Transcript
We are the Association for Child and Adolescent Mental Health, or ACAMH for short. And this is ACAMH learn. Welcome to mind the kids. I'm Dr. Jane Gilmour, honorary consultant, clinical psychologist, and child development programme director at UCL. And I'm Umar Toseeb, a Professor of Psychology at the University of York, focusing on children and young people's mental health and special educational needs. In each episode, we select a topic from the research literature. This episode is going to be a little bit different. Umar and I are going to explore an important topic and think about it with some depth and breadth that I think will be very interesting. At the end, we'll leave you with some takeaways for academics and practitioners. Today we'll be discussing diagnoses and education in young people. This episode is called special educational needs, to label or not to label. That is the question. So we recorded this podcast on the week that it was announced that the education white paper, which we were expecting to be released in the autumn, has been delayed until early 2026. So please just bear that in mind when you're listening to this episode. So, Umar, I am going to kick off and ask you this question, and I suspect you're going to have a lot to say about this. So perhaps you could lay out your ideas on diagnostic labelling. Yeah. So I will start by saying I take an extreme view on this topic, because I think sometimes someone needs to take an extreme view so that people then start to think about what we just accept as-- I want to say normal, but what-- if we take an extreme view, then it gets people to question our existing practise and think, well, why is he taking that extreme view. Even if I don't necessarily fully agree with the extreme view, I think it's important to communicate that and then it gets people to think about it. So I'm going to put forward the case for-- we should scrap diagnostic labels altogether in education setting. So what do we mean by diagnostic labels? We have four groups of difficulties. So we have communication and interaction, which is things like speech, language, and communication needs. Second one is cognition and learning. So that's things like dyslexia or specific learning difficulties. And then the third one is social emotional and mental health difficulties. So we're familiar with those on this podcast and things like emotional difficulties, behavioural difficulties. And then finally, we have sensory and physical needs, which are visual impairments. So those are the categories that the government under the SEND code of practise define, and used to define difficulties that manifest in schools. But they don't necessarily neatly correspond to what we usually talk about. So we'll talk about depression, anxiety, ADHD, autism, et cetera, et cetera. So the question is, well, why do we have different categories for different contexts? Why don't we have a shared language? Why don't we have the same word for a group of difficulties that exist? And I would argue it's because the difficulties that exist and the way that we categorise them is not an inherent reality. It's not an innate reality. It's just different people using different phrases to characterise groups of difficulties as they exist in that context. And I would go as far as to say things like ADHD are behavioural manifestations of difficulty. And that has developed over time when they present in clinical practise. So in your practise. And over the years and decades, people are like, oh, I'm seeing these kids in practise. This is what they are presenting with. And then you talk to someone else, and you talk to someone else. And there's a consensus that these kids have ADHD. But actually ADHD is not, for example, is not a coherent label. There are lots of subtypes, for example. And you could have two kids with ADHD who have different profiles. Go on, Jane. Yeah. I was going to say-- and I like your provocation, and I do. I think you have to take that position of extremity, as you say. And so if you can't defend your position, if somebody comes in with an extreme, you know, tell me-- tell me where this is from first principles, then your theory has no basis usually. What I did notice, and I think this is so important, is that shared language. And I think that is fundamental. And I think that comes-- one of my questions would be that dismantling of the diagnostic system means we lose that shared language. Now, your point about different contexts, having different language is a valid one. And I would take that. But I guess-- so for example, the DSM system. And we'll come on to its imperfections in great detail, I'm sure, in a moment. But that's an internationally recognised language. And so it's almost a shorthand for a young person to say, this is the challenges I have. Maybe the positives that I've got to offer the world. And a large proportion of our global population would be able to recognise that. So caution with dismantling language. It's our shorthand, yes. Imperfections, yes. But a communication strategy to allow young person to be understood somewhat. Keep going. This is fantastic. I know that. So what I would take issue with that is having that universal language like we do in the DSM. What does that mean in education settings? So a child who is autistic. What does that tell us about their challenges and struggles within the education system? And actually, probably very little. Like it doesn't tell us what they are specifically struggling with within an educational setting. It might tell us that they have differences in social interaction that might impact on their communications at school. But actually, that would be different for different kids