The oversimplification of ADHD - and what we should do next

Gaia Scerif listens patiently to examples of the prevailing narratives about attention deficit hyperactivity disorder (ADHD): diagnosis is spiralling upwards out of control, the condition is a social construct not a medical reality, mobile phones have caused an epidemic of symptoms, influencers are peddling false information on diagnostic criteria and driving hysteria, schools are full of kids using ADHD as an excuse to flout the behaviour policy or get out of anything they find boring…

She sighs. As professor of developmental cognitive science at the University of Oxford with a specialism in attentional control, and an expert in how attentional difficulties impact learning, she has worked with young people with ADHD and studied the condition extensively. She’s heard all this before. And she finds it deeply problematic.

Below, she explains why.

Tes: The narrative is that ADHD diagnoses have rapidly increased. Is that a fair representation of the data?

Gaia Scerif: The answer to this is very complex. What you see in the data is that we have over-diagnosis, under-diagnosis and misdiagnosis - all of these things are happening within the population at the same time.

A recent government review made this complex picture of diagnosis very clear. If we look at population prevalence (an estimate of the occurrence of a condition within a population based on sampling studies), ADHD is actually pretty stable over time.

But there is then a really interesting contrast with the evidence from primary care, where diagnoses have gone up.

And then medication prescriptions have actually gone down (which could be down to availability or people seeking other interventions - or any number of other reasons).

So it’s not a clear picture of a demand surge, nor of under-diagnosis. And we know that within that there is a lot of nuance. For example, we know from research that we under-identify women with ADHD as the diagnosis process is very gendered. We also know that misdiagnosis does occur with ADHD because of overlapping symptoms with other conditions.

Do we know why that primary care medical data has gone up - have diagnostic criteria changed, for example?

The diagnostic criteria for ADHD in the Diagnostic and Statistical Manual of Mental Disorders (DSM) have not changed very much since 2013, so that is not behind it.

I know people like to say it is due to the pandemic or mobile phones and social media, too, but we have no clear evidence it is those things.

For example, the review I pointed to above suggests that this trend was increasing before the pandemic. In turn, this rules out the pandemic as causal.

With regards to phones and social media, the evidence of causality for ADHD specifically remains limited. Attention development, from the early years into adult life, is so complex. We should be wary of pinpointing a single cause (eg, phone use) to an increase in the proportion of children seeking an ADHD diagnosis in primary care.

We know awareness is higher about ADHD and stigma around it is reducing, so we will likely see more people coming forward to seek help, particularly if they struggle with unmet needs. Also people will be better at spotting it now in others and suggest seeking diagnosis.

But we actually don’t have enough data or research to make any definitive judgements on diagnostic increases and, as I said above, the narrative of a rise is more complex than what just the primary care statistics suggest.

How does diagnosis actually work for ADHD?

Because there is no diagnosis pathway based on a single biological marker, clinicians look for certain behaviours of inattention and hyperactivity to diagnose ADHD, similar to how autism and other neurodevelopmental conditions are diagnosed.

This is still a very rigorous process. The behaviours focused upon are based on clinicians working extremely hard over many years to identify diagnostic symptoms.

One of the key points in the DSM is that you must exhibit six or more symptoms of either inattention or hyperactivity or both, and not only just once but for a prolonged period of time (six months or more), and not only in one setting but in two settings (with validation in both, so a parent reporting home behaviours and a teacher reporting school behaviours, for example). It has to be independently verified, too.

And there must be some element of clinical impact on everyday functioning (“clinical impairment”), which is really quite hard (though feasible) for clinicians to eventually come to a consensus on.

Anyone who has been through this process will tell you it is not easy - it is extremely challenging and can be very slow.

It appears unlikely that someone will be able to accurately self-diagnose, then?

Self-identification is tricky, but it should not be ignored. It is the start of the journey to diagnosis to be able to identify where and when you are struggling. It may be that those same behaviours form the basis of an ADHD diagnosis, or the journey may end up in a different direction. But you should certainly not discard someone’s first-hand experience and everyday evidence of support needs.

How important is the consistency of symptoms over two settings?

It is a very important safeguard because it may be that you exhibit those behaviours in a single setting because you don’t get on with that environment, rather than it being a symptom of ADHD per se.

So, for example, if it is just in a school, certain behaviours may arise because of peer or teacher relationships or the pedagogy or numerous other factors.

