Straight to the point

Josh’s mum finds it hard to understand him. At school, her son is puppyish, friendly: a 12-year-old who still has the excitability of a primary school child rather than the jadedness of other Year Eights. But at home, his mum explains, it can be a different story. He has no sense of consequences, no situational judgement — and if he gets frustrated, he will sometimes lash out physically. He once wrestled his little brother into the pond. When chastised, he didn’t seem to understand why it was such a big deal.

That same little brother, who has just turned seven, is already catching up with Josh in English and Maths. And unlike Josh, he’s able to regulate his emotions and follow instructions. Their mum fears that Josh may never get there. She knows he needs specialist support, and she knows, at least in theory, how to get it.

His school’s Special Educational Needs and Disability Coordinator — or SENDCo — referred Josh to the NHS’s Child and Adolescent Mental Health Services (CAMHS) for an autism spectrum assessment. CAMHS rejected the referral. The SENDCo then put in a referral for an ADHD assessment. Both times, Josh’s mum did the parenting courses that you have to do to indicate that a child’s home environment isn’t the problem. Having two other children who were doing well both socially and at school wasn’t enough evidence that she’s a competent parent. She kept a three-month diary of Josh’s behaviour, and made notes about the ways in which she and her husband tried to support him. But it was all for nothing: CAMHS rejected the second referral as well.

It can sometimes seem as though CAMHS’s primary job is saying no. Josh’s story is far from unusual. Working as part of an NHS early intervention team, I met the family of another boy, of a similar age, who keeps getting excluded at school because he can’t sit still and stay focused in lessons — but who excels on every sports pitch and behaves well at home, where he can move around and go outside whenever he needs to. That boy got rejected from CAMHS five times.

The team I work in can’t diagnose ADHD or autism. Neither can the SENDCos in schools, even though they’re often experienced and knowledgeable. Diagnoses can only come from a clinical psychologist, a psychiatrist or a highly trained specialist nurse. For most families, this means going to either CAMHS or whatever’s left of their local authority’s educational psychology team. In our small county, that team amounts to one employee. The waiting time for an assessment is between one and two years, which colleagues in neighbouring areas say isn’t too bad.

But to get onto the waiting list, you have to be accepted first. One way for CAMHS to keep waiting times down is to just say no to most referrals. Getting a child the support they need from the NHS is an arduous, exhausting process for schools as well as families — and, of course, for the children, who know that there is something different about them that keeps on causing problems, but can’t be offered any solutions without a diagnosis. SENDCos face rejection after rejection if they request either CAMHS involvement or funding for Education Health Care Plans (EHCPs), which pay for the resources and support some children need to cope with mainstream education.

If, however, parents can afford a private assessment, a booming industry of psychiatrists and educational psychologists is on hand to provide their child with a diagnosis within a week or two. It’s a frictionless, even pleasant experience: you go online, book an appointment and chat to a friendly, highly credentialed specialist. I know this because I’ve done it myself: a few years ago, I had some problems at work, and an ADHD diagnosis helped make sense of them. While Josh’s mum has to justify herself to an institution that holds all the power — an institution that can demand she take courses multiple times and jot down observations for months, all in the hope that her child will be accepted for an initial conversation — paying clients can expect a service that works for them.

This affects far more than the speed of the diagnosis. And here, the thesis of the psychiatrist Thomas Szasz might give us pause. Szasz was critical of the very idea of mental illness, observing that medicalising problems in living puts the patient at the mercy of a controlling healthcare system. We could see learning difficulties similarly, as problems in living that have somehow become the remit of the medical establishment. The primarily social difficulty of being wired in a way that makes getting on in the world harder — which can be alleviated by the primarily social interventions of extra attention and time — has been assigned to ever-stretching mental health services.

Szasz analysed the power play in various models of doctor-patient relationships: in some, the doctor had absolute authority, like a parent over an infant; at best, the relationship was balanced and collaborative, cultivating the patient’s autonomy and avoiding abuses of power. Services such as CAMHS should, in theory, take this latter, patient-centred approach, but in practice they rarely do. In systems such as the NHS, healthcare is rationed, and the implication is that you’re supposed to be grateful for whatever you can get. Some individual clinicians may be excellent, but when the system is creaking and everyone seems to resent you for it, it’s hard not to get sucked into hiding behind the defences of a power imbalance stacked in your favour. The patient needs you more than you need them.

