The risk of misdiagnosing distress & three key questions that educators must ask – a reflection on Chapter 9 of ‘Boy Raised as a Dog’

This week at our ‘Boy Raised’ book club we met ‘James’, a six year old who was severely abused for almost all of his life by his adoptive mother. It transpired that she suffered from Munchausen syndrome by proxy, or Factitious Disorder Imposed on Another (FDIA), and all of her children were swiftly removed following Dr. Perry’s intervention.

The abuse – sustained, extreme, very near fatal – had been allowed to continue for so long in large part because the child’s distress had been explained through a diagnostic label, Reactive Attachment Disorder (RAD). Admittedly, James’s mother had done some ‘doctor-shopping’ to secure this, but Perry maintains that misdiagnosis is a common problem: “Fortunately, RAD is rare”, he observes. “Unfortunately, many parents and mental health workers have latched onto it as an explanation for a wide range of misbehaviour, especially in adopted and foster children.”

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We know that this medicalisation of distress in children extends way beyond RAD with the chapters of ‘Boy Raised’ punctuated by a bewildering array of diagnostic labels, stuck by well-intentioned professionals onto childhood trauma, effectively mis-explaining and masking it.

This article from a 2014 issue of The Atlantic focuses on the over-identification of attention deficit/hyperactivity disorder (ADHD). Dr. Nicole Brown was completing a residency at John Hopkins Hospital in Baltimore when she noticed that many of her low-income patients had been diagnosed with the heritable condition. They came from households where violence and relentless stress prevailed. Parents had found them hard to manage and teachers frequently described them as disruptive or inattentive.

When Brown looked closely, though, she saw something else. “Hyper-vigilance and dissociation, for example, could be mistaken for inattention. Impulsivity might be brought on by a stress response in overdrive.” Brown saw trauma.

Inattentive, hyperactive, and impulsive behavior may in fact mirror the effects of adversity, and many pediatricians, psychiatrists, and psychologists don’t know how—or don’t have the time—to tell the difference. (The Atlantic, 2014)

To test her hypothesis beyond Baltimore, she analysed the results of a national survey about the health and wellbeing of more than 65,000 children. This revealed that children with diagnosed ADHD also experienced significantly higher levels of poverty, divorce, violence, family substance misuse. Those who had experienced four or more ACEs were three times more likely to be medicated for ADHD.

“We need to think more carefully about screening for trauma and designing a more trauma-informed treatment plan,” Brown concluded.

This peer-reviewed study, published in the BMJ, confirms that diagnosis of ADHD has increased ‘substantially’ in the past decade, alongside a broadening of its definition in successive editions of the DSM-5. This is observed internationally, with a doubling of the rate in The Netherlands and the medication costs of inappropriately diagnosed ADHD estimated to run at between $320 and $500m in the US.

The need for clinicians and, much further upstream, families, childcare providers, SENCOs and others, to view dysregulated behaviour through a trauma-informed lens has never been more urgent than it is now, in the midst of a pandemic. What we can predict we can prevent.

It’s worth pausing for a moment to reflect on this graphical representation of the original ACES survey and to consider whether there is a single component that Lockdown will not have aggravated:

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For the avoidance of any doubt, and please do share this post with the complacent or the deluded, some really dire statistics are already making headlines:

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These headlines float on a sea of distress and we must expect a huge wave of diagnostic labels, EHCP plans, clinical referrals, Ritalin prescriptions to follow, if there is no change in the way that we respond to childhood adversity.

That’s if nothing changes. However, the trauma-informed movement that was slow to arrive here but which is gathering momentum, does represent a gleam of hope on the horizon. Moreover, it’s a democratising movement that educators can drive alongside mental health experts. Clearly, my reducing what can be done in schools down to ‘three questions that educators must ask’ was both a gross over-simplification and a flagrant attempt to encourage visitors to this post, but there are I think three lines of enquiry that we should prioritise through our pastoral work with children and families, in the fallout of this pandemic.

1. What are the symptoms, exactly?

This overview of the difference between ADHD and trauma symptoms is a really helpful reference point for conversations about problematic behaviour that are taking a medicalised turn.

