Troubled Children:: Diagnosing, Treating, and Attending To Context
Troubled Children:: Diagnosing, Treating, and Attending To Context
Troubled Children:: Diagnosing, Treating, and Attending To Context
S4 Introduction
S5 I. Defining Psychiatric Disorders and Assessing Individual Children Are Complex Activities
S20 III. Our Treatment Development and Health Care Systems Constrain Diagnostic and Treatment Choices
in Ways That Are Bad for Children
SIDEBARS
S14 Primary Care Physicians Need a Better Understanding of Temperamental Variation William B. Carey
S18 Research Can Help Clarify the Benefits and Limitations of Psychiatric Medications in Children
Benedetto Vitiello
S21 The Role of Schools in Fostering a Bias toward Efficiency over Engagement Lawrence Diller
Erik Parens and Josephine Johnston, Troubled Children: Diagnosing, Treating, and Attending to
Context, Special Report, Hastings Center Report 41, no. 2 (2011): S1-S32.
Troubled Children:
Diagnosing, Treating, and Attending to Context
BY E R I K PA R E NS A N D J O S E P H I N E J O H NSTO N
environments are more likely than others to contribute research expands our conception of environment beyond
to the emergence of particular emotional and behavioral the old-fashioned notions of culture, neighborhood,
disturbances. Perhaps the most dramatic examples are school, peers, and family to include the intrauterine en-
the traumatic stresses associated with abuse, neglect, and vironment and even the cellular environment in which
poverty, which we have long known put children at sig- genes are expressed.
nificantly increased risk of some mental disorders.6 (See It is not, however, only abuse, neglect, and trauma
Mary Burkes sidebar for more on stress and mental ill- that can affect rates of mental illness. Environments can
ness.) Research in genetics, epigenetics, and neuroscience also matter in the sense that some are more likely than
over the last decade shows that psychopathology results others to predispose parents to prize and cultivate some
from exceedingly complex and ever-changing interactions sorts of moods and behaviors that can look similar to
among biological and environmental variables.7 This symptoms of psychiatric pathology. More specifically,
some research suggests that different cultures of parent- Some biologically oriented researchers have, however,
ing are associated with higher rates of particular mental sought to demonstrate that interpretation or social con-
disorders. Anthropologist Sarah Harkness and colleagues struction does not really matter when it comes to recog-
report that whereas parents in the United States seek to nizing psychiatric disorders. One group collected studies
stimulate cognitive development by encouraging high from across the world reporting huge variation in the
levels of arousal and activity in their children, parents in prevalence of ADHDfrom 1 percent to 20 percent
the Netherlands are more focused on promoting rest and seeming to confirm that the diagnosticians interpreta-
regularity.8 One implication is that in their efforts to cul- tion or construction is very significant in determining
tivate certain highly valued traits such as intelligence or what counts as ADHD.12 They argued, however, that by
adaptability, U.S. parents risk inadvertently cultivating controlling for methodological differences among the
disvalued traits such as hyperarousal or inattention. This investigators in the different countries they could effec-
implication would partially explain why psychiatric disor- tively apply the same diagnostic criteria across the differ-
ders like attention deficit hyperactivity disorder (ADHD) ent data sets, which revealed a consistent prevalence rate
are diagnosed at higher rates in children in the United of ADHD at a little over 5 percent. They then inferred
States than in most other countries.9 that, as two commentators on their analysis frankly put
Further, interpretations or constructions of the same it, ADHD is a bona fide mental disorder (as opposed to
moods and behaviors can change over time or differ be- a social construction).13
tween cultures. For example, as mainstream child psy- While we accept that ADHD can name a cluster of im-
chiatrists today readily allow, a mild version of the cluster pairing symptoms, we do not accept that research such as
of behavioral traits that we call ADHD and today view that we just mentioned can by itself show its bona fide
as impairing was not necessarily impairing and may even core. We can imagine, for example, a carefully described
have been adaptive in some earlier stage of our evolu- cluster of behavioral traits constituting what a panel of
tion, when children could succeed in life without years of experts called Contented Child Syndrome, and that di-
schooling or when high reactivity helped identify preda- agnosticians trained to recognize that cluster would find
tors.10 In another example, developmental psychologist similar prevalence rates across different countries. But
Charles Super and colleagues, who studied how moth- that would not alone show that Contented Child Syn-
ers in seven different countries interpret their childrens drome is a bona fide psychiatric disorder, or that social
moods and behaviors, found that while the mothers in construction plays no role in determining which clusters
all of the countries reported similar moods and behav- of moods and behaviors are mental disorders.
