In addition, even when a diagnosis is provided, support models too often focus on identifying something “wrong” with an individual and correcting it to be more “normal”. This approach is neither evidence based nor rights-respecting.
This will include a description of the fundamental tenets of the neurodiversity paradigm, and a child-friendly metaphor for talking about neurodiversity. She will finish by describing two novel projects in her own team, which aim to provide schools with the resources they need to deliver this model. One is a curriculum for Learning About Neurodiversity at School (LEANS). This programme provides teachers in primary schools with everything they need to explicitly teach children what neurodiversity is, what it means for them, and what positive actions and attitudes look like in class. A second approach is the Neurodiversity Alliance, a peer support model for secondary school pupils inspired by existing best practice for supporting LGBTQ+ youth. Sue Fletcher-Watson holds a Personal Chair in Developmental Psychology at the University of Edinburgh, and is Director of the Salvesen Mindroom Research Centre.
Hello, my name is Sue Fletcher-Watson. I’m a professor of developmental psychology at the University of Edinburgh in Scotland, and I’m really delighted to have been invited to the Reframing Autism Conference. I’m going to talk a little bit about what I think of the kind of status quo when it comes to how neurodivergent students experience school, drawing on data from the UK that I hope you’ll also find relevant.
I’m then going to propose a neurodiversity affirmative model as a new way of thinking about supporting young people in school and address some of the kind of details of that. I’ll specify, based on that model, what I think a neurodiversity affirmative school looks like in principle. And then I’ll give you two examples from our own work of resources or tools that we can use to actually deliver that sort of vision for a neurodiversity affirmative school.
So let’s just start with a few facts. The first is you know, this idea that while lots of education systems around the world have an inclusion policy, we’re not necessarily very honest about how that fits with the broader goals of the education systems. So while the goal of inclusion is inclusion, the goal of lots of education is really attainment of skills and knowledge, and demonstration of those skills through things like exam results. And also the socialisation of young people into the kind of norms and expectations of the culture that they are a part of, so that they can become, you know, productive members of society.
Now, I don’t think attainment and socialisation are necessarily bad goals, provided that they can be effectively combined with the goal of inclusion. In other words, they need to be sufficiently broad and flexible and open that we can encompass many, many different ways of attaining skills and knowledge and of becoming a kind of a member of society who behaves in an appropriate way for that society without that being a kind of restrictive set of very narrow norms.
But we also know that we are not failing in our inclusion goals and that one reason for that might be because I think we’re not sufficiently honest about the separate goal of inclusion, as distinct from other goals of the education system. So there’s a wealth of evidence that I’m not going to cite exhaustively, that shows that neurodivergent young people specifically are not included at school, either socially or academically, and very often are not physically present in the classroom either.
This kind of exclusion is compounded by intersectional inequalities, because we know that dependent on your social class, or your ethnicity or your gender, sometimes there is unequal access to diagnosis. And in a worst case scenario, exclusion from school, or school experiences early on in life can become the beginning of what’s known as the school to prison pipeline. So ending in some pretty negative outcomes for young people. Many efforts to deliver inclusion are gated by access to diagnosis, which, as I’ve said, is not equally distributed around the population. But what this means is that even when a diagnosis is available, often the inclusion package that’s offered is really centred on that diagnostic label. Autistic children get the Autism package, rather than it being centred on the individual child.
In addition, I think because diagnosis carries with it the baggage of the kind of medical system and associations with disease; for example, whether we use that language or not, that’s sort of inherent in the word diagnosis, and that can lead to a system of post-diagnostic support that really has normative intent. Let’s try and make you a bit more like everyone else.
Just for the topic of exclusion, I wanted to briefly present some data from a research project carried out by our partners in the Salvesen Mindroom Centre. This was an analysis of millennium cohort data, so this is a large cohort of many tens of thousands of young people recruited at birth around the turn of the millennium in the UK. And what you can see here on the left hand side is that whether the case has a learning difficulty, massively increases the chances that they have been excluded from primary school. So this is between the ages of about 10 and 12 in the UK. Those learning difficulties group one is kind of language related difficulties, Group two includes ADHD and conduct disorder, Group three is autism spectrum type disorders, and group four is any other learning difficulty. So you can see that the risk is particularly high for young people in the kind of ADHD and conduct disorder bracket. In fact, that’s an eightfold higher risk of exclusion.
