adhd

Diagnosis vs difference

I read a recent editorial on LinkedIn about the way that the diagnostic criteria for neurodiversity require “impairment” in functioning for a person to reach the diagnostic threshold. It was an interesting topic for a paper, and raised a set of broader interlinked questions in my mind about whether diagnosis is a recognition of difference-from-the-norm in the way some people’s brain or body functions, or whether it is about recognising something that is harmful (like a disease), or whether it causes distress or impairment / difficulties in functioning (like a disability or mental health condition). In particular it is interesting to think about how neurodiversity fits into that framework, compared to mental health conditions or physical health conditions. It opens questions about the purpose of diagnosis and whether that is about recognition of difference and understanding ourselves, or for gatekeeping access to certain types of support. It also raises questions about terminology – whether we acknowledge that many patterns of need or difference fall on a spectrum, and what we call a disorder or condition.

As it stands, in the current diagnostic rules (DSM 5 or ICD 11) each diagnosis has a minimum set of symptoms described. For example, in the DSM for a diagnosis of autism the individual must have “persistent deficits in social communication and social interaction across multiple contexts” and two or more areas in which they show “restricted, repetitive patterns of behavior, interests, or activities”. These difficulties must have emerged early in development, and not be “better explained by intellectual disability or global developmental delay”. However, to be diagnosed, the person doesn’t just need to have the neurotype of autism or ADHD but to struggle significantly with work, life, mental health or relationships because of it. Symptoms must cause “clinically significant impairment in social, occupational, or other important areas of current functioning”.

On first glance it seems a pretty clear description that could be consistently applied, but the more I’ve thought about it the more problems I see. First of all, the impairment criteria mean that people could waver in and out of the diagnostic category according to how well they are doing in their lives at that point, how well their environment and network support their needs, or their developmental stage. For example, a person could be autistic as a child, but then find a lifestyle, job, community or other niche in which they are happy and successful, and therefore fall below the diagnostic threshold – until a change or stressful life event means that they become distressed, when they would be diagnosable once again. Or they could have very subtle challenges that would not meet the criteria in primary school, but increasingly struggle during secondary school and meet the criteria for diagnosis, but then escape the sensory overload and/or social demands of that setting and no longer meet the criteria again.

That doesn’t make much sense given that autism, ADHD and other forms of neurodiversity are currently conceptualised as lifelong, inate differences in how people process information and interact with the world, rather than conditions that come and go. Neurodiversity isn’t a disease that temporarily disrupts a person’s normal functioning and can be treated to return them to normal. Neurodiversity is normal for that person; it is intrinsic to the way they experience and interact with the world for the whole of their lifespan. A neurodiverse brain is set up with a much wider focus of attention, or more attention to detail, or more propensity for sensory overload than a neurotypical one. A person doesn’t stop being autistic or having ADHD or a learning disability even if they learn strategies to fit in better with other people’s expectations or cope better cope at school or in the workplace any more than a person who is colourblind stops being colourblind if someone provides glasses that increase the red-green contrast.

For that reason, neurodiversity doesn’t fit into the medical model of diagnosis in the same way as mental health problems that may come and go, where a diagnosis may be helpful during the period when a person is experiencing depression or anxiety or psychosis, but may cease to be relevant at a later point – as for many people the symptoms will entirely resolve (spontaneously or with treatment) and no longer impact them. In the case of a mental health condition it wouldn’t be relevant to continue to use the diagnostic label after their symptoms resolve, as the individual may return to population-normative ways of experiencing the world. If we retained the diagnosis it would lose all meaning, as about half the population would end up with it, but most of those would have no symptoms that differentiate them from those without the diagnosis.

I also wondered how the idea of impairment fits with masking. In some cases a diagnosis could be withheld from a person who subjectively feels like they are struggling enormously if they were able to mask their difficulties enough for them to not impair their ability to function in their workplace or relationships during the assessment period. Or could it be considered a signficant impairment that it is exhausting to mask difficulties? Or that the effort of masking or coping with sensory overload all day at school or work means the person then struggles to function at home, withdrawing or becoming dysregulated in a way that might on first inspection suggest the difficulty is located within the home.

