The misrepresentation of evidence

About a week ago I was involved in a heated twitter debate about this blog post. I felt, as I said on twitter and in my extensive comments about the blog, that it entirely misrepresented the evidence about Adverse Childhood Experiences by implying that because of risk multipliers within particular population groups, certain negative outcomes were almost inevitable for people with multiple ACEs. The author repeatedly asks rhetorical questions like “If 1 in 5 British adults said they were abused in childhood in the last CSEW (2017), why hasn’t our population literally collapsed under the weight of suicides, chronic illness, criminality and serious mental health issues?” Likewise, she asks how anyone can be successful after childhood abuse if the ACEs research is correct. I replied to explain that this simply isn’t what the data tells us or what risk multipliers mean, so the exceptions are expected rather than proof the finding is incorrect. For example the claim that a 1222% increase in the risk of suicide amongst people with 4 or more ACEs meant these people were doomed, in reality means that the odds increase from 1 in 10,000 to 1 in 92, meaning that 91 of every 92 people with 4+ ACEs do not die by suicide.

ACEs are a very useful population screening tool, and have provided incontrovertible evidence of the links between traumatic experiences in childhood and numerous social, psychological and medical outcomes that has been highly informative for those of us designing and delivering services. To me it seems like an example of how a simple piece of research can have a massive impact in the world that benefits hundreds of thousands of people. Yet that blog repeatedly implies ACEs are a harmful methodology that “targets” individuals and to is used to “pathologise and label children, arguing that those kids with the high ACE scores are destined for doom, drugs, prison, illness and early death”. It has been my experience that ACEs are used not to pathologise individuals, but to to highlight increased vulnerability, and to identify where there might be additional need for support. For example, I have used this data to argue for better mental health services for Looked After Children.

I felt that the repeated misrepresentation of the maths involved in interpreting risk multipliers undermined the entire message of the blog, to which I was otherwise sympathetic. (For the record, it is entirely appropriate to highlight bad practice in which it seems certain professionals are applying ACE scores to individuals inappropriately, and making people feel that their life chances are restricted or their parenting under scrutiny because of their childhood experiences of trauma). But unfortunately the author took my polite, professional rebuttal of elements of her blog as a personal attack on her – to the extent that she misgendered and blocked me on twitter, and refused to publish my response to her comments about my reply to her on the blog. That’s a shame, as the whole scientific method rests on us publishing our findings and observations, and then learning from the respectful challenge of our ideas by others with knowledge of the topic. But I guess we are all prone to defending opinions that fit with our personal experience, even if they don’t fit with the evidence.

Thinking about how uncomfortable it felt to see someone I considered to be a peer whose expertise I respected misrepresenting the evidence and being unwilling to correct their misconceptions when challenged, but instead trying to discredit or silence those making the challenge, it struck me that this was an example that highlighted a wider issue in the state of the world at the moment. Evidence is being constantly misrepresented all around us. Whether it is the President of the USA saying there is a migrant crisis to justify a wall (or any of the 7644 other false or misleading statements he has made in office) or the claims on the infamous big red bus that Brexit would give the NHS £350 million per week, or Yakult telling us their yoghurt drink is full of “science (not magic)” now that they can’t pretend live cultures are good for digestive health. There are false claims everywhere.

I stumbled into another example just before I started writing this blog, as I (foolishly) booked accommodation again through booking.com, despite the horrible experience I had last time I tried to use them (which remains unresolved despite the assurances from senior managers that they would reimburse all of my costs). I booked a room in a property in London which they have euphemistically called “Chancery Hub Rooms” to stay over whilst I delivered some training in Holburn. It wasn’t a hostel or a hotel, but just a small terraced house. This time it had keypad entry to the property and to the individual room, which is a system that I have used successfully several times in Cambridge. Unfortunately it didn’t work so well in London, as they changed the codes twice without informing me. Once this resulted in locking me out of the room on the night of my arrival (and meaning that the beeping on the door as I tried the various codes they sent me woke the lady in the neighbouring room, due to the total lack of sound insulation in the property) and then by locking me out of the property the following evening, when all my stuff was locked inside. It also had glass inserts above the room doors that meant your room lit up like Times Square when anyone turned the landing light on. I then discovered that the building (which I already recognised to be small, overcrowded and not complying with fire regulations) had walls like cardboard, when the couple in the next room had noisy sex, followed by noisy conversation and then a full blown argument that lasted from 3am to 4am – despite me eventually in desperation asking them quite loudly whether they could possibly save it for a time that wasn’t keeping everyone else in the building awake. Of course Booking.com didn’t see it as their problem, and the member of staff I got through to after a 15 minute call queue didn’t even seem to comprehend what the problem was (though I couldn’t tell if the barrier was language, accent or simply not understanding the situation). The property management company just blamed the other guests for being inconsiderate, whilst denying that the building was inherently problematic and saying they had no alternative accommodation or staff intervention to offer.

