Part 3: Neuro-Authenticity, Neuro-Identities, and the Neuro-Industry  

Mad in America and Mad in the UK are jointly publishing this four-part series on neurodiversity. This third part of this series on Neurodiversity consists of an essay by a therapist who has asked to remain anonymous for fear of the consequences for their job. The Mad in the UK editors of this series write that in the UK, there is the “likelihood of a backlash against any clinician who questions common ideas and assumptions in the field of neurodiversity.” The series is being archived here.

In Part 1 and Part 2, we—John Cromby and Lucy Johnstone—argued that the neurodiversity movement has, despite its original intentions, resulted in a range of contradictions which have created division, revived diagnostic thinking and practice, and perpetuated neoliberal ideologies. In this blog, a therapist who works with children and young people expands on some of these worrying consequences, including the imposition of identities, the co-option of the neurodiversity movement for personal and professional gain, the restrictions on therapeutic work, and the silencing of dissenting views. The author writes anonymously because of the fear of repercussions for speaking openly, but nevertheless wishes to take this opportunity to express their concern and anger about what they witness on a daily basis.

Neuro-identities

We used to worry about labels.  We used to worry that telling a child that they were a particular thing would shape their development in that direction, closing down other options. Labelling theory suggested that not only would a label affect how a child saw themselves, it would also affect how people around them saw them and treated them. It would lead to ‘foreclosure’—the assumption that because the label explains a person’s behaviour or experiences, there is no need to attempt to understand the person as a complex being.  This applied to a whole range of labels—not just diagnostic terms, but also descriptions of children such as ‘disruptive’, ‘gifted’, ‘talented’ or even ‘quiet’. A psychiatric diagnosis, a special sort of label, was generally seen as undesirable, even if sometimes necessary.

This position has been entirely flipped around in the 21^st century, with the growth of identity politics. This term describes how we might assert rights and responsibilities, or seek justice and equality, solely on the basis of characteristics such as ethnicity, sexual orientation or gender. It is often seen as problematic because its emphasis upon individuals can deflect attention from wider systemic or structural issues, such as the exploitation and inequality of neoliberalism.

The current emphasis upon these kinds of identities might be seen as a consequence of neoliberalism’s fragmentation of families, settled communities and stable workplaces, and the associated destruction of collective institutions such as working men’s clubs, youth clubs, unions and churches. As these traditional sources of identity formation have either disappeared, or been made less relevant, people have increasingly used other resources to establish their sense of self.

One resource young people (as well as adults) have turned to is psychiatric diagnosis. A diagnostic identity may be particularly appealing because it allows our various perceived failures to meet the impossible standards of neoliberal ideals to be very specifically re-cast as symptoms of ASD, ADHD, or neurodiversity. This seems to provide, as one young person put it, ‘an easy way to run away from self hatred’.

This has been facilitated and amplified by social media. In the words of one young woman:

‘I think social media has exacerbated this need to have an identity, because otherwise you won’t be seen and you won’t have a tribe, basically…. We’re so desperate to put ourselves in a box, in terms of, sexuality, gender, race, class. I think it feels nice to feel like you have a solid identity when you actually don’t’.

So, what used to be called ‘labels’ or diagnoses have become ‘identities’, and as such, they have become validating, life-affirming and precious. I see the consequences of this every day in my clinical work. Psychiatric ‘disorders’ are now seen as a tool for self-understanding. I met a parent yesterday who is pursuing an autism diagnosis for her daughter. ‘It won’t make any difference’, she said, ‘but we are desperate to understand her better, and for her to understand herself’. The idea that some people can only be understood (and understand themselves) if they are given a psychiatric diagnosis is widespread among the parents I talk to. They see this message in the culture around them, both on social media and mainstream media outlets.

I’ve been working in this area for much of my career, and in this time I’ve seen the way that we understand neurodevelopmental diagnoses change dramatically. For example, ‘masking’ is the idea that young people and adults can camouflage their symptoms of ADHD or autism, and so manage to go undiagnosed for years. This has been defined as a problem, a way that autistic people are forced to hide their authentic selves at great personal cost. I meet parents who tell me that their child was sociable and apparently happy throughout primary school—but now they understand that that was masking and that today’s withdrawn and anxious child is more of a reflection of their authentic self. I also meet parents who tell me that their child seemed to be having a great day out and joined in with everything, but that they know they were ‘masking like a pro’ because at the end of the day they ran out of steam and had a meltdown. Rather than seeing this as the natural response of a child at the end of an exhausting day, they believe the happiness during the day was just an act.