with-- different autistic kids. Similarly ADHD. What does that tell us about what that child is struggling with at school? And there isn't any correspondence. And I think what I'm trying to argue for is, if we can just scrap labels, even just in the education settings, and think about the child in front of us. So I don't-- like let's just put aside that this person has ADHD-- child has ADHD. Let's put aside that this child is autistic. What is it that they are struggling with at school in front of me? And then how can we support that child? I mean, and look, so that comes from a position of wanting to have a more nuanced provision for each individual child, which I think, is definitely a positive. And I don't think there's anybody in our context that would argue with that. But I guess, if we go to a needs led, instead, system there would be a long list of needs, presumably, for many young people. And there's no parsimony to that. The concept should be somewhat a diagnosis. Because if I have a list of 10 needs, which will probably be the case. If we're thinking of the way that most of these conditions co-occur with other needs, then I am-- I've got a list of 10 needs that I have to carry with me. The other issue that I have with this, and you may be able to answer this very neatly, is the degree of conveyed need. Now, the horrors of DSM, and everyone agrees that dichotomous system is a blunt instrument, and it's poorly-- it doesn't reflect either the empirical data nor what we see in front of us. But when a clinician makes that diagnosis, there is an implicit idea that there is impaired function. So this young person can't get access to their home in school, activities, because of autism or ADHD. So it's got a pragmatism in it. How would the needs led system be delivered? Let's say, I've got an attention need. Is it on a scale of 1 to 10 or is it major, minor? How would it-- how would it convey to me as a clinician, or a teacher, or parent what the degree of need is? So I think that the first point that you make around-- you could have 10 things that the child is struggling with or that we need to have a huge grapple with. But that is the nature of human beings. Like you can't-- I think the argument against labels is that we're reducing that level of complexity to a label, and actually we have to accept that there-- what we have is a child with a profile of strengths and challenges. And you might hear teachers or parents describe some of this as spiky profiles. So you've got lots of stuff going on. We got lots of strengths over here and some challenges over here, and a bit of orchestra over here. And that is the reality of lots of children and lots of human beings. And I think my thinking around this is that the world exists like that in a fluid, messy state. And what we try and do with labels is to put people into boxes. And that in itself is very difficult. Now, how would we support-- so if we went away from this, how would we then support that diversity, and those spiky profiles? And I think this is where this combination of universal approaches combined with targeted approaches comes in. So if-- we currently have an education system that works in a very specific way, and then children with special education needs fall out of that system. And then they were like, OK, so these children are struggling with education or learning and education engagement. So they have a special educational need. Now, let's try and target support towards them. But actually, what if we made the education system much more inclusive and accept that lots of children in a classroom, in a school, in this country will have a special educational need as the system is set up. And I think the statistic is something like-- I think it's like 30% to 40%, I think, of children will have a special educational need at some point in their school career. So a large proportion of children will have a need. So then we should be designing the education system with that in mind. So things like, universal design for learning, for example. So acknowledging that there will be autistic kids in your classroom. There will be kids with ADHD. There will be kids with dyslexia. And it's not a minority. Lots of kids will have stuff. So then we design the curriculum. We design the assessments. We design the pedagogy in a way that is inclusive of those needs. And then fewer people will fall out of the system. So fewer people will need that special educational need. And then the ones that do, you can then target provision towards them. I think that-- I was going to just say-- Keep going. So your second question, I was going to ask you a question. So I've been thinking about this. So the social model of disability it suggests that special educational needs, or neurodiversity, or neurodevelopmental disorders, whatever you want to call it, is not inherently disabling. What's disabling is how society is set up. So if we can alter people's environments, then ADHD might not cause functional impairment, or autism might not cause functional impairment, and these kids will be able to access school in the same way as other kids who don't have those conditions. And I would agree with that. I would go further and say, if we think about what-- if we consider what we know about gene environment interactions. So how genetic propensities interact with the environment when it comes to lots of needs like cognitive functioning, for example. I would argue that the question is philosophical. I think that's the right word. Do these needs exist if there is no functional impairment. So if we change the environment, and we make school more inclusive. And one of the criteria would be for a DSM diagnosis for some of these conditions