However, despite all the reservations I have raised, it is possible to think about diagnosis as only being meaningful when it applies to functioning, and a label for a degree of symptoms that is outside of the normative range. Many conditions are not binary variables that are either present or absent. Illness is quite often a matter of degree rather than the presence or absence of a condition. For example, a person’s glucose metabolism can indicate that they are becoming insulin resistant, but it is only above a certain threshold that the diagnostic label of diabetes would be applied, and certain treatments would be considered. Likewise our blood pressure or weight can be in the healthy range, or below or above that, but a diagnosis is only given if it is sufficiently high to cause significant health risks. There are numerous variables where we can be tested to see whether we fall into the typical range, or whether further investigation or treatment would be benficial – from our levels of white and red blood cells, iron, vitamin D, cholesterol, hormones, to the functioning of our liver and kidneys, markers of inflammation, infection or tumours. The threshold at which doctors diagnose conditions is typically the point at which symptoms start interfering with functioning and/or the pattern identified is known to cause harm, risk or distress to the individual.

Sometimes medics have to determine appropriate treatment without a diagnostic test being available, or where there is not a direct relationship between symptoms and the scores from blood tests or scans. For example, calcific tendonitis can affect the shoulder joint causing pain, reduced movement or even functional paralysis. However, sometimes people with scans that show a lot of calcification don’t report any symptoms, and sometimes people with very little visible in the scans have a lot of functional impairment. Physiotherapy and/or steroid injections seem equally effective at treating symptoms regardless of what shows in the scans. So treatment is typically determined by impairment alone. Likewise, a woman might have lower levels of oestrogen during or after menopause, and this might be associated with certain symptoms like brain fog, anxiety, hot sweats or disrupted sleep. But there is a degree of variation in what level of oestrogen the woman’s body is used to, and the effect she will experience from it dropping that means some women glide though menopause naturally without much ill-effect, whilst others (myself included) would find it entirely disabling without HRT – and this doesn’t map directly onto the level of oestrogen detected in blood tests. For this reason, it is the pattern of symptoms rather than the blood test results that should guide treatment.

Likewise, depression is something that ocurs along a spectrum from very mild to totally disabling symptoms. As is anxiety. There are even levels of the unusual beliefs or sensory experiences that occur in psychosis that would be considered normative – such as thinking you’ve seen a person who has recently died, hearing an internal voice giving you advice, or having strange or intrusive thoughts that you are able to quickly dismiss. In the same way, arguably we are all neurodiverse to some degree – we each have different patterns of cognitive strengths and weaknesses, different ways of processing sensory information, and subjective experiences of the world. But some of us are able to function in the world more successfully than others, with some people constantly feeling discomfort, distress or having to put in huge amounts of effort to do things that others find effortless. It therefore seems logical that it is the level of impairment rather than the neurotype that determines whether a diagnostic label is appropriate – even though this brings both a level of subjectivity to the judgement of whether the label is appropriate and an acknowlegement that the degree of impairment reflects not just the qualities of the individual, but also the qualities of the environment and network that they function within.

It might be that like height or hair colour, sexuality or personality traits, our strengths and weaknesses, there are ways in which we all vary that are not “conditions” that need to be diagnosed but simply differences between individuals. If we conceptualise neurodiversity as this kind of difference, then recognising it can still be a helpful way to understand ourselves, and how we differ from others. It can also help us find our tribe – the people that share our struggles or our interests and talents.

However, all this theoretical debate misses the elephant in the room of how widening the diagnostic range helps people with more subtle impairment recognise their neurotype, at the cost of negating the experience of those with more profound impairment who had historically been able to convey their needs with a label that now gives most people a false impression of much subtler difficulties. What terminology do parents or carers of people with the “autism” described by Kanner (or at the more impaired end of the spectrum described by Wing and Gould) use to describe their pattern of needs? These individuals may be non-verbal, with significant developmental delay, very atypical ways of interacting with others, and obvious stims/stereotypies that instantly mark them out as different to members of the public. This group includes people with autism who are profoundly disabled to the point that they will need signficant financial and practical support across their lifespan – attending special schools, not being able to communicate their needs except through their behaviour, unable to reach independent living, or have the capacity to make decisions about their lives. Having an appropriate diagnostic label functions as a gatekeeper to accessing this kind of financial and practical support.

