Life in the last lane

I was not born to be forced. I will breath after my own fashion. Let us see who is the strongest. What force has a multitude? They only can force me who obey a higher law than I. They force me to become like themselves.

I perceive that, when an acorn and a chestnut fall side-by-side, the one does not remain inert to make way for the other, but both obey their own laws, and spring and grow and flourish as best they can, till one, perchance, overshadows and destroys the other. If a plant cannot live according to its nature, it dies; and so a man.

Henry David Thoreau — 1849 Civil Disobedience

I can’t dance. I can, however, read, memorize and do tests with sufficient accuracy to do well in our current educational system. These ‘skills’ are valued by schools and rewarded with approval and privilege, translating into academic, economic and professional advantage. Imagine if dancing were given similar priority, my future options and day-to-day experience as a student would not have been so positive. Remedial classes, a slow learner label, ridicule and self-esteem issues would have been realities. If there were medications that could improve coordination and rhythm, and possibly, short term at least, allow me to better fit into society, would this be ethically or morally correct? This is precisely the dilemma that an increasing number of children worldwide, most notably in North America are being faced with. These children are being labelled as having attention deficit hyperactivity disorder (ADHD) or attention deficit disorder (ADD) and in huge numbers are being prescribed psychostimulant medications.

In nine years as a consultant paediatrician I have evaluated and followed about 700 children with school, learning and behavioural problems (Appendix 1), with over 300 meeting the criteria for ADHD/ADD. Following the guidelines provided by the American Academy of Pediatrics (1,2), the American Academy of Child and Adolescent Psychiatry (3) and the Canadian Paediatric Society (4), approximately 90% of the children diagnosed with ADHD/ADD were treated with psychostimulant medications using the standard recommended dosages. This occurred in conjunction with suggestions for improved behavioural direction, both at home and at school, and provision of help or assistance in problem areas with academics or socialization. Psychologists, social workers, guidance councelors, teacher’s aides and learning disability teachers were used as needed, if available.

While positive short term results did occur with medication use, it was quite notable that many children resented or were embarrassed by the utilization of medication and most voiced wishes to discontinue pharmacology by late junior high school. These observations have been previously reported in the literature. A study in 1982 (5) identified 42% of children on psychostimulants as disliking or hating the medicine, 30% as liking it and the remainder expressing indifference, with many looking forward to stopping it. When children would question me regarding the long term outcome of pharmacological use, I would assure them that my professional associations only recommend medication use on good evidence of efficacy. However, my recent review of the literature (Appendix 2) suggests that I was incorrect with this statement for ADHD. It is the aim of the present paper to highlight some areas of concern regarding the current recommendations for diagnosis and treatment of ADHD/ADD, to review outcome studies and to explore the influence that the school environment and school experience can have on children with ADHD/ADD.

The United States produces and uses about 90% of the world’s stimulants. In Canada, the per capita use is only 50% of that in America, but consumption of methylphenidate hydrochloride (Ritalin, Novartis Pharmaceuticals, Dorval) in this country quadrupled between 1990 and 1996 (6). By projection, using IMS Health Canada data from 1997 to 1998 (7–9) and the 2001 Canadian Census population figures (10), there are easily more than 350,000 Canadians currently taking Ritalin. About 30% of these individuals are between age five and nine years, 44% are 10 to 14 years and 8.6% are 15 to 19 years, which equals 5.17%, 7.41% and 1.44% of Canadian children in these age ranges, respectively. Knowing that 22% of the prescriptions are for girls, it is easy to calculate that 7.9% of boys aged five to nine years, 11.34% ages 10 to 14 years and 2.21% ages 15 to 19 years are taking methylphenidate (Table 1).

TABLE 1.

Methylphenidate use in Canadian youth

Age (years)	Both sexes	Population in Canada 2001			n	Population using Ritalin
		Male	Female	Ratio (males:females)		Percentage	Men (n[%])	Women (n[%])
All ages	31,081,887	15,388,494	15,693,393	49.51:50.49	350,000	1.13	273,000 (1.77)	77,000 (0.4)
5–9	2,030,513	1,039,900	990,613	51.21:48.79	105,000	5.17	81,900 (7.88)	23,100 (2.3)
10–14	2,077,877	1,065,487	1,012,390	51.28:48.72	154,000	7.41	120,120 (11.27)	33,880 (3.3)
15–19	2,085,004	1,071,010	1,013,994	51.37:48.63	30,100	1.44	23,478 (2.19)	6,622 (0.6)

These calculated figures are modestly higher than published reports (11–14) of methylphenidate use in Canadian youth, but the message is quite clear and significant.

