There was an interesting article in the Independent on Sunday (20/09/15) entitled “Thousands of children are being medicated for ADHD – when the condition may not even exist,”

The author, William Sutcliffe has just published a novel, “Concentr8” described by Sutcliffe as,

“Concentr8, a novel set in a seemingly fantastical London where a mayor has instituted a programme to push out a behaviour-modifying drug on increasing numbers of misbehaving children and teenagers. Non-fiction extracts open each chapter, slowly revealing this world to be far closer to reality than one would like to believe.”

Sutcliffe argues that the real life use of Ritalin to control the symptoms of ADHD has a lot in common with the themes of his book. I have yet to read Concentr8 but I am interested in what Sutcliffe has to say about ADHD.

HOW REAL IS ADHD?

He starts by questioning the validity of ADHD. The use of drugs to treat it has more than doubled in the last ten years. These drugs are a multi-billion pound industry. Yet there is no clinical proof that ADHD is a genuine illness. People diagnosed with ADHD do have real problems but there are no biological markers that can be used to diagnose ADHD. Sutcliffe’s source is a Sami Timimi, consultant child psychiatrist at Lincolnshire NHS Trust. According to Timimi he,

“is ‘not saying those who have the diagnosis don’t have any problem’, he is adamant that ‘there is no robust evidence to demonstrate that what we call ADHD correlates with any known biological or neurological abnormality’.

“Sami Timimi’s clinic in Lincolnshire advocates a group therapy approach that focuses on ‘relationship building’ rather than ‘behavioural control’, using some of the techniques of NHA (Nurtured Heart Approach) therapy, which involves teachers and parents in a process of developing strategies to transform negative behaviours into positive behaviours. Timimi hasn’t prescribed Ritalin to a single child for five years, and claims a 76 per cent ‘clinically significant improvement’ rate among those patients he discharges.”

Timimi argues that changing cultural attitudes to childhood has privileged narrow measures of ability like exam results and conformity at the expense of creativity. Schools are under pressure to deliver. They pass this pressure onto the children and children are rebelling. This is driving the upward trend in diagnosis of ADHD and the resultant use of drugs to manage behaviour in schools.

As well as medicalizing troubled behaviour Sutcliffe examines the notion that the ADHD bandwagon is expanding to take in normal childhood behaviour.

“Matthew Smith, senior lecturer in history at the University of Strathclyde, and author of Hyperactive: The Controversial History of ADHD, goes even further in his criticism of the medical orthodoxy. He believes the diagnostic threshold is now so low that it has led us to a place where we have pathologised naughtiness as a mental disorder requiring medication. ‘And not just naughtiness,’ he adds. ‘All sorts of children, simply those that daydream and don’t pay attention, could now be diagnosed with ADHD and placed on medication.’

“Timimi sees it specifically as a pathologisation of maleness (boys tend to find it harder to sit still in a confined classroom), while a report in Time magazine cited a psychologist describing the symptoms of ADHD as ‘everything that adults don’t like about children’.”

RESPONSE

I do not agree that only conditions with clear biological markers can be reliably diagnosed or even said to exist. Timimi, in his book, The Myth of Autism, proposes a similar argument to that cited by Sutcliffe in relation to ADHD; namely that autism is the medicalising of men’s and boys’ social and emotional competence. In the absence of any drug treatments for autism, Timimi raises the ogre of the Autism Industry as a substitute villain for Big Pharma in his autism narrative. I dealt with this in my review of his book, “The Myth of Autism.”

The lack of biological markers is common in many conditions. But clinicians continue to recognize and diagnose them based on behavioural manifestations. Timimi himself must have diagnostic criteria which he uses to identify suitable cases for his NHA therapy. Like ADHD autism has no biological markers. Like ADHD brain scans have found differences in brain development and function, but not consistently across populations. Like ADHD autism often runs in families but genetic studies have failed to isolate an “autism gene.” Autism and ADHD are both spectrum conditions in which a variety of genes have been identified. Autism and ADHD are often found together. Recent research suggests that if ADHD is diagnosed first an autism diagnosis is often delayed or missed altogether.

My son is autistic. He was diagnosed based on a clinical assessment of him and a developmental history taken from his parents by a trained clinician. Comparable assessments are in place for ADHD. As a teacher I regularly used to complete ratings scales for pupils suspected of having ADHD. Clinicians used these alongside parental interviews and direct observations of the pupil in order to make their decisions.

Timimi’s critique of the medicalization of behaviour is not without merit. People are driven to the edge by the pressures they face. Rather than deal with those pressures, the institutions of state, be they medical, judicial or political will medicalize, criminalize or demonize society’s victims rather than address their grievances. But we also have to address their grief. Children with ADHD are often in genuine distress. Their disorder has been validated by clinical research. We have to address their individual needs for care and treatment as well as addressing the political, social and economic background to their situation.

MEDICATION

If ADHD is a diagnosis that is open to question then we ought to be concerned that the treatment of choice is not Timimi’s group therapy. Instead, the treatment of choice is methylphenidate, usually prescribed under the brand names Ritalin and Concerta. Because it is an appetite suppressant it can have a negative impact on growth in children. It is related to amphetamines and there are concerns about dependency and the possibility that it might exacerbate suicidal tendencies and self-harm in subjects with additional psychiatric problems.

“Professor Tim Kendall, consultant psychiatrist and member of the group that developed NICE’s clinical guidelines on ADHD, has said: ‘If you take Ritalin for a year, it’s likely to reduce your growth by about three-quarters of an inch… I think there’s also increasing evidence that it precipitates self-harming behaviour in children, and we have absolutely no evidence that the use of Ritalin reduces the long-term problems associated with ADHD.’

