An independent review commissioned in the UK to address escalating demand for ADHD and autism diagnosis and treatment has missed an important opportunity to correct misleading notions about the meaning of psychiatric diagnosis and the nature and effectiveness of stimulant treatment.
The Independent Review into Prevalence and Support for Mental Health Conditions, ADHD and Autism, led by Peter Fonagy, was published in mid-October.
It was commissioned to look at the causes of the rising demand for assessments for ADHD and autism, sometimes referred to as neurodiversity, and to help people get the “right support”. The truth is, the UK’s National Health Service is buckling under the weight of this demand. Many adult mental health teams have had to stop accepting these referrals in order to continue to function. This means people are redirected to private providers at public expense. The report highlights how the NHS is overspending on these assessments by £164 million per year and the Centre for Health and the Public Interest describes the costs of this provision as “accelerating at an almost exponential rate”.
There are some good points in the Independent Review. It raises fundamental questions about the nature and purpose of diagnosis in mental health and it makes some sensible suggestions about how help and support can be organised around people’s needs without the need for diagnosis.
The executive summary recommends: “There should be a fundamental shift from a ‘diagnosis-dependent’ system to a ‘needs-led plus diagnosis’ system.” And later: “The problem is a system that leans too heavily on diagnosis as the route to help and cannot keep pace”.
The review also highlights how the private sector is cashing in on the public demand for diagnosis at the cost of millions of pounds of public money with no real oversight or accountability. And it stresses that mental health problems are influenced by social and economic conditions and that tackling these and particularly addressing the barriers to participation in school, work and community are key to improving mental health.
However, the Review is also riddled with contradictions and confusion and nothing it suggests is likely to make any difference to the current situation. Ironically, given that rising pressure on the NHS budget was one of the drivers of the Review, if its recommendations are implemented, which is doubtful, they will cost the taxpayer more, not less. It’s difficult not to conclude that the Review was really an exercise in being seen to do something, rather than an effort to bring about significant change.
One of the main problems is that the Review accepts the definition of autism and ADHD as “neurodevelopmental conditions”. It defines these as conditions that are “strongly genetically influenced and present from early life” in the Executive Summary, and elsewhere as “differences in how the brain and nervous system develop that are present from early life, although not always apparent immediately and shape enduring patterns of cognition, attention, communication, behaviour and learning”.
However, as James Barnes has pointed out, the Review simultaneously endorses two contradictory conceptions of diagnosis. Alongside the idea that diagnosis identifies a neurological condition, it acknowledges that “diagnosis is based on categories of symptoms rather than established biological mechanisms” and on judgements about their “severity, persistence and impact on functioning”. Therefore, the diagnosis does not represent a neurodevelopmental disorder. Calling it one simply assumes that symptoms or difficulties that reach a certain threshold must represent a neurological dysfunction or difference.
This assumption is not supported by evidence. Brain imaging studies show that people with an ADHD diagnosis are more likely to show slightly reduced volume in some small areas but there is little consistency between studies in which areas are identified and none have adequately controlled for important confounders such as IQ, birth trauma and socio-economic status that are known to be associated with brain volume and having an ADHD diagnosis. The large ENIGMA study, for example, found minuscule differences in some areas of the basal ganglia which have not been confirmed in subsequent research. The lead investigator, who at the time of publication hailed the findings as showing that “ADHD is a disorder of the brain”, later admitted that “Back then, we emphasized the differences that we found (although small), but you can also conclude that the subcortical and cortical volumes of people with A.D.H.D. and those without A.D.H.D. are almost identical”.
There is even less consistency in autism research.
Functional imaging also shows weak and inconsistent findings and, in any case, functional imaging can’t identify causes of a condition since it only reflects how the brain is functioning in the moment it is performed.
Authors of a 2022 review of imaging research in ADHD concluded that “Consensus is lacking regarding altered anatomic or functional imaging findings of the brain in children with ADHD, likely because of the heterogeneity of the disorder,” and that “no definitive structural or functional pattern defines the disorder from a neuroradiologic perspective”.
