diagnosis

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.”

Nature versus nurture revisited

This week I have been reading the Power Threat Meaning Framework published by Lucy Johnstone and colleagues. This document is an attempt to challenge the dominant medical model in adult mental health with a more functional framework for formulation, based on the person’s experiences and circumstances. It is an interesting and challenging read, because it tries to cover the political and philosophical context of challenging the medical model, and input from service recipients about the benefits and challenges of different ways of conceptualising their difficulties. But at the core it rests on a pretty simple and (I’d like to think by now) well-established concept – that the adverse childhood experiences a person has prime them to use survival strategies that make them vulnerable to difficulties later in their life. Those early templates for dysfunctional relationships and the sense of self created by inconsistency and maltreatment also mean that people are more likely than others without those experiences to go on to have other relationships and experiences that are traumatic/harmful as they grow older, which compound the strategies and narratives with which they navigate adult life. The survival strategies which made perfect sense in response to their experiences at the time, have a lasting impact on the brain, body and behaviour. They change the way the person perceives themselves, understands the world and relates to others, and go on to have detrimental effects long after the initial trigger is gone.

As I have mentioned in previous blogs, a person exposed to high levels of trauma or adversity, especially if lacking protective relationships, will become more vigilant to signs of threat, less able to focus on the tasks that help us attain educationally and in the workplace. Where their early relationships have been dysfunctional, they are likely to struggle with forming healthy later relationships, and are more likely to express needs indirectly and in ways that cannot be ignored – including in ways that lead to negative societal responses, such as rejection and/or pejorative judgements by others, involvement with mental health services (and being given diagnostic labels), involvement of criminal justice systems. This leads to an increased risk of socioeconomic adversity, lower social connectedness and a greater chance of a range of adverse outcomes.

In short, thinking about adversity in both the person’s childhood experiences and current context, not only gives us insight into the biggest variable in personality disorder, attachment disorder and other specific conditions. It also explains a lot of the risk factors for wider issues with physical and mental health, challenging behaviour, addiction, violence, crime, homelessness, harmful relationship patterns and helps determine our sense of self and our ability to make healthy social connections. Adverse childhood experiences increase the risk of a very wide range of  physical and mental health problems, for a range of reasons including lower self-care and poor lifestyle choices, a lack of self-monitoring and seeking of appropriate care in the early stages of problems, and what seems to be increased propensity for ill-health mediated by the stress messengers in the body.

I’d go so far as to say that getting child protection and parenting right is the biggest task facing humanity, and the area where I believe we can make most difference for the future – hence dedicating my career to working with the kids who have experienced the most adversity and trying to improve their outcomes. But as I have explained above, it doesn’t just stop there, because the ripples of that early adversity continue to spread out into the lifespan for many people, forming a barrier to the protective factors of education and employment, establishing social networks, and the means to access pleasurable activities. This can then be compounded by financial hardship, hostile systems (such as benefits sanctions and fitness for work tests) and lack of access to resources (including finding it hard to identify and navigate access to social care and health services, to know and assert their rights, or appeal against decisions made by organisations). So the same people who experienced chronic developmental trauma and have unresolved psychological consequences from that are often struggling with their personal relationships, as well as practical issues like debt, homelessness and crime. In that context, dysfunctional coping strategies like substance abuse or presenting with challenging behaviour or mental health symptoms make more sense as attempts to obtain escape or safety.

There are also vulnerability factors such as being in a disempowered/minority population group, that also bring compounding adversity such as sexism, racism/xenophobia, homophobia, transphobia, ableism, ageism, religious intolerance, etc. These can impact at all life stages. For example, a child with physical or intellectual disabilities is more likely to be the victim of abuse, to experience bullying, and (perhaps increasingly as they grow up) to struggle to access community resources, financial independence or a supportive social network. For people from cultures outside of the majority in the country where they live, there can be language and cultural barriers, prejudice and political/economic challenges, as well as exposure to poverty, war, terrorism and other threats to survival that are outside the experience of the majority of lifetime residents of developed nations. Certain population groups such as asylum seekers find things particularly challenging in terms of finding safety, housing, financial security, after already experiencing multiple traumas in the country they have left and during their journey to find safety. Each individual is unique and their story, current situation and past experiences are a huge influence on the way that they experience and interact with the world.

As Johann Hari rightly points out in his recent article to promote his new book, everybody knows that our experiences, relationships and living conditions impact on our state of mind. If a loved one such as a partner or child dies, you are likely to be sad (and perhaps angry, or relieved if they were suffering, or many other complex feelings). Likewise, if you are given a warning of impending missile attack most people would feel anxious, and become hypervigilant for signs of threat. Therefore, most people would not think of grief after a bereavement or loss, or anxiety when in an acutely threatening situation as pathological. Which makes it somewhat curious that the medical model has been applied to mental health in the way that it has. Why has it become that depression or anxiety or even addiction is seen as a disease, a neurochemical imbalance that needs to be treated with medication?

