ADHD1 – bringing a long overdue discussion to a conclusion

ADHD1 – bringing a long overdue discussion to a conclusion

by Dr phil Bernadette Fontana, special educator and psychologist

It‘s been over twenty years since the question of how to explain and to treat children with behavioural disorders has been raised. Alarming figures showing an increase in the diagnoses and prescription of drugs created a flurry excitement for a short time, other topical issues of the day, however, overshadowed the debate. The following article takes up the issue with the goal to re-initiate a long overdue debate.

Today I haven’t taken my pill …

Fabienne is sitting having lunch with her friends at school. Her plate is already empty after having taken seconds. “I’m hungry today – I haven’t taken my little pill.” The delicate girl, very small for her age, stands up and, mischievously smiling, goes for another helping. – “He needs the medication, otherwise he will be wild with the other children. We know that from the past,” a father says to the teacher. – “My son has always been more active and vivid than his siblings. I like it when he has his own opinion and doesn’t simply submit himself to everything, like we were forced to do,” a father says. – “I’m glad when we try to go without medication. I always feel uneasy giving the pill to my child,” another mother brings into consideration, “but I was told my child needs this such as a diabetic child needs insulin.” – “I don’t want my child to be controlled by chemistry,” a father says when it is discussed whether or not medication helps his son to become calmer and more focused. – “Stopping the medication, no, certainly not. You should see my daughter at home when she attacks her younger sister when I do her homework with her. Without medication it would be unbearable,” a mother answers the teacher’s question determinedly whether she has considered speaking with her child psychiatrist on reducing the daily dose of Ritalin based on her positive behaviour at school.
Above are examples of children diagnosed with ADHD (Attention-Deficit Hyperactivity Disorder). Those diagnosed show a lack of attention, impulsivity and hyperactive behaviour resulting in great difficulties at home and at school. The statements reflect the different views on how the behavioural disorders of these children can be assessed by their parents. In particular they show the concern parents have with regard to not wanting to harm their child and do everything they can to facilitate their child’s way into life. All of them have repeatedly struggled to master the problem. During the school psychological or child psychiatric investigations most of them the issue was about whether a drug with psychoactive substances would prove helpful. As a consequence, many children and young people have been prescribed the drug methylphenidate (e.g. Ritalin, Concerta, Medikinet, Equasym). According to studies, 40% of all children are believed to suffer from ADHD.
For years the rising prescription of these drugs to children has repeatedly been the subject of discussion and press articles. Last August, the Swiss journal Beobachter reported an 810% increase in the amount of methylphenidate delivered to pharmacies in Switzerland between 2000 and 2014. These figures published by Swissmedic comply with 100,000 pills at the strength of 10 mg per day2 – a drug, no less, that has been listed as a controlled narcotic! Yet money can be made with it. Even if sales are decreasing, in 2015 over 366 million US dollars were earned with Ritalin in Switzerland.3

Studies on methylphenidate – sponsored studies with little significance

In November 2015, the media reported on a study undertaken by the Cochrane Institute on drug delivery to children with a ADHD.4 The Cochrane Collaboration is an international network of scientists and physicians providing systematic evaluations of medical therapies, keeping them up to date and rating them. The most important condition to ensure the independence of research is to waive industrial or pharmaceutical funding of the research group.5 Thus, systematic errors and bias6 are expected to be prevented in the studies. In the aforementioned study, the researchers devoted themselves to the question on the coherency of previous investigations on the effect of methylphenidate in children and adolescents with ADHD. For this purpose, 185 trials in which participants had been randomly assigned to one of two or more test groups were scrutinized.7 12,245 children and adolescents diagnosed with ADHD participated in these studies. Most studies compared methylphenidate with a placebo.8 Researchers concluded that most studies were small and of low quality. They noted that the drugs may be able to improve some of the main symptoms of ADHD and classified the previously evaluated side effects (sleep problems and loss of appetite) as non-serious, with no increase of serious, life-threatening side effects on the short term.
It should be mentioned that even insomnia and decreased appetite may have major impact on the life of the child and his or her family. Numerous possible other, partly very serious side effects are listed on the appropriate package inserts.9 Yet, even if one child makes a suicide attempt as a potential side effect, or suffers a cardiac arrest or has delusions, it remains a human tragedy.
The study further notes that no precise statements could be made how large the benefit of methylphenidate actually is. Neither could it be verified how medication intake effects the physical and mental development of a child in the long term, as all the studies were made over a short period (occasionally up to 14 months). On average the treatment lasted only 75 days (1– 425 days). It was not possible to evaluate a long-term effect of the drug because there is a lack of studies concerned with children and adolescents taking methylphenidate for a long time who have now grown to adulthood. Hence, the researchers of the Cochrane Collaboration demanded studies with longer follow-up period in order to better assess this risk. They also noted that making such studies would be difficult and entail significant ethical concerns. An important result was the lack of validity of the studies reviewed, which was considered to be low. The criticism was that the study participants could easily identify which of the test groups the children belonged to (with or without methylphenidate). Furthermore, reporting the results was incomplete in many studies, and, depending on the study, the results varied. Regarding the independence of the researchers, the Cochrane group noted that 72 (= 40%) of the 185 included studies were financed by the industry.
What remains is justified unease: studies of low quality, sponsored by the producing companies, evidencing the benefits of drugs for children.