Genetic studies identify several genes that slightly increase the risk of being diagnosed with ADHD later in life, but there is considerable overlap with genes associated with other mental disorders, including depression, insomnia and obesity, smoking and IQ and the genes identified are not related to any suggested biological mechanism of ADHD. Moreover, almost any behavioural trait you can think of has been shown to have some genetic associations when these have been explored, including religious observance and going to the pub!
No other body of research has provided consistent findings of differences between people with ADHD and autism and those without, including research on brain chemicals such as dopamine.
Therefore, although a subgroup of people diagnosed with autism who have significant intellectual disability might be thought of as having a neurological condition, it is misleading to refer to ADHD and autism, in general, as neurodevelopmental conditions. This does not reflect the evidence base.
The diagnosis of autism and ADHD are based on the same circular logic as other psychiatric diagnoses. We decide that a certain set of problems should be called X. If you experience these problems, we say you “have X”. X is then regarded as an explanation for your problems, in the same way that having lung cancer would be an explanation for having a cough. But X is not an explanation of this sort at all. It is just a name—more like saying “coughing disorder” is the reason for your cough.
As soon as a label is applied, you no longer know what problems the individual is actually struggling with. And the problems that are being incorporated under the neurodiversity umbrella are expanding all the time. They now include common experiences such as justice sensitivity and rejection sensitivity. In fact, the manifestations of neurodiversity are so varied that, as Stephen Shore suggests, “If you’ve met one person with autism, you’ve met one person with autism.” But if it is this diverse, the label has become empty.
Adding the criteria that there has to be significant impairment doesn’t change the situation. Impairment just becomes part of the circular logic. You get the diagnosis when you are impaired, and the diagnosis, in turn, means you are impaired. The diagnosis still fails to add any useful information.
Moreover, deciding how impairing or impactful something is highly subjective and this is why the diagnosis has become so elastic. Someone might argue that finding it difficult to concentrate in boring meetings is “impairment” and that this should qualify them for a diagnosis. They might think they struggle to concentrate more than other people do, but how can anyone know this, when most people would say they find it difficult? We might think that significant impairment is when someone is threatened with losing their job because they can’t concentrate, but a prospective patient might counter that although they are not performing badly in their job, they could be doing better. They might say they should be in line for a promotion but can’t get it because of their difficulties. Is this “impairment”?
So adding impairment into the diagnostic criteria does not make them any more objective or likely to identify an underlying brain mechanism. Diagnosis does not resolve the complex question of which needs deserve publicly-funded medical support and which don’t.
The Independent Review also recognises that diagnosis is not necessary for identifying someone’s problems and providing appropriate support. “Diagnosis and support needs are not the same” it says, and goes on, “people may require support without meeting diagnostic thresholds, while people with the same diagnosis may require very different kinds of help”.
It also devotes space to the important question of how to assess people’s needs in a fair and consistent manner, recognising that this is not a medical prerogative, but a process that is undertaken across health, social care and welfare services that could be better integrated.
Yet, the Review also repeatedly reinforces the validity and importance of diagnosis. The summary says: “For many people it [diagnosis] is clinically necessary, personally meaningful and essential to treatment. It can help explain and address difficulties that significantly impair a person’s functioning, participation and quality of life”.
The main report of the Review suggests “the Review does not propose changing the role of diagnosis in determining access to NHS treatments or other services that depend upon it” and stresses that “far from reducing the importance of diagnosis, the Review places greater emphasis on accurate assessment of co-occurrence and differential diagnosis, undertaken in accordance with NICE guidance and established classification systems”.
The Review calls for investment in “neighbourhood teams” or community services that can provide therapeutic support while people wait for a diagnostic assessment, and suggests that in some cases this will avoid the need for diagnosis, but other than this it doesn’t propose any fundamental changes to the current system.
