Broken Brains or
Broken Hearts?
Lucy Beney
“My mind had nowhere to rest, to be safe, nowhere to find peace”.
From Drop the Disorder, 2019, PCCS Books.
Introduction
Some of the greatest strengths of the human race are our diverse talents, personalities and interests, along with the different ways in which each of us looks at the world. Anyone who is a parent with more than one child is likely to remark how astonishing it is, that two or more children brought up in the same home environment, can turn out so differently. Each of us, while sharing many attributes, contributes something unique to our family, community and beyond.
Unfortunately, by a mixture of accident and design, we appear to have lost sight of this. Increasingly, in the western world, we live in an age of cultural conformity. The tramlines of what is regarded as ‘normal’ have narrowed, at a time when many parents and teachers are more stressed than ever, resulting in much less bandwidth for the outliers and the originals. Too often, a lack of conformity to an arbitrary set of standards results in a rush to ‘diagnose’ the child with one of the many acronyms now encompassed by ‘special educational needs’ (SEN).
The Short Path to ‘Disability’
The path down which a child walks, from being regarded as somehow ‘different’ to being labelled ‘disabled’ can be shockingly short. Recently a D for ‘disabilities’ has been added to SEN, to create SEND. This should give us all a pause for thought. What are the ethics of so casually labelling children with a ‘disability’? What effect does this have on those who struggle daily with chronic illness and serious physical impairment? It was recently reported that at the theme park, Thorpe Park, severely disabled visitors were unable to acquire accessibility passes, allowing them to skip long queues, “after a reported surge in park-goers with ADHD claiming passes”.[1]
The line between ‘learning disabilities’ and ‘mental health issues’ is also becoming increasingly blurred. According to the charity ADHD UK[2], a diagnosis of Attention Deficit Hyperactivity Disorder (ADHD) is listed as a ‘mental health disability’ under the Mental Health Act of 1990.
Out of the Mouths of Babes
It starts early. Aged five, at the end of their Reception Year, “each child must be assessed against seventeen Early Learning Goals (ELGs)”.[3] Within those ELGs, there are over fifty specific requirements. While intended to ensure that children’s needs can be planned for, in practice teachers are already keeping an eye out for signs that there is ‘something wrong’ with the child. While acknowledging that children develop and learn at different rates, already we are told that failure to meet targets “may be related to a potential or identified SEND”.
Children are likely to be ‘identified’ even sooner in future. I recently attended a webinar about a National Mental Health Intelligence Report: Estimating the proportion of 0-4 year olds in England that have a mental health need.[4] There is currently no data routinely collected on infants, but pilot research apparently suggests that the prevalence of ‘mental health conditions’ is 17% among pre-schoolers. Interestingly, the focus of the webinar shed light on what is being overlooked among older children. This was not, in fact, about any ‘disorder’, but very much on the importance of good relationships for healthy development. We know that young children need secure attachment, along with loving and consistent care from a responsible and responsive primary care-giver, if they are to thrive.
What is Wrong with Us?
It is undeniably true that many older children currently struggle in school and many have what are loosely called behavioural issues. Are they struggling because there is something ‘wrong’ with them? Or is there perhaps - as with the babies and toddlers - something wrong with what we, as adults, are providing, and how we handle those challenges? The acute suffering of many young people could perhaps better be described as ‘emotional distress’ arising perfectly understandably from their adverse experiences, environment and relationships. Studies from Harvard University demonstrate how nurture, in fact, shapes nature.[5] We need to take a clear-eyed look at where we are going wrong, and not focus on what is ‘wrong’ with our children.
First, education has become increasingly unimaginative and narrow in focus, with a premium put on particular skills and knowledge. Of course, it is important that we all become functionally literate and numerate, but we have forgotten just how diverse our talents can be, how originally we can think and the wide scope of our interests. The late educationalist, Sir Ken Robinson, warned us over a decade ago, that “if you sit kids down, hour after hour, doing low-grade clerical work, don’t be surprised if they start to fidget”.[6]
Secondly, all too often the behaviour we witness is a normal reaction to abnormal or highly adverse circumstances. Many children arrive in school without the solid foundations necessary to thrive. They feel anxious and cut adrift at school, and their heads are elsewhere. Many others, having lived with toxic stress and uncertainty all their lives, are highly reactive. Fight, flight, freeze or flop kicks in at the slightest provocation. These young people are unlikely to focus calmly for long periods of time. We need to see this behaviour and emotional dysregulation not as mental illness or disability, but more accurately as a response to “crap life disorder”, as described so eloquently by school counsellor Michelle Higgins in the March 2018 edition of Therapy Today.[7]
Our lack of curiosity risks masking children’s distress, overlooking their suffering and leaving their story untold. Ultimately, it means we are unlikely to provide them with the tools they need to overcome adversity and build resilience. We rush to treat and manage the symptoms, rather than dare to address the very large elephant in the room. That involves facing some very serious questions about how we live today, and the priorities that we have. In a world without boundaries, where anything goes as long as its consensual and we are satisfying our own desires, we need to look again at the value we place on family and on meaningful relationships – and at young people’s innate individuality, creativity and resilience. Children’s needs have fallen to the bottom of the pile.