would be functional impairment. Now, if there is no functional impairment, because the environment has been changed, then does that child still have ADHD or is that child still autistic because there's no functional impairment? So what is this then. And also there is no functional impairment. But also a lot of these conditions are behavioural. So it's like you have to show certain behaviours in certain context. But if we change societies those behaviours don't show and don't manifest. And there isn't a functional impairment. Then is that child still autistic? Does it exist? And I think-- I mean, I think increasingly this is going to be the debate of our time, because as we get better at identifying and measuring neurodiversity, as we have better access to treatment in some degree. I mean, we were far behind. As people start to identify their own level of need, the proportion of people who have-- even if we use the old systems-- who would fulfil criteria for a neurodevelopmental condition is getting larger and larger. And so the idea that neurodiversity will be the minority, I think will be an old concept. But that is, of course, it's just the same way as biodiversity. I always say this. You need biodiversity for the planet to thrive. And in the same way, we need neurodiversity for society to thrive. And so the idea of having a different brain type or having a different approach to life, I think we'll be left behind as a condition or a disorder. And I think that's part of our move, our general global shift to inclusion, and acceptance, and awareness of-- which I think is a positive thing. I think the issue is that, of course, there are continuum. So that young person who has a sensory issue and a social communication need, let's say. Who's environment has shifted so that they aren't challenged day-to-day. But in certain situations we'll feel overwhelmed. Or that young person who is at the far end of the continuum, and even if the environment is shifted, they still have struggles. Those young people will be left behind, I think, and won't be supported in a particular way. Look, I think it is a really significant challenge. Does that need-- does that disorder exist? And it is a philosophical question. But I also-- I'm a real pragmatist and slightly utilitarian. And I think thinking about whether we shift philosophically and probably empirically, and correctly, but how does that impact on young people who have a significant level of need? Do they become-- do they become-- because presumably, they will be the more extremely affected young people, will that somehow bring us back to the situation where you have kids with additional needs and they are separate and excluded? So it does feel like a philosophical question, as well as an empirical one, as well as a clinical One. I think that my other thing is around when we label like-- so let's just say that in a world where we've made all of these social adjustments, and we've accommodated, and we've designed learning to be inclusive, and we've designed a world that's inclusive, that's no longer functional impairment and behavioural manifestations of these conditions don't happen. But we still agree that ADHD exists. Let's just assume that autism exists. Then the issue of at what point does normal embedded like-- Typically developing often maybe. Is that a thing anymore? Is a distribution, right? It's a distribution. Exactly. So it's a normal distribution. And that has to come a point where someone decides, or there's a clinical judgement, or there's a consensus that this is the point at which typical developing becomes abnormal. The problem is that changes. So a good example in my view is ADHD. So in previous iteration of DSM you had to have a certain combination of symptoms. But I think the age of onset was before the age of seven, I think it was. And now in the new version of the DSM, it's the age of 12. So there's a whole host of kids who wouldn't have-- under the previous definition had ADHD, and now have ADHD. And so the point is that what is normal, what isn't abnormal, widens and changes. Sorry, go on. No, I was just going to say because I think-- I do think that that commentary about ADHD is a great example. It's a really well selected one. That who fulfils criteria shifts depending on the social and cultural context. Think about the-- I think it was in the '80s. I think it was DSM III was the edition in which homosexuality was removed as a psychiatric disorder. Now, the only thing that had changed is a cultural context in that nothing else had. And so the DSM has certainly been very vulnerable to cultural and social shifts, but so has everything else. If you look at the literature, the empirical literature. I believe you could look at the trends in terms-- and I mean that in a statistical sense, not the social sense-- in terms of the series of data that's published on a particular topic, which allows us to stand on the shoulders of giants and get funding particular topic, and therefore we become well versed and explore that particular topic. And that is a sort-- because we are a social group. We respond to one another. So I do think there are good examples of why DSM has fallen, and ADHD in the context of DSM is probably at the very intersection of the vulnerability. But I also think that everything has that context. The language we use. We've talked about cohort effects. I'll use a particular phrase, and you'll use a different one. And that's what makes us human beings. It's a symptom of being a human being, I think. I think it's interesting you've raised the point of homosexuality because I think it helps to make the point that I'm trying to make. So it went from being a disorder to not being a disorder, and