnosis of behavioural disorder. We see through the words of the clinicians themselves that their expected behaviour of the children involves very adult standards of control. The reassurance that the behaviour must exhibit ‘problematic’ scenarios such as getting in school trouble only draw our minds back to the evidences earlier of the social, gender, and related biases which cause children to fall behind when compared to peers. The hope that the children’s diagnosis of something so serious as mental illness was conservatively applied isn’t comforted when we have read of the low thresholds for newer DSM guidelines and of clinicians over zealousness to rely on drugs to appease those who knock on their door. Hopefully the rush to brand and then medicate children who actually need support can be better managed. As one team of researchers said in regards to medication, it is often easy to start, and not so easy to stop.

References:

Theroux L (2010) America’s Medicated Kids: BBC

Doornbos K (1971) Geboortemaand en schoolsucces: Groningen: Wolters-Noordhoff.

P Sinaikin M.D. (2010) Psychiatryland: 2010: 42–66

Batstra L, Frances A (2012) Diagnostic Inflation: J Nerv Ment Dis 2012;200; 474–479

Batstra L, Frances A (2012) DSM-5 Further Inflates Attention Deficit Hyperactivity Disorder: J Nerv Ment Dis 2012;200: 486–488

Talbott J (2012) Special Section on DSM-5: Journal of Nervous and Mental Disorders

Russel, Ford, Rosenberg, Kelly (2013) Journal of Child Psychology and Psychiatry

Kudlow P (2013) The Perils of Diagnostic Inflation: CMAJ 2013;185

Krabbe E, Thoutenhoofd E, Conradi M, Pijl S, Batstra L (2014) Birth month as a predictor of ADHD medication use in Dutch schools: European Journal of Special Needs Education 29:4 571–578

Frances A (2014) ICD, DSM and The Tower of Babel: Australian & New Zealand Journal of Psychiatry 2014:48 371–377

Batstra L, Nieweg E, Hadders-Algra M, (2014) Exploring five common assumptions on Attention Deficit Hyperactivity Disorder: 2014:103 696–700

Kirsch (2009) Anti-Depressants and the Placebo Response: Epidemiol Psychiatric Society 2009:18: 318–322

Angold, Erkanli, Egger, Costello (2000)

Thomas R, Sanders S, Doust J, Beller E, Glasziou P (2015) Prevalence of Attention Deficit Hyperactivity Disorder: A Systematic Review and Meta-analysis: Pediatrics 2015:135;e994