This paper first appeared in volume 13 of the 'Skeptical Intelligencer', 2010.
In September and October 2010 newspapers and radio news broadcasts carried sensational stories of a 'breakthrough' in the understanding of Attention Deficit/Hyperactivity Disorder (AD/HD) in children. According to these accounts, scientists at the University of Cardiff have now debunked the myth that AD/HD is caused by diet or bad parenting and have established that it is a genetic disease. The researchers examined 'large rare chromosomal deletions and duplications' known as 'copy number variants' and found that proportionately more children diagnosed with AD/HD had these (note 1).
The following quote was attributed to one of the paper's many authors, Professor Anita Thapar: 'Too often, people dismiss AD/HD as being down to bad parenting or poor diet. As a clinician, it was clear to me that this was unlikely to be the case' (note 2). On radio and television, representatives of support groups for parents of children diagnosed with AD/HD expressed their delight at the announcement; apparently the study's findings allows those parents to say that their children are suffering from a medical illness and not bad parenting and that the scientists are now working on it to find the right treatment.
It is my contention that what is stated in the previous paragraph reveals a way of thinking about and addressing what are genuine problems in life that is misguided and unhelpful to all concerned. To put it bluntly, it is truly, truly dreadful!
Many years ago in my extended family there was a boy whom I shall call 'Billy' who unquestionably fulfilled the criteria for AD/HD, though we did not have such a thing in those days. He exasperated his parents, the rest of the family, his schoolteachers and the neighbours and I still recall many upsetting instances of his uncontrollable, impulsive behaviour. He was well cared for and there were no obvious reasons why he behaved in this way. It seemed that he was 'just born like this'.
We all did what we thought was best. If smacks were the answer then there wouldn't have been any problem: he got plenty of these, from me included (until he was big enough to hit back). In the case of his headmaster, a thick leather strap was recruited for this purpose - a painful experience, as I had earlier discovered. But it was to no avail. Unkind jibes and name-calling were likewise ineffective.
We loved Billy. I started babysitting for him when I was 12. We would both squeeze into his little bed until he tumbled out and then he would toddle off to his parents' room. These were happy days. He belonged to us and his problems were ours to deal with or, more realistically, to put up with; that is, family, school and community absorbed the shocks of his unruly behaviour. He was no scholar but he had some talents. In his teens he quietened down. Now, well into middle age, he has enjoyed a normal, happy, fulfilling life.
What we never did was stigmatise Billy. When people use this word it is often with reference to a group of people who share a certain characteristic - e.g. those who are mentally ill, ethnic minorities, homosexuals, and, in former times, single mothers and their offspring. Such groups were regarded, or still may be regarded, with opprobrium, usually because their particular attribute is not shared by the majority of the community and often, for no good reason, is regarded as denoting unacceptable qualities. They are identified as different and hence do not really belong to the community. This kind of stigmatisation is unjustified and cruel and has a malign effect on our society
Now listen to the wisdom of Professor Thapar. According to her, as a result of her team's efforts, 'Now we can say with confidence that AD/HD is a genetic disease and that the brains of children with this condition develop differently to those of other children. We hope that these findings will help overcome the stigma associated with AD/HD (note 2)'.
Not with our Billy! Labelling him with a disease caused by his having a brain that was different from those of his classmates would guarantee stigmatisation - official confirmation that he was 'mental'. So would his having to be 'on tablets' and his occasionally absenting himself from school to see 'a specialist' to check if the treatment was working.
Children like Billy who, despite their best efforts, are limited in their attention span, appear to be so full of energy that they cannot sit still for any length of time, and have little control over their impulses, have real problems in life and they present real problems for their parents and others. They deserve understanding and help, and a caring, healthy family and community ought to be able to provide this. You cannot detach these types of problem from the nature of the environment and the society that the person with these difficulties grows up in, in particular the requirements and expectations that are demanded of them and the stresses places upon them.
In fact the above is true of many illnesses that have an obvious physical basis. For example I have assessed for compensation purposes hundreds of people who have suffered psychological problems due to road traffic accidents (RTAs) and similar incidents. Most RTA claimants have some form of 'whiplash' injury, the symptoms of which often include back pain. The severity of the injury may be assessed purely by physical means, but for claimants a major determinant is its effect on their life. A person who earns his or her living by heavy manual labour will be more seriously affected by an injury than a person who does not.
