How Not to Diagnose Your Child

Editor’s Note: This article originally appeared on our affiliate site, Mad in the UK. In it, an anonymous psychologist discusses the way labels are perpetuated by professionals in an attempt to simplify individual needs for the laypeople who are in charge of providing accommodations—even though those professionals know the labels are invalid and harmful. Saving her own son, Alex, from these labels forms the core of the piece.

The context of this piece is me, my own experience and only that. I approach it through a lens shaped early by my childhood visits to the large psychiatric hospital where my father worked—a place where I had no meta-position and was playfully intruding in a sanitised world of people grouped together by virtue of what were described as ‘mental illnesses’ or ‘mental handicaps’. I knew, of course, that the people I met—young and old, chatty and silent, understanding and confused, stiff and fidgety, had nothing in common with each other but I dismissed the incongruity as we do, when this is all we know.

When I passed through the stargate to professionaldom and became a psychologist, still me but by now playing dress up, something in the space-time continuum fell apart; I found myself in the very group privileged with the right to create the identities—the definitions, the so-called ‘norms’ that position and herd those others.

Confusion loomed. In the ‘learning disability service’ where I worked, people still seemed to have nothing in common with each other and I didn’t dare admit that I didn’t know what ‘learning disability’ was—not really. I knew how you assessed ‘it’ of course, but it still seemed intangible, subjective, married to the shape of resource. What I learned was that ‘being learning disabled’ isn’t a thing to be at all. It doesn’t exist in the concrete way that a broken leg or red hair does. You can’t do a blood test for ‘learning disability’! For some people, their trajectory towards this group did resemble some kind of a relationship with genetics, like ‘being ginger’ or ‘being tall’. But the reality is that the thing that grouped people was not genetics but that the world saw them as different in a similar way to each other, whether agreed, or knew that or not. Actually, it was irrelevant what they thought. It was practical, not real or romantic, but born of hundreds of years of laws, rights, and responsibilities. The remedial stream of life. And, can I say, I hate it.

You go from ‘scoring in the learning disability range’, to ‘having a learning disability’ to ‘being learning disabled.’ And it is complete—your identity handed back to you on the back of a record form.

The theme of all my work, without exception has been ‘power’. We take it away from people in such acts of identity theft and profit from the repercussions of its absence. Just like any neoliberal system…we will tell you what is wrong with you and sell you back solutions to the power we stole in that action. In my own identity as a normal psychologist, I was usually asked why somebody did something that presumably other people didn’t like. Rarely. It was always someone else’s problem that the learning disabled person was doing something wrong, inappropriate, upset, angry or outrageously anti-social. It was conceived to be both naturally resultant of their hereby real identity and something that they needed to change. Intuitively, services whose own identity rested on ‘making a difference’ popped out new marketable approaches that were about, surprise surprise, looking at the person in context. And there was talk of a ‘social model’ of disability but fundamentally, the overarching reality was that we got rich on the back of inequality, powerlessness and distress. If I had given my salary to any one of the people I had worked with, their lives would have been better than any possible intervention I suggested.

I think this is relevant to discussions about neurodiversity and neurodivergence. When I first worked in the learning disability services, there were many people whose files described them as ‘autistic’ but, we used to say it was irrelevant both in terms of its utility in providing access to services and support and in offering an explanation that helped us understand that particular person. Every individual was so randomly different from the next, that ‘knowing’ they were autistic as well as learning disabled helped no one. For all the craziness of the identity defining process I have just outlined, on a day to day basis, we were just joining with the individual in their world—working out how they communicated, what mattered to them, the efforts and styles in which they worked to gain a sense of control and autonomy and how we might be alongside them to find a voice in their particular context. Well, that’s what a lot of us were doing. Some people were just trying to stop them doing it.