ADHD is defined by the Diagnostic and Statistical Manual of Mental Disorders, fourth edition (DSM-IV) (15) (Appendix 3) as consisting of six of nine inattention, or six of nine hyperactivity and/or impulsivity symptoms for six or more months, present from before the age of seven years, with impairment in two or more settings and not attributable to other conditions. Note that individually these abnormal ADHD symptoms are not clearly distinguishable from normal temperamental variations. However, it is the coexistence of features that defines the disorder.

When examining standard distribution curves such as those representing intelligence, it is evident that half of the population is, by definition, below the population average (16). Just as intelligence shows this Gaussian variation, so do many other personality attributes such as impulsivity, attention span and motor restlessness. Temperamental research recognizes that 50% of any population of children are more active and 50% are less attentive than average. When quantifying traits for the DSM-IV ADHD/ADD criteria, there are no solid empirical data to support the current use of six of nine of the activity or inattention behaviours as defining the true cutoff point where normal leaves off and abnormal begins (17). The parental and teacher diagnostic questionnaires in use for ADHD do improve diagnostic accuracy over individual physician assessment (1,3,4,18), but are highly subjective and impressionistic (19,20). Variations in experience, tolerance or criteria used among parents and teachers are not allowed for (21).

While there is no accurate measurement of impulsivity, inattention or motor restlessness, these are the core features that determine the diagnosis of an attentional disorder. Still (22) in 1902 was the first to describe a cluster of children with hyperactivity, learning difficulties, conduct disorders and poor attention. In the 1930s children with these characteristics were designated as having ‘minimal brain damage syndrome’ because a number of the study population had known neurological deficits (23). In 1957 the term ‘hyperkinetic impulse disorder’ was used, changing to ‘hyperkinetic reaction of childhood’ in the 1960s and 1970s. In 1980 the DSM third edition (DSM-III) (24) first used the term ‘attention deficit disorder’ with or without hyperactivity. In 1987 DSM-III (revised) (25) manual, referred to this diagnosis as ADHD. The term was maintained in the current DSM-IV, which was printed in 1994, but changes to diagnostic criteria were made (15).

In the first half of the 1900s approximately 1% to 2% of the general population was thought to display pathological levels of these core features, sufficient to interfere with learning, socialization and educational advancement. At that time, hyperkinesis was essential for diagnosis and many of the children had suspected or documented underlying neurological abnormalities. Most ADHD researchers do not question the validity of an abnormality in this group (23).

The criteria for ADHD/ADD diagnosis was broadened with each edition of the DSM, and the incidence of children ‘affected’ has reached 4% to 10% (1,26–29), with some communities reporting levels above 25% (27). Just switching from DSM-III [R] to DSM-IV diagnostic criteria for ADHD/ADD in the same population using data from the same assessors increases the rate of diagnosis substantially (28,29). One study showed a 64% increase (from 9.6% to 17.8% of 1077 students) in diagnosis as a result of the less stringent DSM-IV criteria (28). Despite these concerns, ADHD experts deny any significant increase in the actual clinically reported prevalence of ADHD/ADD using the DSM-IV criteria (30).

Following the Multimodal Treatment Study of Children with ADHD (31), the use of psychostimulant medication as monotherapy starting at symptom recognition is being recommended by some investigators (6,31–33), although this is controversial (34). The duration of stimulant therapy, once it is started, is also controversial (6), but proponents are increasingly prescribing adults these medications (35). This is despite the fact that no long term studies have ever demonstrated Ritalin to be effective in helping individuals adapt or adjust to the pressures and demands of school or society (36–43).

With the dilution of diagnostic criteria and inclusion of higher functioning individuals, the outcome results with or without medication should improve. If this proves to be true, supporters of pharmacology may interpret this as validation of its liberal use. However, it has been known for many years that stimulant medication not only reduces impulsivity and improves concentration in those with ADHD, but also has similar benefits in so-called ‘normals’. Administration of psychostimulant medication improves vigilance, reaction time and accuracy in tedious or rote tasks, in all recipients (42,44–47). Decreased fidgetiness and interrupting, reduced aggressiveness, improved compliance, improved short term memory, and improved parent-child interactions are also documented with medication use (48–51).