something that society accepts. But there's still that group over there is gay. But now we have an umbrella. So we have LGBTQ plus. But actually, I think in the consensus, the accepted view in the scientific literature is that sexuality is a continuum. And actually, what we thought was the other-- like what we thought was abnormal and gay and is not even that Black and white. Like that other group of people doesn't exist. We are all on that continuum. And I think that I would argue that also applies to all aspects of human functioning. So when we think about mental health, and I say this to my students in the first lecture that we do in child and adolescent mental health is, we need to be thinking about mental health, not as those people over there have mental health difficulties, and we don't. Everyone experiences some level of mental health difficulties at some point in their life, and it might be to a greater or lesser extent. It might be more severe or less severe than other people. But it is not that group of people over there who are experiencing mental health difficulties. And I would say we need to be thinking about neurodevelopmental conditions, special educational needs with the same lens. It is not those people over there who have ADHD. Those people over there who are autistic. Those people over there who have dyslexia or mental-- But can we hold-- because I mean, I wouldn't argue with any of that. The idea that, these features-- for want of a better expression-- are part of our society. They're there to a greater or lesser degree. And by using a diagnostic system where that's just forcing a nuanced profile into an unnatural shape. Yes and-- the idea that we have no parsimony in that description is important, but we can have that position and that understanding. So, for example, I could use a list of different words that try and get across how I'm feeling right now. And then I might have to choose one to say, right now I am feeling this. So I have to pull together while I'm understanding that there's nuance in my emotional temperature, and I feel to a greater or lesser degree this. I have to choose a word to stand for how I feel. And I think that's OK. I can understand the nuance behind that. And I can understand there's more to be-- it's almost like-- the diagnosis is a hypothesis. I need to think about what the needs would be behind that. And that's almost like a position, a societal position, which I think we are moving towards. I don't think we're there yet. And you can still have a word that stands for something. It's a bit like, we talk about culture quite a lot, and I think it's a really good kind of equivalent there. So we talked at the beginning, and I'm a Scottish person. There's some things that might sit with that stereotype. Some of them probably are true, and the others will not be. So if we talk about bullying, it brings out the Glaswegian in me, and I become very passionate. But, I am more than somebody who's just Scottish. So those cultural labels that can sometimes be used in a very warm way, not just a negatively stereotyped way, but we also understand that I'm more than just a Scottish person. So that you know it's not that. So I don't know why can't we have both? I want it to all, Umar. I want the value of the communication that I think diagnosis brings in the shorthand way understanding it's imperfect. And I want that positioning that you're talking about in terms of knowing that every individual is different. And these features are within us all to a greater or lesser extent. So I'm going to take you on a journey. I'm ready. So it was like-- I'm going to answer that question. So in I don't know, 2022. So I saw this paper in the JCPP and it was the annual research review by Duncan Astle. And I think-- what was it called? It was called The Transdiagnostic Revolution in Neurodevelopmental Disorders. And what they report in that review, and what they try and describe is that lots of diagnostic labels like ADHD, developmental language disorder have common cognitive processing difficulties, for example, or phonological processing difficulties. And actually, what's common across these conditions-- there's a lot of things and the labels don't describe the difficulties. So from that, I was like, yeah, that makes sense. So the labels that we use to describe people's profiles don't accurately capture their strengths and challenges. So like you, I was like, OK, so the label-- maybe we just need a better label because labels are helpful. So how about we think about-- how about we accept that these labels need to exist because we need a shorthand to describe someone's profile and have that shared language. But the ones that we have aren't perfect and aren't great at doing that. And these are all the reasons why they're not. So let's try a different way. So what we did was-- at the beginning of this conversation, I talked about consensus. So I said, labels like ADHD would have come from children presenting in clinical practise. And then lots of experts going, oh, I'm seeing these children as well. And then there'd be no consensus about it. This is what ADHD is. And I would say that's a human-driven approach informed by data. Now, I want you to flip that on its head and be like, well, how about we do a data-driven approach informed by humans. So let's do-- get all of these underlying strengths and challenges irrespective of their labels. So let's think about cognitive functioning. Let's think about language. Let's think about social functioning, anxiety, depression, symptoms, conduct, problems, et cetera, et cetera. Don't think about the label. Just think about what the strengths and challenges are and then do some data-driven