So I felt like I should be able to reflect my negative experience in my review. But oh no, Booking.com don’t let you do that. You see, despite seeing that properties appear to have scores out of ten on every page when booking, you can’t score the property out of ten. What you can do is to determine whether you give a smiley that ranges from unhappy to happy for each of their five ratings (which don’t, of course, include quality of sleep or feeling safe). So if you think the location was convenient, the property gets a score above five out of ten, no matter what other qualities mean you would never wish to sleep there again. But worse than that, the Booking.com website forces reviewers to give a minimum length of both positive and negative comments, but only displays the positive comments to potential bookers. So my “It was in a quiet, convenient location” gets shown to clients, but you have to work out how to hover in the section that brings up the review score, then click the score to bring up the averages, then click again to access the full reviews, and then shift them from being ranked by “recommended” to showing them in date order to actually get an objective picture. Then you suddenly see that at least half the guests have mentioned that the noise from other rooms is a problem, the bathrooms were inadequate or failed to provide hot enough water, the fire exits were locked, the beds were cheap, the pillows flat, there was a strong smell of air conditioner that left people itchy or wheezy, the TVs in the rooms don’t work and not a single person had got the free wifi to work. It really made me wonder whether Advertising Standards might have something to say about it.

But just as Boris has faced no consequences for his bus claims (even though he stretched them further still after the ONS said he had misrepresented the truth), and Trump no consequences for his lies, and the consultants selling contracts worth hundreds of thousands of pounds of public funds to children’s social care departments proudly told me they just wanted to get on with the doing without that slow process of validation, so the world carries on with little more than a tut of disapproval towards people and businesses who intentionally mislead others. Maybe I’m in the minority to even care. But I do care. I feel like it is the responsibility of intelligent people and critical thinkers, people in positions of power, in the professions and particularly in the sciences, to ensure that we are genuinely led by the evidence, even if that makes the picture more complicated, or doesn’t confirm our pre-existing beliefs. To counteract this age of misinformation, we all need to be willing to play our part. That is why I have always placed such a focus on evaluations and research, and have developed my screening tools so slowly and thoroughly, despite the fact that potential customers probably don’t see this as necessary. I believe that as much as possible, we should be promoting the value of evidence, educating the public (including children) to be able to think critically and evaluate the evidence for claims, and stepping up to challenge misleading claims when we see them.

 

Nature versus nurture revisited

This week I have been reading the Power Threat Meaning Framework published by Lucy Johnstone and colleagues. This document is an attempt to challenge the dominant medical model in adult mental health with a more functional framework for formulation, based on the person’s experiences and circumstances. It is an interesting and challenging read, because it tries to cover the political and philosophical context of challenging the medical model, and input from service recipients about the benefits and challenges of different ways of conceptualising their difficulties. But at the core it rests on a pretty simple and (I’d like to think by now) well-established concept – that the adverse childhood experiences a person has prime them to use survival strategies that make them vulnerable to difficulties later in their life. Those early templates for dysfunctional relationships and the sense of self created by inconsistency and maltreatment also mean that people are more likely than others without those experiences to go on to have other relationships and experiences that are traumatic/harmful as they grow older, which compound the strategies and narratives with which they navigate adult life. The survival strategies which made perfect sense in response to their experiences at the time, have a lasting impact on the brain, body and behaviour. They change the way the person perceives themselves, understands the world and relates to others, and go on to have detrimental effects long after the initial trigger is gone.

