What’s in a name? Neurodiversity, Neurodivergence, SpLD etc

In 2013 I started a Working Group at the British Psychological Society with other Industrial Organizational Psychologists and we spent an hour trying to decide what to call ourselves.  Though this may seem like typical committee nonsense, naming and labeling is actually very important, as it defines experience. We didn’t want to get it wrong.

This is before the popularity wave of neurodiversity, people still used SpLD (specific learning difficulties) as the umbrella term for dyslexia/dyspraxia/DCD/dyscalculia/ADHD/autism.  Those arguing in favor of retaining SpLD were concerned that terms like neurodiversity lacked public recognition and glossed over the very real difficulties that people had.  Those arguing for neurodiversity felt that SpLD puts too much attention on difficulty and learning, when strengths and lifelong experience are also relevant.  Other terms such as specific cognitive difficulties were mooted. Either way, we recognized the need for psychologists to move with the times and lead the debate.  We noted the paradigm shift in our understanding of neurology, the conditions, the advocacy movement, and the impact of our language occupationally and socially.

Our debate ended as psychologists’ debates must always end – with a survey.  We surveyed over a 100 people with named conditions, and asked them to chose their favorite umbrella term. Protecting the right to self-determination is in the Psychology code of ethics, people have the right to name and identify their own experience.  We also asked for ideas to ensure that there weren’t any we hadn’t heard of.  We then updated the survey with new terms and re-ran it.  Neurodiversity was the most popular umbrella term both times, an indicator of the popularity of the Social Model of Disability and the work of pioneers such as Judy Singer, who is credited with creating the term (1).

So we moved with the times and called our group the Neurodiversity and Employment Working Group.

However, the meaning of this term is still in debate.  Some people consider that ‘neurodiversity’ refers to the diversity that ALL people have between their cognitive abilities and that those with above named conditions, are neurodivergent.  I see many people in the autism self-advocacy twittersphere using the term and I know people feel passionate about their right to determine their own labels (hence the survey).  So, without wanting to take that right away, and in full agreement to call anyone what ever they like, I’m just going to explain why I’m sticking with neurodiverse for me personally and my work.

So firstly, from a neuro-cognitive perspective, not everyone is neurodiverse.  The term has a ‘within person’ and ‘between people’ meaning.  Within one person, there usually isn’t much diversity in cognitive ability. Most people are fairly homogenously ‘neurotypical’, having similar memory capacity to verbal skills, to visual skills.  Around 2/3rd of the population will score in the average range for all those abilities.  A minority will score above average on all those abilities.  A minority will score below average on all those abilities.  But their scores, if plotted on a graph, will form a reasonably flat line, because there is no diversity within their cognitive ability.

We know this from 100 years of IQ testing.  Conversely, people with above named conditions tend to vary enormously in their capacity – some with exceptional memory skills but poor processing, some with competent visual skills but weaker memory.  This is ‘within-person’ diversity. The diversity between their strengths and weaknesses is statistically significant and measurably so, both using cognitive tests and neurological scans.  Assessing the level of difference between one person’s ability is one of the primary routes to diagnosis of a condition like dyslexia or DCD (2–6).

Secondly, the ‘between people’ meaning. Neurodiverse people are differentiated from neurotypicals because they think differently to neurotypicals.  It is usually here that neurodivergence is offered as a synonym or an alternative to neurodiversity and this context, it is linguistically accurate. However the term has connotations that do not match other forms of diversity and inclusion.  Let me explain.

As an Occupational and Organizational Psychologist, my work intersects between human resources and ‘talent-management’, social inclusion, criminal justice, education, psychological testing.  One thing I have noticed in the massive social awakening about the benefits of neurodiversity is that it is lead by the HR industry.  Educationalists are still talking about SpLD.  Disability campaigners are still talking about how people experiences of exclusion. Xenia Taliotis’ model of inclusion (below) shows us that ‘stick’ approaches, which have been legally mandated in the UK and US for over 20 years have done nothing to improve job outcome rates

  • Compliance based inclusion – we only do what we have to (Equality Act, ADA)
  • Marketing based inclusion – we do what is ‘cool’ and ‘the latest thing’
  • Systemic inclusion – the way things are done around here, inclusion as the norm.

