Leading on neurodiversity in a secondary school

... I’m most excited about a new focus for September: I’m going to be Neurodiversity Lead.

Neurodiversity lead

I’ve been a secondary school Lead Practitioner for a few years now. In my setting, that means responsibilities within faculty — CPD, support, curriculum — alongside a whole-school responsibility. In the past, this has seen me run the house system and the student council, but I’m most excited about a new focus for September: I’m going to be Neurodiversity Lead. This role will have two broad strands:

1. Supporting our neurodivergent students in all aspects of school life

2. Giving staff the knowledge they need to effectively work with neurodivergent students.

In order to do both of these well, I need to know what I’m talking about. This post is a brief overview of a slice of the research I’ve done so far. It’s not exhaustive; if you’d like to read more for yourself, check the reference list at the end. It’s also not going to go into the particulars of the two strands of my new role — I’ll likely write more about that once the role is properly underway.

Neurodiversity and neurodivergence

In order to speak about things, we need to know the language. The terms neurodiversity and neurodivergence are frequently misused and confused. An excellent article from Walker (2014) sets this straight. In short, neurodiversity is the diversity of human minds. This is different from the neurodiversity paradigm, which is a specific perspective on neurodiversity, rooted in the disability rights movement. Essentially, its position is that:

• Neurodiversity is natural and valuable

• The idea of one ‘normal’ or ‘healthy’ mind is a ‘culturally constructed fiction’ no more valid than there being a ‘normal’ or ‘right’ gender or ethnicity, for example.

• ‘The social dynamics that manifest in regard to neurodiversity are similar to the social dynamics that manifest in regard to other forms of human diversity’. Neurodivergence is ‘having a mind that functions in ways which diverge significantly from the dominant societal standards of “normal.”’ (Walker, 2014)

It’s not possible to be ‘neurodiverse’, because it takes more than one thing to be present before there can be any diversity between things. A neurodiverse group of people would include both so-called neurotypical and neurodivergent people.

We’re still finding our way around some very new language. Oppressive hegemonies are built of and around language, and, as Audre Lorde wrote, ‘the master’s tools will never dismantle the master’s house.’ A new paradigm requires new language, and this takes time to figure out. We don’t just use language; language makes things happen. Such performative utterances mean that we have to get the language right if we want to create more equitable classrooms, and a more equitable world.

Naturally, neurodiversity etc. has had a fair share of backlash. For an article that argues that the neurodiversity ‘movement’ (i.e. paradigm) has become ‘harmful’, see Costandi, 2019. For evaluations of the claims and critiques of the neurodiversity ‘movement’, see Jaarsma and Welin, 2012 and Russell, 2020.

If you’d like to go back a bit further, the term ‘neurodiversity’ was first used, as far as I can see, in Judy Singer’s thesis Odd People In: The Birth of Community Amongst People on the "Autistic Spectrum" from 1980.

Autism

When we’re talking about neurodiversity and its associated topics, we’re often talking about autism. I won’t therefore repeat any of the above, but I would like to sketch out a few core ideas about autism as it is currently understood.

The first thing to note is that contemporary autism research is increasingly following the disability rights movement. That is, it tends to spurn objective medicalisation in favour of subjectivity and social constructionism. This means that recent research has shifted from neurotypical researchers studying autistic people from the outside, to a more interactionist bent to the literature, in which autistic people themselves are the driving forces behind research and activism. The rallying cry of the social constructionist view of disability, as spearheaded by Mike Oliver, among others (see Oliver, 2013) for his reflections thirty years on from the birth of the movement) was and is ‘nothing about us without us’. (Chown et al., 2017) proposed a framework for inclusive autism research which centres the autistic voice and perspective based about this same mantra.

Theory of mind

Perhaps the most important paradigm shift within autism research saw the rejection of the ‘theory of mind’ hypothesis in favour of the double empathy problem. Theory of mind refers to the capacity to understand other people by ascribing mental states to them. A theory of mind includes the knowledge that others' beliefs, desires, emotions, and thoughts may be different from one's own. To have one is ‘…to be able to attribute independent mental states to self and others in order to explain and predict behaviour.” (Frith and Happé, 1994, p. 2) It is called a ‘theory’ because the ‘theory’ is one person’s theory about another’s mind; theory does not refer to the idea itself.