Masking is something we all do. We learn how to refrain from acting on our impulses and how to act appropriately in social situations, even when it doesn’t come naturally. That is part of growing up. I have never met anyone over the age of about seven, with or without an autism diagnosis, who says that they are the same across every context, that they do not hide their instinctive reactions in some situations. We behave differently at home than we do at work or school. Some environments require significantly more effort than others in order to behave appropriately, and keeping this up for too long can take a toll on anyone.

When it comes to those who have been diagnosed as autistic, however, this basic part of being human is seen as a problem. There is a plethora of books advising the newly-diagnosed on how to ‘unmask’ their autism (search ‘unmasking autism’ on Amazon for a quick glance).

The prerequisite for this unmasking to occur is, of course, the adoption of a psychiatric diagnostic label. Social media is filled with ecstatic posts by people who say that they finally feel able to be their authentic selves now they have their diagnosis. Others enthusiastically congratulate them. Some become instant celebrities and land book deals, while others already had successful media careers and make documentaries about the new insight that their diagnosis gives them. The message is clear: get a diagnosis and your life will be transformed.  Welcome to the neurodivergent community.

Neuro-truths (and fictions)

As the field has moved towards the ‘neurodiversity paradigm’, diagnostic labels have gained a new and highly deterministic significance. Diagnoses of what are referred to in DSM-5 as neurodevelopmental disorders (ADHD and ASD) are presented as a fundamental truth about who you are. Those who meet diagnostic criteria for autism are told that their ‘neurotype’ is different to the norm and always will be, and that they struggle because their brain is not adapted to the ‘neurotypical’ world. You can buy books for your child now, telling them that they are growing up in ‘a world not built for them’. Or it’s that they are ‘wired differently’.  These characteristics are regarded as immovable, essential and determined by neurobiology, running through you like the word in a stick of rock.

The neuro-story is seductive. It offers a simple explanation that appears to solve all of a person’s problems. Do you think you’re not as successful as you’d like to be? Is life too hard? It’s not your fault, it’s because you’re different and the world wasn’t designed for you. And many psychologists want to be seen as progressive and inclusive, and hence are extraordinarily susceptible to being swept up in this. We want to feel good about what we do, and right now, lots of people want to be neurodivergent. It makes them happy and they feel better about themselves. It is perhaps not surprising that many adults, including psychologists, are now hastily discovering their own ‘neurodivergence’.

A predictable pattern in the field is that professionals who have worked with autism or ADHD for years have a Damascene moment, see the light and get a diagnosis. Often they start with ADHD and then get one of autism slightly later on. Similarly, it’s now common for the whole family to end up identifying as neurodivergent, after one child receives a diagnosis. The blame for how difficult life can be is then directed at the marginalisation created by ‘neurotypicals’, who apparently find life so much easier. Your diagnosis gives you a minoritised and oppressed status, which in the 2020s has advantages and social power.

In contrast, no one wants to be neurotypical. That carries no status at all.

Power and the autistic community

Over the last twenty years the internet has facilitated the development of the ‘autistic community’, who are mostly late-diagnosed adults. This ‘community’ has enormous power, because the ‘consensus of the autistic community’ is used to define best practice—for example, regarding language, diagnosis and what interventions should be offered to children who meet the criteria for autism.  Social media communities are notoriously susceptible to influence and control by factions or minority groups, and the autistic community is no exception. Certain truths are unsayable (for example, that the traits which make up the diagnostic criteria for autism are spread through the population, and therefore that many people without diagnoses are ‘a little bit autistic’). The ‘accepted truth’ is that being autistic is like being pregnant; you either are or you aren’t and there’s no grey area. Anyone who has carried out diagnostic assessments knows that this isn’t the case, but saying so will provoke fury.

This ‘consensus’ means that late or self-diagnosed adults on social media are deciding what should be done with children, often with very little experience of working with children and particularly no experience of those with additional learning disabilities. Their diagnosis is their qualification and gives them immediate expertise. They are assumed to share ‘lived experience’ with everyone else who has the same diagnosis, even though we know that these diagnostic groups do not hang together either biologically or psychologically.