analysis. So put these into some statistical models and see what the data says. What does the data tell us? What do the models tell us around how these things cluster? Because then what we will have is not human beings saying, oh, this combination of things is ADHD. But the computer saying, well, this combination of things seems to cluster together population. And that's what we did. And we're about halfway through that work. And what we're finding is the data-driven diagnostic labels that we were like, let's try and find a different way to describe people's children's strengths, and challenges. They're just a different set of labels. They don't map on to autism. They don't map onto ADHD. The kinds of things that we come up with are, I don't know. 10% of children in primary school will have reading difficulties with behavioural problems and the other 3% will have difficulties across the board on social emotional functioning. And then there's this small group over here who will have some depression symptoms, nothing else. And it doesn't map on to anything that we recognise. So my point there is, we had this human driven, data informed approach, which is what the DSM and I would say is. Then we've got this data-driven approach that we tried, and we just get a whole different set of labels, which probably-- and we haven't tested this yet, but probably are equally imperfect. They have their own challenges. So my view is it doesn't matter how you slice the cake, you're always going to have imperfection, and you're always going to have imperfection in how we describe children's strengths and challenges. So then my answer to that is let's just be done with them in school. [LAUGHTER] --is going to be imperfect. And-- I think it really reminds me of a time when I did a school visit, and it was just when the phrase special needs had been developed and introduced to provision systems, let's say. Now, there have been a series of other labels that had been used in the past, and these were obviously pejorative, and special needs was the phrase that were-- the preferred phrase. I walked across a playground to see a young person, and of course, it was a young person who was being identified. But a bunch of kids shouted at this identified child, special needs. So in other words, instead of saying a pejorative word, it was they used the word of the moment. There was no argument with that. But the point is, it was conveyed in a pejorative way. So I think your point is, it doesn't matter what the label is. The point is they can be misused. But I want to come back to the idea of humanity. You said human beings versus data. Data schmata. I mean, I do love my evidence, but let's think about the humanity. Because I do think the idea of a diagnosis has some pros that are inherently human in their utility. So if we think particularly about young teenagers, and I do lots of work with young teenagers, and one of their tasks, their developmental tasks is to form an identity. And if we take a needs led approach, we have that list of 10 needs, let's say, that they're dragging around. That can't be that-- that's harder to assimilate into their identity formation because I think-- and the reason I'm saying seeing this, I'm not suggesting that it should be an overwhelming part of identity, and I'll come to that in a second. But my persistent and consistent experience that if a diagnosis is delivered in a positive way, that young person and their family often think and it convey this emotionally. Oh, that's why. Oh, now I understand. And it's such an empowering sense of-- it's such-- got such explanatory power that is really powerful. The other thing that related to this is that sense of belonging that's particularly important for teenagers. Teenagers need to find their tribe. And in this way, they often find their neuro tribe in a way that a list of needs can never touch. And it moves away from that deficit model and allows that young person to be understood. Having said that, I also know with that identity issue that young people, as part of their typical process, will potentially overidentify or completely reject an identity. So this will vacillate between the two. So let's say I have ADHD. ADHD explains everything I've ever done, said, or thought. So the reason I didn't get invited to that party is because I have ADHD. So it closes down curiosity. And that's not a positive. Or the young person-- or sometimes that same young person can say, do you know what? I don't want to have ADHD. I'm going to try out the neurotypical coat and see how it fits. And so I'm not going to tell anyone in my new education system, typically, college, that I have ADHD, and I'm not going to take my medication if that's implied. And that might work for them, but it also might put them in a situation where they're pedalling so hard to appear neurotypical that it can be, have impact. So I think the idea that a label can be-- particularly for those in the teenage phase of life-- can be something that's very powerful. But we've also got to be aware of that vacillation. I think the other thing, and we're going to talk just very briefly I think about EHCP and the potential shake up that might be there-- is as things stand, that diagnosis is one of the few things that will move an EHCP forward. It unlocks resources and understanding. So let's think about the EHCPs. What are your thoughts on that? And I'll tell you what mine are in a moment. So EHCP is Educational Health Care Plans. Thank you. Before I go on to that-- Let's not use that label. Let's unpack that and go near-- [LAUGHS] --heaven forfend. Can I just-- to pick up on something you said just now, which is, all of what you're saying, I can see. I can understand