There are many physical ailments to which you could apply this kind of reasoning (note 3) but it is psychological problems that are of interest here. Let us consider reading and writing difficulties. Children vary according to how easily they learn these skills and to what level of proficiency. This may simply be related to their level of intelligence but not always, and some have inordinate difficulty in relation to what one would expect from their intellectual endowment.
It seems sensible to think of a shorthand way of referring to such 'reading and writing difficulties', hence the term 'dyslexia' (Greek dus [abnormal] + lexis [word] from legein [to speak]). This labelling, though innocent of any malign intentions, has far-reaching consequences that are more to do with the way our society functions than the needs of those with these problems.
One consequence is that the problem becomes medicalised; that is, it is regarded as a disease that people have and receive treatment for (or very often they or their parents complain that they have never received any treatment for it). People are identified as being 'dyslexic'. They are said to 'have dyslexia' or even 'suffer from dyslexia'. In certain circumstances, such as with students, allowances are made for people diagnosed with this disability.
I well recall seeing a young girl professionally in the 1970s when the term was not so commonly used. Almost the first thing she said to me was, 'I've got dyslexia'. I was used to hearing children say, 'I've got asthma/epilepsy/ diabetes…and so on' but I was a little alarmed by what this girl said; it struck me as very unhelpful for her to talk about herself in this way. I felt the need to correct her by way of reassurance but could not think of a way of doing this.
Labelling a problem, particularly a psychological one, can create the illusion that we thereby understand it. Consider the following imaginary exchange:
Mrs Smith: Doctor! Doctor! I'm terrified of spiders.
Doctor: Calm yourself Mrs Smith; you have arachnophobia.
Mrs Smith: At last, somebody understands!
Merely referring to a problem by a label in this way also implicitly provides the person with the reassurance that he or she is not the only one so troubled. Thus what is essentially, in the case of dyslexia for example, a difficulty doing an activity becomes a thing or entity in itself that people have. It is a reasonable assertion that this makes it easier for people to get together and from self-help groups, including national associations, lobby for more help and so on. Thus people start talking about 'the dyslexic population' and the 'non dyslexic population'.
Another consequence is that it facilitates the development of an industry around the problem. People become experts in dyslexia and earn a living thereby. Some are paid money to 'do research on dyslexia'; they publish papers, chapters and books on dyslexia and attend conferences on it, sometimes in exotic places; they construct theories about dyslexia and argue interminably about which is the correct one; some devise and market treatment packages for dyslexia; and so on.
One of the least helpful developments is the rival claims of ownership of the problem and its treatment. Psychologists may declare that it is caused by subtle cognitive impairments that impede the reading and spelling process. Geneticists look for genetic markers and when they do so, unlike their previously mentioned colleagues, they may even get a mention on the 'Today' programme on BBC's Radio 4, preceded by the announcement that 'scientists have discovered a gene for - '(fill in this space - Ed.). Neuroscientists put people with these problems in brain-scanning machines and proclaim that they have discovered that the brains of people who have dyslexia are different from those of people who don't have it (which may also qualify them for a mention on Radio 4). Educationalists may declare that it is a problem caused by the way reading and spelling are taught at schools. Sometimes ophthalmologists dip their oar in and come up with their own theories (note 4). I have even heard psychoanalysts offer explanations based on Freudian or neo-Freudian theories. Sociologists may weigh in by declaring it to be a social construct.
As with chronic medical problems, famous people become identified as role models when they achieve outstanding successes despite 'having dyslexia'. No doubt this gives hope to people diagnosed with dyslexia. Somehow, for no good reason, their accomplishments would not seem as heroic if they were described as 'having problems with their reading and spelling'.
In contrast to this, there are ways in which people in society use the term 'dyslexic' that makes it easier for people so labelled to feel even more upset about their problems. For example it is much easier to make up jokes about dyslexia than it is about 'reading and writing difficulties'. I am fairly certain that a joke that begins 'Have you heard the one about the dyslexic policeman?' (note 5) is more likely to succeed than one that begins 'Have you heard the one about the policeman who couldn't read or write very well?' If, on reading a piece of writing I were to exclaim, 'Whoever wrote this must be dyslexic!' I would be more likely to be expressing my annoyance at the quality of the spelling than providing a neutral and carefully considered professional opinion. To make such a statement or to tell the above joke in the presence of someone diagnosed with dyslexia would be regarded as insensitive and unkind.