You can also see variability according to ethnicity and gender and the right hand column concerns whether that the person has a history of truancy from school. So if you think about being, for example, a black Caribbean boy with ADHD in the UK school system, it seems almost inevitable that you’re going to be excluded at some point. And I can only imagine that that massively increases if you don’t even have the diagnosis that would allow the adults around you to understand your behaviour.
So let’s think now a little bit more about that concept of diagnostic gatekeeping and sort of normative intent. Think about a fictional young person, Scarlet, she’s clearly bright, but she’s very fidgety, she’s having trouble concentrating in class. Maybe she’s calling out answers when the teacher asks a question and that’s disruptive for the class as a whole. So what happens very often at the moment in the UK, and I think around the world, is that Scarlet might be identified as having some difficulties at school and is referred for a diagnosis. She goes to the child and adolescent mental health services waiting list, she sits on that waiting list for 18 months before being assessed for ADHD.
And I should note that I heard the other day about a region of Scotland where the waiting list for ADHD assessment is currently four years, so 18 months is optimistic. She’s assessed, but she doesn’t get a diagnosis because she’s a girl and we still don’t think that girls have ADHD. So she waits another 12 months to get a second opinion, which does result in a diagnosis. And at that point she’s offered some medication to help her with her concentration and she gets a reward chart at school to motivate her to sit still. And that whole process takes three years.
But think about the alternative possibility, right? What if the teacher felt more empowered to identify Scarlet’s needs and offer support there and then within the classroom; a fidget toy, a wobble cushion, the option of movement breaks during or between lessons.
And what, if in addition, Scarlet went through that waiting list process, because I still think that there is value in diagnosis, but at the end of that process, instead of focusing on the characteristics of ADHD that were useful in making the diagnosis, there was a kind of conscious pivot away from a normative goal, to a focus on thriving. So that might include in Scarlet’s case still being offered those medications, but perhaps not so much the reward chart for sitting still, which has a very normative intent.
Okay, so, I think another part of this pushing back against this kind of diagnosis centred system that we have in schools, is just to take a moment to analyse whether we think actually our diagnostic categories are even valid.
So we can group people according to a clinical set of features, which lead to diagnoses like Autism and ADHD and so on and so forth. We can also in research studies, group children according to their cognitive profile, neurological features, particular genetic features, and each of those groupings has a certain amount of validity in and of itself. But what’s really important is when you look across those layers of analysis, genetic and neurological and cognitive, and kind of diagnostic features, we do not see a kind of mapping across those different classification systems. And also, none of those classification systems necessarily predict kind of real world learning outcomes as well.
So there’s this kind of argument is based on a whole wealth of research; again, I’m not going to cite all of it, but if you would like to look at a really great kind of primer or introduction to this, I can recommend this annual research review and the work more generally of the CALM Team at the University of Cambridge, who’ve been doing really excellent work in this field.
Okay, so just to kind of recap where we are, I think we’ve demonstrated that schools tend to have inclusion goals, but the reality is that neurodivergent people are frequently excluded. Diagnoses aren’t equally available to everyone, but when you do get a diagnosis, first of all, the pathway to that diagnosis can be long and slow; during which time you’re not necessarily getting the support that you need. But also the diagnosis is sort of inherently paired with a normative post diagnostic outcome, and it looks like as well as these practical flaws in our diagnostic gated system, the diagnoses themselves don’t necessarily have much kind of validity when we analyse across levels.
So is there a better way of doing things? Well, neurodiversity offers an alternative model for delivering inclusion in schools. Neurodiversity is the simple fact that we all vary in the way that our brains work, so we take in information, process it and respond to it in different ways. So that’s a fairly simple fact that I think most people wouldn’t argue with, but you can quickly build on that to develop a sort of understanding or a paradigm for how we might apply the idea of neurodiversity in a particular context like a school.
