Attention deficit hyperactivity disorder – Medical malady or societal madness?

Basil Porter MBBCh MPH

I am an enthusiastic amateur musician. Not surprisingly, Mozart and Beethoven feature among my heroes, and I have even broadened my musical views over the past decades and added the Beatles to my hero list. So imagine my joy when I discovered that Wolfang Amadeus (Mozart), Ludwig (van Beethoven) and John (Lennon) shared a common disorder (1) that I have worked with over the past
20 years and probably is part of my personal problem list. In case the reader feels left out, some other names appear in the list of sufferers – Galileo for the scientists, Leonardo da Vinci for the artist and scientist combinations, and John and Robert Kennedy and Winston Churchill for the budding politicians. Maybe this is a good disease to have. But isn’t all disease bad – by definition? Disease is defined in Webster’s Dictionary (2) as “uneasiness, distress, any departure from health, illness in general, a particularly destructive process in the body, with a specific cause and characteristic symptoms”. Beethoven was deaf, Mozart probably died from kidney malfunction and as we know, Lennon and the Kennedys died from a more common 20th century ailment called murder. But they are all listed as having had attention deficit hyperactivity disorder (ADHD). True, the footnote to the list “Famous People and ADD/ADHD” (www.adhdrelief.com/famous.html) says that they were not all “officially diagnosed”, but “exhibited many of the signs of ADHD…”.

This entity of hyperactivity, attention deficit disorder (ADD) and ADHD (the frequency with which the nosology changes suggests again that lots of people besides myself are confused by the entity) epitomises one of the unique dilemmas of modern medicine: what constitutes a medical entity? Since the scientific Flexnerian revolution in medicine at the turn of the century doctors have needed to label with precision. There is an inherent suggestion that the more formal (and Latin sounding) the diagnostic label, the better the clinical diagnosis. You cannot say today that Mr X feels lousy and off-colour. He must have chronic fatigue syndrome or reactive depression. There is no place in the electronic diagnostic coding system of my health plan for “has a cruddy feeling today and doesn’t want to go to work”. So we label “Observation – diagnosis deferred” or “Administrative visit”. In the same way, we paediatricians cannot label little Johnny as a “high spirited kid with lots of energy”, or little Winnie as a “daydreamer”. We have to put them in a little box – ADHD: hyperactive type, or ADHD: inattentive type. The parents breathe a sigh of relief. Thank God someone has finally pinpointed the problem. The teachers demand extra individual tuition for the child in view of the medical problem. And Johnny and Winnie understand that they are now legitimate invalids like Sam the asthmatic and Jenny the epileptic. But the problem is that ADHD is not like epilepsy or asthma. It is a behavioural problem. This automatically creates another problem, a stigma, a lumping with the crazies. The ADHD nosology appears in the Diagnostic and Statistical Manual of Mental Disorders, 4th edition (3), the periodically reviewed and rehashed diagnostic manual for psychiatric disease. And if there is one thing worse than having a disease, it is having a psychiatric disease. In keeping with most psychiatric diseases, at this point there is no diagnostic test or set of clinical signs to diagnose ADHD and its variations.

ADHD is a diagnosis based mainly on reports by observers of a child’s behaviour, usually schoolteachers and family members. It usually does not present in the clinician’s office, because when these children have to interact with one person, with no peripheral distractions, they perform well. However, a good clinician will often perceive some elements of poor attention span and impulsivity, the hallmarks of the syndrome, in his office. The diagnosis and management of ADHD is seemingly straightforward, although it can seem surprisingly confusing to the parent or student. The result of the assessment, and particularly the recommendations, may vary considerably, depending on whether the child is seen by a paediatrician, a neurologist, a child psychiatrist or a psychologist. Thus, to paraphrase Murphy’s laws – “The number of approaches to diagnosis and management of a particular clinical problem varies inversely to the scientific knowledge about that problem.” Technological backup is frequently sought. The electroencephalogram (EEG) is often sought before a careful clinical evaluation. Why? Because the child behaves strangely, and behaviour comes from the brain, and neurologists and EEGs tell you what is wrong in the brain. The EEG is a respected piece of medical technology, and the abnormal EEG will give a clear message that something is indeed not right in this child’s brain. And it is certainly better to have a neurological disease than a psychiatric one. For those dealing with ADHD who were experiencing the frustration of the inadequate availability of technology, a savior has arrived: the Test of Variables of Attention (TOVA)(4). This is a computerized continuous performance test for diagnosing and monitoring children with ADHD, taking 21.6 min to complete by the expert. And in keeping with the patient empowerment movement, there is now a home TOVA test, which although is not as accurate, can be done at home by the parent and costs less than a quarter of the price. The test can certainly provide some validation of the reports on the child’s behaviour, particularly impulsivity. But sadly, the test has come to reflect another characteristic of medical practice in the 21st century, ie, the worship of a machine. The focus shifts to the printout from a machine, instead of the ears and eyes of the parents, teachers and examiners. One can hear the discussion between parents – “Sam was way above the limits on his impulsivity score, we caught it in the nick of time”.