The problem being that whilst this group have used the label “autism” to describe their needs for eight decades, this is not the same population as now use the word “autism” to describe themselves on social media, to friends or in the workplace. As the diagnostic threshold has lowered to recognise more subtle impairments the label of autism has been claimed by many quite “high functioning” people to self-describe their struggles in a neurotypical world, and – because this group is more articulate and able to speak for themselves – they have come to dominate the discourse about autism, overshadowing the smaller numbers of people with more profound disabilities who had previously been described by this label. The larger number of people who are now included in the same diagnostic category but were previously given the diagnosis of Asperger Syndrome or High Functioning Autism, or seen as having difficulties that were below the diagnostic threshold, typically don’t have the moderate to profound learning disabilities, or need for support in their daily living skills as those who were diagnosed with Autism a few decades earlier. This population group might be independent, articulate, intellectually able, employed, and/or involved in interpersonal relationships including friendships and romantic/intimate relationships. Whilst it is evident that they do find some elements of life harder than neurotypical people, and it is a very helpful and affirming label that lets many people understand why they have felt different to the norm and have struggled with elements of their life, the level of support they require is not equivalent – despite the diagnosis on paper now being the same. A parallel process of widening the diagnosis has happened with ADHD and other elements of neurodiversity, to the point that 10-15% of people now identify with at least one element of neurodiversity, when historically only 1-2% of people were given these diagnostic labels.

This mismatch has therefore become the grain of truth that underlies some very toxic discussions about the growing rate of diagnosis, and the expanding numbers of people claiming disability benefits and adjustments or support within education and the workplace. With larger, more articulate and more powerful groups of voices advocating for the needs of the able end of the spectrum (who often object to any implication of there being a spectrum or such a thing as high vs low functioning or find such labels pejorative), it is hard for the voices of those representing more disabled individuals to be heard. I can understand that we need to respect the voices of lived experience about what terminology they are comfortable with. But some people don’t have voices in this conversation. And it wouldn’t be honest or fair to pretend that the needs of everyone with autism are equal.

The changing use of the diagnostic label doesn’t necessarily relate to the type or degree of support people require, and therefore it may no longer be able to function as a gatekeeper of services. That might still have to rely on an understanding of impairment – the areas in which we are struggling or require more support than the rest of the population. We can’t support everyone equally, that just isn’t viable. We also can’t allow resource rationing to lead the decisions about terminology or diagnosis. But it will have to be consideration of impairment that helps systems to differentiate what levels of support are appropriate – even if that involves subjective judgements, of functional states that are impacted by the environment, and will need to be regularly reviewed over time. Because without us evolving the right language to accurately reflect levels of need, the most disadvantaged will struggle to get their needs met at all – with tragic consequences for them, their caregivers, and the public purse. And, as Mahatma Gandhi is believed to have said, “the true measure of any society can be found in how it treats its most vulnerable members.”

High on scare, low on science: a tale of charity, politics and dodgy neuroscience

In 2011 when I took a voluntary redundancy from the NHS I was asked to help set up a parenting charity* focusing on the period from conception to age 2. I agreed to be the founding Clinical Director and to help them set policies, sort out pathways of treatment and recruit staff. I worked for them one day per week. After less than six months it was clear that there was a divergence between what I felt was most clinically helpful to say about supporting parents in this critical period and the primary goals of the charity**. This was particularly evident in what was being said to promote the launch event of the charity. The title of the launch conference was the dramatic and pessimistic pronouncement, “Two is too late”. This title was cast in stone despite my repeated protests that parents would feel blamed and might think that there was nothing they could do beyond the age of two if they had not had a perfect attachment relationship before this point (when the evidence suggests that there are in fact many effective strategies for enhancing attachment relationships beyond this point, and many therapies for helping children and even adults to learn to emotionally regulate, mentalise and have successful relationships, even where there has been poor attachments, neglect or maltreatment).