It suggests that current waiting lists for ADHD and ASD assessments and services are scrutinised by senior clinicians to determine the “primary presenting concern” and to determine the “most relevant existing pathway”. It seems to anticipate the process will lead to people being removed from these waiting lists because it says “People must not just be removed from waiting lists without a proper assessment and need appropriate communication, discussion to ensure they receive a response as early as possible that responds to their needs and the right to a clearly defined and transparent appeals process”. But the reason there is a waiting list is that staff don’t have the time to do “a proper assessment”.
Most adults who seek an assessment want a diagnosis, and are unlikely to be deterred by being offered non-specific support. Many want to try stimulant treatment. There are various reasons why people might seek a diagnosis, but many are “searching for understanding and identity” and have been led to think, as the report reinforces in various places, that the diagnosis will explain their problems.
This is a complete misunderstanding and the Review had an opportunity to correct it. The Review could have explained that the diagnosis is not an explanation, but simply a way of describing or naming particular sorts of problems. It had the opportunity to inform people that there is no proof that autism (as the term is currently used) and ADHD are caused by different or dysfunctional brains and that they are not correctly thought of as “neurodevelopmental disorders”. This might have started to damp down the demand for the diagnosis and the expectations that are placed on it—expectations that are unlikely to be fulfilled by any interventions the diagnosis can unlock.
The Review says almost nothing about stimulant treatment for ADHD, for example, even though this is a major incentive for people coming to services and underpins the perceived need for diagnosis. It is commonly believed that stimulants treat ADHD symptoms by targeting an underlying biological mechanism, but this has not been demonstrated. It is contradicted by the fact that stimulants improve concentration and attention in people with and without ADHD diagnoses and in animals as a consequence of their well-recognised effect of increasing wakefulness and alertness.
So stimulant treatment need not depend on having a diagnosis. It could simply be prescribed to people who are having extreme difficulties with concentration and attention. The important question is are stimulant effects really useful and if so, do these useful effects outweigh their disadvantages and health hazards?
Randomised controlled trials find that people taking a stimulant have fewer symptoms of ADHD compared to people taking a placebo, but these trials have significant limitations which make their results unreliable. The main one is that stimulants make people feel more confident, so they think they are performing better than they actually are. Yet the trials typically don’t rate people’s performance in objective ways—they just use rating scales that ask people if they think their concentration or distractibility has improved. Stimulants help people to spend more time on a particular task, but have not been convincingly shown to improve learning, exam performance or academic achievement, work productivity, driving ability or any other area.
Stimulants are not sugar pills. They are powerful drugs that significantly alter one’s physical and mental state. Long-term use is associated with an increased risk of cardiovascular effects such as stroke and heart failure, and neurological effects, including tics and an increased risk of Parkinson’s-like neurological disease. They can cause irritability, anxiety, mood swings, emotional numbness, social withdrawal, obsessional behaviour and can lead to psychosis.
For most people, the slim and unproven chance of getting any objective benefit from taking stimulants will not outweigh the risks to their physical and mental health.
I know the Review did not have the remit to question treatment guidelines, but this needs to be done to address the current situation. People will not be discouraged from seeking a diagnosis as long as it is linked to a treatment that is presented as effective and specific. We need to curtail stimulant use because this latest prescription drug epidemic will result in an increase in the prevalence of major medical conditions including cardiovascular disorders and Parkinson’s disease in the not-too-distant future.
The recommendation to allocate support based on needs rather than diagnosis could have been radical. As the Review points out, mental health services do partially operate in this way, but they do so within a medical framework that suggests that people “have” medical conditions that need medical treatments. This sets expectations and mandates following drug-focused treatment protocols. The Review could have helped changed this framework by following through on its insight that diagnosis does not align with need.
If it had done this, we might have been able to start a conversation about how to provide help to people who are struggling with aspects of life without having to label them as sick and without giving them the misleading and potentially life-limiting message that the problems are in their brain.