Also, studies have shown significant drop-offs in problematic features as children moved to adolescence and then from adolescence to adulthood whether or not medication was used (23,39–42). Mannuzza et al (36–38), whose research is frequently referenced, seems to be fair and unbiased in their interpretation of results. In follow-up of 103 hyperactive children, Mannuzza found full or partial ADD with hyperactivity in 40% during adolescence and 8% to 11% in adulthood. Beiderman et al (52) also showed a progressive decline in the presence of ADHD symptoms with aging, regardless of medication use. By late adolescence, rates of 60% syndromic remission (features insufficient for diagnosis), 25% symptomatic remission (features insufficient for subthreshold diagnosis) and 10% functional remission (no impairment) were observed in the oldest (18- to 20-year-olds) subjects at four-year follow-up.

Long term outcome studies show that many individuals with ADHD experience problems with education, occupation and social deviancy (23,36–42,48). While over 90% of individuals with ADHD become gainfully employed, their socioeconomic ranking as adults is significantly lower than controls. Antisocial personality is 10 times more likely in adulthood for those with ADHD than those without, and drug abuse is nearly five times more common. These findings are consistent among investigators, and similar whether or not the ADHD subjects had been treated with psychostimulant medication.

Those with ADHD complete, on average, 2.5 years less formal education than controls, with a large high school dropout rate (25% to 32%). Mannuzza et al (38) observed that “…the school environment is especially aversive to hyperactive children and it probably continues to be so through later life.” Is this relationship caused by the symptoms of ADHD, or is it an effect of long term frustration and reduced self-esteem within the school environment?

Considerable data indicate that children with ADHD are more likely to meet diagnostic criteria for one or more mood disorders than are comparison children (53,54). Treuting and Hinshaw (54) compared 53 nonaggressive ADHD boys, 61 aggressive ADHD boys and 87 comparison boys. The ADHD subgroups reported more symptoms of depression, with the aggressive subgroup showing the highest reporting rate. Nineteen per cent of nonaggressive ADHD boys and 27% of aggressive ADHD boys met or surpassed the mild clinical cutoff of the children’s depression inventory compared with 5% of the control group. The groups also differed in terms of self-esteem. The nonaggressive ADHD boys reported less social self-esteem and marginally less behavioural self-esteem than did comparison boys. The deficits in aggressive ADHD boys were far stronger. These children reported lower global, behavioural and academic self-esteem, as well as less overall happiness than their nonaggressive ADHD peers and the comparison boys.

Self-esteem generally refers to how we feel about or how we value ourselves. Branden (55) defines self-esteem as “the disposition to experience oneself as competent, cope with the challenges of life and as deserving of happiness”. He suggests that self-esteem rests on the ‘twin pillars’ of self-efficacy (one’s perception of confidence in an ability to perform successfully) and self-respect (a sense of personal worth). Covington (56) noted that as the level of self-esteem increases, so do achievement scores; and as self-esteem decreases, so does achievement. Kaplan (57) found evidence that for individuals with low self-esteem who have experienced consistent failure, delinquent behaviour serves to enhance self-esteem as a way of getting back at the system. He also reported that students with lower levels of self-esteem were most likely to adopt deviant behavioural patterns. Thus, low self-esteem becomes a tremendous source of anger and hostility, which frequently results in violence. Kite (58) found that of seven major factors contributing to school dropouts, four of the factors were related to self-esteem, with students feeling that they lacked the intelligence or the ability to succeed in school. These comments are in regard to all children, not just those with ADD, and suggest that social and educational experiences strongly influence the self-esteem of ADHD/ADD children, and can contribute to the adolescent and adult outcome.

Labelling can be disabling. Some studies have shown that this phenomenon is not limited to the individual but also affects the perception of educators (59). The frequently cited study done in 1968 by Rosenthal and Jacobsen (60) purported to show potential harmful effects of labelling. In this study children had intelligence testing performed with the results given to the teachers indicating which children were likely to show large gains during the school year. On retesting later in the year, those children labelled as potential ‘bloomers’ achieved significantly higher scores than the rest of the children. The investigators felt that these changes were due to expectancy cues conveyed by the teachers to the children, thus resulting in a self-fulfilling prophecy.

Research in ADHD has identified negativism with the diagnosis and use of pharmacology. Children labelled with ADHD are being continuously reminded of their deficiencies, and use of medication can further magnify their differences or abnormalities (21). Consequently, some children will reject medicine, rather than tolerate the daily reminder of their perceived defect (50,61). Also, the label can influence their self-perception, leading to the conclusion that the ‘label’ is a thing inside them causing the behaviours appropriate to the label (62). This can result in explanatory fiction (63) where the label becomes both a description of the behaviour and the cause, “My ADD is acting up today.”