Perhaps the advances of modern science studying genes and neurochemicals made us think of ourselves as complex biological machines that could be understood at a physical level. Perhaps there is wishful thinking about biological models leading to potential cures. Perhaps the fact that brain injuries, tumours, dementias and neurodevelopmental conditions can make an impact on our feelings and behaviours made it seem that all feelings and behaviours could be attributed to brain changes. Perhaps the idea of massive numbers of people suffering is too distressing to think about and it is a common defence to depersonalise that, and to other the person suffering. Perhaps the narrative of mental illness has sustained the power and income of the medical profession as experts and gatekeepers to such treatments. Perhaps it was clever marketing propaganda by the pharmaceutical companies to sell more of their products. Perhaps it was so persuasive because it fits with the neoconservative narrative to think of individual failure rather than individuals showing the symptoms of societal problems (and therefore our collective responsibility to solve these problems and look after each other, rather than just thinking of ourselves). Or, more likely, it was a combination of these and many other factors.

Of course, we don’t want to throw the baby out with the bath water. There are certainly people for whom psychiatric medication has made a massive positive difference. People who feel more able to concentrate and gain attainments when on stimulant medication, or who feel less hopeless, anxious or angry when on antidepressants, or people whose distress, confusion or aggression is reduced by neuroleptics. But we can’t work backwards from positive impact to considering that proof of a neurochemical deficit or imbalance. After all, the evidence for analgesics is very strong, but I doubt anybody thinks a headache is a symptom of lack of aspirin! We need good unbiased data to understand what is going on, not the cherry-picked examples that currently make it into the public domain. Alltrials is a good step in the right direction in this regard, but there is still bias in what research gets funded and what gets published, with bias towards the sexier topics of new technology, genetics, scans and hard science, and less towards the sociopolitical aspects affecting individual and population wellbeing.

I’m not saying that nature isn’t important. It seems likely that various medical/biological factors do mediate the impact of experience. For example, some conditions like autism, intellectual disability, and dementia do appear to have predominantly biological causes, whilst having impact on thoughts and feelings. Brain injuries and diseases can affect personality, mood and behaviour, and various hormonal and physical conditions can affect brain function and impact on mental health. There seem to be genetic differences (eg to telomeres) that make some individuals more resilient to adverse experiences than others. And some twin studies show genetic factors influence the incidence of conditions like schizophrenia and bipolar disorder, although again the epigenetic factors seem important, it is not clear whether the biological differences are a cause or a symptom of the condition, and the role of biology is not large enough on its own to explain who gets these conditions without also considering experience. Like most of these debates, the answer isn’t going to be one extreme or the other. I am glad that the pendulum has swung back towards considering nurture and experience more, and not exclusively the high tech science of genes, psychopharmacology and brain scans. It seems likely that who we are and how we feel and function in the world is affected by both our biology, our experiences, our circumstances and our relationships both now and in the past.

So, whilst Christine Courtois and Bessel van der Kolk’s efforts in the adult and child spheres respectively to get the impact of complex and multiple traumas and damaged attachment relationships recognised as a better way to understand attachment disorder and personality disorder than a neurobiological disease model (and their challenges to the DSM) have not yet been successful, I am heartened if this way of understanding the impact of experience is gaining more credibility in the field. I think the power-threat-meaning framework might be helpful for some clients, and the questions that they advise asking are certainly good way of starting a clinical assessment.

“What is your story?” Specifically:

1) What has happened to you? (How is Power operating in your life?)

2) How did it affect you? (What kind of Threats does this pose?)

3) What sense did you make of it? (What is the Meaning of these situations and experiences to you?)

4) What did you have to do to survive? (What kinds of Threat Response are you using?) and are you still doing this?

5) What are your strengths? (What access to Power resources do you have?)

It certainly resonates for me, and I wrote about a lot of this stuff in my book, Attachment in Common Sense and Doodles in relation to children who don’t live with their family of origin. I wanted to make information about attachment and the impact of trauma more accessible to carers, legal professionals and social care staff and other profesionals in the child’s network. It isn’t novel content, as it was based on themes that had been researched, written and spoken about by others before me, but I have tried to present it in an accessible and engaging way.