The origins of theory of mind can be traced back to Premack and Woodruff (1978). This study asked ‘Do chimpanzees have a theory of mind?’ This was picked up in autism research by way of Leslie’s 1994) research into pretence in childhood play. Leslie was curious as how very young children could play pretend, and yet this pretending did not seem to trouble the cognitive frameworks they were building to help them understand the world as it was. Leslie’s conclusion was that “pretense (is) an early manifestation of the ability to understand mental states” (Leslie, 1987, p. 412) — that is, to have a theory of mind.

But autistic children struggled to pretend. In 1985, Leslie, with Simon Baron-Cohen and Uta Frith, posited that autistic people do not have a theory of mind; that is, they lack the

ability to make inferences about what other people believe to be the case in a given situation allows one to predict what they will do (… which) is clearly a crucial component of social skills. (p.39)

Such a hypothesis is rooted in the ‘triad of impairments’ — the ‘cognitive deficits’ of the autistic mind.

However, in 1994, Utah Frith, who co-authored the original 1985 hypothesis that autistic people could not have a theory of mind, worked with her doctoral student Francesca Happé to look ‘beyond theory of mind’. While the theory held up when autism was considered solely in terms of its triadic features , the authors found that theory of mind couldn’t account for the many non-triad features of autism. For example, the 1985 study didn’t address the common ‘spiky IQ profile’ that’s a common feature of autism — essentially, an all-or-nothing cognitive profile that sees the person incredibly gifted in some areas and struggling greatly in others — and it didn’t look at social interactions, either:

social approach need not be built upon an understanding of others’ thoughts-indeed Hermelin and O’Connor (1970) demonstrated to many people’s initial surprise that autistic children prefer to be with other people, just like non-autistic children of the same mental age.” (Frith and Happé, 1994, p.3)

This changing line of thought, that ‘social approach need not be built upon an understanding of others’ thoughts’, marks the start of what becomes a paradigm shift: Damian Milton’s Double empathy problem.

The double empathy problem

According to Milton (2012), cognitive neuroscience and other psychological paradigms don’t acknowledge the divergence and difference in social reality between autistic people and the ‘neurotypical’. Noticing the double empathy problem allows for exploration of this contested space, arguing that autistic people are framed, assimilated and judged on its terms. Such unilateral judgement, without the input of autistic people, takes us beyond the idea that it is simply autistic people who struggle to understand the world, read its social cues, and correspond to its interactions.

It is not, therefore, that autistic people are deficient and at fault for issues that arise between them and the neurotypical, but rather ‘a breakdown in reciprocity and mutual understanding that can happen between people with very differing ways of experiencing the world’ (Milton, 2018). Judgement of autism from the outside positions the autistic person as a curiosity, a subaltern, to use Spivak’s coinage,

Therefore, if one is to properly understand autism and the people who identity on the autism spectrum, we must:

1. Allow autistic people to play an active part in the codification of what autism is, and what defines its daily experience.

2. Create inclusive spaces for autistic people within society.

3. Stop thinking of and discussing autism using a deficit narrative and deficit thinking; it should never be a case of ‘modifying the autistic person “as best one can” to fit in with the mainstream culture of society’ (Milton 2012).

As the discourse shifts, so must the research methods. Since the adoption of constructivist and interactionist models within research, research has had to change its methodologies. Phenomenology appears to be enjoying a renaissance in this regard, due to its intense focus on subjectivity and the things themselves. Ideas of embodiment and performativity closely related to the work of theorists such as Judith Butler have become the norm, displacing the medicalisation and the pathologisation of autistic people. Phenonmenological analysis has been used in a paper from this year (O’Neill and Kenny, 2023) to explore the experiences of autistic teachers in Ireland, finding, among other things, monotropism to be a core feature of autism for both staff and students.