iors in their children, the mothers differed by country on In view of the ways in which interpretation or social
whether they considered particular moods or behaviors construction can affect the diagnosis of psychiatric disor-
difficult. Italian mothers, for example, were more likely ders, researchers in the United States and elsewhere have
than those in the other six countries studied to focus on over the last few decades aspired to put psychiatry on a
their childrens sociability and to consider shy tempera- firmer scientific footing. According to Robins and Guzes
ment problematic, but they were less likely to be con- famous criteria, valid psychiatric disorders should have
cerned about negative mood. Super et al. conclude that clear clinical descriptions, be distinguishable from other
what is appropriate or healthy in one cultural context disorders, have a predictable clinical trajectory, aggregate
may not be in another, due to differences in the mean- in families, and be identifiable by laboratory studies.14
ing and functionality that are constructed around specific Biologically oriented researchers have for the last few de-
behaviors.11 cades thus searched for the sorts of genetic or neurological
markers that a standardized laboratory procedure could
readily analyze to determine a diagnosis. These efforts parents to access treatments and other services. The fol-
to cut nature at its joints have yielded some intriguing lowing six issues begin to explain the respect in which
findings.15 But we do not yet have a genetic or neuroimag- our current diagnostic system can result in disagreements
ing test to diagnose disorders like ADHD or depression, about whether a psychiatric disorder is present, and if
much less their subtypes.16 Indeed, geneticists increasing- there is one, which one.
ly grapple with the fact that, in general, identifying single 1) Heterogeneity within diagnostic categories. Children
gene variantsand even identifying patterns of multiple with different symptoms can receive the same diagnosis.
genetic variantsdo not yield as much insight into the For example, according to DSM-IV (the most recent ver-
emergence of these common, complex disorders as was sion), the essential feature of ADHD is a persistent pat-
once hoped.17 Similarly, neurobiologists grapple with tern of inattention and/or hyperactivity-impulsivity that
the fact that variations in single neural circuits do not by is more frequent and severe than is typically observed in
themselves explain the emergence of common psychiatric individuals at a comparable level of development.20 To
disorders.18 It is increasingly accepted that for a biologi- receive the ADHD diagnosis, children must exhibit at
cally informed system of diagnosis to work, we will need least six of the eighteen core symptoms listed in DSM-IV.
to understand a great deal more than we do today about The symptoms are divided into two major behavioral do-
how myriad genes, multiple neural circuits, and myriad mains: inattention and impulsivity-hyperactivity. Among
environmental variables all interact over time and in a de- the nine symptoms of inattention: often making careless
veloping organism to produce complex behaviors.19 mistakes, often having difficulty sustaining attention in
Former NIMH director Steven Hyman said at one of play or other activities, and often not seeming to listen
our workshops that those who seek a thorough under- when spoken to directly. A child exhibits some of the nine
standing of the causes of psychiatric disorders were born symptoms of hyperactivity-impulsivity if the child often
too soon. He is hopeful that biological investigation will fidgets or squirms, often cannot stay seated, blurts out,
eventually lead to diagnoses that are valid (or bona fide) and has difficulty awaiting a turn. Different children can
in Robins and Guzes sense. In the meantime, though, exhibit a different cluster of these eighteen behaviors, but
diagnostic categories of some kind are necessary for clini- receive the same diagnosis.
cians and researchers to communicate with one another 2) Overlap between diagnostic categories. Children
about similarly affected individuals, and for children and with some of the same symptoms can also receive different
not always as radically different as the categorical labels If, further, we remember the fundamental fact of di-
can seem to suggest. There is, for example, a continuum mensionality, two important features of the discussion
between children who do and do not warrant the diag- about childhood emotional and behavioral disturbances
nosis of depression: most children, after all, at some time are highlighted. First, there will actually be significant
experience sadness, or sleep disturbance, or eating distur- agreement that some children are on one end of a con-
bance. This dimensionality is not unique to children or tinuum and need help in changing their impairing moods
to psychiatry. There is also a continuum between adults and behaviors, and that other children are closer to the
who do and do not warrant a diagnosis of, for example, middle of that continuum and deserve to be affirmed in
hypertension. But because a trait like mood is closer to their atypical-but-not-impairing ways of being. Or, in
our sense of identity than a trait like blood pressure, and more colloquial parlance, there will be ready agreement
because recognizing these traits as symptoms of a disor- that some atypical children are sick and that other atypi-
der requires greater observer interpretation than reading cal children are healthy. Second, there will be a zone of
blood pressure results, our values play a bigger role in de- ambiguity between those uncontested regions of the con-
termining where to draw the line on the depression con- tinuum, in which reasonable people will disagree about
tinuum than on the blood pressure continuum. whether or not a given child is suffering from a disorder.