Doubling Down on ‘Diagnosis’
There is no time to waste, if we want every child to thrive and fulfil their potential. Over 1.6 million pupils in England now have a ‘special educational needs’ diagnosis, up 24.9% since 2016, while the number of children with an Education, Health and Care Plan (EHCP) has risen by an astonishing 83.4% since 2016, and 11.6% in just the last year alone.[8] Children with an EHCP are deemed to need more support than is usually available through standard SEN provision, and frequently have multiple diagnoses. Together, just under 20% of school children in England currently either have an EHCP or SEN support. When one fifth of children are deemed to have a ‘disorder’, the term becomes meaningless, primarily to the disadvantage of those living with serious and life-limiting conditions.
ADHD, Autism Spectrum Disorder (ASD), Generalised Anxiety Disorder (GAD), Oppositional Defiant Disorder (ODD), Major Depressive Disorder (MDD) are but a few of the growing number of acronyms with which our children are being diagnosed. All have a number of things in common, the most significant of which is that they end in the word ‘disorder’. There is a clear implication that if someone is suffering with one or more (as is frequently the case), there is ‘something wrong with them’. Many then wear their acronym badges as an identity; others are resigned to being ‘disabled’ and the limitations they believe that brings. Neither of these approaches are healthy or helpful.
Then there are all the shades of ‘dysphoria’. Dysphoria literally means “a state of unease or generalised dissatisfaction with life”. Recently, I came across Rejection Sensitive Dysphoria (RSD), allegedly characterised by intense emotional pain because of a failure or feeling rejected, or when experiencing disapproval. We are rapidly moving towards the pathologising of normal feelings and emotions. We see it most clearly in the widespread fear among young people of ‘catching feelings’ for someone, as if this was in some way abnormal. Many young people express disquiet over feeling almost any emotion, beyond a transitory, Instagram-demonstrable happiness.
Dr Sami Timimi, a child and adolescent psychiatrist working within the NHS, has been in the forefront of challenging this move to diagnose and label children. In his book, Insane Medicine, he reminds us that many psychiatric diagnoses “have been literally imagined into being” by a few influential experts.[9] Ultimately, as Dr Timimi demonstrates, these are “subjectivities that relate to our understanding of what it means to be human”. I have written before about how distressing it is to meet young people who view themselves as nothing more than a bundle of diagnoses. Many, from the earliest age, have been marked out as ‘different’ for one reason or another. Some of these young people are among the most sensitive, interesting and imaginative people that I have met.
Most extraordinarily, none of these ‘disorders’ has an objective clinical test, or discrete symptoms – many are common to multiple conditions. It is therefore possible for two people to be diagnosed with the same ‘disorder’ whilst experiencing completely different problems. Diagnosis currently relies on highly subjective feelings and the observation of behaviour. Assessment is invariably heavily influenced by current cultural norms, social expectations and ultimately personal opinion, hence differences in prevalence across cultures and disagreement among professionals. With ADHD, diagnosis is not based on observations alone, but requires evidence that there are clear ‘difficulties’ linked to symptoms.[10] What remains unclear is who exactly experiences these ‘difficulties’ – the child or those around them? Shockingly, some children are required to take powerful medication, as a condition of school attendance. This can leave them feeling unwell and ‘not myself’ – but all is quiet in the classroom.
One Size Does Not Fit All
It is also alarming that these diagnoses disproportionately affect boys and young men. Could it be because the western world has become more feminised, and the idea of ‘toxic masculinity’ has erased the virtues of manhood encouraged in previous generations? The word ‘virtue’ actually derives from the Latin word vir, meaning ‘man’. Or, as Sami Timimi, suggests, have we forgotten that these boys “are young, develop at different speeds, that they are more energetic, or curious, or just boys”?[11] Add in the concerted efforts of some to erase the differences between the sexes, plus endless online exposure to polished and perfect parenthood, is it a surprise that so many are concerned when boys behave differently? As one SEND coordinator recently put it, schools are becoming ever more like ‘sausage machines’ – and those machines need to keep running with as little disruption as possible.