Uncertain diagnoses – ADHD, an invented disease

There is no clinical test to determine ADHD in contrast to diseases with clear physical causes such as diabetes. With such diseases, blood analysis is performed to determine whether someone is affected or not. A method of medical measurement to diagnosis ADHD is not in sight. Rather, it is based on the assessment of certain criteria – often with the help of special questionnaires. Parents or teachers fill them in: Has a child difficulty in organizing tasks or activities? Does the child fidget with the hands or feet, or squirm in its seat? Does the child answer back to adults? Etc.10 Although a number of steps are described which must be performed in making the diagnosis in specialist literature,11 even if the procedure is carried out exactly – which is not always the case – ultimately there is no ADHD quotient, there are no biomarkers. All values, data and observations must be interpreted and are subject to the decisions made by the examiner. This subjectivity is also reflected in the fact that, for example in the Canton of Ticino, less ADHD diagnoses are made and less Ritalin is prescribed than in German-speaking Switzerland. Varying prescribing practice, according to Oskar Jenny, Director of Developmental Pediatrics at the Children‘s Hospital in Zurich, could possibly be due to different expectations accorded children according to cultural practice. It depends on whether a larger deviation from the norm is tolerated.12
However, diagnoses can have serious consequences and give cause for serious concern, as Monika Fry, head physician at the Pediatric and Adolescent Psychiatric Service in Graubünden, stated in an article in the Schweizerische Ärztezeitung “A given diagnosis may substantially affect the self-esteem and thus the personality development of a child or young person. Children have little opportunity to defend themselves against interpretations of their behaviour by adults, although they are beings with their own activities from the first breath.”13 The cause for serious concern must be primarily be any personal suffering that will result in a wrong diagnosis.
Even more cause for concern is the commitment of the “inventor” of ADHD: The American psychiatrist Leon Eisenberg confessed shortly before his death to the Medical Journalist Jürg Blech that ADHD is a prime example of a fabricated illness. In his opinion at that time, child psychiatrists would more thoroughly have to determine the psychosocial causes leading to these behavioural problems.14

Vigilant elected representatives – Paradigm shift in dealing with human behaviour

Many alert citizens were concerned that, after the turn of the millennium, more and more children attending school took psychoactive substances such as Ritalin. The increasing number of diagnosis and delivery of psychotropic drugs to children led to parliamentary initiatives at the cantonal and national level. Between 2004 and 2015, for instance, Zurich’s Cantonal Council dealt with seven postulates and one interpellation addressing the delivery of Ritalin to children and adolescents.15 In 2006, a postulate in Zurich’s Cantonal Council called for collecting the diagnosis and treatment of mental disorders over the last five years and a monitoring over the next three years. The purpose was to verify whether the increase of prescribed psychotropic drugs had been made at the expense of other therapeutic measures and if so, why. In the justification of the request it is stated:
“There is a paradigm shift within child and adolescent psychiatry in the Canton of Zurich. A biologistic view of man has superseded the humanistic and social one16, and with it treatments of developmental disorders, diseases and behavioural disorders are changed. Mental disorders are increasingly understood as biochemical disturbances in the brain, and the treatment is carried out increasingly with the administration of chemical substances which affect the neurobiological brain functions in order to make the undesired behaviour disappear. There are less questions about psychosocial causes and environmental conditions favoring the occurrence of certain behavioural problems and mental disorders.”17
The signing Cantonal councils called for the attention to the policy and pointed out that for example the delivery of Ritalin or analogous drugs has increased seven-fold between 1996 and 2000. In its response the Executive Council applied not to remit the postulate. Reasons given were the development of new treatments, the therapeutic freedom of the attending doctors, the review of drugs by Swissmedic and the incurring expenses of monitoring.18 In the following years there were further postulates, and also at the national level various parliamentary motions were submitted.19 Finally, a study was commissioned at the Zurich University of Applied Sciences ZHAW, which dealt with the questions raised. The study concluded that the drug is carefully prescribed, Switzerland is in a comfortable position compared to other industrial states and that necessary measures have been taken at the federal level20. As a consequence the discussion on the topic was closed.21

