On Neurodiversity - Part One
Let's change the language around neurodiversity away from the deficit, medical
model - so argues Associate David Hodgson in part one of his blog on this
First things first, what isn’t neurodiversity?
Many students will have additional needs that do not fall under the ‘neurodiversity’ banner. These might include one or any combination of linguistic or English as Additional Language needs, cultural differences, gender/sexual orientation issues, physical and sensory differences such as a stammer, medical conditions following accidents or illness and epilepsy, global ‘severe’ learning difficulties, social, emotional and mental health needs for example eating disorders, phobias, depression, post-traumatic stress disorder, bereavement and more.
What is worth bearing in mind is that many neurodiverse people may have additional needs too.
By the way, on the subject of what neurodiversity isn't, the term ‘neurotypical’ has been used to describe people who are not neurodiverse, but it is a controversial and disputed word so probably best left alone.
So, what is neurodiversity?
In a nutshell, all of humanity. Let me explain with a true story.
In 1945 Cleveland Health Museum purchased two statues from the American Museum of Natural History, New York, ’Normman (that’s the correct spelling) and Norma’ by artist Abram Belskie and obstetrician Robert Larousse Dickinson[i].
These statues were based on the average measurements of 15,000 men and women (white American citizens aged 21-25 years). One of the points of this exhibit was to show how USA health standards were improving. In previous centuries, with high rates of infant mortality and malnutrition, having a ‘normal’ or ‘average’ child was a positive and reassuring label for parents to attach to their child. ‘Normal’ meant all was well.
(The exhibit also had another, a more eugenicist, purpose too. Check out this Time story for more on that.)
When the museum then ran a competition to find an Ohio woman whose body matched to Norma’s dimensions they drew a blank. Despite nearly 4000 entries, no woman was ‘normal’ on every measurement.
In other words, natural variation in the human population is inbuilt.
Aspiring to an idea of perfection or normality by comparing people to other people – a strategy much beloved of advertisers, politicians, social influencers and eugenicists - is deeply flawed.
Yet it still persists.
Although this is a story about bodies in 1940’s America, it could equally apply to brains in the 2020’s Britain where all children not only have to be average, hitting certain developmental targets within a spurious 12-month timeframe, but also above average according to Michael Gove’s famous logic.
Principle 1: We are all different. This is fine. We can all offer something. We can all strive to reach our own goals and potential.
OK, makes sense, thanks for the history lesson. Now give me a definition of neurodiversity I can work with:
Neurodiversity is the term mostly used to describe ADHD (Attention-Deficit/Hyperactivity Disorder), ASC (Autism Spectrum Condition), Tourette’s, Dyslexia, Dyscalculia and Developmental Co-ordination Disorder also known as Dyspraxia.
What’s more, it’s important to understand how these terms describe experiences that cover a range - or spectrum - rather than referring to one specific ‘condition’.
As for the numbers, organisations representing neurodiverse groups identify:
- There are up to 10% of people with dyslexia and 6% of people with dyscalculia[ii].
- Dyspraxia affects 5% of school children (2% severely)[iii].
- There are around 1% or 700,000 people in the UK with Autism Spectrum Condition[iv].
- There are around 5% of people with ADHD[v].
The numbers are often disputed. Campaigners think they underestimate the true extent, as definitions evolve and awareness increases. What is clear is that the numbers of young people and adults given a diagnosis is increasing. For example, the numbers of children with a Statement of SEN in Hampshire has trebled in the last decade[vi], which puts pressure on mainstream schools to provide appropriate support as these figures are reflected across the UK.
Now, tell me how my thinking needs to change?
According to Victoria Honeybourne, a teacher, trainer and author diagnosed with Asperger’s in her 20s (these days, the label ‘Asperger’s' is no longer a form of diagnosis and has been subsumed under the wider ASD label. Note too that ASD is the diagnosis. ASC is what the neurodivergent person lives with) the prevailing paradigm around neurodiversity is a Medical Model[vii].