where you're coming from. I think my concern is, if we carry on down this road of diagnostic labels. And we talk about diagnostic labels, it comes from this. The whole concept of diagnosis, in my understanding, comes from this medical model approach. And I think the problem with that is you situate the problem within the individual. So you're saying to a child, you are struggling with this because you have ADHD. Now, we might then caveat that with oh, well, that's a social model of disability. But to a child, they are struggling because they have ADHD. There's something wrong with them, inside them. You see. I think-- no. No. No. No. I just won't take that. No. No. No. No. This is about the delivery. Some of the things you've told me about today, they are sometimes described as-- so I talk about behaviours. It's a little bit like expressed emotion. So if I say, you are lazy. That's a hostile comment. That's embedding in that person. But I might say the way you did that today was a bit of a challenge in terms of speed. See, I'm fettling very hard there. But you can see, I'm talking about the behaviour there that maybe we need to pick up the pace. So if I deliver-- if I say you've got ADHD, and that's a problem for me in the way that I'm messaging that, or even if I say to that person, I'm so sorry to tell you, the doctors have looked at all the questions that you and your family have answered. And I'm sorry, but you have ADHD. There is a message in there. You've got the problem. That is a problem. Instead of saying, the things you told me can be described in this way, and one of the things we can do is use that to think about how we can change things at home, at school. And I know what you're saying, but I would argue that the delivery is absolutely fundamental. And I think our shift in society is catching up with that. Delivery is not you, it's the behaviour that you are showing. Which I think your data, I think having read that very, very good paper, which you sent me, that data led approach does support things will change, and it will shift. But it's behaviour led rather than-- what's the word? Person centred, if that's right. I think so, yeah. I think my ongoing concern would be-- ongoing question would be respective of how it's delivered, irrespective of you as a clinician and your excellent communication, and delivery skills with the child, what does that child actually internalise going away from that consultation-- then in their everyday life, in a school, or in their interactions with their peers. And I think that's the bit that I'm more concerned about. But we don't know. I'll take that because I think it is-- a label can be powerful and empowering or it can be pejorative. And I think that can work both ways. Absolutely take that very carefully. Good point. EHCP. So Educational Health Care Plan. So this is children who have a special educational need, been identified in schools, but their needs can't be met by existing provision. And there needs to be additional support put in place. So then-- if I'm not wrong, it's a legally binding document which sets out the legal rights of the child in terms of support. And then there's a statutory requirement. And I think there's some additional funding attached to it, which is why it's now become a problem for the government, because lots more children are getting an EHCP. Well, in 2019, 295,000 EHCPs were issued. In 2023, shall we guess? Do you want to guess how high-- how high should we go? 295,000 in 2019. Oh, so this is-- you're putting my math skills to the test. Do the maths with you. So in 2014 to 2024, I think there was a 90% increase, if I remember those numbers. So from 2019 to 2024, I would say are you up to 400,000? Yeah. I'm very impressed. You win. 435,000 in 2023. So it does-- your question about whether it's philosophical, empirical, or financial I think is pertinent. Yeah, I think so. And I think that what-- so we go back to that question. If we accommodate these children's needs, then what-- can we reduce the reliance on EHCP. Because EHCP is your needs can't be met by existing provision. But if we amend and adjust existing provision universally, then more kids needs would be met by existing provision. Therefore, the need and the reliance on EHCPs, people would need them less now. My understanding-- Surely your thesis is each individual child has a portfolio of need. So actually, a specific EHCP for each individual child that has a level of need. Does that not imply-- because if the environment is generically positive. Yes, absolutely. But children have different spiky profiles, so the environment can't be the same for each child. It can't. But what I'm arguing is that the current system is set up for a very specific group of children who excel academically, and we try and push everyone into that path of doing things. And actually, if we set the system up, so it wasn't just targeted at that narrow group of children, then more people's needs would be accommodated within that. So therefore, there'd be less need for those. So you'd have fewer people-- fewer children falling out of the system, because the system wouldn't be as narrow. And I think the argument around EHCP-- so we'll see when the white paper-- the schools white paper comes out. But I think it's all speculation. So we don't know what's going to be in the white paper. But there was some suggestion earlier in the summer that EHCPs were going to be scrapped, and there was lots of uproar and protest against that, because those were the legal protections that those vulnerable children were granted. The government seems to have gone quiet on that. They quietly drop-- or it was maybe it was never been considered seriously, and then