“Intrusion into the freedom and the personal rights of the child”

In 2011, the National Ethics Committee NEK-CNE also dealt with the issue. In its report22 a rising trend of pharmacological interventions in the case of children substantiates their concern. Adults decide their child is not yet (fully) mentally competent person although aiming at “wanting the best”. Often the parents are concerned about their child’s performance and success in competing for training and employment, about improving in particular his or her cognitive skills as well as emotional and social abilities, and about enhancing his or her “stress resistance”. The NEK-CNE pointed out from an ethical perspective that the diagnosis of an attention deficit syndrome opposed to a defiance disorder or an anxiety disorder creates a professional challenge in that the distinction between normal and pathological child behaviour is difficult to draw. The adaptation of a child’s behaviour to existing standards and her social integration may be considered positive. Yet here the NEK-CNE had doubts:
“Therein lies an intrusion into the freedom and the personal rights of the child. Although pharmacological agents cause behavioural changes, the child does not learn how to achieve such behavioural changes itself, and thus the child is deprived of an important learning experience for independent action: namely how to influence his behaviour by his own decisions – and not (only) by foreign agents – and thus be able to assume responsibility. […] The use of pharmacological agents may have further effects on the character, because the child is taught that he/she ‘works’ only with the help of such means in a socially acceptable manner. Insofar their characteristics are treated by the application of drugs and are made dependent on psychotropic drugs, there will be consequences for personal development and self-esteem and could form patterns in favor of addictive behaviour. […] The pressure to conform on the part of parents and educational institutions, to which children are subjected, enforces a standard of normality, which can decrease the tolerance of child behaviour. Also, the diversity of temperaments and lifestyles could be reduced and ultimately the right of children to an open life could be at risk. The NEK-CNE pleads for adapting living conditions to the interests and needs of children.”
The NEK-CNE therefore demanded a review on the current prescription of psychotropic drugs on the part of children, to clarify the causes of higher consumption and to protect children from excessive use.23

Too many diagnoses – too many drugs

Since Switzerland has ratified the UN convention on the Rights of the Child, an assessment by the UN takes place on a regular basis regarding the implementation of CRC in Switzerland. The report was published on 4 February 2015. From more than a hundred recommendations those concerning mental health of our children and youth were selected as a top priority to be treated. The committee of the CRC noted that children in Switzerland were too often diagnosed with attention deficit hyperactivity disorder ADHD or attention deficit disorder ADD, raising the further issue about the resulting increase in prescribing Methylphenidates as Ritalin, Concerta, etc. The committee was also concerned about reports that children were threatened with expulsion from school when parents disagreed to treat them with psychotropic substances and other psychostimulants.24
In summary, it is stated under mental health (point 60 and 61)
“The commitee recomends the state party to:
a    conduct studies on non-drug diagnostic and therapeutic approaches for ADHD or ADD;
b    ensure that health authorities determine the origin of inattention in the classroom and improve the diagnosis of mental health problems by children;
c    improve support for families, including access to psychosocial counselling and psychological support and ensure that children, parents, teachers and other professionals who work with and for children receive adequate information on ADHD and ADD;
d    to take the necessary measures to prevent pressure exerted on children and parents to agree to a treatment with psychotropic substances.”25
Switzerland now has the time to implement these recommendations by 2020. The Child Rights Network has been commissioned with monitoring the implementation. – The UN report triggered a huge echo in the press. Although there were the usual polemics against the “bearer” of the message, in this case Pascal Rudin, a sociologist and a representative of the International Association of Social Workers at the UN. But most press articles indicated that the issue of drug influence in the behaviour of children is still unresolved and many attentive citizens are concerned.