But we need to be careful here, too. Some young people who may appear less severely affected by their difficulties in some environments may have worked out how to compensate for their difficulties, or found other ways to cope. In those cases, we need to understand how effective that adaptation is for the individual and the broader impact it has on them.

There is a lot of variability in how individuals experience ADHD, then, and their need for intervention?

Yes, we need to ensure that we understand variation between individuals: we need to recognise that two people with the same difficulties may have a completely different experience of the functional impact it has on their everyday life.

‘ADHD is a spectrum and we often don’t recognise that enough’

It may be that someone is diagnosed and they are able to say, “I have ADHD, but great news: my adapting strategies, the environment and social circumstance I am in mean I don’t actually need any additional support at the moment.”

However, for many others - due to the environment they are in or the level of their difficulties - that won’t be the case. They will need much more support.

ADHD is a spectrum and we often don’t recognise that enough.

So should we see ADHD as something more fluid than fixed, both between individuals and within an individual across different settings?

The diagnosis is not fluid - if you meet the clinical threshold then you most likely do have ADHD. But symptoms can evolve (for example, hyperactivity can reduce, whereas inattention can become more prevalent from childhood into adolescence) and the support that an individual requires can be fluid - across environments and over time.

An individual’s management of their “symptoms” could be driven by numerous factors: genetics, resilience, experience and so on. And their ability to manage difficulties can change. We need to be much more tuned in to that variability.

That variability leads some to suggest that those with ADHD make active choices about when to pay attention and when not to, but would you suggest that this is more down to the conditions of the environment at that time?

Of course, some children could choose not to pay attention. But with ADHD, the environment the child is in is critical to the management of their difficulties. And another key factor here is that the research does suggest that intrinsic and extrinsic motivation are key drivers of behavioural difficulties, but also of successes, in ADHD.

So if you look at the “Go, no-go” task used by psychologists to measure inhibitory control - a critical part of your executive function to maintain focus - then most (but not all) of those with ADHD perform very badly in it, as it is an extended, monotonous exercise.

Interestingly, though, you don’t see as many difficulties in that group if you increase incentives. So, for example, if you make the task more fun and engaging, the neural network engagement you observe is closer to the picture you would see of someone not experiencing challenges related to ADHD. And you see a similar effect when someone with ADHD is on medication.

A commonality here is dopamine. Medication and motivation both work on dopaminergic systems, and so for some with ADHD we can see that being really interested in something can lessen the need for additional supports to cope with their difficulties.

So if we get motivation right in a school, we can begin to lessen the need for intervention?

Not that alone, no: it’s part of a much broader set of factors that can lead to a reduced need for intervention.

For example, you may find an adult with ADHD who needs no extra support. When you look into why, you realise they have curated their environments to mitigate their difficulties. They have an understanding social group. They have a job that prioritises creativity and changing tasks. The areas that require extended focus are things the individual is deeply interested in, so their attentional control is boosted.

Not everyone can do that successfully. It’s actually very hard to curate your environments in that way.

It is particularly hard in a school because schools tend to largely be standardised experiences - you can’t opt out and find an option to suit your profile.

And from the school perspective, they deliver an offer for the majority, and with the time and resource constraints teachers are under, it’s difficult to go beyond that.

But even if they could, as we said earlier: ADHD is variable. How do you accurately work out an individual child’s profile, cater for that and change it as that profile evolves over time?

So, unfortunately, schools tend to be difficult environments for a lot of children with ADHD.

Within those constraints, is there anything more schools could be doing for pupils with ADHD, though?

What I strongly emphasise is that we should clearly still be looking at addressing the challenges that the environment causes where that is possible, but also we are missing a trick if at the same time we are not looking at the strengths of that child, too.

With ADHD, and with other special educational needs and disabilities, we tend to fixate on the barriers to learning rather than assessing the full profile of both challenges and strengths. What is this pupil really good at? What are they interested in? What are their goals? What are their strengths in character?

If we can tap into those areas then it enables the individual to help themselves adapt to the environment at the same time as the school is looking at ways to adapt, too.

For example, my son is dyslexic and he loves writing, so he worked really hard on his phonological awareness practice, but also his teacher understood his love of creative writing. So, without letting go of phonological awareness practice, she gave him free rein to write without obsessing over the spelling. This meant writing did not become something he avoided. It enabled his strength in creativity, something he loved, to come out. And that benefited his literacy overall.