Autistic teachers

Such a shift has meant that autistic people are speaking for themselves, and it turns out that autistic people are everywhere, though they have often hidden in plain sight. I’ve been especially interested in accounts of autistic teachers, of which there are few, though the field is growing. Francesca Happé has worked a great deal in this field, publishing a book with others such as Laura Crane and Rebecca Wood which draws together many strands of research and testimony from a range of authors connected to neurodiversity and education. Happé and Wood this year also published her findings from a questionnaire aimed at autistic teachers to better understand the diversity of lived experience of these teachers’ daily lives. They found that autistic teachers enjoyed their jobs: they liked the timetabled and ritualistic nature of the school day, and spoke very positively about their relationships with students. Many teachers felt proud that they could be role models for their students. However, there were many negative responses. Many teachers experienced stigma and discrimination, struggling to get promoted (there seems a lack of autistic teachers in management roles) due to an inability (or lack of awareness) of the subtle politics involved in such matters. Many found it very hard to disclose their diagnosis, or have it understood when they did. As a consequence, many autistic teachers mask their autism.

Research into autistic masking, or ‘camouflaging’ is also a relatively novel strand of research, worthy of a post on its own, so I won’t delve too much here. However, the body of research has revealed it to be a widespread phenomenon which, while it can yield some net positives for the masker, can have truly debilitating consequences. Please see the references below if you’re interested in reading more about it.

ADHD

This is another area I’m going to discuss pretty quickly. It’s controversial: a BMJ Head-to-Head not long ago debated the validity of adult ADHD diagnoses, and there are many who don’t believe in ADHD at all. Like autism, ADHD shares differences with focus, executive function, emotional regulation and behaviour. I have found the conditions so similar I wonder if they’re the same; they are certainly highly co-morbid. More and more adults are being diagnosed with ADHD, including a number of public figures. It was recently featured in the New Scientist and seems to be, like ‘trauma’, a rather fashionable concept. However, as someone with ADHD, I find it to be very real. It is inseparable from who I am. I take medication to help calm the cognitive chaos and it has made so much difference. I hope that those who have struggled as I have will get the help they need.

One very recent study bears mentioning quickly. Ornella et al.(2023) has found that high-frequency transcranial random noise stimulation (tRNS), alongside cognitive training, “yielded significant clinical improvements (reduced parent-reported ADHD rating-scale scores) following treatment, compared to the control intervention.” TRNS is a specific form of non-invasive brain stimulation, which sees the brain gently stimulated by electrodes (not to be confused with Electro-Convulsive Therapy!) Early results are promising; see the references below if you’d like to know more.

Teachers with ADHD

Sadly, I’ve been unable to find any literature about teachers — like me — who have ADHD. There seems to be an upward trend of adult diagnosis; perhaps it will take some time for this to filter through. Perhaps many people with ADHD struggle to make it into teaching at all? I know from experience that struggling with executive function can make the job feel impossible at times.

Next steps?

Therefore, I’d like to see much greater representation for neurodivergent teachers. Our students have to see our diversity if they are to feel comfortable with their own. I’m increasingly open about my neurodivergence with my students. So far, it has been very positive. I am lucky to work in a supportive school, too. Perhaps neurodivergent teachers need to meet and spearhead their own brand of research? I love the idea of each school having a member of staff who is a neurodivergent voice within the school for students, to ward off the dangers of the double empathy problem.

There is so much I haven’t touched on, such as BIMS and monotropism. For now, I shall keep reading, thinking and writing. Get in touch if you’ve read this and would like to talk about it: @curtaindsleep on Twitter. DMs open!

References

Asherson, P. et al. (2010) ‘Is ADHD a valid diagnosis in adults? Yes’, BMJ, 340(mar26 1), pp. c549–c549. Available at: https://doi.org/10.1136/bmj.c549.

Baird, A. (2020) ‘Teaching While Autistic: Constructions of Disability, Performativity, and Identity’, Ought: The Journal of Autistic Culture, 2(1). Available at: https://doi.org/10.9707/2833-1508.1040.