And, at some point since then, ‘autism’ morphed and grew. Some would say we dug deep into a world of science and experience and learned more about it. As a constructionist, I would have to be more interested in whose interests it served for the shift in meaning and culture around it to occur. There are many thousands of studies, articles, opinion pieces and personal accounts that nail down the reality of ‘autism’ as it stands in 2025 identity politics, and it would take more than a few pages and one person’s lived experience to do justice to any of it, so I can’t and won’t. But what I can offer is my own experience of the world I grew up in, now a mother who often encounters others nudging each other and asking about my child ‘Is he autistic?’

‘I know you don’t like labelling,’ says my mum whilst whispering to others that my son has ‘special needs’ whenever his name comes up in conversation. We can’t help ourselves as humans in this culture, can we? We see difference, and we herd it. But my view is that it serves no one to keep those fences high and the paddock gates locked. After Alex’s first day at primary school, his teacher cornered me and accused me of not telling her that he had an ‘emotional disability’. I looked at him and he looked at me, and we both burst into tears. His little face was already stained. He had spent all morning under a table whilst forty other children rode wildly round the open plan year group areas on bikes. Ten years later he had found the words and the memories to explain that he had been scared of the ceiling. The same had happened at Charles de Gaulle airport when I had taken him to Disneyland. I found him precariously curled under a glass table laden with champagne bottles and I tried not to calculate the value as I coaxed him out, one hand at a time. but before the context of school, I just thought he was Alex. In fact, before she said that he was just Alex. I saw the teacher in the vets a few months ago and she smiled at me, unaware of what she had almost stolen that day.

We were called in week after week after week as the teachers described what he had done and their ill-fated attempts to stop it. Eventually, they got to know him and he them. They found that if they put a curtain around a table, he could create a den and hide when things got too much. They realised that he often felt safer when they spoke to him about things he liked and understood and we noticed that the way in which he touched the floor multiple times on the school run, was slowly reducing. ‘Excuse me..what’s he got?’ we had been asked a number of times in the first year and we answered honestly. ‘He’s got being Alex. He is Alex.’ We gave him his name and that part of his identity was sticking!

His teddy watched him from the landing every day as our house backed onto the school field and Alex and I imagined the things that his bear would say to help him through the day. Eventually, I forgot about that and teddy languished all day under the unmade sheets, but Alex didn’t forget—he was his Jiminy Cricket and even now, at 19, he sometimes has something to say about how Alex has managed a situation.

When the school funding was cut, the teachers came to us and asked if they could apply for a statement, or an Education Health Care Plan as they were becoming. He was about seven at the time. We asked why and they said because when the teaching assistant leaves, they would find it difficult to engage him in the work. Right now, it was okay but it wouldn’t be. Part of the problem was that the school was built in the 1970s and was open-plan, meaning that boundaries between classrooms and management of noise was difficult to implement. It would involve an Educational Psychology report. They wanted to take a relational / social, structural problem and locate all of it deep inside just Alex’s identity. The problem with being unproductive, young in his play and confused by expectation was not an issue at home. It didn’t live in the Alex in our house. And it wasn’t a problem when the school had enough money. At this point, we felt we had developed a strong relationship with the staff at the school and outlined our joint dilemma.

‘If he doesn’t have the assessment, we can’t find the resource,’ they said and we absolutely sympathised. ‘But his identity is not the currency,’ we stated clearly. An assessment is not ‘panning for gold’, it is creating something that didn’t pre-exist for him. We put our heads together and approached the local authority with the following, ‘We have a shared dilemma—a relational one—between Alex and the school’s resources. Can you help us to solve it by explaining to the ‘panel’ what Alex does in school, why this is a problem for everybody, what the school lacks, and what needs to be offered to make it different again.’ The Educational Psychologist was confused, especially when we let her know that we would oppose the use of ‘diagnostic’ language. The remit, we all clarified, is for you to help the funders to understand Alex and the school. As the people who knew him best (us and the school), we would all go out of our way to tell and show them the difficulties that existed in that context. ‘But the panel will need a diagnosis,’ she said. ‘They are just lay people, who don’t know anything about child development. Without simple explanations like Autism, ADHD and Developmental Disorders, they may not take it all seriously.’