I am heartened that in the last few weeks the idea of experiences and nurture being important in mental health seems to be reaching the public consciousness. It seems to be being promoted more vocally by a lot more clinical psychologists, and to have reached me in various different ways. I’m glad if it is gaining traction and a wider audience, but it might be that’s wishful thinking on my part, and merely a product of my unrepresentative sampling. In light of how horrible a lot of the news is since the Brexit vote, Tory election win and Trump victory, I’m trying to be more selective about what I read and the social media I engage with, so it could be I’m in more of a bubble of like minded thinkers these days, and that is the explanation for hearing more about models that fit my own thinking!

Everyday madness

Do you ever get days where you look at a chair, and then say the word “chair” to yourself and wonder how those things can be connected, the object and some random sound we make with our mouths? Or you are driving down the motorway and suddenly think “I’m propelling myself along in a metal box in some arbitrary location on a big blue sphere that is in itself a tiny arbitrary point floating in a massive pattern of spheres that make up the universe” and then wonder why it is we’ve developed such a complicated and unequal society that fills all its time with busy work in the pursuit of status and possessions? I do. I’m pretty sure lots of other people do to. But I’m not sure I’ve ever checked. It isn’t an easy conversation to start as our thoughts are so subjective that there is always the possibility that explaining them to someone else they would just assume we were a bit crazy, whether in the informal lay use of the word, or in a mental health setting as being symptoms of disordered thinking. So what is normal and what isn’t?

Do you ever feel a compulsion not to tread on the cracks in the pavement, or to salute a magpie to ward off bad luck? Do you feel a sort of temptation to set off fire alarms, pull the emergency stop on trains, or open the emergency exit on planes? Do you feel a compulsion to reply to your satnav? Do you ever lie in bed wondering if you locked up for the night? Do you ever go back to check if you locked the door or turned off the cooker or your hair straighteners after you’ve left the house, or phone home to hear the answerphone to be sure the house is still standing? Do you get transitory urges to drive off the road, or into pedestrians or obstacles? Or to jump in front of trains or traffic? Or to throw your keys or phone off a bridge or out a window? Or have a transient desire to do something shocking like swear in church, laugh at a funeral, flash at your boss, stab someone when you are holding a knife, throw your drink in someone’s face? Get images of the harm or death of a loved one? Or unwanted thoughts about sex? If you do, you are far from alone as these are commonly experienced intrusive thoughts that are reported by 90% of the population.

When we had a thread about normalising unusual thoughts, members of the forum gave even more random examples. One person didn’t like the way sunflowers looked at her and once threw her chips at one and ran away laughing. One person heard music coming out of the back of her head, whilst another heard the doorbell repeatedly ring. Another person warns her husband that she might have an urge to kill him during the night. One person can’t shake the idea that cows are just playing dumb and have been gossiping about her before she arrives and will continue when she leaves. One imagines flying insects are like dirty old men rubbing their hands on their thighs. Another sometimes has to put her hands out in front of her to check for glass doors she hasn’t seen when walking down the pavement. Many report urges to do cartwheels, handstands or forward rolls at work or in public. One constantly made bets with the devil in his head in which the wager was years of life-expectancy. One shouts obscenities loudly into the wind whilst cycling along. Quite a few of us anthropomorphise inanimate objects, from imbuing toys with personalities, to feeling sorry for dented tins, weak seedlings, or the families of insects we kill.

Three people feared seeing dead bodies when opening toilet cubicles, and one would imagine worst case scenarios like people dying in fires. One had the sense a person was standing next to them that they could catch glimpses of out of the corner of their eye. One asks ghosts to disappear before turning on the the lights if she returns home after dark. One can’t look in the mirror in case something comes out and eats her, and quite a few can’t look out of windows after dark. Several adults are afraid of monsters under the stairs or bed, or snipers/wasps hiding in low windows. And many people have particular rules about counting or numbers, such as wanting the volume to be on an even number or a multiple of five. Many people have strong desires for neatness or order, including one with a desire to tuck in other people’s clothing labels if they are visible.

Three people report that “If I’m somewhere important where my phone really does need to be on silent I wont just turn it to silent mode. I don’t trust it. I’ll turn it off completely, take the battery out and store the battery and the phone is separate compartments of my handbag. Just in case the battery decides to be sneaky, ‘falls’ into the phone, the phone switches itself on, turns to loud mode and horror of horrors – rings”. A fellow clinical psychologist explained that as a child “I wouldn’t look through a dark window once I was in bed, as I believed that we were experiments/pets and that the world got rolled up when we were asleep for cleaning, and that if any of us pets/subjects found out about it we would be removed from the world/pet enclosure/experiment”. Another was convinced he had telekinesis and could make his lampshade rock from side to side.