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It’s taken from the NTCSN’s Guide for Clinicians, which repays reading in full. Clearly, introducing the concept of ‘trauma’ to parents can be problematic and we must tread respectfully and carefully, but equally we cannot protect the best interests of children if we are not curious about the roots of their distress and willing to talk about their life experiences, especially early ones which parents may not otherwise mention. Families should be advised that trauma is very common (I write as the mother of children with ACEs) and it should not be shaming to discuss its impact.

2. Who can help?

In addition, there is the problem of what Perry calls “child illiteracy” which we can address through gentle but well-informed conversations about the impact of stress on the developing brain. Such conversations also need to emphasise the great hope that is neural plasticity and, crucially,  the point that recovery is possible when children have access to a reliable supply of high quality relational support.

‘Behaviour meetings’ might be steered such that Mum agrees to have ten minutes after school talking about what went well today, understanding the importance of that; there might be a plan to visit Gran more, who is much-loved; to introduce a reliable routine for contact with Dad; to try scouts. School will also contribute to this web of therapeutic support. Children should be asked to identify trusted adults and accommodations agreed within the plan such that time is made for talking. A relational safety-net will need to be formulated for times of crisis or dysregulation. Who do I go to and how do I get there?

The day that a pastoral support plan looks like this, rather than an unattainable and  school-centric report card, is the day that trauma-informed practice has truly arrived in a setting. It is worth emphasising the importance of its reliability – few things are more damaging to the progress of a child who struggles to trust and to feel safe than wobbly plans that are not carried through, exactly as agreed. This involves ensuring they are understood and implemented by all staff.

3. Where is the crack in the problem?

This is Leonard Cohen’s phrase and it features in Dr. Geoff James’ great little solutions-focused workbook for educators How good are we at helping children and families find the exceptions, the crack in the problem, so that it can be mined for optimum light? How does the diagnostic route assist in this life-enhancing and hopeful process? Is there a risk that the label stops us even searching for the cracks, the light, because we have our genetically-rooted explanation and we must now just learn to live with the problem?

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Solutions-focused coaching guards against these risks. A simple but powerful process that involves asking children the right questions and really listening to their answers, it has much to offer the trauma-informed school and is, for me, a pastoral care essential. I see it as taking the relationship that heals and fitting it with super-boosters. As Geoff writes in his introduction:

We know that relationships are the heart of education. Be entering the solutions-focused conversation on hopes, resources and successes, strong relationships will develop, between the child and their best self and between them and the solutions-focused coach, the facilitator of their learning. This is solutions focused coaching.

Geoff’s guide (which Lincolnshire schools may request digital copies of at no cost) outlines the 7 simple elements of the approach with ‘exceptions finding’ at its heart:

  • When are the times that (the problem) doesn’t happen so much?
  • Tell me about a time when (the problem) happened but didn’t last as long?
  • When are the times when other people would notice you (e.g. behaving, working, being kind…) in a good way?
  • When are things a little bit better for you? What was different then?
  • Tell me about a time when (e.g. you stayed calm) in that difficult situation? 

(Workbook for Educators, p46)

Through simple scaling, the coach is able to re-imagine the traditional, behaviourist approach to target-setting  (which fails in the face of real difficulties), and harness instead the agency of the child, as expert in self:

  • On a scale of 1 to 10, with 10 being in control of yourself in a good way and 1 being not in control of yourself, where would you say you are right now?
  • So what are you doing that means you are not at (….a lower number)?
  • Where on the scale do you hope to get to over the next (e.g. week)? What will you be doing then that’s different?

(Workbook for Educators, p49)

To conclude, we know that we must ask children and families ‘What happened to you?’ rather than ‘What’s wrong with you?’ to avoid misdiagnosing trauma. We know too the importance of asking children who helps them and of building a relational plan. But we must never forget the fact that all children are resourceful and capable of change and that the most compelling line of enquiry of all centres around this question:

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Published by Mary Meredith

Working in schools for over 20 years, I've been a Head of English, a SENCO and a deputy headteacher. I'm currently Head of Inclusion at Lincolnshire County Council. I am a sucker for the underdog. Always have been, always will be.

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