This week is Neurodiversity Celebration Week. Our Neurodiversity Ambassador, Claire Thompson, has written about the opportunities, and challenges, raised by Neurodiversity Celebration Week.
Annually, many people mark Neurodiversity Celebration Week: a worldwide event with the aims of transforming how neurodivergent individuals are perceived, and supported by, a range of organisations. This year it runs from March 13th to 19th. The campaign - www.neurodiversityweek.com - gives universities and organisations the opportunity to recognise the many talents and advantages of being neurodivergent while creating more inclusive and equitable cultures that celebrate differences and empower every individual.
Well, that’s the blurb. The reality, as shown by my experience of Neurodiversity Celebration Week in 2022, can be very different.
So, how did I spend neurodiversity celebration week last year?
In short, I spent a full week last year highlighting inaccuracies, ableism, shameless hijacking of the day, misinformation, misrepresentation as well as derogatory and stigmatising language. Why? Because, even to this day, it remains necessary to do so.
So, in writing a blog for this year, I had to think about how I might best address this issue without it seeming like a rant. After all, I used to avoid anything related to the week but last year I felt I had to punch out some kind of response via my keyboard to send to a variety of organisations.
Some defended their stance, some arranged meetings to discuss it, some failed to respond. Some took the time to respond to my emails thanking me for pointing things out and asking how they might improve; I cannot tell you how validating that feels.
This year I’m hoping to put a few basics out there in advance instead. I’d like to start with terminology.
Simply put, neurodiversity as a concept is everyone. It was a term used by autistic sociologist Judy Singer, who credits the social model (a way of viewing the world, developed by disabled people) for providing the “framework” of the thesis to explain differences in neurology in the late 90s, not as a descriptor for neurological differences. It’s a biological fact.
“Neurodiversity may be every bit as crucial for the human race as biodiversity is for life in general.” (Blume, 1998).
Neurodiversity as a movement, can be seen as both a political and social move towards the end of marginalisation and oppression by shifting attention away from negative connotations and towards positives. It has been described as a “social justice movement that seeks civil rights, equality, respect, and full societal inclusion for the neurodivergent”. neuroqueer.com/neurodiversity-terms-and-definitions
The concept of neurodiversity doesn’t always align with neurodiversity as a movement due to using terms that the social model might refer to as ‘impairments’.
We could describe a group of people with a variety of different brain functions as a neurodiverse group. Individuals cannot be neurodiverse.
The emphasis is not on the ‘neuro’ but on the ‘divergent’. There is no one definitive list of what it might include. It can include neurological differences such as autism, any mental health condition, or any acquired forms of neurological difference, such as a brain injury.
This can be seen as the predominant neurotype, where the brain functions and processes information in an expected way (the majority).
Identity-First and Person-First Language
The American Psychological Society (APA) has updated their guidance for research. This is an important first step towards having a disabled person’s preferences recognised in academic literature:
- The members of some groups of people (subcultures within the larger culture of disability) have ways of referring to themselves that they would prefer others to adopt.
- The overall principle for using disability language is to maintain the integrity (worth and dignity) of all individuals as human beings.
- Person-first language emphasises the person, not the disability or chronic condition.
- In identity-first language, the disability becomes the focus, which allows the person to claim the disability or chronic condition and choose their identity rather than permitting others (e.g. authors, educators, researchers) to name it with negative implications.
- It can be used as an expression of cultural pride and a reclamation of a disability or chronic condition that once conferred a negative identity.
- It is permissible to use either approach or to mix person-first and identity-first language UNLESS or UNTIL you know that a group prefers one approach, in which case you should use the preferred approach (APA, 2020b).
Individuals have the right to self-identify with any term they choose, and it is important to ask individuals for their preferences. However, outside of individual preferences, training providers, counsellors, educators, etc. in the United Kingdom have a responsibility to respect majority preferences reflected in the NICE guidelines (the National Institute for Health and Care Excellence) and ensure they use the correct terminology.
NICE guidelines note the need to use person-first language but highlight two exceptions, ‘autistic people’, and ‘disabled people’ (published January 25th, 2016, last updated December 18th, 2019). In addition, the National Autistic Society has ‘terms to avoid’ listed on their website, which include:
- Has autism
- Person/child/adult with autism
- Suffers from autism
- High or low functioning
- Treat symptoms
Using a mix of person first and identity first language without explaining why is unhelpful and doesn’t get the message across. If anyone is uncomfortable using recommended terms, based on autistic preferences, I would urge some reflection on the personal reasons behind that.
Neurodiversity Celebration Week and Its Opportunities: A Reflection
So, how can we celebrate the unique strengths and talents of individuals with neurological differences and to work towards a more inclusive and supportive world for all?
Siena Castellon, who founded neurodiversity week in 2018, wanted to “change the way learning differences are perceived”. “As a teenager who is autistic and has ADHD, dyslexia, and dyspraxia, my experience has been that people often focus on the challenges of neurological diversity. I wanted to change the narrative and create a balanced view which focuses equally on our talents and strengths.”