Three tenets of the neurodiversity paradigm are that it is naturally occurring in our population, that no one way of being in the world is inherently better or superior to another, even if some maybe are more common than others. And also that if we want to understand neurodiversity, we need to understand it in the same way that we understand other forms of diversity. In other words, the experience of neurodivergent people is heavily dictated by things like prejudice, stereotypes, stigma, the attitudes and actions of other people. These three tenets are laid out particularly clearly by Nick Walker and her book “Neuroqueer Heresies”. And you can also read a lot of her writing on her website, neuroqueer.com which, is highly recommended.
I would add a fourth tenet, which is kind of embedded into the other three, but I think is worth drawing out independently. And that’s the idea that when we talk about neurodiversity as emphasising strengths, I think we should be talking about those strengths at the collective, rather than the individual level. So it’s about the fact that we all bring a different perspective and an idea of the world to the table. And those differences between us enrich our collective experiences and also lead to strengths when it comes to things like problem solving as a group for example.
Some of you might want to talk about the idea of neurodiversity with children and young people, and I just wanted to take a moment to share this tree-based metaphor that we’ve used previously, that we think is a really nice way to think about neurodiversity.
So what we’ve got here on the slide is three apple trees. You could think of them as the kind of equivalent of neurotypical in this metaphor because they’re in the majority. And we also have a palm tree, a willow tree, and a cherry tree. So we can see those four elements of the neurodiversity paradigm laid out in these trees. First, it’s really clear that the variation between the trees is naturally occurring. You would never suggest that a willow tree is a kind of aberrant or dysfunctional form of an apple tree; it’s just different. We can see that all of those trees have equal value and crucially, whether or not they’re thriving is going to depend on whether they’re in the correct environment for their needs. So the palm tree wants nice dry soil and sunny weather, the willow tree wants to be planted in nice kind of wet soil next to some water. And so, the thriving of the tree depends on its needs being met, and that’s a great way to talk about young people, about how it’s okay to have your needs met and to need different things to meet your needs than perhaps someone else does in your classroom. We can also see our majority status here, the apple trees and our minority or divergent status. So the cherry and the willow and the palm are all kind of divergent within this little woodland that I’ve created on the slide. And we can also see individual level differences, so each apple tree is individually unique, but we can see how it’s also useful to categorise them as a group of apple trees in order to understand their profile of needs. Finally, we can see the kind of strength that we have in diversity. This group of trees produces a rich and varied biome. You could try and plant only apple trees if you wanted to have an orchard, for example. And that might be great if all you want to do is produce lots of apples and make lots of money. But the reality is actually that biodiversity enriches our world, and so that’s what we should be trying to achieve. And that’s one of the ways to remind ourselves about the strength in diversity.
Okay, so I also just wanted to briefly address some kind of myths about neurodiversity and really talk about how we can make sure we’re using the idea of neurodiversity in a fully inclusive way. So the first mistake that I think is often made, is to think of neurodiversity as a synonym for special educational needs, or whatever is the equivalent terminology where you are based. So, thinking about our neurodiverse students as being a subset of the whole student body, as opposed to recognising that actually what we have is a neurodiverse school. And that term neurodiversity encompasses every pupil at the school. And this helps us avoid using the language in a very kind of us versus them way. So when we are talking about neurodiversity, we’re talking about a flexible learning environment that works for all of the students in the school.
So I also wanted to kind of flag this idea of collective strengths. I think it’s sort of step one is to recognise that neurodivergent people have strengths and talents that may be characteristic of their particular diagnostic group, or maybe may not be. But actually we can go beyond that to think about the differences between us as a source of strength and talent. We think we can also start to reflect on our notion of strengths and talents. To what extent when we talk about talents, are we talking about things that lead to good grades and high income in the future? Maybe we need to expand that definition of strengths and talents. And if you really want to go to the top level and have your mind blown, then I think it’s worth analysing whether the concept of strengths or talents is relevant at all to the notion of just valuing every human being equally and respecting them equally, regardless of what they are able or not able to do.