“So why, if the evidence for the disorder is so shaky, and if the medication has significant drawbacks, with NICE explicitly not recommending drugs as a first-line treatment for school-age children, is Ritalin prescription on an ever-increasing curve? Scepticism towards ADHD as a phenomenon tends to be silenced with a simple retort: ‘Ritalin works.’

“And it does. A child who is inattentive, impulsive, and struggling at school, given Ritalin or another similar stimulant, will often demonstrate a marked improvement in behaviour and academic attainment within days.”

All drugs have side effects. Doctors have to exercise clinical judgement when deciding whether the benefits outweigh the drawbacks. Timimi acknowledges that the short term benefits are genuine but argues that long term use yields no better results than non-pharmaceutical interventions that do not have the same side effects. So why are prescriptions on the rise? The reason given in the article is the power of Big Pharma. The drug companies pay vast sums to market their products and hire experts, who sometimes conceal their conflict of interest, to attest to their safety and efficacy.

RESPONSE

I hold no brief for Big Pharma. But unless governments are prepared to take on the cost of medical research and development and fund our public research institutions accordingly the drug companies will continue to shoulder the commercial risk and seek to maximize returns on the successful drugs that do make it to market. And they will cross ethical lines when doing so. It is unfortunate that the two high profile beneficiaries of Pharma Gold quoted in the article earned their money promoting drugs for Bi-Polar disorder and not ADHD. I do not doubt that similar shenanigans will emerge in relation to Ritalin, Concerta etc. But it would have strengthened Sutcliffe’s argument if he had been able to cite specific examples rather than these two undeniably egregious but well known examples.

The NICE guidelines for treatment of ADHD are plain. No drug treatment for children under six. No drug treatment for mild to moderate cases of ADHD until after alternative treatment options have been tried. Regular clinical assessments and pauses in medication to see if drugs are still necessary. Where children are prescribed drug treatments they and their parents should also be offered psychological support. It is not unethical practice from the drug companies that is behind the breaches to the NICE guidelines. There is a crisis of funding in Child and Adolescent Mental Health Services (CAMHS) which means that the sort of treatments offered by Timimi, while recommended by NICE, are simply not available in many areas. We may debate the reasons why it is so hard to be a child in Britain today but children are suffering and the services they need are being cut under the government’s austerity programme. Even at the outrageous prices charged by the drug companies, and cheaper, generic versions are available, medication often comes cheaper than employing mental health professionals. In these cash strapped times health authorities may feel they have no choice.

DLA

Overall Sutcliffe has offered a well-argued if sometimes provocative position. However he descends into sensationalism with this statement.

Children from poorer backgrounds are more likely to develop, says scientists Yet none of these doubts about the ADHD juggernaut come close to the greatest scandal of all. I was originally drawn to this topic as a novelist following a single conversation with a consultant child psychiatrist who related to me a professional worry of hers. She was concerned that some families might be pushing for a Ritalin prescription for their child not because of genuine medical worries, but because an ADHD diagnosis makes a family eligible for Disability Living Allowance.

RESPONSE

In thirty two years as a teacher in special education I can only recall one family that remotely resembles this picture. All their children did have special needs. The family decided to exploit their status to extract the maximum from the welfare state in a manner similar to those who exploit the anomalies in the tax system to minimize their tax burden.

As the parent of a son with Asperger Syndrome I can also testify to immense difficulty in claiming DLA, even with a bona fide diagnosis. You have to fill in a detailed questionnaire describing the impact that the condition has upon your lives. This has to be endorsed by a professional who fills in their own section of the form. The severity of the difficulties you face determines the size of the payment. If Ritalin is as good as is claimed in the article at mitigating the effects of ADHD, surely that would militate against eligibility for DLA because the condition was being managed with medication and did not make excessive demands on parents and carers? I am well aware that the plural of anecdote is not data. Sutcliffe provides a single anecdote for his argument. I see your anecdote and raise you one.

If poverty is indeed driving some parents to exploit their children in order to game the system I see that as an indictment of our present socio-economic system as much as it is an indictment of the parents. And it is true that poverty has long lasting effects on the mental development of children. Research has found that children growing up in poverty are more prone to mental disorders including ADHD. While internal disorders like anxiety and depression improve when a person’s life chances improve and they move out of their bad situation, get a decent job etc., externally directed disorders like ADHD persist even when life circumstances improve. Was the ADHD caused by poverty and became permanent or was it always there and poverty provided the trigger? I do not know. I do know that our son’s DLA kept us out of poverty when we eventually got it, four years after his diagnosis and helped him make a success of his adult life.

CONCLUSION

The voices of those with ADHD were noticeable by their absence from this article. This is a weakness. As with movements for autism rights and autism self-advocacy, ADDers embrace their diagnosis as a badge of identity while recognizing that it is a neurodevelopmental condition that requires greater public understanding and awareness. They are not the passive victims of an unequal struggle between brave maverick doctors and the weight of the medical and educational establishment. ADHD is now recognized as a condition that continues into adulthood. Celebrity ADDults are coming forward to demonstrate both the positives and the negatives of ADHD. Some of their voices would have added weight to Sutcliffe’s conclusion that,

“children should be reminded that ‘failing’ at school is not failing as a human being. Many of the most creative and successful people only find their path through life in adulthood. Being different is not an illness.”