Because observers will bring different value commitments
Individual and Cultural Values Influence to their diagnostic analyses, some will have an expansive
Diagnostic Systems and Diagnosis in Practice conception of disordered behavior, and others will have
an expansive conception of normal variation. Acknowl-
SPECIAL REPORT: Troubled Children: Diagnosing, Treating, and Attending to Context S11
Values Talk Exacerbates Discrimination
BY SUS A N R E S KO
make that suggestion sound like and industry for intervening with
in particularto treat problems that seem to have their are expanded and the thresholds for diagnosis lowered,
proximate cause in educational, social, or cultural mores poses risks to individuals and society.34 As Peter Conrad
rather than in pathophysiological dysfunctions. Such ob- explains in his sidebar (see page S13), some critics are
servers have an expansive conception of the proper goals concerned that the medicalization processwhich locates
of medicine and psychiatry. They can argue that, insofar the childs problem in her body rather than her context
as the goal of medicine and psychiatry is to promote the is fueled not by the needs of patients, but by drug com-
well-being of persons, and insofar as what counts as well- panies, which profit by creating or expanding disorders
being always depends on functioning in a particular time for which they then market medication treatments, even
and place, there is no reason to be alarmed if psychiatrists where the medications have limited efficacy and carry the
aim to help people to functionor even to excelin this risk of serious side effects.35 As William Carey explains in
particular time and place.33 According to this line of argu- his sidebar (see page S14), other critics are concerned that
ment, it would be far more compassionate and construc- we are losing touch with what is normal for children.
tive to diagnose and treat people who are impaired than Conrad, Carey, and others demand that we recognize
to label them as bad and punish them, or to label them as that a wide range of human temperaments and behaviors
weak and let them suffer. are compatible with a healthy human life.36 Surely this is
Other observers are alarmed by this tendency. They right. Nonetheless, it can also be true that many of the
suggest that what sociologist Peter Conrad calls medi- children diagnosed with mental disorders can be helped
calization, whereby the goals of medicine and psychiatry by a medical understanding of their problems. Some of
Medicalization
BY PE T E R CO N R A D
secularization, is not necessarily ei- Physicians are now sometimes just
SPECIAL REPORT: Troubled Children: Diagnosing, Treating, and Attending to Context S13
Primary Care Physicians Need a Better Understanding of
Temperamental Variation
BY W I L L I A M B . C A R E Y responses. Behavioral, emotional, Physicians can help to educate
extent to which one emphasizes one of two deep obli- and others will emphasize the obligation to shape them.
gations that parents must constantly balance.37 On the Which obligation one is prone to emphasize may help to
one hand, parents have an obligation to let their children explain ones decision in the zone of ambiguity. Parents
unfold in their own ways, to affirm their children as in- who emphasize their obligation to shape their children
dividuals, to let them be who they are. The violin-loving may be fairly quick to see intervention in the zone of am-
father who pushes his football-loving son to play the vio- biguity as just one more instance of fulfilling that obli-
lin fails to accept his son and affirm his sons pursuit of gationeven though they accept that they also have an
what seems good to him. On the other hand, parents have obligation to let their children unfold in their own way.
an obligation to shape their children through discipline, If a choice has to be made between promoting a childs
education, and adherence to traditions. A parent who lets flourishing in our society as it is and affirming her in her
his child stay home all day every day and play for as long behavioral or temperamental differences, these parents
as, and at whatever, suits him violates his obligation to might choose the former. Other parents will be more in-
shape his child. clined to let their children unfold in their own ways and
Though both obligations are fundamentally impor- will therefore be reluctant to see their childrens moods
tant, it is inevitable that in particular situations some and behaviors as potentially disordered and in need of
parents will emphasize the obligation to let children be, psychiatric assessment.