And then there are numerous sensory distortions. Some people reported feeling their time was going faster or slower than the rest of the world, or feeling like they were very small or large compared to usual. Quite a few people reported synaesthesia (sensations from other modalities, like seeing the months of the year as having a shape, or letters as having colours). Many people get “earworms” where particular pieces of music play repeatedly in their heads at certain times. Some have a continuous internal radio station of music, which they walk, chew or tap along to.

Personally, I get what I used to call “sicky vision” as a kid. If I have even a mild fever I don’t like the textures of certain things, so wallpaper with vertical bits of string or wood-chip can look ‘itchy’ or things that are crinkled can look ‘spiky’. I don’t really quite have words for it, but they become uncomfortable/stressful to look at. It is an exaggeration of the trypophobia I get at other times (an exaggerated disgust sensation from looking at organic holes – but please don’t google it unless you have no problems with disgust at all, as you may also get an unexpectedly strong reaction). As a result I struggle with the appearance/feel of my own intermittent and fairly mild pompholyx eczema, and when I had to put ointment on my children and husband’s extreme outbreak of chickenpox a few years ago I could see/feel the texture every time I shut my eyes for weeks, and it even prevented me from reading text comfortably as it would distort into bobbles!

So what is it that distinguishes all of these odd thoughts, compulsions or sensory distortions from those which get labelled as psychosis or OCD? I think there are a few distinguishing features. First, the impact of the thoughts and experiences on us: If we are otherwise functioning well in our lives, and are able to notice, accept and dismiss the thought or experience, then they are not intrusive enough to be framed by us or others around us as problematic. Second, the meaning we give to them: If we understand them as transitory, or as a reaction to stress, exhaustion or particular circumstances (or substances) we can apply more self-compassion and are less likely to be scared by the experience or to feel they are outside of our control. Likewise the variation in meaning given to unusual experiences in different cultural group (whether a source of insight, or a sign of possession or black magic, for example). Thirdly, these thoughts/experiences are more likely to be present and construed as symptoms in people who have already got complicated lives and multiple stressors, or are subject to prejudice. With a history of trauma, a lack of coping skills, the stress of socioeconomic deprivation or within certain cultural groups, the response to such experiences may be more overt or distressed, and may compound other problems. Finally, some people are already visible to professionals or in medical settings that make diagnostic labels more likely.

When a CP from the forum described the experiences and behaviours I have listed above to various professionals working in adult mental health services, the assumption was that the person described would surely be a patient with psychosis or OCD. Many were surprised to hear that these were descriptions from healthy adult professionals working in mental health who have never had diagnostic labels applied to them. However, interestingly, when the same question was asked of carers, they were much more empathic and less judgemental and made no such assumptions.

I was reminded of the seminal Rosenhan study in which eight researchers were admitted to inpatient services as pseudo-patients to study the environment. The admissions were triggered by describing auditory hallucinations, but as soon as they were admitted they no longer feigned any symptoms. Nonetheless, all were given psychoactive medication, and seven of the eight were given a diagnosis of schizophrenia that was assumed to be in remission by discharge (the other was diagnosed as ‘manic depressive psychosis’). Again, the patients recognised that the researchers were imposters, but the staff pathologised ordinary behaviours to fit with their pre-existing beliefs about the nature of psychosis (including describing the researcher’s note taking as “pathological writing behaviour”). Rosenhan and the other pseudopatients reported an overwhelming sense of dehumanisation, severe invasion of privacy, and boredom while hospitalised. Interestingly, a hospital then challenged the research team saying they could recognise any fakers easily. Out of 193 new patients in the study period, the staff identified 41 as potential pseudopatients, with 19 identified by two or more members of staff. However, no pseudopatients had been sent at all. Rosenham concluded “it is clear that we cannot distinguish the sane from the insane in psychiatric hospitals”.

It is another salient reminder of how easy it is to make negative judgements about people according to very superficial distinguishing features, and how much it is part of human nature to fear difference. Whether we are judging “schizophrenics” as a group, or Syrians, or Republicans, or Muslims, or benefits claimants, or European immigrants, or the people who voted Leave in the EU election, it is easy to make assumptions about people that we outgroup and to forget that we are all human, and all trying to do the best we can in our own circumstances and based on our own experiences.

Our own quirks of thought and behaviour are another good reminded that we are not so different. Mental health diagnoses are convenient labels for clusters of behaviours and reported differences in how people think and feel. But they reflect much bigger stories than just our biology. And people are still people.The baby pulled from the rubble in Aleppo could grow up indistinguishable from my child, if they had the same life experiences. The person with the label of psychosis, the scars from self-harm and substance misuse and the long stay in the mental health unit, would have had a different life path if they had been born into different circumstances. Likewise you and I would likely show equal levels of distress if we experienced similar trauma. As Jo Cox put it so well, we have far more in common than that which divides us.