As I have mentioned in previous blogs, a person exposed to high levels of trauma or adversity, especially if lacking protective relationships, will become more vigilant to signs of threat, less able to focus on the tasks that help us attain educationally and in the workplace. Where their early relationships have been dysfunctional, they are likely to struggle with forming healthy later relationships, and are more likely to express needs indirectly and in ways that cannot be ignored – including in ways that lead to negative societal responses, such as rejection and/or pejorative judgements by others, involvement with mental health services (and being given diagnostic labels), involvement of criminal justice systems. This leads to an increased risk of socioeconomic adversity, lower social connectedness and a greater chance of a range of adverse outcomes.

In short, thinking about adversity in both the person’s childhood experiences and current context, not only gives us insight into the biggest variable in personality disorder, attachment disorder and other specific conditions. It also explains a lot of the risk factors for wider issues with physical and mental health, challenging behaviour, addiction, violence, crime, homelessness, harmful relationship patterns and helps determine our sense of self and our ability to make healthy social connections. Adverse childhood experiences increase the risk of a very wide range of  physical and mental health problems, for a range of reasons including lower self-care and poor lifestyle choices, a lack of self-monitoring and seeking of appropriate care in the early stages of problems, and what seems to be increased propensity for ill-health mediated by the stress messengers in the body.

I’d go so far as to say that getting child protection and parenting right is the biggest task facing humanity, and the area where I believe we can make most difference for the future – hence dedicating my career to working with the kids who have experienced the most adversity and trying to improve their outcomes. But as I have explained above, it doesn’t just stop there, because the ripples of that early adversity continue to spread out into the lifespan for many people, forming a barrier to the protective factors of education and employment, establishing social networks, and the means to access pleasurable activities. This can then be compounded by financial hardship, hostile systems (such as benefits sanctions and fitness for work tests) and lack of access to resources (including finding it hard to identify and navigate access to social care and health services, to know and assert their rights, or appeal against decisions made by organisations). So the same people who experienced chronic developmental trauma and have unresolved psychological consequences from that are often struggling with their personal relationships, as well as practical issues like debt, homelessness and crime. In that context, dysfunctional coping strategies like substance abuse or presenting with challenging behaviour or mental health symptoms make more sense as attempts to obtain escape or safety.

There are also vulnerability factors such as being in a disempowered/minority population group, that also bring compounding adversity such as sexism, racism/xenophobia, homophobia, transphobia, ableism, ageism, religious intolerance, etc. These can impact at all life stages. For example, a child with physical or intellectual disabilities is more likely to be the victim of abuse, to experience bullying, and (perhaps increasingly as they grow up) to struggle to access community resources, financial independence or a supportive social network. For people from cultures outside of the majority in the country where they live, there can be language and cultural barriers, prejudice and political/economic challenges, as well as exposure to poverty, war, terrorism and other threats to survival that are outside the experience of the majority of lifetime residents of developed nations. Certain population groups such as asylum seekers find things particularly challenging in terms of finding safety, housing, financial security, after already experiencing multiple traumas in the country they have left and during their journey to find safety. Each individual is unique and their story, current situation and past experiences are a huge influence on the way that they experience and interact with the world.

As Johann Hari rightly points out in his recent article to promote his new book, everybody knows that our experiences, relationships and living conditions impact on our state of mind. If a loved one such as a partner or child dies, you are likely to be sad (and perhaps angry, or relieved if they were suffering, or many other complex feelings). Likewise, if you are given a warning of impending missile attack most people would feel anxious, and become hypervigilant for signs of threat. Therefore, most people would not think of grief after a bereavement or loss, or anxiety when in an acutely threatening situation as pathological. Which makes it somewhat curious that the medical model has been applied to mental health in the way that it has. Why has it become that depression or anxiety or even addiction is seen as a disease, a neurochemical imbalance that needs to be treated with medication?

Perhaps the advances of modern science studying genes and neurochemicals made us think of ourselves as complex biological machines that could be understood at a physical level. Perhaps there is wishful thinking about biological models leading to potential cures. Perhaps the fact that brain injuries, tumours, dementias and neurodevelopmental conditions can make an impact on our feelings and behaviours made it seem that all feelings and behaviours could be attributed to brain changes. Perhaps the idea of massive numbers of people suffering is too distressing to think about and it is a common defence to depersonalise that, and to other the person suffering. Perhaps the narrative of mental illness has sustained the power and income of the medical profession as experts and gatekeepers to such treatments. Perhaps it was clever marketing propaganda by the pharmaceutical companies to sell more of their products. Perhaps it was so persuasive because it fits with the neoconservative narrative to think of individual failure rather than individuals showing the symptoms of societal problems (and therefore our collective responsibility to solve these problems and look after each other, rather than just thinking of ourselves). Or, more likely, it was a combination of these and many other factors.