Marketing based inclusion is the new thing.  It’s progress and it is led by the Diversity and Inclusion Agenda, that is a powerful lobby in large organizations – public, private, multi-nationals – where the term neurodiversity is now well embedded (7–12).  I’m renaming it ‘deliberate inclusion’ because when I see it happening, the people involved are usually with honest intentions.  They’re not trying to be cool, they genuinely want to do something about the Disability Employment Gap, which has not moved in the past 20 years despite the emergence of legal protections in most advanced economies (13–15). The most innovative inclusive practices for improving the employment rate of neurodiverse people are ‘carrots’ not sticks.  In this world, no one talks about ethnic, gender or sexual divergence. We don’t say that we have 25% divergent staff in top management following a campaign to improve gender inclusion.  We talk about diversity.  The connotation is the richness of difference and avoiding of ‘group think’, matching our staff diversity to our customer diversity.  We need deliberate, marketing inclusion to raise entry levels of employment and celebrate existing staff so that we can become systemically inclusive, such as the Change 100 program pioneered by Jean Charles Denis, Vice President of Commercial for Europe at the International Hotels Group, partnered with Leonard Cheshire.

In this world, divergent sounds like deviance.  Now, an esteemed colleague once told me that he is happy to be a deviant and so indeed am I, but that word is not going to improve inclusion rates.

The names we chose shapes our reality and drives perception. I’ve always been a deviant in sheep’s clothing, but I am also ever the pragmatist, and as a person with ADHD and an advocate in the occupational field, I am sticking to neurodiversity.  Though since I am also a psychologist, I do plan to run a new survey this year and explore the extent to which stakeholder opinion is shifting in a different direction!

 

 

  1. Singer J. “Why can’t you be normal for once in your life?” From a problem with no name to the emergence of a new category of difference. In: Corker M, French S, editors. Disability Discourse. Buckingham, UK: Open University Press; 1999. p. 59–67.
  2. Ihori D, Olvera P. Discrepancies , Responses , and Patterns : Selecting a Method of Assessment for Specific Learning Disabilities. Contemp Sch Psychol. 2015;19:1–11.
  3. SASC. Guidance on the Assessment of Students with SpLD [Internet]. Student Assessment Standards Committee. 2017 [cited 2018 May 31]. Available from: http://www.sasc.org.uk/NewsItem.aspx?id=58
  4. Grant D. The Psychological Assessment of Neurodiversity. In: Pollak D, editor. Neurodiversity in Higher Education. Chichester, UK: Wiley-Blackwell; 2009. p. 33–62.
  5. Doyle N. Neurodiversity at Work. In: BPS, editor. Psychology At Work:Improving wellbeing and productivity in the workplace. Leicester: British Psychological Society; 2017. p. 44–62.
  6. McLoughlin D, Doyle N. The Psychological Assessment of Adults with Specific Performance Difficulties at Work. Leicester: British Psychological Society; 2013.
  7. Sniderman B. Neurodiversity: A New Talent Opportunity. Forbes [Internet]. 2014 Oct; Available from: https://www.forbes.com/sites/brennasniderman/2014/10/30/neurodiversity-a-new-talent-opportunity/#58ab46271058
  8. Comaford C. Is Neurodiversity the Right Talent Path for Your Organization? Forbes [Internet]. 2017 Jun; Available from: https://www.forbes.com/sites/christinecomaford/2017/06/24/competitive-advantage-why-your-organization-needs-to-embrace-neurodiversity/#62ed8ca63f65
  9. Austin RD, Pisano GP. Neurodiversity as a Competitive Advantage. Harvard Business Review [Internet]. 2017 May; Available from: https://hbr.org/2017/05/neurodiversity-as-a-competitive-advantage
  10. Philipson A. GCHQ employs more than 100 dyslexic and dyspraxic spies. The Telegraph [Internet]. 2014; Available from: http://www.telegraph.co.uk/education/educationnews/11111584/GCHQ-employs-more-than-100-dyslexic-and-dyspraxic-spies.html
  11. Bewley H, George A. Neurodiversity at Work. London: National Institute of Social and Economic Research; 2016.
  12. DWP. Head for Success – In-depth support for claimants with a Mental Health or Neuro Diversity Condition [Internet]. Contracts Finder. 2014 [cited 2017 Feb 2]. Available from: https://data.gov.uk/data/contracts-finder-archive/contract/1375686/
  13. Scope. Disability Employment Gap has barely changed in a decade [Internet]. 2018 [cited 2018 Dec 21]. Available from: https://www.scope.org.uk/About-Us/Media/Press-releases/May-2018-(1)/Disability-employment-gap-has-barely-changed-in-a
  14. NAS. The autism employment gap: Too Much Information in the workplace. [Internet]. London: The National Autistic Society; 2016. 5 p. Available from: http://www.autism.org.uk/about/what-is/myths-facts-stats.aspx
  15. Gerber PJ, Batalo CG, Achola EO. Dyslexia and learning disabilities in Canada and the UK: The impact of its disability employment laws. Dyslexia. 2012;18(3):166–73.

 

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