In fact because of its fuzziness, some people feel able to say, 'Dyslexia does not exist'. Not only some psychologists and educationalist think so: journalists and members of the public may say the same. Thus we have a backlash against the concept - 'It's an excuse that middle class parents use when their children turn out to be dumb or lazy'.
We all tell stories about our life that account for the way we are, what we do, how we think, and so on. Our story is not just based on the raw facts of our lives: some facts are given more weight than others, likewise certain interpretations of these facts. Because of this there is more than one story that we can tell while remaining true to the facts. Some stories are more useful to us than other stories and it may benefit people who are unhappy in their lives to help them tell themselves and others better, yet still realistic, stories.
The same is true of stories other people tell us about us; and sometimes the story that gets told is the one most useful to the storyteller (note 6). The story told by, for example, a geneticist about children who have difficulties learning to read and write or controlling their attention and behaviour, is likely to be one that benefits the geneticist. These kinds of stories may provide these children and their parents with a seductive account of the problems that each of them faces but not necessarily the most helpful in the long run.
I recall a television programme about some psychologists who were researching into the prevalence of dyslexia amongst young criminal offenders. The thesis under investigation was that dyslexic children are more likely than others to become offenders, presumably because of educational failure and the greater difficulty they have undertaking vocational training programmes and securing employment. Some of the inmates who passed the investigators' test for dyslexia, when interviewed seemed delighted by the outcome but also expressed resentment that their dyslexia was not detected at school and the opportunity to deflect them from the route of offending was thereby lost. The story that is being told about these offenders has a history long predating the investigation and I shall have more to say about this later.
Perhaps the simplest stories sometimes yield the best outcomes. I have not specialised in the assessment of literacy and associated problems but it seems to me that there ought to be a much less involved and complex way of addressing all of this, but one whereby we have to sacrifice this word 'dyslexia' and much of the industry that attaches itself to it and just talk about people who have serious problems learning to read and write relative to their other intellectual abilities. Such individuals experience real problems that are not of their or anybody else's making. Being able to read and write is important in order for people to reach their educational potential and to embark on and succeed in their chosen career. Others may underestimate the abilities of those affected when their problems become evident, and this may have serious consequences for them. For the majority of the population none of this happened until relatively recently in our history, since it was not a requirement to be able to read and write well, if at all, for most people. In modern developed societies it certainly is.
It is very likely that the possible reasons for literacy problems are multiple and associated with the different facets of these skills. A careful assessment of where the problems lie is therefore important and a variety of techniques and ploys to help the person should be available and not just one approach. Hence research into literacy skills is important to develop these techniques. Some people with these problems feel unduly anxious when asked to read or write and this in itself can make matters worse.
Nearly everything that I have said about dyslexia can be said of AD/HD. Children vary in their ability to sit still and maintain their concentration and those who, for no fault of their own, have the most difficulty are at a great disadvantage because of the demands and expectations of modern society, not least the education process, which requires them to sit in a desk and give their constant attention to the teacher or reading matter. Their problems are compounded if they are not academically able in the first place and hence often find that what they are made to attend to and learn is difficult and uninteresting. Where this is the outcome of a child's experience of school it is society's failure and not the child's. Perhaps in a different society or at a different time in our history such children would find life less of a struggle, and what appear to us to be problems may even prove, or have proved, to have some advantages. But the state condemns them to many years of this experience. (To be fair I should say that my impression is that those who attend 'special schools' often have a much better times of it.)
Like dyslexia and many psychiatric diagnoses, AD/HD is a fuzzy concept - i.e. its boundaries are blurred (note 7). Why these labels are fuzzy can be understood from the procedures used to establish the diagnosis. Diagnoses according to the Diagnostic and Statistical Manual of the American Psychiatric Association (DSM-IV) and the International Classification of Diseases of the World Health Organisation (ICD-10) typically differ from those in general medicine in that they rely, not on the identification of some underlying pathology that gives rise to the symptoms, but on a tally of the symptoms themselves. To fulfil a diagnosis of AD/HD (code 314.00 or 314.01 in DSM-IV) the person must have exhibited over the previous 6 months at least 6 out of 9 specified manifestations of inattention or 6 out of 9 for 'hyperactivity-impulsivity'. He or she must have shown some of these before the age of 7 years and they must be evident in two or more settings (school, work, home, etc.) In common with most of the mental and personality disorders in DSM-IV an essential criterion is 'There must be clear evidence of clinically significant impairment in social, academic or occupational functioning'. This relates to what I said earlier about whether some characteristic or difficulty is deemed to be a disorder may relate significantly to the requirements, expectations and stresses that society and the environment place on people.
