Changing the narrative round ADHD

I was critical of Max Pemberton in a previous post for what he said in one of his Daily Mail columns. But he has fronted what I think is quite a good and helpful Channel 4 programme ‘The great ADHD myth?’ (see last post). As he said in the programme, and in a Times article, Pemberton himself was diagnosed with ADHD in an online private assessment costing £1200 (the programme also talked a little about the profit motive in ADHD assessment and treatment - see eg. another previous post). He doesn’t accept the diagnosis as he feels it unnecessarily medicalises his personal traits. As he says, “Calling that [ie. ADHD] a disability, which is what I was told during my assessment, doesn’t describe me and it borrows a word that other people need.”

Changing the narrative round ADHD is not easy, when it is sold as a disorder of people with a different kind of brain, easily defined by subjective criteria of inattention and hyperactivity and impulsivity and predominately genetically caused. There is no evidence that there is a particular ADHD brain, ADHD is not easy to define as the diagnostic criteria used are so subjective, and genetics and environment interact and are not simply additive factors. We need to be far more cautious about medicating people with stimulant medication and understand better the extent to which any apparent effects of medication may be due to placebo.

The great ADHD myth?

‘The great ADHD myth?’ will screen on channel 4 next Tuesday 18th August. This is despite a threat from ADHD UK (see mention in previous post) to report the programme to Ofcom if the programme repeats what it sees as the failures in its promotional announcement (see correspondence). The Global ADHD Advocacy Network also issued a similar response to the announcement.

The concern is that to imply ADHD may be a myth denies its reality. I don’t think anyone is saying that people cannot have problems with attention and being overactive and impulsive. Indeed, in a sense we all can do so at times (see previous post). The complainants do not want to recognise that ADHD is a social construct, but if ADHD has any meaning, it may be as an abstract rather than concrete concept. There is no clear evidence of brain dysfunction. What the complainants are objecting to is the challenge to their identity which has been created through taking on the label of ADHD. In this sense it must be a social construct, at least to some extent, because the social fact of ADHD diagnosis changes the way some people understand themselves. In fact, this is what a lot of people value about the diagnosis, because it seems to provide an explanation for what they have seen as deficiencies in their personality. An ADHD community has been created and feels it is under attack from the Channel 4 programme.

The complainants make much of the World Federation of ADHD international consensus statement (see article). I was an endorser of a critique of a previous so-called international consensus statement (see article). The literature is biased and it is reasonable for a television programme to try to correct that bias, including about the evidence for stimulant medication (see previous post). Splitting off of an unwanted part of oneself by blaming personal difficulties on an hypothesised neurodevelopmental ADHD concept, however real it may be believed to be the case, may not necessarily be the best way to understand such difficulties. Of course genes set the limits to our development but environments determine the actualities (see recent post). My concern is that people are being misled by advocates such as ADHD UK and the Global ADHD Advocacy Network about the nature of ADHD.

Loss of meaning by making the definition of autism too broad

As described by The Times (see report), Uta Frith has an article in Psychological Medicine entitled ‘Autism spectrum disorder: Has it lost its meaning and is it leading to misdiagnosis?’. Frith was also interviewed on the initial episode of the podcast called ‘Let’s talk neurosense: The psychology of neurodiversity’.

As Frith says, the criteria for diagnosis of autism have widened (see previous post on ‘The origins of concept of autism’) and there is no agreement it is a biological entity. She lists some drivers of change for increasing diagnosis, including: the desire to have a more inclusive, broader concept, such as autistic spectrum disorder; diagnosis creating a class of people which in a sense did not exist before because having the diagnosis changes their understanding of themselves, which Ian Hacking called a ‘looping effect’; spread of knowledge of the condition by social contagion, including with the increasing use of online communication; uncritical deference to the perspective of some of those with lived experience; people wanting the diagnosis to explain aspects of their personality; acceptance that the condition has been masked in females; and, negative aspects of human experience being unnecessarily pathologised. 

The concept of neurodiversity is fundamentally about recognising personal differences and the need for society to adapt to those differences (see eg. previous post). A medical diagnosis may liberate people from self-blame but wrongly blaming the brain may impair proper understanding of the reasons for personal differences (see eg. another previous post).

Frith particularly highlights the difference between those diagnosed with autism as young children and those diagnosed later in adolescence and adulthood. Originally autism had to be diagnosed in children before the age of 30 months. As Frith says, “the clinical meaning of ASD [autistic spectrum disorder] has been diluted”.  I suspect what this means when the review set up by the government into mental health conditions, autism and ADHD (see previous post) produces its final report is that the diagnoses of autism and ADHD alone will be insufficient for a successful benefit claim. 

Neurodivergent diagnoses, such as autism and ADHD, are not the only psychiatric diagnoses in which there has been expansion of the concept, potentially making the diagnosis meaningless. For example, bipolar disorder has been expanded to come to mean essentially mood instability, which is very common (see eg. previous post). Even further back, the use of the term schizophrenia, particularly in USA, became too broad, so that the definition was narrowed by DSM-III (see eg. my article).

Frith was influential in shifting understanding of autism from psychogenic to neurodevelopmental theories. Her questioning of the loss of meaning of autism, with her focus on the need to provide support for those with severe impairments, may well be influential.