it just became a thing. We don't know what happened. But in any case, our view is that even when it was a possibility that was seriously being considered and allegedly, we don't know. I would argue that actually the way forward would be to reduce reliance on EHCP by making the system more inclusive rather than scrapping them. And then that's a longer-term strategy rather than-- from next year we're no longer going to have these. I mean, look, a rising tide lifts all boats. So if we improve the environment, the likelihood is-- and the truth is that any teaching process, let's say, for a young person who's got an additional need, will benefit all young people. So if I unpick, let's say, analogies or for a young person who's got autism that improves everybody's English language understanding. If I use novelty. If I say-- I always say to teachers, use novelty, get the kids to turn round and face the other way in the classroom, and teach from the back. Just switch it up. That's great for every kid. And the kid with an ADHD like profile will engage better. But my problem, I think, with EHCP is partly the way they're written. I get involved in doing these, and I read a lot of these. And very often they're so badly written that actually they've become meaningless. So when the additional provision is described, you need to be really specific about what, who, when and how much provision is required. So access to additional social communication support means absolutely nothing. I want to know who's giving it. I want to know what that is, and I want to know how often it's given, and where it's given. And so you have to find your inner pedant when you're writing an EHCP. And I also think the other issue is that they should be embedded in different subjects. So a science lab is very different from, the history classroom. And the needs that a different child will be very different depending on that. And that very often is not delivered. I also would pick some priorities. I pick my top three and make those the changes rather than a list of 10 because they get lost otherwise. But look, I do think the-- I do-- I mean, it's interesting that it has gone quiet because I did read the press and you sent-- I think you sent an article. I found an article. I can't remember which one it was. Apologies, Umar, if you sent me it. You're talking about the rumour that it might disappear. So that white paper may appear. It may not. But in any case, we can still improve our-- and maybe this is my thesis. We can improve our use of the existing system, whether that's EHCP or not. Shall we think about our takeaways. What's your deliverable on this front? Is there a really-- there's a lot here. There's a philosophical stance. There's an empirical issue. What's your takeaway from an academic point of view? I would say from an academic point of view-- and I don't think this is new for anyone in the academic sphere anymore, which is we need to be thinking about children's strengths and challenges, even in research studies, beyond labels. Like it's really easy as a researcher to be like, oh, I want to investigate the difference between autistic and neurotypical young people because those data sets exist, those variables exist, and can do that. But actually, what does that actually-- what does that tell us about the population that you're trying to investigate? We don't know. So rather than thinking about what's the difference between autistic and neurotypical, what's the difference between autistic and ADHD children? It's thinking about their broad difficulties in this transdiagnostic way. Other challenges as well as difficulties. So moving away from this diagnostic label focused research projects. But we all do it. We all do it because it's easier to do that. But we need to challenge ourselves. And I do it as well. So I'm not saying-- I'm not judging people. I'm like, I do it to. And with dissertation projects, I would suggest that autistic and neurotypical populations. So over to you, Jane. Well, look, I think you argue a path. I think you argue a very good point. And I absolutely accept theoretically and empirically, I think there are major flaws in the system. And I also argue, yes and-- that for the young people and children and families that are on the receiving end of these labels, if-- and it's a big if, I grant you they're delivered optimistically and realistically find real therapeutic value in these labels. So at the beginning, we said to label or not to label, that's the question. And I would say that's my answer. Fantastic. Thank you so much, Jane. I really enjoyed that conversation because it's-- and it's nice because you really talk to somebody who doesn't-- maybe I don't know what your view was coming into this, but it was nice that you acknowledged, challenged in a respectful way. And then we're like, OK, let's think about this. So it was really nice. So thank you. Yeah. No, it was good. I really enjoyed that. I think we should do more of these. And because apart from anything, it's so good because we're in-- this is at the heart of I did this data. And it made me think theoretically like this. And I say, well, here's how the take from a clinical point of view, because it really is. Because theoretically and empirically, yes. There is no debate. The question is-- as they say, the real world-- I hate that expression-- as opposed to the unreal world. But yeah, yeah, that was good. I enjoyed that. I really hope you enjoyed that conversation as much as we did, and specifically, I did. I love talking about this stuff. So if you enjoyed it as much as we did, please leave a review or a comment, and also share with your friends and colleagues and subscribe to our page. [MUSIC PLAYING]