I was thinking about my own experiences as an (then, undiagnosed) AuDHDer (autistic and Attention Deficit/Hyperactivity Disorder) child. Something always drew me to the arts to help me problem solve, relax, and make sense of the world. My mum has described me as a shy, quiet child but a people watcher. So, it’s not surprising I have found myself in an arts and psychology related field as it best suits how I process the world and the people in it. After all, I have a creative mind and can provide new perspectives on issues that perhaps others may not have considered.
I love looking for explanations for things that seem unexplainable. I see patterns, gaps, and opportunities in everyday things that others seem to ignore. Research would suggest that individuals with ADHD are exceptional at inventing creative new uses for everyday objects (White and Shah, 2006). I recognise this inventive thinking as a strength as it has led me on the path of wonder and discovery that has resulted in further exploration as part of a PhD study.
World Autism Day falls just two weeks after neurodiversity week ends. Considering the term ‘neurodivergent’ covers such a wide scope of individuals I narrowed the strengths-based focus solely to autism.
I was interested to see if there had been many studies on autistic strengths, so I ran a quick (non-extensive) database search. I used various descriptors for autism/autistic people and various descriptors for strengths such as ‘strengths’ ‘positives’ ‘pros’ ‘benefits’ ‘advantages’ ‘positive qualities’ ‘accomplishments’ ‘achievements’ ‘impacts’ ‘influence’ ‘effect’.
It produced just 27 results.
Once I sifted through to remove duplicates and those that did not fit the criteria, it left me with just four strength-based studies. I had hoped for more, but the published studies about autistic people were between 2019-2022, potentially signalling a shift in deficit-based research.
Of the four research papers, three focused on parent reported strengths and one sibling reported strengths, but none out of the four studies surveyed autistic individuals. One study focused on how to harness strengths for interventions to promote well-being and success. It concluded that ‘strengths in autism may not lead to an instrumental outcome, such as obtaining paid employment, despite their rewarding value and societal utility’ (Valérie Courchesne et al., 2020). However, this was an individual case-study.
Another study revealed an additional work ethic/motivation category, which included an aspiration to be successful, highlighted self-determination and a wish to move towards personal autonomy (Wilkinson et al., 2022). In addition, the study suggested that helping autistic individuals to be aware of their own strengths had ‘important implications for self-esteem and mental health’.
Two papers focused on extraordinary or savant skills (stand out compared to the general population). One concluded that acknowledging and celebrating strengths is ‘an essential part of fostering a positive self-image for autistic children, which has important implications for their mental health and well-being’ (Bal et al., 2022). However, it is important to highlight the fact that at times the ‘autistic superpowers’ narrative can feed into harmful stereotypes of autistic people and fails to recognise the diversity within the community.
One paper explored character and general happiness and highlighted the individualised and diverse responses siblings offer as important insight. It suggested that deficit-based definitions used in various diagnostic criteria therefore painted an incomplete picture of autistic individuals (Carter et al., 2020).
A focus on what autistic people can do, not on what autistic people can’t do, appears to be lacking in research papers. It would be great to see a strength-based study completed in collaboration with autistic people. If a concentrated move towards promoting the diversity of talent and unique individual strengths within the autistic community is harnessed, it has the potential to promote a more positive image. This could offer autistic young people a sense of community pride, one they are much more likely to actively engage in.
It’s important to remember that everyone is different and equally important, human beings are more than just how their brain functions. Asking individuals what they are good at, not just what they need in terms of support can help promote a culture that recognises and values differences.
Now that would be something worth celebrating!
Bal, V.H., Wilkinson, E. and Fok, M. (2022) Cognitive profiles of children with autism spectrum disorder with parent-reported extraordinary talents and personal strengths. Autism: The International Journal of Research & Practice, 26 (1), 62-74.
Carter, E.W., Carlton, M.E. and Travers, H.E. (2020) Seeing strengths: Young adults and their siblings with autism or intellectual disability. Journal of Applied Research in Intellectual Disabilities, 33 (3), 574-583.
Valérie Courchesne, Véronique Langlois, Gregoire, P., Ariane St-Denis, Bouvet, L., Ostrolenk, A. and Mottron, L. (2020) Interests and Strengths in Autism, Useful but Misunderstood: A Pragmatic Case-Study. Frontiers in Psychology, 11
Wilkinson, E., Vo, L.T.V., London, Z., Wilson, S., and Bal, V.H. (2022) Parent-Reported Strengths and Positive Qualities of Adolescents and Adults with Autism Spectrum Disorder and/or Intellectual Disability. Journal of Autism & Developmental Disorders, 52 (12), 5471-5482.
Blume, H. (1998) Neurodiversity. Available from: https://www.theatlantic.com/ma... [Accessed Mar 12, 2023].
White, H. and Shah, P. (2006) Uninhibited imaginations: Creativity in adults with Attention-Deficit/Hyperactivity Disorder - ScienceDirect. Personality and Individual Differences, 40 (6), 1121-11131.