In the Treuting and Hinshaw study (54), boys frequently described medication as a cause of positive ADHD-related outcomes and a lack of medication as a cause of negative ADHD-related outcomes. This finding was in contrast to other studies assessing medication and attribution by ADHD children (64,65). However, it is rather blatantly implied in much of the professional literature that individual effort is not enough for ADHD children to succeed (32). Is this the message that we want children to have? Without medication, you cannot succeed or are less likely to succeed. How do these children develop self-esteem, self-confidence and self-determination when receiving these mixed and negative messages? Are these children failing our system or is our system failing these children?

The mission of the Nova Scotia Department of Education is “to provide excellence in education and training for personal fulfillment and for a productive prosperous society” (66). If indeed the purpose of the school system is to produce well-adjusted individuals and to nurture learning as a lifelong enterprise, why is it done in an autocratic manner with a narrow curriculum? Imagine what it does to impulsive imaginative children when they are forced to engage in activities that they do not like, or see any relevance to completing. Imagine how difficult it is for these children to sit quietly for six or more hours a day. They are then rated verbally and through report cards on their ability to curb natural personality traits and continuously hear that their behaviours are inappropriate and their efforts are insufficient. Many children with ADHD traits are also somewhat socially and emotionally immature. For them, being in age-segregated classrooms means reduced chances to interact with children of similar developmental interests and age, and teasing if they do seek out younger children on the playground.

Many different classroom strategies for ADHD/ADD students have been devised and tried (with and without pharmacology). These include increased special education support, smaller classroom sizes, modified curriculums, more hands-on learning (67), psychoeducational interventions (68), behavioural parent training and behavioural interventions in the classroom (69), and paraprofessionals in the classroom (70) to name some. They all continue to identify the child in question as abnormal, appear to be expensive to coordinate and have variable reported benefits. Also, if the results from the Multimodal Treatment Study of Children with ADHD are valid, these interventions by themselves are all inferior to pharmacology for short term outcome (31).

There are other educational alternatives (71). In 1968, Sudbury Valley School (SVS) opened in Framingham, Massachusetts. This school is founded on democratic principles, with these students responsible for initiating their own educational experience. Emphasis is on individual responsibility within the construct of a socially responsible environment. There are no formal classrooms, and there are no artificial grade levels. Students from four to 19 years are free to mingle, interact and participate in chosen activities. The student population includes those who started and complete their educational experience at this school and students from public or private schools that transferred to SVS. The outcome of SVS students is very good, at least comparable to public education, with more than 80% of those graduating going on to some form of postsecondary education (72). The defining legacy of the school appears to be a strong sense of self, with most students experiencing and developing confidence and beliefs in their own self-determination and ability to learn (73). Throughout the 32-year history of the school there have not been problems with learning disabilities or ADHD (61) (D Greenberg, personal communication, February 2002). The students benefit from the open democratic structure and develop excellent cooperative skills in addition to tolerance for differences and, as indicated, self-determination. They are not forced to conform to a structure that does not suit individual personality, nor are they made to study curriculum that has little interest for them. The graduates speak highly of their experience at the school and believe that the intrinsic rewards from self-determination helped them in achieving life success (71,73).

While there are no formal statistics to document the number of transfer students with ADHD and medication use, there have been a number of such students that did attend SVS. Anecdotal reports indicate that medications were stopped and these students achieved similar outcomes to their ‘normal’ peers (D Greenberg, personal communication, February 2002). This type of finding and other data that indicate significant improvement in the ADHD population on completion of public schools (23,38–40,52) suggest that many of the problems encountered in our society result from enforced expectations and inflexible curriculums within the public school setting. Perhaps many of the children with ADHD are being labelled with a medical or psychological disorder when indeed it is a social diagnosis more indicative of ills within the educational milieu.

The American Academy of Pediatrics (1,2) and the American Academy of Child and Adolescent Psychiatry (3) have published guidelines to aid with the diagnosis and treatment decisions regarding ADHD. These large organizations have a very powerful influence on the medical community and such guidelines are adding validity to a diagnosis that has no proven physical correlete, and a treatment that has not been proven to be of long term benefit. The Canadian Paediatric Society position on psychostimulant use is more cautionary, but not as recent and is currently being reviewed (4).