Another feature of DSM-IV diagnoses is that there are usually many different configurations of symptoms that result in the same diagnosis, and two people who are diagnosed with the same disorder may have very different profiles. The diagnosis of 'personality disorders' brings this out very clearly: for example, there are 247 ways in which a person may qualify for a diagnosis of borderline personality disorder and 848 ways for antisocial personality disorder (note 8).
In theory if the patient does not have the full quota of symptoms he or she has not got the disease. So what happens if a child is clearly having behavioural problems (or parents and teachers are having problems with the child) but he does not fulfil all the criteria for AD/HD? Try squeezing him under another diagnostic label - e.g. Conduct Disorder (code 312.8), Oppositional Defiant Disorder (code 313.81), or Intermittent Explosive Disorder (code 312.34). But if you really must insist on AD/HD then why not go for the diagnosis Attention Deficit/Hyperactive Disorder Not Otherwise Specified (code 314.9)? 'This category is for disorders with prominent symptoms of inattention or hyperactivity-impulsivity that do not meet criteria for Attention Deficit/Hyperactive Disorder'.
In routine clinical practice, for many mentally ill patients the consensus amongst staff emerges that 'The diagnosis remains unclear'. In my experience this means the diagnosis is likely to remain unclear, particularly the longer it is has already been unclear. I have attended many case conferences, often held for teaching purposes, in which my psychiatric colleagues have fretted over whether the patient in question has schizophrenia, bipolar affective disorder, major depression, a personality disorder, and so on. Such a patient, if he or she remains in the mental health services, is likely to accumulate many or all of these diagnoses over time. (At such case conferences, advocates of 'schizoaffective disorder' will usually put in a bid; this diagnosis requires a combination of symptoms of schizophrenia and a major impairment of mood.)
Should we throw DSM-IV away? Certainly not! It is the product of decades of accumulated knowledge of many wise and experienced individuals. However, in my opinion it would be helpful if we could all resist the urge to adhere to a strict medical model and thus always to feel obliged to come up with an explicit diagnosis.
In fact, so far as clinical practice is concerned, all this is something of a straw man. Unlike the rest of medicine, failure to arrive at an agreed psychiatric diagnosis is often far from catastrophic, as psychiatric treatment tends to be pragmatic; i.e. it is symptom- rather than pathology-based and often proceeds by trial and error: if something doesn't work, try something else. Recently I interviewed a defendant in a criminal case who had also had the benefit of an independent psychiatric report. The psychiatrist concluded that this person was not suffering from a psychotic illness; nevertheless he prescribed him antipsychotic medicine (Olanzapine). The reason for this was that the person was complaining of hearing voices telling him to harm himself. I am not saying that the psychiatrist was at fault; in fact the person reported that the medication was proving helpful.
Unfortunately in legal cases the expert is often required to answer the question 'Is this man/woman suffering from a mental disorder and if so, what?' Hence, unlike in routine clinical practice, which is all about helping suffering people, DSM-IV and the ICD-10 are indispensable for meeting the demands of the legal system.
What I have been saying here I more or less said earlier for the diagnosis 'dyslexia' and I suggest the same applies to AD/HD. You will often read that people with ADHD 'are over-represented in the criminal justice system'. In fact my own professional experience in this area is assessing defendants in criminal cases who were diagnosed with AD/HD, and often learning difficulties, in their childhood. (A third diagnostic label that often comes up is 'autistic spectrum disorder', which positively reeks of fuzziness.) Often they took Ritalin for many years and later Concerta, but few if any are doing so when I see them.
I can recall only one such person who was unduly restless or inattentive and for that reason was unable to complete the battery of cognitive tests that I administered. Nevertheless I always assume that the diagnosis of AD/HD was made for good reason; that is, whatever the cause, these individuals had much greater difficulty than most of their peers in controlling their behaviour and maintaining their concentration.
It is important to point out that the people I am talking about were not just handicapped by their hyperactivity and low attention span. In most cases their intellectual endowment was well below average and many were deemed to have 'learning difficulties'. Hence for them education, as I have described earlier, meant that they had to engage in activities that were difficult, unrewarding and meaningless; thus they were made to feel unhappy and had instilled in them a sense of inadequacy and failure. They were frequently picked on and bullied by their peers. They misbehaved and were often suspended, truanted regularly, and often gave up completely in their final year or two, without gaining any qualifications. The story then continues with a lifestyle characterised by unemployment, alcohol and drug abuse, and persistent offending.