Baron-Cohen, S., Leslie, A.M. and Frith, U. (1985) ‘Does the autistic child have a “theory of mind” ?’, Cognition, 21(1), pp. 37–46. Available at: https://doi.org/10.1016/0010-0277(85)90022-8.

Boonstra, A.M. et al. (2005) ‘Executive functioning in adult ADHD: a meta-analytic review’, Psychological Medicine, 35(8), pp. 1097–1108. Available at: https://doi.org/10.1017/s003329170500499x.

Callahan, B.L. and Plamondon, A. (2019) ‘Examining the validity of the ADHD concept in adults and older adults’, CNS Spectrums, 24(5), pp. 518–525. Available at: https://doi.org/10.1017/S1092852918001190.

Chown, N. et al. (2017) ‘Improving research about us, with us: a draft framework for inclusive autism research’, Disability & Society, 32(5), pp. 720–734. Available at: https://doi.org/10.1080/09687599.2017.1320273.

Cook, J. et al. (2020) ‘Camouflaging Behaviours Used by Autistic Adults During Everyday Social Interactions’. Available at: https://doi.org/10.21203/rs.3.rs-96362/v1.

Cook, J. et al. (2021) ‘Self-reported camouflaging behaviours used by autistic adults during everyday social interactions’:, Autism, pp. 13623613211026754–13623613211026754. Available at: https://doi.org/10.1177/13623613211026754.

Frith, U. and Happé, F. (1994) ‘Autism: beyond “theory of mind”’, Cognition, 50(1–3), pp. 115–132. Available at: https://doi.org/10.1016/0010-0277(94)90024-8.

Geffen, J. and Forster, K. (2018) ‘Treatment of adult ADHD: a clinical perspective.’, Therapeutic Advances in Psychopharmacology, 8(1), pp. 25–32. Available at: https://doi.org/10.1177/2045125317734977.

Hupfeld, K.E. et al. (2022) ‘Hyperfocus: The ADHD Superpower’, Frontiers for Young Minds, 9, p. 625433. Available at: https://doi.org/10.3389/frym.2021.625433.

Hupfeld, K.E., Abagis, T.R. and Shah, P. (2019) ‘Living “in the zone”: hyperfocus in adult ADHD’, ADHD Attention Deficit and Hyperactivity Disorders, 11(2), pp. 191–208. Available at: https://doi.org/10.1007/s12402-018-0272-y.

J. Moncrieff and S. Timimi (no date) ‘Is ADHD a valid diagnosis in adults? No’, BMJ Preprint. Available at: https://doi.org/10.1136/bmj.c547.

Jaarsma, P. and Welin, S. (2012) ‘Autism as a Natural Human Variation: Reflections on the Claims of the Neurodiversity Movement’, Health Care Analysis, 20(1), pp. 20–30. Available at: https://doi.org/10.1007/s10728-011-0169-9.

Kosaka, H., Fujioka, T. and Jung, M. (2019) ‘Symptoms in individuals with adult-onset ADHD are masked during childhood’, European Archives of Psychiatry and Clinical Neuroscience, 269(6), pp. 753–755. Available at: https://doi.org/10.1007/s00406-018-0893-3.

Lawrence, C. (2019) ‘“I can be a role model for autistic pupils”: investigating the voice of the autistic teacher.’, Teacher Education Advancement Network Journal, 11(2), pp. 50–58. Available at: https://insight.cumbria.ac.uk/id/eprint/4658/1/LawrenceICanBeA.pdf (Accessed: 6 May 2023).

Lawrence, C. et al. (2021) ‘“Howling at the scrabble-board”: exploring classroom literature from an autistic viewpoint’, English in Education, 55(2), pp. 164–176. Available at: https://doi.org/10.1080/04250494.2020.1801345.

Leslie, A.M. (1987) ‘Pretense and representation: The origins of “theory of mind.”’, Psychological Review, 94(4), pp. 412–426. Available at: https://doi.org/10.1037/0033-295X.94.4.412.

Lorde, A. (2018) The Master’s Tools Will Never Dismantle the Master’s House. London: Penguin Books (Penguin modern, 23).