One of us (EP) has elsewhere emphasized that medi- some other diagnosis than the one the child has received.
cal professionals have traditionally underestimated the The third mistake entails underdiagnosis: failing to diag-
capacity of children to participate in making decisions nose a disorder when one is present.
about their own care, and that medical professionals and The Great Smoky Mountain study illustrates that
parents have an obligation to include children in those these mistakes can take place simultaneously. Research-
discussionsto the extent that the children are able to ers in this study examined a representative sample of
participate in light of their age, maturity, condition, and 1,422 children in the western region of North Carolina.41
the nature of the decision.38 That obligation seems likely Trained interviewers applied DSM criteria, including the
to obtain across pediatric medicine,39 although establish- requirement for impaired functioning, from which they
ing how much capacity a given child has to participate in estimated that about 6.2 percent of children in the com-
decisions about her own care may be more complex in the munity met the criteria for ADHD. (A greater number
psychiatric context than in others. The appropriate role of exhibited one or more ADHD symptoms but fell short
children in making decisions about their own psychiatric of the diagnosis.) The researchers then looked at rates of
care is a hard and important issue. Our working group stimulant use and found that 7.3 percent of children in
did not pursue it, but we agree that it warrants further the study had received stimulants at some time during the
attention. four-year study period.
Recognizing that some disagreements about how to At first glance, it might appear that just slightly more
diagnose or treat a given child can arise because reason- children received stimulants than met the DSM criteria
able people emphasize different but equally respectable for ADHD, implying mild overdiagnosis. But the num-
values in no way minimizes the enormous social and eco- bers actually revealed a more complicated situation. The
nomic pressures bearing on families to emphasize some researchers found that not all of the children who warrant-
value commitments rather than others. Nor does it in any ed an ADHD diagnosis had received stimulantsthat is,
way minimize the need to distinguish between reasonable they found undertreatment, implying underdiagnosis of
disagreements and mistakes. ADHD. And they found that 4.5 percent of children who
Diagnostic mistakes. Clinicians, teachers, and par- did not warrant an ADHD diagnosis had nevertheless re-
entsall of whom may be pressed for time and burdened ceived stimulantsthat is, they found overtreatment, im-
by cultural, systemic, and resource pressurescan make plying either overdiagnosis or misdiagnosis. While this is
at least three sorts of diagnostic mistakes. The first sort a small percentage, it is 4.5 percent of all the nonaffected
entails overdiagnosis: clinicians can diagnose (or if they children in the study, and so amounts to a large absolute
are nonclinicians, they can think they see) a disorder number. In terms of absolute numbers, the study found
on the basis of observed behaviors or moods but fail to that more children without ADHD received stimulants
recognize that those symptoms are not associated with than did children with ADHD.
impaired functioning,40 or they can fail to consider the So how do we know when we have a reasonable dis-
possibility that the observed behaviors or moods are bet- agreement and when we have a diagnostic mistake? In the
ter understood as manifestations of a difficult but healthy beginning, a reasonable disagreement and a diagnostic
temperament. The second sort of mistake entails misdiag- mistake may be indistinguishable. But there is an impor-
nosisa failure to diagnose the right disorder. In this tant difference. Mistakes can be fixed with more time or
case, the child has symptoms associated with a DSM-de- information. Reasonable disagreements, however, persist,
fined disorder, but the symptoms are a better match for even after careful reflection and discussion, and are due to
SPECIAL REPORT: Troubled Children: Diagnosing, Treating, and Attending to Context S15
deeply held value differences. Disagreements are reason- will reach different conclusions about how best to under-
able when, after learning all I can about your position, stand particular clusters of moods and behaviors, where
my response to you is not youre mistaken about a fact to draw the line, and whether a particular child in the
or you didnt look carefully enough or you did this too zone of ambiguity would be helped by a diagnosis. In
quickly, but you and I disagree about the goals of medi- making these judgments, all parties will be influenced by
cine or the goals of parenting or about what will promote their different (usually unarticulated) conceptions of the
my childs flourishing. goals of psychiatry and parenting, which can result in dif-
What, then, is the upshot of the diagnostic complexi- ferent but equally reasonable decisions about whether to
ties and value differences that we have begun to explicate? intervene. Neither critics of, nor enthusiasts about, inter-
In some cases it will be possible to reach easy consensus vention proceed from facts alone to the decision about
about how to describe a disorder, where to set diagnostic whether diagnosis and treatment are warranted; value
thresholds, and whether a given child has a psychiatric commitments play an ineradicable role.