Mind the Kids - Special Educational Needs to Label or Not to Label? That is the question

Duration: 42 mins Publication Date: 29 Nov 2025 Next Review Date: 29 Nov 2028 DOI: 10.13056/acamh.13783

Description

In this episode ‘Special Educational Needs to Label or Not to Label? That is the question’ Dr Jane Gilmore and Professor Umar Toseeb address the nuanced and complex issue of diagnostic labels within education. Together, they delve into whether the use of diagnostic labels such as ADHD, autism, and dyslexia should continue or if it is time to reconsider their role. The discussion explores the challenges and benefits of these terms, as well as the deeper philosophical questions surrounding how such classifications shape understanding, support mechanisms, and young people’s identities. They examines the current framework used: communication and interaction, cognition and learning, social, emotional and mental health difficulties, and sensory and physical needs. It considers the impact these labels have on children’s educational provision and inclusion, weighing them against a potential shift towards a needs-led system that might allow for a more personalised and human-centred approach. Drawing from both professional experience and current research, the conversation reflects on the delicate balance between the necessity of shared terminology for effective communication and the risk that such labels may oversimplify complex individual needs or contribute to stigma. This episode invites listeners to reflect on how best to support neurodiverse young people within education, ensuring their unique strengths and challenges are both recognised and respected without losing sight of their individuality. It offers fresh perspectives for academics, practitioners, families, and educators alike on the practice of diagnosis, its effects on young people, and the possibilities for creating a more inclusive and supportive educational environment.

Learning Objectives

1. Should we scrap diagnostic labels altogether in education settings?

2. Gain insight into why understanding individual needs are crucial for effective support and why a shared language is important for communication and understanding.

3. Recognise that the social model of disability emphasizes the role of the environment and how the education system should be designed to be inclusive of all needs.

4. Explore how labels can reduce the complexity of human experiences and why EHCPs are essential for providing legal rights and support for children.

5. Examine how data-driven approaches can provide new insights into children's challenges and how the delivery of a diagnosis can significantly impact a child's self-perception.

6. Understand why philosophical questions about neurodiversity are becoming increasingly relevant.


About this Lesson

Symptoms:

none

Speakers

Jane Gilmour

Jane Gilmour

Consultant Clinical Psychologist at Great Ormond Street Hospital, and Course Director for postgraduate child development programmes at University College London

Professor Umar Toseeb

Professor Umar Toseeb

Professor | Research Centre Leader Psychology in Education Research Centre Department of Education University of York

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