Milioni, A. et al. (2014) ‘High IQ May “Mask” the Diagnosis of ADHD by Compensating for Deficits in Executive Functions in Treatment-Naive Adults With ADHD’, Journal of attention disorders, 21. Available at: https://doi.org/10.1177/1087054714554933.

Milton, D. (2012) ‘On the ontological status of autism: the “double empathy problem”’, Disability & Society, 27(6), pp. 883–887. Available at: http://dx.doi.org/10.1080/09687599.2012.710008 (Accessed: 6 April 2022).

Moheb Costandi (2017) Why the neurodiversity movement has become harmful, Aeon. Available at: https://aeon.co/essays/why-the-neurodiversity-movement-has-become-harmful (Accessed: 5 April 2022).

Oliver, M. (2013) ‘The social model of disability: thirty years on’, Disability & Society, 28(7), pp. 1024–1026. Available at: https://doi.org/10.1080/09687599.2013.818773.

O’Neill, C. and Kenny, N. (2023) ‘“I saw things through a different lens…” : An Interpretative Phenomenological Study of the Experiences of Autistic Teachers in the Irish Education System’. Available at: https://doi.org/10.35542/osf.io/9vr2u.

Ornella, D.-K. et al. (2023) ‘Transcranial random noise stimulation combined with cognitive training for treating ADHD: a randomized, sham-controlled clinical trial’, Translational Psychiatry, 13(1), pp. 1–11. Available at: https://doi.org/10.1038/s41398-023-02547-7.

Pearson, A. and Rose, K. (2021) ‘A Conceptual Analysis of Autistic Masking: Understanding the Narrative of Stigma and the Illusion of Choice’, 3(1), pp. 52–60. Available at: https://doi.org/10.1089/aut.2020.0043.

Perry, E. et al. (2022) ‘Understanding Camouflaging as a Response to Autism-Related Stigma: A Social Identity Theory Approach’, Journal of Autism and Developmental Disorders, 52(2), pp. 800–810. Available at: https://doi.org/10.1007/s10803-021-04987-w.

Russell, G. (2020) ‘Critiques of the Neurodiversity Movement’, in S.K. Kapp (ed.) Autistic Community and the Neurodiversity Movement: Stories from the Frontline. Singapore: Springer, pp. 287–303. Available at: https://doi.org/10.1007/978-981-13-8437-021.

Salehinejad, M.A. et al. (2020) ‘Transcranial Direct Current Stimulation in ADHD: A Systematic Review of Efficacy, Safety, and Protocol-induced Electrical Field Modeling Results’, Neuroscience Bulletin, 36(10), pp. 1191–1212. Available at: https://doi.org/10.1007/s12264-020-00501-x.

Silberman, S. and Sacks, O.W. (2016) Neurotribes: the legacy of autism and the future of neurodiversity.

Singer, J. (1998) Odd People In: The Birth of Community Amongst People on the ‘Autistic Spectrum’. University of Technology, Sydney.

Tamm, L. et al. (2021) ‘The Association of Executive Functioning With Academic, Behavior, and Social Performance Ratings in Children With ADHD’, Journal of Learning Disabilities, 54(2), pp. 124–138. Available at: https://doi.org/10.1177/0022219420961338.

Walker, N. (2014) ‘Neurodiversity: Some Basic Terms & Definitions’, Neuroqueer. Available at: https://neuroqueer.com/neurodiversity-terms-and-definitions/ (Accessed: 20 August 2023).

Wood, R., Happé, F., et al. (2022) Learning from autistic teachers: how to be a neurodiversity-inclusive school. London ; Philadelphia: Jessica Kingsley Publishers.

Wood, R., Crane, L., et al. (2022) ‘Learning from autistic teachers: lessons about change in an era of COVID-19’, Educational Review, pp. 1–23. Available at: https://doi.org/10.1080/00131911.2022.2103521.

Wood, R. and Happé, F. (2023) ‘What are the views and experiences of autistic teachers? Findings from an online survey in the UK’, Disability & Society, 38(1), pp. 47–72. Available at: https://doi.org/10.1080/09687599.2021.1916888.