So, money doesn’t just get you access to healthcare — it also changes your relationship with it. If you’re paying, you get to ask questions, rather than obediently tick the boxes required of you. Instead of feeling beholden to a larger and more powerful system, grateful for whatever it is prepared to give you, you can think about what you want from it.

And if you get that SEND diagnosis, it can alter your power relationship with other institutions too, because it means they have a legal duty to accommodate you, to help smooth over those problems in living. Last year, a spike in demand for ADHD referrals in Cambridge resulted in GPs being provided with template letters requesting extra time in exams.

Of course, it’s natural to be hypersensitive to dips in concentration while revising for finals. But with a quarter of UK students now claiming extra time on the basis of additional need, we have to ask whether it’s time to reassess the concept of special educational needs. Originally, it was about people like Josh, who struggle with basic education. Now, the UK’s cleverest students are seeking the same diagnosis as him.

The middle-class, mid-life ADHD revelation has become a bit of a media cliché, but it’s indicative of a broader pattern. The middle-classes account for an ever-larger proportion of SEND diagnoses, partly because we can afford to pay for them. And yet, the need for SEND services is greater in more deprived areas, not least because caring for a high-need child exerts a financial strain. Despite this, a recent LSE study suggests that wealthy areas enjoy far more SEND provision than poorer areas.

The differences are dramatic: in the richest decile of areas, 15% of children have a formal diagnosis of Specific Learning Difficulties, or SPLD (an umbrella term for learning difficulties that can only be diagnosed by specialists, such as autism, ADHD, dyslexia and dyspraxia); in the poorest decile, only 6% do. Those diagnoses often lead to extra funding: in wealthy areas, 22% of children with SEND have an Education Health Care Plan, compared with 15% in deprived areas. And funding can change everything for the parents of children with special educational needs. It means a teaching assistant whose sole job is to guide your child through school, the knock-on effect being that they’re then easier to look after when they get home; it means that if caring for your child prevents you from holding down a full-time job, you can supplement your meagre income with a carer’s allowance.

But perhaps more fundamentally, there are plenty of children who, without EHCPs, simply cannot participate in the otherwise mostly inflexible education that takes place in mainstream schools — which tend to be the only option. Blair’s drive for inclusion in mainstream education led to most special schools being shut in the belief that keeping children with their peers was better for them and society, and could be achieved by making allowances for them in the mainstream system. Inclusion became a buzzword, a moral good in itself; sceptics noted that scrapping expensive specialist provision happened to save the state a lot of money — but put children with more significant disabilities in a more vulnerable position.

Contemporary ideas of inclusion tend to gloss over the unappealing bits of disabilities, preferring to describe them as “superpowers”. The focus is on dyslexic inventors and autistic activists. You can buy ADHD self-help books about how we, the special ones, are in-the-moment hunters enjoying heightened sensitivity in a world of boring, plodding farmers — upon whom we rely to create the conditions for us to wield our talents. Your disability doesn’t have to hold you back. The more neurodiversity the better. Or so the story goes.

It is a flattering story, if you’re privileged enough to be able to afford the support you need to prevent your neurodiversity disrupting your life — or if it didn’t disrupt it too badly in the first place. In other words, if your ADHD is more of a personality quirk than a disability. But ADHD, or autism, or whichever box he eventually gets put in, probably isn’t Josh’s superpower. He’s a lovely boy; right now, he’s also a liability. His mum can’t imagine him being capable of living independently without something terrible happening; she envisages caring for him for the rest of her life. There is grief in her vision of his future, and in her day-to-day experience of parenting a child who can scare his own siblings.

What does it mean to include Josh? Time, attention, and lots of structure provided by lots of different people. At the moment, he is getting none of that. As with most other parts of the NHS, mental health services are sleepwalking into an American-style two-tier system. Privately, some of us are able to afford neurodiversity labels, which are becoming a luxury. Meanwhile, the system is failing children like Josh.

But so is the prevailing narrative about disability, which is dominated by the voices of those who have managed to integrate into mainstream society. Platitudes about uniqueness aren’t enough: disabilities are called disabilities because they impair functioning, causing us problems. Overcoming those problems is hard, and often expensive, but more urgently it requires the problem to be recognised with an official diagnosis. If Josh is to get one, CAMHS will have to see him first.

 

Names have been changed.

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