The medical dictum — first do no harm — is often interpreted as a corollary of the Hippocratic oath that most physicians have sworn to follow. I will follow that regimen which, according to my ability and judgment, I consider for the benefit of my patients, and abstain from whatever is deleterious and mischievous. I will give no deadly medicine to anyone, if asked, nor suggest any such counsel (74).

It is the responsibility of medical professionals to continually monitor the various factors involved in the cost-benefit ratio of interventions. The paediatric associations and societies have long been strong advocates for issues affecting youth in adolescence. Perhaps it is time for these societies to re-evaluate their current stance on the use of psychotropic medication in such a large percentage of North American children. The development and presence of democratic schools in North America allows different options for individual students. The money spent on pharmacology, diagnosis, assessment, counselling, and social supports for children suspected of having ADHD may be better spent on revamping our current public educational programming and structure.

The freedom to pursue individual interests, following individual timetables, using innate talents and strengths while learning socially responsible behaviours seems to be an ideal educational premise. When natural, intrinsic reinforcers drive and sustain behaviour (eg, I read because I enjoy it), positive outcomes are likely (75). Traditional schools use less effective extrinsic, contrived reinforcers (eg, grades, notes to home, punishments, etc) to encourage compliance and effort. Medication can be useful in decreasing impulsivity, improving task attention and tracking, and decreasing motor restlessness (44–51). These effects can all be beneficial in helping students to avoid the negative consequences of noncompliance, forgetfulness or incomplete tasks, but does it lead to the intrinsic satisfaction that promotes self-learning and motivation? Does it help in the core areas of self-esteem and self-worth, both so important to long term outcome? Medication improves short term classroom survival, but does not influence motivation, enjoyment of learning or development of self-monitoring and independence.

When children have no alternative but to attend public school, they are expected to conform to the standard mold. In this setting, pharmacology can transiently aid in forcing a square peg into a round hole, but ultimately may be contributing to long term psychosocial problems. With the option of varied experience offered in the democratic free schools, it is no longer a necessity for students to fit within the standard scholastic mold for success in life to occur. Although formal studies have not yet been done, the issue of medication does not appear to have the same urgency or validity in this different educational setting. Cookie cutter education needs rethinking (76).

While I cannot dance, I have many other talents that allow me to pursue a happy and rewarding life. These children, grouped under the umbrella of ADHD/ADD, deserve similar freedoms in forging their own lives. SVS and similar democratic schools are positive steps in changing educational philosophy to allow such freedom. There are currently 25 to 30 democratic schools worldwide, similar to SVS (77); the first such school in Canada (Fairfield School) opened in Wolfville, Nova Scotia, February 2002. With proper educational alternatives that respect their individual strengths, these children with ADHD/ADD should be eagerly preparing for life in the fast lane, not living in the last lane. Welcome to Canada Fairfield!

APPENDIX 1

Diagnoses assessed and methods followed

In review of primary diagnostic codes used for billing, the 700 included 303 attention deficit hyperactivity disorder (ADHD) or attention deficit disorder (ADD), 100 learning disabilities, 122 behavioural problems, 73 developmental delay, 47 autistic spectrum disorder, 16 Tourette’s syndrome, 10 Down syndrome, eight oppositional defiant disorder, five conduct disorder, five obsessive compulsive disorder and three school phobia diagnoses. There were multiple children with two or more diagnoses (comorbidities), but these cannot be ferreted out without doing chart reviews (not the purpose of this paper). Therefore, the actual number with ADHD/ADD is greater than 303, but in these children, another diagnosis was more clinically important.

ADHD/ADD was diagnosed using the Diagnostic and Statistical Manual of Mental Disorders, fourth edition criteria. Specific information about the children was obtained through standard parent and teacher Connor’s questionnaires, developmental questionnaires for parents and school questionnaires for teachers, in addition to the clinical interview and examination. Any testing by school psychometrists or school psychologists was also reviewed. Occasionally school meetings of involved professionals were necessary.

More than 90% of children also had developmental screening done in the author’s office to assess reading ability (letter recognition, sight vocabulary, paragraph reading, comprehension, spelling), basic mathematic skills (number recognition, counting skills, simple and complex addition and subtraction, simple division and multiplication), auditory analysis skills (Rosner testing), visual spatial skills (drawing geometric shapes, draw-a-person) and occasionally assessment of handwriting clarity, accuracy, sizing and speed.

Children on medication were followed monthly initially, then every three to six months thereafter, unless problems were encountered.

This information is provided only to establish the author’s experience in dealing with ADHD/ADD and schools as a community paediatrician, not as a clinical outcome study.

APPENDIX 2

APPENDIX 3