One way that this shows up for me is in the lack of recognition of the different ways that a diagnosis may be experienced by a recipient. Adults generally choose to seek a diagnosis, but children have it imposed upon them, usually because they are not complying with adult expectations for behaviour and development. They have a different relationship to it as result, and may in fact really dislike or reject it. There’s no acknowledgement of this by the late-diagnosed autistic community, who feel that it should be the same life-affirming experience for everyone else that it was for them. The advice given is completely lacking in nuance and any understanding of individual circumstances.

One parent described to me how they had told their six-year-old that they were autistic and that this was their neurotype and always would be. Autistic advocates told her that the child should be informed the moment they were diagnosed. Now she feels that her life is never going to get any better, and seems alienated from the rest of the family who she has been told are ‘neurotypical’. She draws pictures where she is shut in a building labelled ‘Autism’ and everyone else is in a different building, playing. Some children are growing up being told by their well-meaning parents that their brains are different to other people and that the world isn’t made for them. They may be told they are the only one in their family who has this different brain whilst their siblings are ‘neurotypical’.

We don’t know what the impact is of telling children they are ‘wired differently’ to their family and friends, but we do know that a sense of belonging is very important to teenagers in particular, and that telling them that their differences are located in their brain, and therefore unchangeable, may well lead to a sense of hopelessness about the possibility of life improving as they get older.

We also don’t know what the implications are for those children who are told they are ‘neurotypical’ whilst their siblings are ‘neurodivergent’. What happens when they start to struggle as teenagers or young adults—might they be predisposed to think it must be their fault, because as a neurotypical, the world is meant to be designed for them? Often in my experience, siblings or those with several friends who identify as neurodivergent get their own diagnosis later on. Again, it’s said to ‘explain everything’. They’d been masking up to then, of course.

Clinical implications and neuro-affirmation

The consequences of these new narratives about autism and ADHD play out in the clinic room, both when it comes to diagnostic assessments and therapy.

One of my supervisees assessed a teenage girl with no history at all of autistic behaviour. When he refused to give a diagnosis, her parents complained on the basis that he didn’t understand masking and female autism. A highly experienced clinical psychologist told me that she used to give diagnoses gently, assuming that they would be bad news, but now she has to be far more careful when telling someone that they don’t reach criteria, as they are often furious. She has had bad Google reviews of her service, and formal complaints made against her for refusing to diagnose people who don’t meet the criteria. Service users tell her that she is using outdated criteria and that she doesn’t understand modern views on autism and ADHD.  She’s using tools that are considered to be the gold standard for evaluating whether someone meets the DSM-5 diagnostic criteria.

When I first started working in a neurodevelopmental service myself, many years ago, I was told that parents may need time to grieve on receiving a lifelong diagnosis for their child. Now the atmosphere is more likely to be one of joy. Except for those who don’t get the diagnosis. For them it’s more like grief.

A quick adoption of a diagnosis as an identity makes clinical work a great deal harder. That’s because neurodivergence is beyond the reach of usual therapeutic exploration. We simply can’t ask why, because there is already (apparently) an answer. Fidgeting in class is because a child has ADHD; getting upset if a friend ghosts you is attributed to ‘Rejection Sensitive Dysphoria’; feeling anxious about leaving the house is ‘Pathological Demand Avoidance’; and so on.  Everything has a label, and the label disqualifies any other explanations. Parents who ask me about their children’s behaviour will often have a long list of possible diagnoses they are considering—could it be autism, ADHD, autistic burnout, conduct disorder or even BPD?

Anything that has been defined as part of a person’s ‘neurodivergence’ can be seen as unchangeable, both now and in the future. I meet young people who tell me that because they are autistic, they can’t follow instructions, try out new food or talk to new people. They believe that that is just how they are, and that if they try to do anything differently that would be ‘masking’. As a consequence, helping children who have been identified as neurodivergent develop the skills that all children need to learn can feel transgressive.  ‘Neuro-affirmative’ psychologists write: ‘Neurotypical social skills training is fully rejected by the Autistic community and neurodiversity paradigm, where comparisons to the practice of gay conversion therapy are made…. [this training] encourages neurodivergent people to hide their true selves… and instead promotes masking. It leads to internalised feelings of shame and ableism.’

The ‘autistic community’ they are referring to means the online autistic community, with all the problems of social control and conformity that online communities involve. I know that not all people who meet the diagnostic criteria for ASD agree with views of ‘the autistic community’, because they tell me so in the therapy room. But they’d never say it on social media, because they know just what sort of reaction they would get.

