Discussing the ‘obsession’ with childhood disorder labelling
In recent decades, we have too often passed the buck of social problems to children who lack the power to say no to stigmatizing psychiatric labels. Laura Batstra and Ernst Thoutenhoofd call for reflection on these non-evidence-based, ineffective and sometimes even harmful practices.
The instability of labels
Recently, a well-designed cohort study reported that nearly 40% of 213 toddlers classified with an autism spectrum disorder (ASD) no longer met the criteria for ASD at the age of 5-7 years. ‘Recovery’ from ‘autism’ was not associated with the intensity of the treatment received. Treatment, by the way, often concerns Applied Behavior Analysis (ABA), itself noted to be particularly child-unfriendly in a recent assessment of it. The suggestion that children often ‘recover from autism’ is in line with previous studies into the (in)stability of autistic behavior. Likewise, it has been known for some time that around two-thirds of children who are given an ADHD classification do not meet the criteria for it after eight years: it seems that ADHD, mistakenly associated by a range of biomarkers, such as smaller brains, tends also by and large to miraculously disappear, given a few years of maturation.
Absence of evidence
Findings of this sort are not only strikingly at odds with the overly confident biomedical rhetoric associated with the mental disordering of children, they are also particularly disturbing in terms of the research ethics of child welfare and child rights. After all, research on the usefulness of psychiatric classifications should have been conducted well before millions of children worldwide were given these developmental disorder labels.
A major scientific intervention was unduly made in the lives of all these needlessly diagnosed children, giving them a label that they will only be able to shed with great difficulty. Diagnostic intervention in the lives of children and their families happened and continues to happen in complete absence of convincing scientific evidence that childhood disorder diagnoses would do more good than harm. It is often noted that youth care should be conducted in an evidence-based manner, but the deplorable evidence-base for childhood classifications means that it is not. Not only do children often ‘grow out of’ supposed childhood disorders, it has moreover also been concluded that disorder labels do not improve the quality of life of the vast majority of diagnosed children in the longer term. Diagnoses sooner bring about substantive risks, including reduced feelings of self-efficacy and reduced confidence in the ability to learn, lower expectations by teachers, exclusion, and feelings of (self)stigma.
Sound scientific proof for beneficial long-term effects is also lacking for treatments given to children with mental disorder diagnoses in young persons’ mental healthcare systems. There is no evident support for the so-called ‘intervention as prevention’ hypothesis: the widespread but scientifically unfounded supposition that early intervention can preempt later problems. A study involving 1420 children followed long-term has shown that psychiatric treatment in fact resulted in increasing the risk of substance abuse among participants.
Medical model
Surely, this is information that parents whose children are at risk of being diagnosed should be aware of: childhood mental disorder diagnosis and treatment might bring about an initial and temporary relief, but expectations should be greatly tempered by the significant prospect of adverse consequences in the longer term. It is surely regrettable that parents and others concerned are all too readily and often presented with the erroneous suggestion that a mental disorder is present in the child that should be recognized and treated as soon as possible in order to prevent it becoming worse.
This illusory projection rests in a medical model of childhood problems that quite simply ceases to hold beyond some expressly physical conditions. An infection is best identified as early as possible, so that a course of antibiotics may be advised, but as far as psychiatric and behaviour problems are concerned such a medical line of reasoning is worse than useless. Our emotions and behaviours, especially those of young children, are quite simply far too complex, socially situated and changeable for such simple routines to work. Childhood mental disorder classifications such as ADHD and ASD are for that very reason not more than mere convenient terms for behaviours that are experienced as troublesome; they are neither explanations for such behaviours, nor do they indicate cause or predict whether or which intervention will help.
Social determinants
Providing professional support and intervening when serious concerns arise about childcare and childrearing can often appropriately be done with considerable reticence and accessibly (at low threshold), without immediately pulling children and families into full-blown specialist care and without, as importantly, the disadvantages and risks associated with giving a child a serious label to carry. Warning against the commonplace disorder thinking in the psy-sciences and its consequences also guides the so-called Stepped Diagnoses approach we advocate instead. In Stepped Diagnosis, childhood mental disorder diagnoses are reserved only for those children and families afflicted by very serious problems that were not responsive to supportive and behavioural interventions and that hence necessitate considerable psychiatric care. Aside from Stepped Diagnosis however, there ought to be far greater attention across the social sciences to identifying suitable remedies for the social determinants of emotional and behavioural problems today’s children experience: poverty, unsafe neighbourhoods, deficient education systems, the very wide gap between privileged and underprivileged life courses, and much more besides—since it seems abundantly clear that whatever problems our children experience, they fairly accurately and predictably reflect the various fault lines and divisive ruptures in our present social systems.
Reflection
After having for decades now charged children with labels that are patently stigmatizing and do not help them, it is time to step away from a clinical psychiatric approach that foregrounds disorder classifications. Critical and scholarly self-reflection on what has so far been achieved with childhood disorder diagnoses would be welcome. However, the field of clinical psychiatry seems to merely push further ahead as if nothing seems wrong. Meantime we are too often told in research that ‘the system’ is to blame for the diagnostic inflation.
This observation brings us to a contrary conclusion. Whenever children show challenging behaviour that is clearly and inevitably set in social context, we make the child the problem owner and give it a disorder label. Yet whenever adult professionals behave in a manner that is less than consistent with the scientific evidence base, we point to the system. On what basis do we then expect to be of service to children who need help with managing their emotions and behaviour? We hope for far greater critical reflection and evaluative conversation among psy-scientists, social science scholars and youth care professionals, including taking a hard look at academic and professional adults’ own role and responsibility in greatly inflating the number of useless diagnoses over the last decades and seriously misdirecting the work in mental youth care systems. Scholarly and professional reflection is needed to learn from the present misdirection in childhood clinical psychiatry, which is what the (mis)labeling of so many children can be called. Whatever power accrues to social systems, science is hardly without power.
Authors
Laura Batstra, University of Groningen, the Netherlands
Ernst D. Thoutenhoofd, University of Gothenburg, Sweden