The problem is further confounded by the vulnerability of the population involved – parents. These parents are continually bombarded with the message of early diagnosis and intervention, an important and proven message for many developmental issues. How can the parents know whether the claims of the professional regarding diagnosis and treatment are valid? They are forced to adhere to the adage “Don’t just stand there, do something”, when standing and waiting may be prudent, and the ‘something’ is unproven. ADHD brings to the fore another modern phenomenon, the mushrooming of volunteer organizations who cater to the needs of people with specific problems. These organizations satisfy an enormous need for patients and families. They enable people to find knowledge about the particular problem, and from their very nature offer support and empathy to people who often feel alone with their problems. The smartest paediatrician or child psychiatrist is often pressed for time, and even if the right diagnosis and treatment are given, parents often feel that many questions are unanswered, and many fears are not allayed. Meeting parents of children with similar problems offers proof that there are others with the same problems, and successful tips to manage and live with the children may be easier to accept from a ‘cosufferer’ instead of a physician or psychologist. Unfortunately, these groups can also have a negative aspect. Once more, technology is always a winner. I heard a leader of an ADHD organization extolling the wonders of positron emission tomography (PET) scans in pinpointing the problem. I believe that in 10 or 20 years we will have a precise pathophysiological documentation of ADHD subgroups, and experts in the field will chuckle when quoting the literature of the 1990s, when ADHD was based on questionnaires. However, at this point in time we are just scratching the surface of this field, still trying to deal with very simple questions, such as is ADHD a disease or a reaction to a high pressure society, which does not recognize the range of variability in behaviour? So throwing up a multicoloured PET scan on a screen, showing differences in blood flow in certain brain areas and saying “Here is the ADHD child” is premature, if not dangerous. The motivated concerned parent may also surf the web and find material describing ‘forced drugging’ with methylphenidate hydrochloride (Ritalin, Novartis Pharmaceuticals, Dorval) for the sake of profit, suggesting an ADHD conspiracy to drug masses of normal intelligent children. Understandably, the paediatrician facing parents armed with such material will have to use all his interpersonal skills to initiate pharmacological therapy. (Putting the term ADHD into a search engine produced 55,000 references…).

Paediatricians are still the best-placed professionals for dealing with ADHD. They should be able to filter knowledge, coordinate opinions and deal with inappropriate expectations. Widely different approaches to the problem exist even within countries with similar cultural backgrounds, particularly the United Kingdom and the United States of America. Thus, in the 1960s hyperactivity was viewed as a behavioural syndrome, whereas in the United Kingdom hyperkinesis was viewed as an uncommon problem, usually occurring in conjunction with other signs of brain damage (5), with a rapprochement between these views taking place only in the 1980s. And finally, a polarity of opinions exist regarding drug therapy, from cautious enthusiasm regarding its ability to help children and adolescents function normally, to almost hysteric condemnation of the dangers of the drug as causing psychiatric disease, dependence and suicidal tendencies.

So, how can we paediatricians help the teachers, the psychologists, the paediatricians, the parents and the children with the issue of ADHD? ADHD is not a standard medical paradigm, where symptoms and signs can be synthesized at a point in time, magnified and clarified by technology, and treated according to the final summary. ADHD is a life experience, a meeting place of childhood behaviour with the world around, a constant tango with each taking a turn at leading. And to get the big picture, we cannot rely on one dance. We have to see the dancer with ADHD with many different partners, in different settings, at different times. Because in the long run, ADHD is about coping. How the ADHD person copes with the world, and how the world copes with the ADHD person. We will have to do better at deciding where the energetic normal child ends and the ADHD begins. We are defining a condition according to society’s needs more than the child’s. We must explain to teachers and parents that our labels are just tools to help the therapists communicate better (hopefully), and that all we are trying to do is help the child to function better at school and at home. Many things may help. Better informed and functioning parents and teachers, good interaction between the child and teacher, a judo class or a period of stimulant therapy. Nothing is sacred. We must look at and listen to the child, and let him or her know that we are on his or her side. If we are flexible, understanding and patient, and a little more humble regarding the ability of medical science to solve everything quickly and decisively, we will help to empower both parents and patients. Instead of prescribing the EEG or TOVA, we should look at the parents and say “You know, this is not a life-threatening disease. Lots of people cope with it and live normal adult lives with it”.

By using the tools of listening, looking and empathy, we will hopefully recreate a covenant between those who seek help and the helpers. This covenant will state that in the world of the 21st century, technology and specialization have not created a perfect world of medical certainty. The field of abnormal behaviour is still fraught with difficulties, starting with the basic question of all clinical science – the diagnosis. A diagnosis should serve to help define a problem, and help in its management. It really does not matter whether the child has ADD, ADHD or hyperkinetic syndrome, or is a fidgety brat. We need to help him and his environment cope with the problem and not necessarily eliminate it. Perhaps, if we defined ADHD as a coping issue and not as a psychoactive drug decision, all society would benefit.