The third part of making sure that we use neurodiversity in a fully inclusive way, I think is recognising that needs are rights. These two things are not in conflict with each other. So all too often, I think that people hear when you talk about a kind of rights-based framework that’s about respecting and affirming neurodiversity, meeting people’s needs without judgment, what they hear is, ah, okay, so what you’re saying is neurodivergent people are just a little bit different and they don’t need any extra support or help. But actually, what I’m saying is that people might have needs that are not being met in the classroom and they may need to request particular kinds of support to meet those needs. And that doesn’t mean that they have any less value. They have a right to have their needs met, as all of us do. And the fact that their needs are not being met because their needs are not commonplace, for example, is not a cause for judgment or pity or restriction of access to support.
Okay, let’s reflect on where we’ve got to then. So we’ve outlined how I think maybe there’s some things wrong with the status quo and that neurodiversity might provide us a way of having a new framework for delivering inclusion in schools. So I’m just going to talk a little bit about what that looks like more specifically. So aligned with the four tenets of the neurodiversity paradigm, I think there are four elements of a neurodiversity affirmative classroom. So because neurodiversity is naturally occurring, our classrooms should expect heterogeneity; that understanding that pupils in the class will have a unique way of viewing the world and a unique profile of needs, needs to be built into our education system through things like universal design principles.
We are rejecting normalisation because no one way of being is better than another. Because neurodiversity operates like other dimensions of equality and diversity, we need to be making a commitment to push back against stigma and stereotypes and prejudice beliefs. And we need to respect and make use of pupil expertise in order to capture the strength that comes from diversity.
Just to dig into that in a slightly more detailed way, expecting heterogeneity is about being vigilant to stereotypes, based on gender or ethnic norms. Like the idea that girls are not Autistic, for example. Remembering that even if someone has a diagnosis that might not be the only label that could be applied to them. And also remembering that lots of people who might be neurodivergent might not have a clinical label to correspond with that. And that means working hard to deliver universal design and make resources as freely available as we can.
Making use of the expertise of our pupils is about creating an environment where neurodivergent people can be out, can be themselves, actively cultivating pupils to have self-knowledge of them as an individual and access to their community; for example, their wider Autistic community. Rejecting normalisation by separating the features that we use when we define a particular group, such as the characteristics that lead to a diagnosis of Autism, from the kind of goals for thriving and flourishing that we might have for an individual. So we are focusing on facilitating thriving, rather than correcting someone onto a more typical pathway.
And finally, we want to be collectively fighting stigma. So we can do that within our classroom and our school, but also we can use our expertise and our position as community leaders politically, as well as in education; working not just with the people in our classrooms, but with their parents and siblings in broader communities to challenge assumptions about particular groups like Autism. Okay.
So let’s just finish up now then with thinking about some kind of practical tools that we might use to apply a neurodiversity affirmative model in school.
I’m just going to highlight a couple of projects that we’ve done or are doing here in my group at the university.
So the first one is the Neurodiversity Alliance and this is led by Francesca Fotheringham, and, if you’re interested in the project, you can follow it on Twitter. There’s the Twitter handle just there.
We know that there’s lots of evidence that Autistic people get particular kind of benefits out of spending time with other Autistic people, which has led us to be interested in kind of peer support models for supporting people as adults and as teenagers in school. We did an interview study initially, which suggested that actually this should be broader than just a peer support model for Autistic people but should instead be for all neurodivergent pupils at the school.
We set these goals based on those interview data that the group should foster a positive outlook on neurodivergent identity, create a sense of belonging in school, and help develop shared self-advocacy and also academic skills, through sharing top tips and so on.
We went into a co-design process with neurodivergent educators and also a group of neurodivergent young people in secondary schools, so teenagers. That was focused on understanding the kind of principles of neurodiversity that we wanted to base the peer support group on, how we could create flexibility in both the format and focus of the group, and what kind of benefits they wanted to see for the community.
So that co-design process led to the creation of a new model. It’s very much inspired by existing provision for LGBTQ+ youth, which is often about bringing people together so that they can be themselves and have a kind of community of peers within the school, which is probably where they’re probably in a minority.
We’re now conducting a mixed methods evaluation in three schools. So I don’t have results to show you yet, but it is underway.