She heard herself back in slow motion and with respect to all in the system, agreed about the nonsense of imagining herself incapable of communicating the issues to a degree that they would understand. The situation was threatening to become one that defined Alex’s whole future identity, for the purpose of persuading local authority employees with no previous knowledge of him, no theoretical, philosophical or scientific general knowledge of human children, to give an austerity hit school, money.

The upshot of the EHCP debacle was that the Educational Psychologist gave a narrative of the situation, Alex, his relationship with the school, teachers, learning and the environment and they declared a need for top level funding. Twelve years on, we have not been culpable in giving our son something he has no choice but to hold onto. We may be culpable of a lot of things as parents, but not that. ‘But’ I hear neuroaffirmative professionals, parents and happy adults say, ‘autism is something to be proud of’ and I am 100% in agreement with the sentiment and the reality of people with differences however they are described, being bloody wonderful, but the narrative misses something. In taking ourselves down the route of having our children officially stamped (putting aside any debate on the validity or reliability of the concepts), we are at risk of herding them into general silos that don’t differentiate, and work against the whole premise of person-centredness that is the intention in the first place. It is the same process that has been in existence for generations in learning disability services. In an attempt to help the world to make reasonable adjustments, we have stolen people’s individualism. The world, like the local authority panel, is simple and likes simple explanations, especially when making big decisions (just look at Brexit!). But humans are complex and how many of us, as parents, in the process of seeking professional branding, can say hand on heart that we know that the final tick in that identity box will always be used to our child’s advantage?

I went on a national course this month. It had been commissioned by the NHS and is being rolled out as mandatory training for every trust in the country. It is autism training, taking a ‘neuroaffirmative’ stance. Every person in the electronic room, had their own positive relationship to the concept of autism yet, without exception, they took the position that the world needs to change, become more person-centred and understanding of neurodiversity. I was the only voice who questioned whether there was an incompatibility between the promotion of ‘professional diagnosis’ and the intention to create a society that embraces, celebrates and adapts to all difference, and not just difference that can be lumped together. ‘We need to demedicalise autism’ the facilitators declared, whilst discussing the work within diagnostic services. ‘I find it confusing,’ I said, ‘there is such a move towards a celebration of difference and empowerment of the individual outside a medical, abnormalising narrative, and yet you promote the notion of diagnosis.’ For the first time in my life, I risked giving my personal account. I had found it impossible to do this before because of my knowledge that it might feel like a personal attack on people who deeply love their children, are working so hard to make their worlds different and often feel criticised in their parenting. But, if I couldn’t speak out here, then perhaps I would never be heard. I spoke as I have written here. And the response….was to suggest that it is a ‘privilege afforded few’ to get their needs met without diagnosis. ‘Of course, we want to get to a position where it isn’t required, but that is idealistic, and we are not there yet.’ They all looked angry and hurt. I felt hurt, for everyone.

And this is where I started to think about ‘internalised ableism’. We spoke a lot about it during the training and the concept reminded me a little of what I call ‘self-prejudice’ in therapy. Only, it is supercharged. Rather than being a default position of not liking oneself or discrediting one’s own thinking, this has societal ‘norm’ jet packs attached. It refers to the process whereby individuals with autism internalise society’s prejudices about disability and accept the idea that they require ‘fixing’. People wouldn’t experience internalised ableism if we didn’t already, as a society, other those people described as autistic. I am in support of social movements and hope that I am wrong when I consider that it is not in the interests of our wider neoliberal culture to shift power from the farmer to the farmed. We can, of course, bring in kind processes to mitigate the harm we’ve already done but it will still happen in the pen with the gates closed. I could have put my son in that pen, but I wouldn’t have faith of him changing the world. And why? Because he would know who he is, and who he is would be less powerful than those telling him who he is. In asking others to authorise his identity, I am potentially putting him in that place.