disorder. In other cases, clinicians, teachers, and parents
are important in the daily functioning of these children current data do not bear that intuition out. Medication
(e.g., academic performance, family relations), they said, can produce acute, short-term improvements in on-task
the combination of behavior therapy and medication behavior, compliance with teacher requests, classroom
was necessary to produce improvements, and families and disruptiveness, and parent and teacher ratings of ADHD
teachers reported somewhat higher levels of consumer symptoms,49 and there is some evidence that stimulants
satisfaction for those treatments that included behavioral help improve school-work accuracy and productivity. But
therapy components. The researchers also noted that researchers do not currently have sufficient data to con-
children receiving combined medication and behavior- clude that these improvements translate into long-term
al therapy were able to take lower doses of medication, improvements in learning.50
which had fewer side effects and a better safety profile. ADHD is one of the best-studied childhood mental
Nevertheless, following publication of these initial find- disorders, yet as the MTA and other studies of the ef-
ings, medication alone was widely regarded as an accept- fectiveness of medication and behavioral treatments for
able and effective first-line treatment for ADHD.46 ADHD show, the data are both complex and potentially
Yet when MTA researchers followed up with their par- confusing. The data on the effectiveness of treatments
ticipants ten months after the study ended, those in the for other disorders are equally if not more difficult to
medication and combined arms of the study were show- assessalthough, as Benedetto Vitiello observes in his
ing superior reduction in ADHD symptoms and supe- sidebar (see page S18), we know far more now than we
rior improvement in reading, social skills, and functional did a decade ago. Most studies still look at the impact of
impairment.47 Two years after the study ended, research- treatments on symptoms only, excluding other treatment
ers found that, on average, children originally enrolled in goals, like educational achievement and parent-child rela-
each of the four arms of the study had improved to the tions, that are important to children and families. Few
same degree; that is, even though the group of children studies follow children over many years. Few studies com-
originally assigned medication management or combined pare medication treatments to evidence-based psychoso-
treatment had shown superior improvement after four- cial treatments or a combination of both.
teen months in the study and ten months after the study Yet in the face of very difficult and damaging emo-
ended, no treatment group outshone any other two years tions and behaviors, treatment decisions must be made.
after the study finished. Some children had improved For them to be made well, there is increasing agreement
more than others, but the differences did not correspond that psychosocial (behavioral) interventions should also
to the mode of treatment they received.48 be considered.
To further confuse matters, there is insufficient evi-
dence that stimulant medication improves learning or Psychosocial Interventions
overall academic achievement. Like many medications
used in pediatric psychiatry, stimulants can reduce the
severity of symptoms, or even eliminate them, but they
do not repair the underlying causes of those symptoms.