Neuro-affirmation can rule out any clinical response except affirmation, validation, and arranging adjustments. The personal meanings behind these reactions, that might lead to understanding them differently and thus reducing or changing them, are sealed off behind the new diagnosis, which it is assumed must become an identity.

Only a few years ago, it was accepted that the shy child could become more outgoing over time, and those who were very active as young children would become more able to concentrate as they grew up. In ordinary parlance, they might ‘grow out of it’. It was also accepted that all of us need to learn difficult lessons about how to interact with others, through parental and educational guidance. No longer, not if a child has been identified as neurodivergent. The neuro-affirmative approach insists on unconditional acceptance with no expectation or possibility of change. It sounds good, but it can close down opportunities for growth.

Child psychiatrist Dr Sami Timimi shares my concerns:

‘Parents may be enabled to have a new sympathy for their child and adults may feel that something about their life now makes sense. But at what price? How long do these initial feelings of relief last? What goes missing from that person’s narrative when a label that cannot explain is used to explain? … In my practice I often meet families who have had a child diagnosed with autism, where matters haven’t improved, where parents feel disempowered because they believe that they cannot have the “expertise” to know what to do and they can’t seem to find the ‘experts’ who do. I regularly meet young people whose own dilemmas are not given a full hearing, where the assumption is that they feel the way they do “because they are autistic.” For some people ASD is a ticket of entitlement, giving them access to learning supports (for example) that could be helpful for other children who are denied this support because they don’t have ‘autism’. But I also see regular examples where an autism label excludes kids who could find input helpful because, for example, their social anxiety is because they have autism and so there is nothing we can do about that’.

A neuro-diagnosis as a qualification

Another new idea is that those who meet criteria for a neurodevelopmental diagnosis are ideally seen by professionals who themselves have neurodevelopmental diagnoses. The ‘double empathy’ theory suggests that autistic people are better at empathising with other autistic people, while non-autistic people can’t empathise with the autistic experience. In practice, this means that a diagnosis has become equivalent to a qualification. It’s a way of saying ‘I will understand your child better than other people’.

Clinical psychologists and psychotherapists list their diagnoses on their professional profiles, and widely-used websites only list practitioners who identify as neurodivergent. At conferences, it is increasingly common for professionals to start their talk by disclosing their own diagnoses and to talk about the insight that this gives them. ‘Co-production’ means always including those who identify as neurodivergent as ‘experts by experience’. Those who think about difference in other ways and who might be critical of the diagnostic system are not included. Their lived experience and expertise does not count.

The double empathy theory as applied to neurodiversity does not make sense if we accept that the category ‘neurodivergent’ is unreliable, and the differences it describes are dimensional not categorical. In order to believe that autistic people empathise best with autistic people, while non-autistic people empathise better with non-autistic people, we must first accept that the diagnostic grouping ‘ASD’ identifies something fundamental about a person that all those who meet the diagnostic criteria share. We must accept that by virtue of receiving an autism diagnosis, a person will be able to empathise with everyone else who has received the same diagnosis. There is no evidence for this.

Nevertheless, I have heard parents being encouraged to do everything possible to find a professional with their own diagnosis of autism or ADHD to conduct an assessment of their child. Of course, this means that they are unlikely to find someone who will talk with them about the downsides of diagnosis—they have (often unwittingly) pre-selected someone who considers a diagnosis to be a beneficial way to understand themselves and others.

Obscuring wider contexts

As argued in Part 1 and Part 2 of this series, labels such as autism and ADHD have the general effect of individualising people’s responses to social contexts. This happens in schools, where the neurodiversity narrative performs exactly the same function as the medical model that some advocates say they oppose. Heidi Mavir’s best-selling book Your Child is Not Broken describes how her son Theo, having previously been happy at primary school, found a secondary school with 2,200 pupils completely overwhelming and started refusing to attend. The explanation that Mavir seeks, and eventually finds, is that Theo has previously unrecognised autism, was masking up to this point, and is now in ‘autistic burnout’.

In other words, the problem isn’t that huge secondary schools are stressful and overwhelming places for many children, the problem is that Theo is neurodivergent. The world isn’t made for him.