When we think about the rise in suicide in children with ‘autism’, can we stop and have a proper look around? Whose responsibility is internalised ableism? Are they really in a position to make sense of and fight the dominant narrative of difference, however great we are as parents? This is serious. When we look back, can we see what has happened to others who powerful people have defined? How have they fared? Is it okay to ask if we, in an attempt to do great things to make the world fairer, have actually led our kids down a path to a pen they can never escape, in the hope that they will bash down the fences for everyone who follows?

Each issue leads to another. What also concerns me in relation to Alex and neuroaffirmation, links somewhat to ‘internalised ableism’. Passionate and wonderful activists who are campaigning from within the pen offer the idea that society tells people with autism that they need to be fixed and it is this idea that is frequently harmful and internalised. I agree, I agree, I agree. No one should feel that they are broken, other, less than or unexceptional. The idea that there is a homogenous group of ‘neurotypicals’ who are the standard against which everyone should be categorically judged is absolute nonsense. Who knew, prior to the 1990s that there were two clear categories of humans (the correct, unbroken ‘typicals’ and the broken, but don’t call them broken, ‘divergents’)? None of us! Not until we were told that we were blind to our own neurotypical privilege. In fact, I would go so far as to say many of us believed that it was the incredible vast diversity of skill, thinking and cooperation that allowed humans to evolve to the top of the food chain. But now the movement that shouts for equality is the same one that pushes binary categorisation. It tells us how we must be aware of diametrically opposed positions—those with and those without autism and, I fear, in doing so steals the autonomy it so needs. I will give an example:

I was speaking about an eleven year old I worked with some years ago who carried a diagnosis and identity as an autistic person. This child was desperately unhappy, as all children tend to be when referred to CAMHS (which is where I grudgingly work, by the way). They were lonely, isolated and felt unvalued, despite being amusing and amazingly talented in so many ways. The impact of isolation on the child’s life was catastrophically sad and they avoided confirmation of their worthlessness by moving further away from peers and siblings. It hadn’t always been the case and when they were younger, prior to diagnosis (and presumably internalised ableism) they suggested that they were less aware of their autism and just enjoyed being around other people, though they played differently. The school were fabulous and provided a bespoke learning package in line with neuroaffirmation. The more anxious the child became, the more the child was supported to avoid. During the national autism training, I mentioned my previous work and questioned the unnuanced thinking in the idea that we ‘need to be careful that we don’t impose neurotypical expectations on autistic children’. I spoke about how we had worked together, the child, family and I to help the child to experiment with the idea that the world is not as ‘scary’ or ‘critical’ as they imagined. Was I positioned by my own experience of working with other children? By my training in relationships and systems thinking? Yes, of course I was. And was the child influenced by their experiences? ….Well, according to the trainers on my autism course, ‘probably not’. It was the autism that was the elephant in the room. The child was ‘masking’ and presenting to me (a neurotypical) what I hoped to hear. The hopes they presented were likely, I heard, to be false and for my benefit only and, therefore, harmful. What I should have done was to say to the child, ‘your sadness, loneliness and desire to be with other children is brought about by expectations imposed on you by the neurotypical world. It is okay to be alone, you know.’ Only, for this child and, I would argue, nearly all humans it was not okay to be alone. And what they invited me to abandon were the following sweeping assumptions:

• That anxiety is reinforced by avoidance
• That brains are plastic and we all change over time
• That hope is important if not essential in humans feeling okay.

What I learned from the training was that I am in no position to help others and am insulting and colonising when I suggest that doing things differently might be helpful. They can’t change, but I must. The only position for me in this as a professional would be to say ‘I can’t ever understand your position, but you need to try to teach me and tell me what to do.’ The idea of collaboration in this movement, means passivity on my behalf and not partnership and transparency. Whilst the idea of the child leading is something I feel inclined to agree with, it misses another couple of points (1) this is a child and we are adults with a responsibility to guide (do all children know exactly what they need emotionally all the time?) and (2) they and their families are coming to see us because they want us to help.