The media were given soundbites to promote the event that suggested a baby is born with only one third of their brain active, and the rest relies on the quality of parenting received to grow. The news coverage in the Telegraph*** said that “a failure to help troubled mothers bond with their babies can stunt the development of the children’s brains”. The BBC coverage*** stated “a growing body of research suggests that the amount a baby is loved in the first few months of its life determines to a large extent its future chances” (when love and the quality of the attachment a parent is able to provide are quite different things, the most critical period is usually cited as 6-18 months of age, and the change in prognosis is most impacted by significant maltreatment).

Although our tiny pilot had kept 5 children out of 6 at home with parents successfully, despite them being referred on the edge of care, I had some misgivings about the marketing messages. We had feedback from service users and user groups that they felt stigmatised by some of these messages, but the organisation was unwilling to hear that. I am passionate about the value of improving attachment relationships and I had written a brief literature review on the impact of poor early care to ensure that the project was informed by the evidence. I was also writing a book about attachment and the impact of maltreatment, but I couldn’t match my views up with the politics of the organisation. I felt that to stay would conflict with my professional ethics, and my desire to honour the evidence base and respect the people who needed the service, so I quit before the launch. My colleague decided it would be unsafe to practise in my absence and left at the same time, leaving the charity with no clinical staff. Nonetheless, they decided to make a very big launch event, that I could only describe as one third professional conference, one third stately home wedding and one third party political broadcast for the blue party. It sold 500 tickets to health professionals and other interested parties, and I went along to see the show.

The speakers included a Conservative Peer, Ian Duncan Smith and Andrea Leadsom, along with Dr Amanda Jones (who shared a case study of parent infant psychotherapy). The fantastic Camilla Batmanghelidjh was also present (and made a good job of challenging the lack of empathy from politicians for the people they serve and quipping that this reflects their avoidant attachment styles). I had invited Dr Michael Galbraith (a Consultant Clinical Psychologist who has run community children’s services in Liverpool for many years) to talk about the health economics of early intervention. He did so persuasively and he also challenged the politics that came before his talk (with genuine zeal, as his entire service had been closed in a cost-saving ‘reorganisation’ a few weeks prior to the conference). But the biggest draw was that Baroness Susan Greenfield was invited to talk about the epigenetic effects of early attachment experience on the infant’s developing brain****. As I had not heard of her work prior to this event I was intrigued.

The talk that Prof Greenfield gave was baffling from the off. It massively overran her time-slot, and the program was rearranged to give her a second slot in the afternoon to complete what she wanted to say. My recollection was of a chaotic set of shock images and headlines, with provocative statements which appeared to contradict my knowledge of the literature, despite the fact she claimed they were scientifically founded in hard neuroscience research. Thankfully the pdf of the PowerPoint she used was circulated after the event, so you can see the content for yourself (zip file to download here).

Her title was “The mind of the 21st Century Infant” overlaid on a stock photograph of a baby using a computer. She immediately moved on to dramatic images of a youth celebrating in front of a fire during the recent riots, blaming the riots on the lack of attachment young people have grown up with, which she said had been replaced by technology. She then showed scary images of “artificial intelligence” before trying to define the mind. Then she made a knight’s move to demonstrate that “environment trumps genes” through a single study of rats given genes that cause Huntingdon’s Chorea which had less symptoms if they lived in a more stimulating environment. Then back to human babies, and images of how neurones proliferate during the first 2 years of life. Then a study showing that the Hippocampi of taxi drivers are enhanced, and then some blobs designed to indicate that mental practise of piano also activates the brain like physical practise. Then back to rats, showing more neural connections in a richer environment than when rats are isolated in boring cages. Then a description of how the mind shifts during development, from sensory processing to cognitive experience and gives greater meaning over time, with the view this is driven by experience.