T he potential for adverse drug reactions, no matter
how small, is one reason people sometimes invoke the
principle of do no harmand urge beginning with psy-
They can reduce a childs inattentiveness and hyper- chosocial treatments and home and school-based inter-
activity, but cannot teach the child to pay attention or ventions.51 These interventions include teaching teachers
to control his or her activity levels. Further, while one how to better teach children with the particular disorder,
might assume that, by reducing symptoms, stimulants teaching parents how to better parent children with the
make it easier for children to concentrate and thus learn, particular disorder, and helping children to monitor and
SPECIAL REPORT: Troubled Children: Diagnosing, Treating, and Attending to Context S17
Research Can Help Clarify the Benefits and Limitations of
Psychiatric Medications in Children
BY B E N E D E T TO V I T I E L LO term, but they do not appear to symptomatic improvement. We still
substantially change the course of lack sufficient information on the
manage their own behaviors and emotions. Parents and to have (depending on the particular studys design) re-
teachers post rules, adjust workloads, provide choices, covered from an acute episode of bipolar disorder, experi-
reinforce good behavior, and offer special tutoring.52 enced improvement in their levels of depression or mania,
Children and families may also undergo cognitive behav- received a reduced score on a psychiatric rating scale, or
ioral therapy, family-focused therapy, or psychoeducation improved on symptom measures.54 A 2004 review of cog-
(where patients and family members learn about the dis- nitive behavioral therapy for anxiety and depression con-
order affecting them and how to cope with it). cluded that the empirical literature is more supportive
Some psychosocial interventions have been studied for problem-specific psycho-therapies, especially CBT,
and shown to be effective. For example, studies of chil- than for medication management of pediatric depressive
dren and adolescents diagnosed with bipolar disorder53 disorders.55 A 2009 meta-analysis of over 170 studies
have shown that patients receiving one or more psycho- concluded that behavioral treatments improve the func-
social treatments in combination with medication are on tioning of children with ADHD and that efforts should
average more likely than those receiving medication alone be redirected from debating the effectiveness of the
SPECIAL REPORT: Troubled Children: Diagnosing, Treating, and Attending to Context S19
treatments. They can quickly improve a childs symp- Importantly, while some parents and clinicians will
toms so that she can return home from hospital, return emphasize the value of efficiency and others will empha-
to school, or return to her regular activities. Behavioral size the value of engagement, most will hold both val-
interventions, on the other hand, tend to emphasize the ues, just as they appreciate both the obligation to shape
value of engagement, by requiring parents, peers, teachers, children and the obligation to let them unfold in their
or therapists to work with the child and with his environ- own ways. In a perfect world, the debate about diagnos-
ment.62 Because behavioral interventions seem to locate ing and medicating children would be about how best to
the problem in the interaction between the child and balance these different value commitments. But too often
her home, school, and social context rather than in her in the United States, diagnostic and treatment decisions
body, they can prompt us to notice the importance of the are driven and constrained by the broader culture and the
childs environment and take steps to improve it. They institutions and systems in which parents, children, and
also may help the child learn to think of herself as a moral clinicians must operate.
agent, as someone who can learn how to change.
SPECIAL REPORT: Troubled Children: Diagnosing, Treating, and Attending to Context S21
Pharmaceutical Company Influence
BY J O H N Z . S A D L E R for treatment-resistant schizophre- upon industry runs deep, and its in-
nia cast doubt on the superiority of fluence through marketing and oth-
from an honest belief that the moods and behaviors of by increased use of antipsychotics and mood stabilizers in
the children at issue are what bipolar disorder looks like children.71 One result of the enormous financial invest-
in children.70 But some of the research supporting this ment in developing and marketing medication treatments
expansion was supported by pharmaceutical companies, and the comparatively small investment in psychosocial
which stand to gain financially if increased diagnosis of treatments is that medication is more familiar and readily
bipolar disorder in children is followed, as it seems to be, accessible to practitioners and patients.72
SPECIAL REPORT: Troubled Children: Diagnosing, Treating, and Attending to Context S23
A Call for Improved Postmarketing Surveillance
BY J U L I E M AG N O Z ITO current research and Food and Drug for children with attention deficit
for childrens mood and behavioral disturbances. Several frequent than is necessary for optimal treatment man-
of these features are causes for concern in themselves agement. One study of adults and children treated with
because in addition to limiting clinicians and parents antidepressants reported that just under 15 percent of pa-
choices, they suggest that children are not receiving rec- tients received recommended follow-up care in the first
ommended care.80 four weeks of treatment.82 As Gabrielle Carlson argues in
In general, visits to medical practitioners are very brief. her sidebar (see page S25), these economic pressures also
Although one study showed that pediatricians spent an undermine the quality of clinician training.
average of between five and nearly seven minutes lon- From a provider perspective, the system is fragmented
ger with patients when behavioral health concerns were among primary care physicians, hospitals, and various
raised than when they were not,81 visits including be- other mental health care providers, with little cross-com-
havioral health concerns are still likely to last less than munication or coordination following referrals and lim-
twenty minutes. It is extremely difficult in such a limited ited interaction with other systems that care for children,
time for practitioners to undertake careful mental health including child protective services, juvenile justice, and
diagnoses; reassess these diagnoses periodically; discuss, schools.83 Practitioners and parents seeking psychosocial
carefully monitor, and reassess medication treatments; interventions have limited ability to identify services,
or provide and monitor psychosocial interventions. Not judge their quality, or assess the expertise of individual
only are these visits of short duration, but they are less practitioners. Primary care providers have limited ability
SPECIAL REPORT: Troubled Children: Diagnosing, Treating, and Attending to Context S25
Listening to Children with ADHD
BY I L I N A S I N G H medication it might be harder to doctor to help my act get better. I
United States and United Kingdom angry more, and I would be, like, In many ways, Doug, the boy
who had been diagnosed with atten- getting in trouble a little bit more in the first excerpt, sounds like the
tion deficit hyperactivity disorder. than I do [without medication]. classic ADHD patienta child
Both boys in the excerpts below are whose brain works too fast, making
American, ten years old, and being Toby: At home I got two dogs, it difficult for him to pay attention
treated with stimulants. Neither boxers, and I got [five siblings], and and behave appropriately in school.