When I am confused by the logic of these definitions, I try to take a couple of different perspectives—one temporal and one zoological. My mum, the one who whispers about special needs, said something I valued the other day. She was a primary school teacher for many years. She offered this pearl, ‘I have taught hundreds of children and not two of them learned in the same way. There would always be one or two we had to teach radically differently… But, we didn’t ever think that they were disordered, even the ones with special needs.’ Were those children my mum failed to identify as autistic more distressed, more in need, less understood? Given my experience of working with people for the last two and a half decades, I don’t think so. We have described, defined and herded groups throughout history on the basis of philosophies and characteristics that served the powerful political and structural system of the time. At those times, those understandings were sensible to the majority, if not absolutely essential. Why do we, in this era of capitalism, think we are infallible now? Most people would agree that the concept of neurodiversity will change but many would say ‘diagnoses’ are essential and pragmatic in helping young people. I can’t agree, though I get why people believe that, I really do. The world appears to be structured that way. So for all the reasons I suggest, I think we need to clean our glasses and see that we are not empowering young people by reducing their identities and the short term relief of ‘knowing’ what they have, is outweighed and meaningless without the offer of hope, expectation of change, creativity, power and equality.

We have a limited repertoire of behaviours available to us to communicate. We don’t use sonar, or independently emit electrical impulses and we don’t generally expel noticeable emissions. We can only do what we can do so we are bound to do similar things for different reasons. Take the parrot in the cage pulling out its own feathers. It has a limited way to communicate what is not okay for itself. If it did the same thing over and over, turned away from everyone but its master, and struggled to move from its food bowl even when it was empty, would the first thing we hypothesised be that it may be neurodiverse? Is that an insulting comparison? I hope not, because the point I am making is that we would look at the parrot in context. We would seek to understand its particular experience and we would likely think, ‘there are only a limited number of things parrots can do, so I wonder what is going on for this one.’ Our first feeling would not be one of relief that we have identified it as the same sort of parrot as the one next door. Humans have a limited repertoire of behaviours and so, what is to say that one person’s reason for doing something or experience of doing it has any connection whatsoever with another’s or that it won’t change? When we use circular reasoning—‘why is he doing that?’ ‘its because he is autistic’…what makes you think he is autistic—‘he is doing that’, we learn nothing—we understand nothing. Alex touched the floor over and over on the way to school because he was scared, because he knew what it would feel like and that was comforting and because it dragged out a worrying journey. And he did it because it made things feel better the last time, so he felt he needed to again. Not because he had a condition. Neither a floor touching condition nor an autism spectrum disorder. Just because he felt he needed to right then. He doesn’t now. He hid under the table in the airport because he was worried the sky would fall down and he would be upside down. He doesn’t think that now, though he feels a bit creeped out by a big stairwell. Why did he feel like that and most young people don’t? I don’t know and never will do. I may gently hold a story about his early life, a story about his birth, but all of that suggests that he ‘should’ have been something else or that his way of thinking about world isn’t quite what should have happened. But that’s not true or, more importantly, useful. He was who he was, he is who he is and he is not yet who he will be. Life will take care of that. I don’t have either the looking glass nor the arrogance to believe I can predict his future.

While I work in this norm-infested landscape I try to mitigate the harm created by dominant, slick and marketable ideas about who children are and what they are capable of. I also believe it is important not to tell children and parents that their already rubber-stamped construction of identity is wrong. That would be harmful. And I am not critical of parental attempts to help their children by seeking expertise and ‘diagnosis’—why on earth wouldn’t a desperate and caring parent living in this culture do that? But alongside them, I do try to open up possibilities within and outside the boundaries of those constructions.

In a world where it is easy to blame everything on social media, perhaps we should consider whether those of us who work within the field of ‘mental health’ and psychology are the content creators. Do we ‘raise awareness’ and self-scrutiny when we educate? Do we encourage children to ask unanswerable questions about things they may ‘have’ or ‘are’ but that can’t be seen or disproved? And do we try to sell back a beautifully acronymed promise of care? Or would we do better to stick our well shielded heads above the parapet and say, ‘Hey, we’re just not going to be part of that?’