She then claimed the mind might be “changing in unprecedented ways” due to interaction with technology, and showed alarming headlines circled in red, and book titles reflecting her view that internet use is changing our brains.

Prof Greenfield then showed a study counting children’s hours of screen time reported by parents, according to the child’s age. The source cited turns out to be a report saying that children have always used whatever media is current, mostly watching TV (which has been on for 7 hours per day since the 1970s) and although digital media is rapidly proliferating including learning toys, music and phones, total media use by white children had only increased by 38 minutes between 2004 and 2010, though it was more prevalent in low income families and had increased more in BME families. It states there is no evidence yet about how much is too much when it comes to media consumption but states that “media platforms by themselves are neutral; what matters most are the choices made by parents, educators, educational production companies, and other content providers in order to encourage a balanced pattern of consumption” using the metaphor of needing a balanced diet. This was not reflected in Prof Greenfield’s narrative about this amount of media being harmful, and it is unclear how she extrapolated the figures in her table.

Another leap, and we were onto how dopamine is the reward chemical and behind all addictive behaviour. Prof Greenfield said that it changes neural activity, inhibiting the frontal lobes. This is why children are becoming fat, sedentary and obsessed with technology. They are all addictions, and disrupt our frontal functioning. Then a leap to schizophrenia not having sufficient frontal lobe activity, and reverting the brain to sensory processing which is fragmented and without meaning. Another slide full of brains: The prefrontal cortex is not mature until your 20s. Then a claim that schizophrenia, gambling, over-use of screen technology and over-eating have a common pattern of prioritising our senses over reason, due to dopamine making us mindless rather than able to synthesise meaning. It felt very alarming to have schizophrenia and addictions linked to the same pathways as attachment difficulties and technology use. The implication was that parents could cause these difficulties in how they parented babies, or by allowing children to use digital media. These are claims for which I have never read any scientific evidence, despite being a clinician working in this area and trying to keep abreast of the research literature.

Another leap to social media and how it makes us “alone together”. Prof Greenfield told us how real communication is three dimensional, and little of the meaning is conveyed in the words, whilst 90% is in eye contact, body language, tone of voice, perhaps even touch and pheromones. But online we have only the words. According to her, this is why empathy has dropped over the last 30 years (another newspaper headline, not a scientific study, and with no reflection on the socio-political changes that might explain this). The lack of empathy required is why people with autism are so at home with technology and on the internet. People also have reduced identity, so they have to record their existence online. Prof Greenfield characterised the development of online communication as going from describing your cat sneezing on Blogger, to putting up a photo on Flickr, to a video on YouTube, to live Tweeting the action, saying that such activities reflected the author as a disconnected “nobody” who needs to prove they exist. She postulated that a rise in social networking is the cause of reduced empathy and people having a less robust identity, but it seems to me that even if these two things co-occur the direction of causality could be the reverse.

She then skipped on to the evils of video games, inserting a slide with MRI scans to show reduced listening when looking at something else, before blaming video games for the increase in methylphenidate prescriptions. Prof Greenfield claimed ADHD could be caused by video games because they lead to “fragmented attention, shorter attention span and increased recklessness” because they activate the dopamine system. Another headline in a red circle saying children who love video games have “brains like gamblers”. Then she showed us her own work bringing this together: a proposed cycle of how the intense stimulation and immediate feedback lead to high arousal and dopamine release, reward seeking behaviour and this makes brain changes which cause “conditions of childhood, schizophrenia, obesity” and a drive for sensation over cognition increasing the appeal of screen based stimulation in a continuous cycle. Again, I don’t believe any of these claims have appeared in peer reviewed publications or have any evidence to substantiate them, and even if there was evidence of co-occurrence the direction of causality is far from certain. There is however a growing body of evidence that some symptoms that could be interpreted as ADHD-like are caused by early trauma and maltreatment having an impact on neural development. To end that section, Prof Greenfield juxtaposed the “mindless” brain slide with a shot of World of Warcraft and mocked the lifestyle she believed was typical of those who play the game.