Interestingly, when asked ‘What do you think needs to change in mainstream schools for them to be autism friendly?’ Theo replied: ‘They just need to change in general. They’re not built for anybody. To be fair, I don’t think anybody gets on OK in mainstream’. A great deal of research backs up his statement; it is clear that challenging educational environments are putting all young people under huge pressure. Our current education system prioritises test results. It constantly compares young people against each other and puts them under intense pressure. These circumstances cause distress—not because some of the children are ‘neurodivergent’, but because they are not healthy conditions for young people to grow up in.

Individualised understandings (such as was found by Mavir for her son) direct us away from the need for systemic causal factors and systemic change, and towards individualistic accommodations—movement breaks, fidget toys, therapy dogs and ‘quiet zones’ for those who have a diagnosis, for example. Instead of working to change a school system that doesn’t work for many young people, we say that neurodivergent young people don’t fit the system, and they (and only they) need something special and different.

The Neuro-industry

Declaring yourself to be ‘neuro-affirming’ is the new way to show that you are a progressive, right-minded professional, and many are now describing themselves as such. Neuro-affirmation is ill-defined. To some it just means using non-pathologising language, while to others it means buying into an entire ideology and a narrative of oppression of the neurodivergent by the neurotypical. Whichever way you see it, inevitably, in line with the demands of neoliberalism, a neurodiversity industry has emerged to make capital (literally and metaphorically) out of the movement.

Diagnostic services have sprung up that promise a positive, strengths-based approach to diagnosis for those who have money to pay. They are explicit that what they are really offering is personal transformation, saying (for example) that an autism diagnosis can explain who you are, and help you feel like you belong; and even ‘free you from struggling in life’.

In this context, it’s not surprising that adults (mostly women) are flocking to private services that have sprung up to meet the need for assessment. It’s now possible to get a ‘neurodiversity affirmative diagnosis’ that promises to focus on your strengths and help you feel good about yourself.  It’s not clear whether anyone is ever told that they don’t meet diagnostic criteria, or whether ‘affirmative’ in effect means ‘we will accept your self-evaluation at face value’.

AdultAutism.ie are at the forefront of ‘neuro-affirmative diagnosis’ and their staff have written a handbook on the topic. They are selling autism diagnoses to adults, but they prefer to talk about ‘collaborative autistic identification’, because, in their words: ‘With our progressive, neurodiversity-affirmative approach, we acknowledge the language and very concepts of “assessment” and “diagnosis” are perhaps ultimately unsuited to adequately capture the journey and joy of Autistic discovery’.

Through this process, people can be ‘discovered as autistic’ for 1100 euros. Although they disavow pathologising language, their perspective on diagnosis is the most deterministic possible. For them, it’s something intrinsic to a person waiting to be discovered and identified, not a social construct created by a committee of psychiatrists.

The language they use sounds inclusive and accepting and, dare I say it, slightly seductive. There is no discussion of the reality of the psychiatric diagnostic system and how it is designed to identify a ‘clinically significant impairment’ in functioning (DSM-5) rather than joy and discovery. They are selling diagnoses whilst obscuring the reality of a deficit- and disorder-based classification system. This does not challenge the status quo in any meaningful way.

There is a controlling side to neuro-affirmation.  A recent article by the Adult Autism staff identifies a long list of things that professionals must do (such as turning down invitations to speak at conferences in favour of autistic colleagues, seeing documents as inherently biased if they aren’t written by autistic people, and always challenging people who don’t use identity-first language). The article also defines clinical goals. The authors state: ‘Fostering a positive Autistic identity should be the number one goal for all professionals working in this area’. There is no acknowledgement at all that this might not be a goal that all clients want. If you get a diagnosis, the identity must come next.

Diagnoses without pathology?

One of the diagnostic criteria in DSM-5 is the most problematic for those who diagnose while simultaneously claiming to reject the pathologising language of diagnosis. That’s because it’s one that you can’t really put a positive spin on. It’s this: ‘Symptoms cause clinically significant impairment in social, occupational, or other important areas of current functioning.’ Demonstrating impairment, as compared to other people, is an important part of the psychiatric diagnostic model.

Many of the adults who are currently being diagnosed are objectively successful, often with their own families and careers. How then, to give them a diagnosis of a significant impairment, when they do not appear to be impaired? The solution, again, is masking. The person says that they feel that life is harder for them than other people, and that they have to work harder than everyone else to hide their authentic autistic selves—and the neuro-affirmative professionals, it appears, accept this as a significant impairment. Thus, highly qualified and successful adults can qualify for a diagnosis that was originally intended for those with serious and enduring difficulties in functioning. It’s a form of diagnostic appropriation.