This model is founded on the premise that people with differences are viewed as having something wrong with them. For example, homosexuality was considered an illness, treatable with drugs or therapy until fairly recently (and still is in some places).
That said, for funding and diagnosis the medical model is still important to schools.
There are, however, other more supportive and useful models of difference we can apply, models that move us from looking for ‘problems’ inside an individual to considering the external barriers which restrict those with differences in school and beyond.
For example, in the Social Model, we identify and remove the barriers that stifle equality of opportunity. In the Affirmative Model we take things further by incorporating and valuing the lived experiences of those with differences. In this way they can be strong, angry and proud of their positive contributions, not grateful recipients of pity. The para-Olympic movement has shifted the debate around physical differences towards this affirmative model.
What’s more, the Rights-Based Model aims to challenge those in power to change law and society to end discrimination.
What these non-medical models have in common is that they move away from the idea that difference is something wrong with an individual to one that reveals difference to be something that is structurally imposed by who or what sets the rules (advertisers, Hollywood, town planners, exam boards, politicians, car designers, architects, fashion houses...).
Principle 2: Teachers need to be aware of all models of diversity so they can offer appropriate support to individual students. School policies and classroom practice need to reflect the needs of all students.
So, where do we start?
I was speaking to a teenager recovering from the aftereffects of the removal of a brain tumour after he had asked me to work with a newly-formed group of survivors[viii].
Something he said struck me deeply:
“We want to be measured by what we can do, not what we can’t, defined by what we bring, not what we have lost.
Although grateful to the medical experts who had saved their lives, this amazing group needed now to focus on the qualities and dreams they retained.
This young man’s plea reveals a path that can help schools through all the noise around neurodiversity.
Principle 3: The school response to neurodiversity must be positive, focusing on how all of us can become better and the important contributions we can all make in life.
What can we do in schools?
One of the problems with the prevalent and unchallenged medical model is that we are quick to reach out for labels, diagnoses and even medication to make children ‘more normal’.
This was a concern for clinical psychologist, Dr David Keirsey, who was working with teenagers 1970’s California, young people we would now classify as NEET (Not in Employment, Education or Training).
He argued for the need for a more flexible education system and developed a behavioural-based approach based on understanding key personality differences and offering behavioural strategies to the young people involved[ix]. He did not deny the existence of ADHD, but was concerned about the dangers an incorrect diagnosis could create. Indeed, correct diagnosis with correct medication can have a very positive impact in the lives of those with ADHD and their teachers and family and the proliferation of online questionnaires, information and self-diagnosis influencers suggest this is still a prescient concern.
I have incorporated the essence of Keirsey’s model into the approach outlined in my own work with school staff and children for over 30 years. In essence, Keirsey suggests we should look to expand the range of behaviours available to individuals, by developing four key skills in the important areas of learning and in life in general.
In part two of this blog I will outline what these the four key areas are and how, when we build these into the curriculum in an inclusive way, all young people benefit.
[i] ‘The Normal Body on Display’ Elizabeth Stephens, Researchgate.net, 2017
[ii] British Dyslexia Association bdadyslexia.org.uk
[iii] Dyspraxia Foundation dyspraxiafoundation.org.uk
[iv] National Autistic Society Website autism.org.uk.
[v] ‘A Teenager’s Guide to ADHD’ from ADHD Foundation adhdfoundation.org.uk
[vi] Steve Crocker, President of Association of Directors of Children’s Services and Director of Hampshire Children’s Services, speaking on Radio 4 Today programme, March 2, 2023.
[vii] Honeybourne, V (2018), ‘The Neurodiverse Classroom’ Victoria (Jessica Kingsley).
[viii] Success Charity, success.charity.org.uk
[ix] Keirsey, D (1984), ‘Please Understand Me II’ (Prometheus Nemesis Book Company).
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