But more often than not these people have also had more fundamental adversities to contend with. Most have not enjoyed the basic needs and entitlements of all children, namely loving parents, a stable home life, and protection from malign and traumatising influences. Some never knew their fathers, or their fathers, who were often violent, cleared off when they were still at a tender age. With all this to contend with it seems somewhat perverse that, when they do get into trouble, their defending lawyers so readily summon experts to comment on their 'having AD/HD' or 'learning difficulties' as mitigation for their misdemeanours.
I have not noticed much tendency for the individuals themselves to excuse their excesses in this way. However, their parents - usually their mothers - often do. A common story is 'For years I tried to get help but nobody would listen and then they discovered he had AD/HD… etc.'. Now I know that it is all too easy for someone like me, who has never had to contend with these disadvantages and deprivations, to be critical and judgmental; but my heart sinks when I hear something like this. The story -which arguably is as much the work of the professionals as the storyteller - may not be wrong. But it is one that is devoid of hope. At least it needs a further chapter: 'Yes, I have had to shoulder all of these burdens but I am dealing with them' and ultimately '…I dealt with them'. This is indeed a story one hears from people whose lives have been blighted in these ways and yet are eventually able to make good.
So, let us return to our heroes, the scientists who have, so we are led to believe, shown that AD/HD is related to certain chromosomal features known as 'copy number variants' and children thus diagnosed should be considered to have a genetic disease. Exactly how many children with these features does the study indicate will be diagnosed with AD/HD?
The investigation found that out of 366 children so diagnosed, 57 (15.56%) had CNVs compared with 78 out of 1047 (7.45%) who did not have this diagnosis. The paper reports that AD/HD affects around 2% of children (a rather conservative figure but let's run with this). Hence, out of 10,000 children 200 will be diagnosed with AD/HD and of these, 31 will have CNVs. Of the 9,800 children not diagnosed with AD/HD, 730 will have CNVs. This makes a total of 761 children in 10,000 with CNVs. It follows that of all the children with CNVs, roughly 4% (31 divided by 761) will have AD/HD while 96% (730 divided by 761) will not.
To me this shows that the investigation found only very weak evidence of a chromosomal effect. Surely the message should be this: 'If a child (sex unspecified) has CNVs there is only a 1 in 25 chance that he/she will be diagnosed with AD/HD'. This is hardly the kind of announcement that's going to have people leaping from their beds in the morning thinking that the world is now a better place. Neither is it going to encourage funding bodies to hand over more money to the scientists who made this discovery to enable them to carry out further research (note 9).
But now look what these scientists have in store for children like our Billy. The concluding sentence of Williams et al (2010) is this: 'Our results suggest that routine referral to clinical geneticists and screening for such mutations could be helpful for children with ADHD and intellectual disability'. Brave New World? Does this not bring to mind pictures of schoolchildren in the Third Reich having their heads measured?
Those of you who, unlike me, enjoy all the privileges, responsibilities and burdens of parenthood I beg you: 'Please, please, please! Keep these people away from your children!'
1. Williams, N.W. et al (2010) Rare chromosomal deletions and duplications in attention-deficit hyperactivity disorder: a genome-wide analysis. The Lancet, 376, 1401-1408. http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(10)61109-9/fulltext.
3. There is also the person's reaction to the illness, including his or her ability to cope with pain and any anxiety or worry that the symptoms cause including, in the case of children, parental anxiety.
5. I did not know there was such a joke until I Googled 'dyslexic policeman joke'.
6. 'If you believe the doctors, nothing is wholesome; if you believe the theologians, nothing is innocent; if you believe the military, nothing is safe.' (Lord Salisbury)
7. For this reason I wonder how successful efforts can be to link it to such precise entities as gene configurations and brain structure.
8. McMurran, M. (2008) Personality disorders. In K. Soothill, P. Rogers & M. Dolan. (Eds) Handbook of Forensic Mental Health (pp. 375-399). Cullompton, Devon: Willan Publishing.
9. Around the time this research was being proclaimed by the media, a paper presented at a conference in Sydney by Wendy Max, Professor of Health Economics at the University of California revealed (once again) that children exposed to passive smoking have double the rate of AD/HD. Clearly 'passive smoking' is not as newsworthy in this context as chromosomal 'copy number variants'. http://www.theage.com.au/national/smoking-adhd-link-found-study-20101008-16b1m.html