Of course, we don’t want to throw the baby out with the bath water. There are certainly people for whom psychiatric medication has made a massive positive difference. People who feel more able to concentrate and gain attainments when on stimulant medication, or who feel less hopeless, anxious or angry when on antidepressants, or people whose distress, confusion or aggression is reduced by neuroleptics. But we can’t work backwards from positive impact to considering that proof of a neurochemical deficit or imbalance. After all, the evidence for analgesics is very strong, but I doubt anybody thinks a headache is a symptom of lack of aspirin! We need good unbiased data to understand what is going on, not the cherry-picked examples that currently make it into the public domain. Alltrials is a good step in the right direction in this regard, but there is still bias in what research gets funded and what gets published, with bias towards the sexier topics of new technology, genetics, scans and hard science, and less towards the sociopolitical aspects affecting individual and population wellbeing.

I’m not saying that nature isn’t important. It seems likely that various medical/biological factors do mediate the impact of experience. For example, some conditions like autism, intellectual disability, and dementia do appear to have predominantly biological causes, whilst having impact on thoughts and feelings. Brain injuries and diseases can affect personality, mood and behaviour, and various hormonal and physical conditions can affect brain function and impact on mental health. There seem to be genetic differences (eg to telomeres) that make some individuals more resilient to adverse experiences than others. And some twin studies show genetic factors influence the incidence of conditions like schizophrenia and bipolar disorder, although again the epigenetic factors seem important, it is not clear whether the biological differences are a cause or a symptom of the condition, and the role of biology is not large enough on its own to explain who gets these conditions without also considering experience. Like most of these debates, the answer isn’t going to be one extreme or the other. I am glad that the pendulum has swung back towards considering nurture and experience more, and not exclusively the high tech science of genes, psychopharmacology and brain scans. It seems likely that who we are and how we feel and function in the world is affected by both our biology, our experiences, our circumstances and our relationships both now and in the past.

So, whilst Christine Courtois and Bessel van der Kolk’s efforts in the adult and child spheres respectively to get the impact of complex and multiple traumas and damaged attachment relationships recognised as a better way to understand attachment disorder and personality disorder than a neurobiological disease model (and their challenges to the DSM) have not yet been successful, I am heartened if this way of understanding the impact of experience is gaining more credibility in the field. I think the power-threat-meaning framework might be helpful for some clients, and the questions that they advise asking are certainly good way of starting a clinical assessment.

“What is your story?” Specifically:

1) What has happened to you? (How is Power operating in your life?)

2) How did it affect you? (What kind of Threats does this pose?)

3) What sense did you make of it? (What is the Meaning of these situations and experiences to you?)

4) What did you have to do to survive? (What kinds of Threat Response are you using?) and are you still doing this?

5) What are your strengths? (What access to Power resources do you have?)

It certainly resonates for me, and I wrote about a lot of this stuff in my book, Attachment in Common Sense and Doodles in relation to children who don’t live with their family of origin. I wanted to make information about attachment and the impact of trauma more accessible to carers, legal professionals and social care staff and other profesionals in the child’s network. It isn’t novel content, as it was based on themes that had been researched, written and spoken about by others before me, but I have tried to present it in an accessible and engaging way.

I am heartened that in the last few weeks the idea of experiences and nurture being important in mental health seems to be reaching the public consciousness. It seems to be being promoted more vocally by a lot more clinical psychologists, and to have reached me in various different ways. I’m glad if it is gaining traction and a wider audience, but it might be that’s wishful thinking on my part, and merely a product of my unrepresentative sampling. In light of how horrible a lot of the news is since the Brexit vote, Tory election win and Trump victory, I’m trying to be more selective about what I read and the social media I engage with, so it could be I’m in more of a bubble of like minded thinkers these days, and that is the explanation for hearing more about models that fit my own thinking!