receives behavioral treatments or my mom and dad. My house okay. Pharmacological treatment helps
formal school-based services. Ac- Most parents dont let kids go out- him to meet home and school ex-
cording to their parents, both are side every day because they be fight- pectations and to feel better about
responding well to medication. ing. In my neighborhood they shoot himself as a person.
people. . . . The second boy, Toby, also has
Doug: I get in trouble when I I feel happy when I get things trouble in school, and medication
argue with my brother and sister right at school, like my spelling test. may help reduce his symptoms,
and when I dont get good grades. Right now my grades bad because but he describes a home, school,
My mom might yell at me and that everybody keeps picking on me.... and neighborhood that would chal-
makes me angry sometimes. In This kid, [B], he be pushing me, lenge most children with or without
school I get in trouble if I come out and we hit each other. I got bit in ADHD. Medication alone is un-
of my seat a lot. I guess I do that my face. He run away and I get pun- likely to help him succeed in school
sometimes, like, if I need to talk to ished. Then I have to stay home, do or to feel better about himself.
my friends. Thats a little bit part of chores, my mom get mad at me. I While Doug may benefit in the
having ADHD. But sometimes I, tell my teacher [about kids picking long term from medication alone
um, can, um, think before it hap- on me] but she dont do nothing because of all the social structures
pens. ADHD makes my brain think about it. . . . already in place to support him,
faster. I know answers to questions I know a kid brought a gun to Toby needs more than medication
really quicker, so that is the good school. He said he was going to to achieve freedom of opportunity
part of having a fast brain. [But] I shoot us. . . . One girl, she bad, she and long-term well-being. A psychi-
might do something I think is good, tripped this dude in the class and atric diagnosis should not distract us
but I didnt think what would hap- kicked him in the shoulder. He was from addressing the broad spectrum
pen if I do it . . . like talk to my leaking blood. of risk factors that contribute to dis-
friends and not think what the I dont know what [ADHD] is ordered behavior. To support Tobys
teacher will say. Then I get in trou- but I know we talked to the doctors capacity to realize his social and be-
ble for that. about how my grades are and what I havioral goals, it will be necessary
When I dont take my medica- was doing in class. Like, do you riff to integrate medical treatment with
tion my head hurts a little bit be- or stuff like that. [It makes me sad] the design of more just and equi-
cause my brain thinks too fast and that I cant learn nothing and I for- table social arrangements.
I get a headache. If I didnt take my get stuff. My mom took me to the
treatments (and hospitalization), but they are unaffected referrals for psychotherapy.88 Claims for psychosocial
by the use of psychotropic medications. interventions, unless covered by recent parity legislation,
In the past two decades, managed care has succeeded usually carry higher copays and deductibles than visits for
at limiting access to and utilization of psychosocial in- medication management, and may be subject to annual
terventions by separating mental health and substance limitations. Behavioral HMOs may further restrict reim-
abuse care from the rest of the health insurance benefit bursement for psychosocial interventions by requiring the
and by managing those services differentlyfor instance, presence of the patient at each treatment session, which
by making it easier for patients to obtain referrals for means that they do not cover parent training, for example,
medication management and psychopharmacology than which is known to be effective but does not require the
presence of the child. They may also disallow reimburse- cultures that restrict treatment choices not only prevent
ment for case management and rehabilitative services.89 families from choosing some treatment programs with a
Finally, few incentives exist for payers to cover long-term, strong evidence base, but prevent them from accessing
large-scale prevention programsfrom interventions for and clinicians from offering or recommendingtreat-
high-risk families to programs specifically targeting chil- ments that reflect their value commitments.