The crucial question – the conception of the human being

The next generation needs our protection and our care when dealing with difficulties of life. Protection must therefore include children with symptoms summarized under the term ADHD. What was mentioned in the cantonal motion ten years ago – the paradigm shift from humanistic and social science to an biologistic concept of man –, has been ignored silently since then. The discussion was focused heavily on neurobiological research.26 But here lies the key towards how problems should be solved. The discussion requires an open and honest discourse. Independent and competent professionals are in demand, as well concerned parents, educators and teachers and all of us as citizens, who take their responsibility for the next generation to heart.     •

1    AD(H)D (Attention-Deficient (Hyperactivity) Disorder is one of the most often diagnosed psychiatric disorders among children. These children have difficulty being good at school, following orders and concentrating. They often also have difficulty behaving at home and with their friends. Methylphenidat is the medication most often prescribed int he case of ADHD.
2    “Ritalin, Irrglaube Hirndoping”. In: Beobachter from 21.8.2015
3    <link http: www.novartis.com sites files novartis-annual-report-2015-de.pdf>www.novartis.com/sites/www.novartis.com/files/novartis-annual-report-2015-de.pdf, Accessed 2.5.2016
4    Storebo, O.J. et al. Methylphenidate for children and adolescents with attention deficit hyperactivity disorder ADHD. Retrieve under <link http: www.thecochranelibrary.com>www.theCochranelibrary.com.
5    see <link http: www.cochrane.org>www.cochrane.org
6    distortion of test results caused by improper methods of investigation and bias
7    so-called randomized controlled trials, RCTs
8    A placebo contains a substance that looks and tastes like methylphenidate, but does not contain any active ingredient.
9    see <link http: www.compendium.ch mpub pnr html de>www.compendium.ch/mpub/pnr/78405/html/de
10    cf. ADHD/ODD parent-teacher questionnaire. <link http: www.pukzh.ch default assets file>www.pukzh.ch/default/assets/File/3_1_ADHD_ODD.pdf. Accessed 2.5.2016
11    cf. on this issue: Baumann, Thomas and Romedius, Alber. “Schulschwierigkeiten: Störungsgerechte Abklärung in der pädiatrischen Praxis”. Berne 2011. ISBN 978-3-456-84871-6
12    cf. Ellner, Susanna. “Im Tessin wird Ritalin weniger oft verschrieben als in der Deutschschweiz. Kinderarzt Oskar Jenni im Interview.” In: “Neue Zürcher Zeitung” from 16.1.2013
13    Fry, Monika. “Diagnostik wohin. Überlegungen aus der Kinderpsychiatrie.” In: Schweizerische Ärztezeitung. 2014; 95:48, 1824
14    Blech, Jörg. “Schwermut ohne Scham.” In: Der Spiegel 6/6.2.12. p.122–131
15    These are availabe on the Canton Council website under <link http: www.kantonsrat.zh.ch>www.kantonsrat.zh.ch
16    The shift from a humanist conception of man to a biologistic view popular in American psychiatric practice since the 1980s has sustained impact. Cf. Allen, Francis. Saving Normal. An Insider’s Revolt against Out-of-Control Psychiatric Practice. 2014. ISBN 978-0062229267
17    KR-Nr. 202/2006. Postulat Delivery of Psychotropic Drugs in Child and Youth Therapy
18    cf. Detail from the Government Council Protocol of Canton Zurich, Session of 25 October 2006
19    among others National Council Motions 11.3878, Psychotropic Drugs, Freysinger, Oskar. 13.3013, Prescribing Ritalin, Commision for Security and Social Issues. 15.2.2013; 13.3536 Ritalin Delivery by Siebenthal, Erich. 20.6.2013; available at www.parlament.ch.
20    cf. Federal Council Press Release from <link http: www.admin.ch gov de start medienmitteilung.msg-id-55280.html>19.11.2014:.www.admin.ch/gov/de/start/medienmitteilung.msg-id-55280.html, accessed 30.4.2016
21    cf. Zurich Canton Council Protocol, 15 June 2015
22    NEK-CNE. “Über die Verbesserung des Menschen mit pharmakologischen Wirkstoffen.” Schweizerische Ärztezeitung. 2011; 43 (complete version online www.saez.ch)
    This statement is available in German, French, Italian and English, download available under <link http: www.nek-cne.ch>www.nek-cne.ch.
23    Ibid.
24    see. United Nations. Committee on the Rights of the Child. Convention on the Rights of the Child. Final remarks on the second, third and fourth State Report of Switzerland. February 2015
25    Final remarks on the second, third and fourth State Report of Switzerland. February 2015
26    see. Hasler, Felix. Neuromythologie. Eine Streitschrift gegen die Deutungsmacht der Hirnforschung (Neuro mythology. A polemic against the power of interpretation of brain research). 2012. ISBN978-3-8376-1580-7

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