So how is this neurodiversity affirmative? Well, it expects heterogeneity by being inclusive of everyone, regardless of their diagnosis; including allies who identify as neurotypical. They’re also welcome at the group. It rejects normalisation by focusing on sharing knowledge between neurodivergent people and creating a sense of belonging within the school, of community. It fights stigma by bringing people together and fostering a sense of pride. And also actually, we’re finding that many of our trial groups are using the group to do things like campaign for change in school policy and procedure. And it respects and makes use of pupil expertise both in the sense that the model itself was co-designed by young people, but also the groups, as I’ve said, uplift pupil expertise by having a role for campaigning and leadership within the school.
The second example I wanted to tell you about is the LEANS project that stands for Learning About Neurodiversity at School. This has been led by Alyssa Alcorn, and you can follow her on Twitter and get news about the LEANS project, specifically using this hashtag.
This is a focus on addressing the environment that is created by other people’s attitudes, knowledge, and opinions, which is obviously a big part of whether or not a particular classroom or school feels inclusive.
What we are doing with LEANS is teaching about the concept of neurodiversity as a whole class in primary school, so this is children aged about eight to 11. It’s very distinctive from support models that are based on identifying and separating neurodivergent young people from their class, in order to receive specialist support. Instead, this is about uplifting the knowledge and perspective of the whole class to the benefit of everyone.
As with the Neurodiversity Alliance, we had a very open participatory design process, that was focused on identifying both the learning objectives for LEANS and the specific activities that would be carried out within it. And this led to the creation of a comprehensive resource for primary schools. It was evaluated in eight classrooms across four schools, with a particular focus on feasibility and also outcome for young people who had taken part in LEANS. And there was a particularly strong focus on checking that there was no evidence of any harm being caused to young people or to teachers by virtue of carrying out the LEANS program.
The LEANS program has now been published, it’s completely free to download. There’s a handbook and a whole range of supportive materials for teachers to print and use. We’ve also created a parent pack so that parents can recommend LEANS for use in their child’s school. And we’re building a LEANS champions network of expert educators across the UK, who can promote and support LEANS. LEANS is available globally, but if you wanted to do a cultural adaptation for the part of the world that you are in, or a language translation, then we’d encourage you to get in touch because we’re keen to facilitate that.
So how is LEANS neurodiversity affirmative? It expects heterogeneity by being accessed by the whole class. There’s no filtering or selection process in terms of who gets access to this curriculum. It rejects normalisation by teaching about neurodiversity, rather than selecting and teaching neurodivergent pupils particular skills that are supposed to make them fit in better or achieve better. It fights stigma by directly addressing the knowledge, attitudes, and the actions of people in the classroom. And it makes use of pupil expertise based on its participatory design roots. It also has a whole book of stories that accompany the main resource, that showcase respectful practice and uplift authentic pupil stories.
I’ll just finish with some take-home messages. I think we’re not delivering on the goals of inclusion. Neurodivergent kids are literally excluded from school and I think practitioners need new ways of working that can maximise well-being and participation. I think the neurodiversity paradigm offers the basis for a new way of working, and I spent some time defining and exploring that. And also specifying what I think a neurodiversity affirmative classroom would look like.
In terms of how we create those classrooms, it has to be based on collaborative and co-produced and research-evaluated resources, but also on joining forces to campaign for change.
I’ll finish just with some links and reading that you might find useful. Thanks very much and enjoy the rest of your day.
The Reframing Autism team would like to acknowledge the Traditional Owners of the lands on which we have the privilege to learn, work, and grow. Whilst we gather on many different parts of this Country, the RA team walk on the land of the Birpai, Awabakal, Wattamattagal, Whadjak, Amangu, Bunurong and Kaurna Yarta peoples.
We are committed to honouring the rich culture of the Aboriginal and Torres Strait Islander peoples of this Country, and the diversity and learning opportunities with which they provide us. We extend our gratitude and respect to all Aboriginal and Torres Strait Islander peoples, and to all Elders past, present, and emerging, for their wisdom, their resilience, and for helping this Country to heal.