Think of the bright child, who was diagnosed with autism in primary school, on the grounds of selective mutism. This child also avoided interactions with their peers. Over a decade later, in therapy, this young person explained how they had very little in common with their classmates, and preferred looking for bugs in the grass at break time. For this, they were mercilessly bullied. They therefore decided to limit interaction with the rest of the class. When initially asked what was wrong, this child’s explanation was disbelieved on the grounds that the class was a lovely, inclusive group of children – and they were encouraged join in the games, rather than digging around in the grass on their own.
Another highly intelligent child, labelled with both autism and ADHD, had a very difficult home life and had missed a lot of schooling in the early primary years. This child had weak reading and writing skills, and spent hours in class doing detailed engineering-style drawings. The child was also fascinated by the solar system and continually asked questions about the universe, and whether or not there is a God – the kind of questions that human beings have asked since we first sat at the mouths of our caves and beheld the night sky. This was regarded as inappropriate and ‘weird’.
Both these young people felt they had been unfairly labelled, and believed nobody was listening. Instead of being appreciated for who they are, for their resilience and the content of their character, children are expected to fit neatly into categories which can be ranked in a prejudiced pecking order. At the same time, a combination of identity politics and social media has ensured that many others are players in an ongoing competition, where victimhood and vulnerability are prized and protected.
Dysfunction as Identity
Unfortunately, these young people have learnt that the greater the number of problems, and the more seriously they are regarded, the greater the kudos in class. A consequence of this has been a surge in self-diagnosis, which quickly constitutes an identity. Lists regularly appear of both the advantages and disadvantages of certain conditions, so broad that they could apply to anyone. Full of ideas? Funny? Accepting of others? A unique way of looking at the world? Full of empathy? These are all positives of having ADHD, don’t you know.[12]
In The Magic Mountain, protagonist Hans Castorp admits that, “one always has the idea of a stupid man as perfectly healthy and ordinary, and of illness as making one refined and clever and unusual”.[13] A hundred years later, social media provides a performative platform, where supposed sufferers can demonstrate their symptoms to a credulous audience, and compare doses of psychiatric medication. Debate ‘over who is worst’ is just as keen as competition for the largest number of likes and shares. Social contagion is rife, as evidenced by the spread through schools of the ‘Tik Tok Tic’. It was found to be a “mass sociogenic illness, which involves behaviors, emotions or conditions spreading spontaneously through a group”[14] by researchers from the Department of Neurological Science, at Rush University Medical Center in Chicago, USA.
Follow the Money
It is not surprising that even without a basis in science, the diagnosis and treatment of disorders has become a profitable industry. With huge pressures on the NHS, many parents turn to the plethora of private providers who have sprung up to meet demand. Schools are eligible for increased funding, the greater the needs of their pupils, and parents can become eligible for additional benefits. Personal Independence Payments (PIPs) can be claimed for children, which are not means tested and do not have to be spent specifically on care. Anything from autism to anorexia can be eligible. Most recent figures, from July 2024, show that almost 40% of PIP claims now relate to “psychiatric conditions”.[15]
‘Suffering from Childhood’
You may notice that I have not mentioned the current mot du jour - neurodiversity. This is because we are all, in fact, neurodiverse. We have simply become increasingly unable to accept it, or manage it. Some years ago, in an article for The Guardian, Jay Watts wrote “that difference becomes disability at the point that society tries to squeeze people into one-size-fits-all boxes”[16]. We are now in that box, and too many children have become ping-pong balls, bouncing off the sides, desperate for escape. Others have built a personality on a vulnerability. Neither is good or healthy. We need to go back to basics and remember Sir Ken Robinson’s wise advice, that “children are not, for the most part, suffering from a psychological condition. They’re suffering from childhood”. We need to respect that and give them the most enriching childhood that we can.
“Most mental health difficulties are not about broken brains but broken hearts”.
From Drop the Disorder, 2019, PCCS Books.
[1] The Daily Telegraph, (11 October 2024),Theme park disability priority passes sell out after surge in ADHD diagnoses, Madeleine Ross.
[2] ADHD UK, https://adhduk.co.uk/access-to-work
[3] Department for Education, Early Years Foundation Stage Profile - 2024 Handbook, (October 2023).
[4] NHS England, National Mental Health Intelligence Report: Estimating the proportion of 0-4 year olds in England that have a mental health need, (16 October 2024).
[5] Harvard Center on the Developing Child
[6] TED Talks Education, How to escape education’s death valley, (2013), Sir Ken Robinson.
[7] Therapy Today, Crap Life Disorder, (March 2018), Michelle Higgins, BACP.
[8] Gov.uk, Special Educational Needs in England - Academic Year 2023-24, (20 June 2024).
[9] Insane Medicine, (2020), Sami Timimi.
[10] Understanding ADHD: Current Research and Practice, (2020), King’s College London (via Future Learn).
[11] Insane Medicine, (2020), Sami Timimi.
[12] Sunshine Support UK, (21 September 2024), Instagram.