Meanwhile, that diagnosis offers social benefits. The people for whom this is true are usually diagnosed in adulthood. They rarely have learning disabilities, and most did not spend their education in special schools. Their new diagnosis can enhance their professional profile, where they become an instant expert on neurodiversity. Within a few years, they are giving keynote speeches on what autism and ADHD are really like—at least from their own perspective.

Professionals who have worked for over 30 years in the field tell me that they have felt pressure to get a diagnosis for themselves, because they know it would help their career. An academic told me that she had been excluded from the authorship of a book because it had been decided that only those with ‘lived experience’ should be included. Another told me that her slides for a training programme were checked by an expert by experience who objected to her using the DSM-5 diagnostic terms (ASD) and criteria, as they were ‘deficit-focused’ and ‘out-dated’. They also suggested that she replaced ‘diagnosed with autism’ with ‘recognised as autistic’—hiding the reality of what was happening. These language changes make it impossible to criticise the process of diagnosis, because language obscures the reality. It’s as if they think that by outlawing words like ‘deficit’ and ‘impairment’, the diagnosis will become non-pathologising, without any deeper change at all.

Neuro-advocacy

Another kind of marketisation comes from people who describe themselves as ‘autistic advocates’. They have set themselves up as unregulated experts, promising to explain to desperate parents what autism is ‘like from the inside’. They sell expensive online courses, masterclasses and private consultations and their expertise is explicitly based on their diagnosis and lived experience. Some of them have established themselves as social media influencers, and others have landed book contracts with titles like ‘The ultimate female ADHD guide’ or ‘Unmasking myself.’

Some of these advocates have a novel way of diagnosing autism—they ‘recognise’ people as autistic when they feel a kinship with them. As one prominent figure says in the foreword to Your Child is Not Broken: ‘When I recognise an Autistic person, I recognise strength, I identify someone who has continued on, against all the odds. I see and hear. I sense gentleness coupled with a no-bullshit approach to life. I know I’ve found neurokindred’. In her view, generational trauma, addictions, eating disorders and family violence are all caused by ‘our ancestors not knowing who they are’.

This ‘recognition’ is very powerful. I have been told by several people that they are sure I am neurodivergent. It’s flattering. I know they are saying that they feel a connection with me that wouldn’t be possible if I was ‘neurotypical’. The first time it happened, I really did consider seeking out a diagnosis, ‘just to see’, and then I read through the ADI-R for a reality check. The questions were so far removed from the ‘identity and culture’ which the advocates described that it seemed like another world. Their view of autism is something entirely different to the social, communication and behavioural difficulties described in DSM-5. To them, it’s some essential way of being that they recognise in each other and which liberates them to live their lives in the way that they want. It’s a very uneasy marriage with the psychiatric diagnostic criteria and it’s not clear whether they are talking about the same thing at all.

Because advocates are unregulated, they can say anything they like without fear of comeback. There is literally no one to complain to and no ethical code. Whatever they say goes. One advocate says in her marketing material that the average life expectancy for autistic people is 38—this isn’t true but is terrifying for parents. I’ve attended online courses by a leading advocate where completely erroneous information about autism and very negative perspectives on autism researchers was shared as they were facts. No one spoke up. The atmosphere was definitely not one where questioning was possible.

Advocates lead the strict policing of language use on social media. As a professional, you quickly learn that some things are unsayable, even if they are right there in the diagnostic criteria. Organisations like the National Autistic Society have published guidelines on how people must talk about autism. Language must be ‘identity first’, so ‘autistic person’, not ‘person with autism’. No mention of ‘disorder’ or ‘deficit’ is allowed, even though both those words are hidden in plain sight in the acronym ‘ADHD’. Functioning (high or low) labels are forbidden, since (high functioning, but we can’t mention that) advocates argue that they are used to dismiss the needs of the ‘high functioning’ who may also need support, and to lower expectations for the ‘low functioning’.