dren who have experienced traumadespite strong effec- Making pharmacological treatments the default op-
tiveness data for these programs.90 tion also risks encouraging an erroneous habit of think-
The result of this fragmentation and these restrictions ing. Even where medications are safe and effective at
on treatment availability and coverage is that every step in addressing symptoms of concern, they are seldom the
childrens mental health care is compromised, from assess- only intervention worth pursuing. Parents, teachers, cli-
ing the childs needs to providing information on treat- nicians, and even children themselves need to pay atten-
ment choices, accessing treatments, and monitoring the tion to additional steps that may be taken to help children
effectiveness of whichever treatments are provided. learn to manage their emotional distress and problematic
behaviors, including taking steps to change childrens
Whats the Result of This Compromised System? environments. One risk of focusing solely on the phar-
macological mode of treatment is that the more we use
SPECIAL REPORT: Troubled Children: Diagnosing, Treating, and Attending to Context S27
diagnostic thresholds and about whether a mildly affected children deserve developmentally appropriate and com-
childa child in the zone of ambiguitywould benefit prehensive assessments to determine whether a psychi-
from a diagnosis. These disagreements can occur when atric diagnosis is appropriate. Moreover, if children are
people have different value commitments or just give dif- diagnosed with emotional and behavioral disturbances,
ferent emphases to shared value commitments (regarding, they should have access not only to medication treat-
for example, the goals of psychiatry or the goals of parent- ments but also to empirically supported psychosocial
ing). Such value differences or emphases can play out in and behavioral services.91
the context of treatment decisions as well. As we attempt to improve our systems of delivering
As important as it is to recognize such disagreements, mental health care to children, we should remember
it is also important to recognize how much agreement that, even though some disagreements about diagnostic
there can be among people as diverse as those who con- and treatment decisions will persist, there is fundamen-
stituted our working group. For one thing, there is agree- tal agreement that children and families deserve access to
ment that children can indeed have serious psychiatric careful diagnosis and multimodal treatment approaches
disorders and that medications can be an essential part of that are safe, effective, and reflect their value commit-
appropriate treatment plans. For another, no matter how ments. Our ethical obligations to children require that
important it is to tolerate reasonable disagreements, it is weincluding policy-makers, educators, medical pro-
essential to avoid the sorts of mistakes that involve patent fessionals, and parentsremember that in addition to
overdiagnosis, misdiagnosis, and underdiagnosis, which changing children (by pharmacological or psychosocial
result in many children not receiving the care they need. means), we also have the power to change the contexts in
These mistakes are facilitated by systemic forces that bear which children are embedded, which can be key to lasting
on clinicians and families and restrict the time available improvements in their mental health.
for careful diagnoses. Specifically, these forces can make it
Acknowledgments
tempting to base a diagnosis on the presence of symptoms
alone, as opposed to doing the sort of careful evaluation The writing of this report was funded by grant U13
that can determine whether those symptoms impair the MH78722 of the National Institute of Mental Health to
child. Those same systemic forces strongly favor medica- The Hastings Center. The authors wish to thank their scien-
tion treatments over psychosocial ones, so that children tific collaborator Benedetto Vitiello of the National Institute
too often receive pharmacological treatment only, even of Mental Health for his generous advice, and their research
when other treatment plans are supported by evidence and assistant, Ross White. They also wish to thank the staff of
reflect their or their familys deepest value commitments. the Hastings Center Report, Greg Kaebnick, Joyce Griffin,
Improving the quality of the U.S. pediatric mental and Nora Porter, for their careful and helpful editorial con-
health care system would include supporting the develop- tributions, and two anonymous reviewers for careful and
ment of psychosocial treatments, comparative effective- helpful comments. The Centers new media director, Jacob
ness and postmarketing research on approved treatments, Moses, has done a wonderful job of giving this document
training clinicians in sophisticated medication manage- and our project a Web presence. Finally, the authors grate-
ment and delivery of psychosocial interventions, and fully acknowledge a generous gift from Dr. Eve Hart Rice
instituting reimbursement policies that enable clinicians and Dr. Timothy D. Mattison, which made the production
and families to access both treatment modalities. As of this report possible.
all members of our working group could readily agree,
SPECIAL REPORT: Troubled Children: Diagnosing, Treating, and Attending to Context S29
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