Then Prof Greenfield turned her attention to search engines, claiming they give fragmented information but nothing about meaning. By way of example she claimed that you can’t possibly understand what honour is from the search engine results produced by that term. Again, she claimed digital media is all fragmented content, lacking metaphor, depth and meaning. She strongly asserted that nobody could care about a character in a video game like you care about characters in a novel. Again, I would disagree with this. Like any media, video games are very diverse in style and quality and you pick ones that fit your taste, just as you would with a book or a film. If you don’t like violence, don’t pick a violent one. You don’t have the same expectations for the latest chick lit/flick as you do a weighty classic. Some examples are also of better quality than others, some focus on special effects over plot, others are low budget and whimsical. In my opinion if you feel immersed and the story is told well it feels like time well spent and you care about the characters and outcomes, whether the media is a video game, a book or a film. Its disingenuous of her to pick a random game she has probably never played and say nobody could care about a character in it as much as one in War and Peace.

Prof Greenfield then talked a little about the benefits for children of reading with a parent, and how we need to “make up our own minds”. She finished by advertising her books, and claiming that “mind change is the new climate change, the biggest issue facing us in the 21st century”. I’d share the comments on this claim raised here.

The whole felt to me like a mishmash of pseudoscience, headlines and speculation that didn’t even address the topic of the conference. Even if there was persuasive scientific research about the impact of using digital media (which I wasn’t persuaded), it wasn’t relevant to the conference as babies don’t use it. Her talk wasn’t about the importance of relationships between conception and two, which was what the conference was designed to highlight. She had come with a single agenda to sell. And it was clear that she was very much an outsider looking in when it comes to technology; judging it with minimal knowledge of social media, the internet, or video games.

As someone fairly immersed in that world, I could pick out numerous examples of violence in TV, film and video games, particularly violence against women and children. I might even be able to make a prima facie case that we are being desensitised to human suffering (and violence and sexism is being normalised). It is possible that the manufacturers of such products are buying into various ‘exciting’ neurochemical pathways that deal with arousal and reward (cortisol, adrenalin, dopamine), over those that deal with relationships, empathy, love and the ability to soothe (oxytocin and the work of the prefrontal cortex). But I think Susan Greenfield is making a huge correlation-causality error when she blames new media for people becoming isolated and lacking social skills and healthy relationships. I think there is much more evidence that real life experiences of maltreatment prime certain brain changes that make people more sensitive to later triggers and confer vulnerability for later mental health problems (see the work of Prof Eamon McCrory, for example) than that digital media is the cause of the problem.

I do think that if people lack templates for how to do real relationships in a healthy way, and haven’t learnt empathy and self-soothing skills, then these kind of media have a stronger attraction and a different effect on their brain, and can perpetuate rather than ameliorate this pattern. However, in the end I figure that people can always fill their time with something that disconnects them from others, or anaesthetises their pain. In other words, it isn’t the availability of the internet or video games that is the problem (any more than the presence of cheap alcohol, or drugs), it is the unhappiness and isolation that creates the void people want to fill with those things. And that has much more complex solutions, though it might generate less click-bait headlines.

* It is now nearly 3 years on, and I am confident that the clinicians recruited after I left have been able to establish a high quality service, so I would not wish to imply any concern about the services they provide.

** I felt, cynically perhaps, that there was a second agenda designed to promote the MP who founded the project and her political party which was of more importance than our clinical goals, although this was never explicit.

*** http://www.telegraph.co.uk/women/mother-tongue/familyvideo/9273569/New-post-natal-depression-charity-will-address-huge-gap-in-provision.html

http://www.bbc.co.uk/news/uk-england-northamptonshire-18117945

****The promotional flyer for the event said “We are honoured to announce that Baroness Susan Greenfield, Professor of Synaptic Pharmacology at Oxford University, whose speciality is physiology of the brain will bring you up to date on the Science, Neuroscience and Epigenetics”.