While there are certainly drawbacks to labelling people as high or low functioning, I can’t help thinking that it is also a convenient way to hide the reality that the new neurodiversity movement is driven entirely by the ‘high functioning’. When we aren’t allowed to describe reality, it becomes invisible. No one can ensure that the voices of the low functioning are included when we aren’t allowed to refer to a level of functioning. In the US, the National Council on Severe Autism argues exactly that. They are an organisation of parents with children who are autistic and severely disabled. It seems that their ‘lived experience’ matters less than the lived experience of others and they are regularly vilified on social media. Meanwhile, clinicians in the UK Learning Disability services report that it is increasingly hard to preserve resources for those in most need, in the face of assertive advocacy by those whose voices are loudest and most articulate.

If you disagree with some of these advocates, they will take to social media. Large scale research projects have been shut down through vociferous social media campaigns in which it was clear that the people complaining did not fully understand the nature and purpose of the research. I’ve seen pictures of slides from conferences posted for ridicule because they use terms like ‘social impairment’ or ‘risk of developing autism’ (which is considered to imply that autism is a negative thing and therefore is not neuro-affirmative). These are often from presentations by junior researchers, for whom it creates an extremely difficult first experience of presenting at an academic conference.

When a leading UK autism researcher, Professor Simon Baron-Cohen, talked about wanting to break up the ASD diagnostic category (because it is currently so heterogenous that planning research or services is impossible) he was accused on social media of having ‘blood on his hands’. Any narrowing of the criteria would, say campaigners, raise the risk that those who are unable to get a diagnosis might kill themselves. I know of psychologists who have left the field because they say that it’s impossible to do research in this atmosphere. High quality research could generate findings that the advocates don’t want to hear.

Diagnosing your authentic self

So what is this authentic self, that a neuro-diagnosis apparently frees a person to be? Have the cultural constructs of 21^st century Western neoliberal society happened upon a universal truth about what it means to be human? Can the problems and trauma of earlier generations be put down to lack of autism diagnoses, as some influencers suggest? Is it really true that an autism diagnosis is a ‘rebirth’? In neuro-affirming discourse, DSM-5 has ascended to the level of a religious text. Much as a blessing is given by a priest, a diagnosis can be given and a person’s whole life is redeemed. They are no longer ‘broken’, they are autistic.

DSM-5 was not designed to enable people to be reborn. It makes no sense for recognition of the authentic self to require a neurodevelopmental diagnosis. With its reliance on ‘neurotype’ determinism and categories, neurodiversity is a medicalised perspective on the authentic self—and therefore one that can be profited on. Right in line with 21^st century Western neoliberal cultural values.

The neuro-paradigm is extremely powerful. Those who try to challenge it are told that their views are harmful, or that they are ignorant and I am sure that people will say exactly that about this article. Truths have become unsayable—for example, the reality that a psychiatric diagnosis is a matter of drawing a line where none exists in nature, and that some children do indeed ‘grow out’ of behaviours, including those that might get them a diagnosis of ADHD or ASD. Any experienced clinician knows this, but many will now not say it. Instead, they give in to the social pressure to conform. Everyone is spotting ever more autism and ADHD in the people around them and themselves. And once these diagnoses are given, they are life-long. They are a label that sticks, by design. What is ‘normal’ shrinks further every day.

Whilst everyone celebrates these neuro-identities, the medicalisation of ordinary human existence continues apace, thinly disguised as embracing the authentic self. We can’t ask questions about the motivation of those who are selling diagnoses under the guise of recognition. We can’t ask whether a diagnosis really does make you an expert on everyone else who meets the criteria. We can’t ask the bigger questions about the social contexts in which this movement has arisen. And most of all, there’s no space at all in this brave new world for those who prefer to understand their differences without labels. Your divergency must be fitted into a psychiatric category (whether self-identified or not), or it doesn’t count.

All this leads to a climate of fear. Fear of public shaming and of social media pile-ons, of defensiveness and attack rather than reflection. It is this climate that compels me to write anonymously. I hope the readers of MIA and MITUK will be an exception, and will take the opportunity to reflect carefully and critically on the crucial issues raised in this blog.

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Bibliography

Johnstone, L (2022) A straight talking introduction to psychiatric diagnosis (2^nd edn). Monmouth: PCCS Books

Mavir, H (2023) Your child is not broken. (Foreword: Kirsty Forbes) London: Pan Macmillan

Milton, D. E. M. (2012). On the ontological status of autism: The ‘double empathy problem’. Disability and Society, 27(6), 883-887.