If we had focused on the barrier - poor phonological awareness - alone, he would have eventually decided writing was not for him and he would have experienced broader difficulties or even gone backwards in this skillset. By looking at his strength as well, the teacher was able to keep his motivation high and keep him engaged.

So if we pay attention only to the challenges then the strengths and the routes into adaptation that we might be able to make will likely get lost.

How far should those adaptations realistically go - bespoke curricula aligned to interests?

No, this is not about changing content but looking at how we can ensure that content is delivered in a way that makes it as accessible as possible.

The more we can make this about systematic changes - rather than individual changes at a teacher level - the better. This ensures it does not become a mission to fix the child or parents, or SLT telling teachers off for not doing the “right” thing.

For example, have senior management really looked at ways they can adapt by looking at engagement metrics for pupils rather than - or alongside - attainment milestones? If we can measure how far pupils are on task and motivated, rather than whether they hit a certain grade, the teacher can look at solutions similar to that teacher enabling my son to write creatively and not worry about the spelling. Teachers need that licence to adapt to what they see in front of them.

Or what about grouping children for certain tasks in certain ways? I don’t mean setting, I mean putting children together in a way that enables peer support and different approaches to a task.

I observed a pupil with ADHD who in Year 6 was allowed to use manipulatives still to do mathematics, and she was doing incredibly complex fractions with them. She was grouped with similar children who benefited from that approach.

The teacher had really thought hard about the different profiles in the room and had grouped accordingly, not by attainment but by the modality of learning. The culture of that school enabled her to do that.

Do you think there is enough capacity - in terms of time, in teacher training, in knowledge of individual SEND - for that approach to scale?

Inclusion of that kind is not easy for every pupil. It’s a really difficult challenge, and maintaining it throughout an individual’s progression through school is also very hard.

But it should be something we should be striving towards. We should be aiming to not remove content or opportunities from children, and instead look at changing the environment in ways that are proportionate and possible.

It requires realism: you cannot adapt everything for every individual. But it is possible that small changes can make a big difference. It also requires partnerships, rather than adversarial relationships: between teachers and between teachers and parents.

On your point about knowledge, though, that is an important question. In mainstream, teachers tend to be content delivery specialists. We cannot ask them to be SEND specialists, too. That’s asking too much. But SLTs should allow their staff the time and interest for SEND training and CPD. 

At the same time, in the SEND sector teachers tend to be SEND specialists rather than content delivery specialists. They know how to adapt environments to maximise pupil opportunity. They are incredibly knowledgeable and skilful in supporting pupils with SEND.

So we could work to ensure that those SEND specialists can inform and assist the decision-making of the content delivery specialists. How can they work together to work out adaptations that are proportionate, effective and possible?

Would part of that discussion be a behaviour conversation? When you talk to mainstream teachers, they find some behaviours exhibited by children with ADHD challenging, and those behaviours likely contravene the behaviour policy

It’s the same principle: special-school staff are experts in supporting pupils with behaviours of the type you are referring to. They are experts in understanding why behaviours that challenge emerge, and in how to foster independence despite them. So what advice can they offer to mainstream schools and what adaptations do those teachers and leaders in mainstream feel able to make as a result?

Important within that is that we may not change the basic outline of the behaviour policy of the school radically, but to look at ways that enable a pupil to meet it, based on an accurate profile of their strengths and challenges. It’s not about looking at what they can’t do, or can’t manage, in isolation. Which can be the temptation. In some cases, however, behaviours that challenge by kids with ADHD can be “the canary in the coal mine”: a behaviour policy that is too authoritarian may not fit them at all.

It seems what you are asking for is a more collaborative and less diagnosis-led view of SEND, with a particular focus here on ADHD? Are you hopeful that is possible to achieve?

Diagnosis is, of course, important, but it should only be part of the story. I hope I have shown why a focus on diagnosis alone is a highly reductive conversation - it does not address children’s and young people’s needs. Paradoxically, these unmet needs are a very likely driver of an increase in children and parents seeking diagnosis - as a route to help.

In a school context, what I am asking for is what I think every teacher already wants: for every pupil to feel engaged in the classroom, to have the opportunity to learn the same content as their peers, and to feel they belong.

We can’t do that by obsessing over diagnosis alone. We need to see the whole child, support teachers to get the specialist help they need to be able to understand needs, challenges and strengths accurately, and adapt where we can. And we need to be realistic with our expectations and supportive of teachers to achieve that.

Jon Severs is the editor of Tes