ADHD is real and saying otherwise is damaging

We shouldn’t need to keep spelling it out. Thinglass ADHD image via Shutterstock

The Observer recently ran an interview with US expert Bruce D Perry who claimed that children’s hyperactivity “is not a real disease”.

Perry, senior fellow of the Child Trauma Academy in Houston, Texas is visiting Britain to meet cabinet members Ian Duncan Smith and Jeremy Hunt, as well as to talk to the influential Early Intervention Foundation, chaired by Labour MP Graham Allen.

To his credit, Perry is a prominent advocate of the idea that the way we treat children has profound effects on the way their brains develop physically, and that this has far-reaching consequences for their lifetime mental health.

At Nottingham, we entirely agree. However, there are many things about the Observer’s interview with Perry that we find worrying, particularly given his potential input into UK policy.

Perry rightly says that Attention Deficit Hyperactivity Disorder (ADHD) describes a broad set of symptoms, and that many of us “at any given time would fit at least a couple” of the diagnostic criteria for ADHD.

But this entirely misses the point that for a clinical diagnosis of ADHD, symptoms of inattention, hyperactivity and impulsivity must be severe, persistent and impairing. These present challenges that are all too real.

The Guideline on ADHD from the National Institute for Health and Care Excellence carefully reviewed evidence from numerous clinical trials and concluded that while behavioural interventions should be offered first to milder cases, medication is the most effective treatment for severe ADHD. As the Observer rightly notes, prescription rates for ADHD drugs in the UK have risen sharply in recent years.

However, far from the rise being a scandal, it reflects a welcome trend towards greater access to care for children with ADHD. And prescription rates in the UK (in contrast to many parts of the US) remain well below the estimated prevalence of the condition.

Nonetheless there is legitimate cause for concern over long-term use of any drug during childhood. Perry raises two concerns.

Firstly, he is reported as claiming that the evidence suggests there are no long-term benefits of psychostimulants.

He may be referring to the rigorous multi-modal treatment study of ADHD, which looked at children’s response to four randomly allocated types of treatment. Short-term results from this study clearly showed that carefully titrated medication was more effective than state-of-the-art psychosocial treatment alone. But follow-up studies found that differences between the treatment groups diminished over time and that serious functional impairments often remained.

Importantly, however, the researchers concluded that children who had responded well to the study treatment, whichever it had been, had tended to do better in the long-term than those who had not, suggesting that effective treatment, whether by psychosocial or pharmacological means, has beneficial long-term effects.

Secondly, Perry reportedly argues that psychostimulant medications can raise reward thresholds – the amount of reward it takes to motivate a hyperactive child. But substantial evidence indicates that raised reward thresholds are typical of untreated ADHD, a dysfunction attributable to an underlying deficit in the dopamine system.

Studies also show that methylphenidate, which increases the amount of dopamine at brain synapses, actually lowers those thresholds, helping children to engage and concentrate on less stimulating activities such as school work as compared to computer games.

Perry is rightly cautious about medication. Of course we should not medicate children unnecessarily, and if we can find interventions that are “equally effective” and don’t involve drugs, then that would be preferable.

But research does not show that other interventions are “equally effective”. A recent study showed that even what evidence there was for the effectiveness of non-medication interventions for ADHD largely disappeared when the children’s behaviour was rated by observers who did not know whether the child had received the intervention.

At the Centre for ADHD and Neurodevelopmental Disorders Across the Lifetime we are committed to researching cognitive and behavioural therapies of exactly the kind that Perry advocates, aimed at breaking the negative cycle of disrupted regulation of thought and behaviour. But much more work needs to be done to make them effective.

We entirely agree with Graham Allen who says that: “if you can diminish adverse childhood experience, then we eliminate a lot of the causes of dysfunction.” We are delighted by his efforts to focus attention and government resources on “evidence-based programmes” that will help improve children’s mental health and reduce the “costly and damaging social problems” that can result from conditions such as ADHD.

Children with ADHD and their families deserve evidence-based understanding of the complex nature of the condition and its effective treatments. They do not need sensationalist and stigmatising headlines that suggest that the children in the UK being treated for ADHD, often effectively, do not have a “real” condition.

Cris Glazebrook, Georgina Jackson, Peter Liddle and Kapil Sayal also contributed advice on this article.