[13] The Magic Mountain, (1924), Thomas Mann.
[14] TikTok Tics: A Pandemic Within a Pandemic, Movement Disorders Clinical Practice, Vol 8, Issue 8, Nov 2021.
[15] Gov.uk, Personal Independence Payments: Official Statistics to July 2024, (17 September 2024).
https://www.gov.uk/government/statistics/personal-independence-payment-statistics-to-july-2024/personal-independence-payment-official-statistics-to-july-2024
[16] The Guardian, Mental health labels can save lives - but they can also destroy them, (24 April 2016), Jay Watts.
Lucy Beney, Save Mental Health’s Correspondent on Child Mental Health.
Lucy, of Thoughtful Therapists is an Integrative Counsellor working in private practice and also a facilitator for the Tuning into Teens parenting programme.
Message/Comment:
Dear Lucy, I am an educational and neuropsychologist and I would like to add something so basic to your article that, in fact, is in plain sight: The literacy and numeracy skills, including the essential ability to write down thoughts effectively, of children. A significant number of children arrive in secondary school without the functional literacy and numeracy skills to access the curriculum – just imagine what this does to their mental health over 5 years adolescence in their most traumatic period of development towards adulthood!
Author’s Response:
Thank you for raising this very significant point. Although I alluded to it obliquely, I am sorry that I didn’t address it more fully in the original article.
The latest figures show that only 61% of children leaving primary school last summer had reached the expected standard in reading, writing and maths.[1] This means that over one third of children are likely to struggle to access all or part of the secondary curriculum. The Reading Agency charity goes a step further, declaring that 18% of children “do not have a minimum level of literacy proficiency” and confirms that “many of these children will struggle to keep up at secondary school”.[2] Unlike some other countries, where a certain standard in the basics must be achieved in order to progress to high school, there is no bar in the UK to continuing within the ‘sausage machine’, even when there is little educational benefit in doing so.
The Reading Agency reckons that students will suffer if they do not develop sufficient reading skills by the middle of primary school. However, instead of addressing this quite obvious failing, most of these children will – if they are lucky – get some additional support from teaching assistants and other staff members once at secondary school, or they will be erroneously assigned to ‘nurture groups’, designed to address the social and emotional needs which it is believed may be hampering their progress. As far as I am aware, no concerted and consistent effort is made directly to address standards literacy and numeracy, which in some places are worse than they were a century ago.
This situation then causes two distinct problems, both of which can be – albeit imperfectly – illustrated with the following example. Recently, I attended a church service conducted entirely in German, a language of which I have only the most basic grasp. Throughout, I had a vague idea of what was going on. I was aware that I picked up certain words and phrases, but not in any meaningful or coherent way. During the rather lengthy sermon, my mind and focus wandered to other things. I might have been tempted to sneak out of the back, had I not been on best behaviour.
First, if children lack the tools to access the curriculum, they are likely to become bored easily, to switch off and eventually cause trouble, which of course may mask a fundamental anxiety related to not ‘fitting in’. In the current climate, all these responses could in due course elicit a ‘diagnosis’.
Secondly, as is referenced above, the effect on self-worth and self-belief can be devastating. Imagine how I would have felt, to have been quizzed on the sermon in church, and unable to answer a single question or to express my thoughts about it on paper had I been asked to do so, especially when others could respond in full? Intelligence alone is insufficient – we need the right tools to complete any given task. We know that competence breeds confidence, and yet these children lack the basic building blocks to succeed. Many will also feel a degree of shame about their situation, further undermining their emotional wellbeing.
Literacy and numeracy figures relating to children with a diagnosed Special Educational Need (SEN) are quite shocking. In 2024, only 21% of pupils with a SEN reached the expected standard at the end of Year 6, and only 9% of those with an Education, Health and Care Plan (EHCP). It is tempting to ask which came first, the diagnosis and subsequent low expectations of achievement, or low levels of achievement because of illiteracy and innumeracy, which then led to a diagnosis? Either way, we are failing these children on a huge scale.
Finally, just as younger children within their year group are more likely to receive diagnosis of SEN, so the number of children achieving the expected standard in literacy and numeracy gradually decreases by birth month from September through to August, in the academic year. Is this correlation or causation? Or are we forgetting that, within any given year group, children’s ages can span almost a year and developmentally, they will be at different stages? Interestingly, having a language other than English as a mother tongue has no negative impact on literacy and numeracy levels. A greater percentage of these pupils achieved expected standards, than did those whose native language is English.
Thank you again for raising this issue. It is well worth further investigation.
Lucy Beney
[1] Gov.uk, Key Stage 2 Attainment: Academic Year 2023-24, 10 September 2024.
[2] The Reading Agency, www.readingagency.org.uk