What is Neurodiversity Affirming and Why is it Important?

Guest Blogger | Helen Edgar

This blog has been inspired by the webinar hosted by Nicola Reekie from The PDA Space and delivered by Jess Garner from GROVE Neurodivergent Mentoring and Education. It has been written by Helen Edgar, Autistic Realms (March 2024)

What is Neurodiversity Affirming?

The term 'neurodiversity affirming' or ‘neuro-affirming’ is popping up everywhere! You may have heard these words and wondered what they mean and why it matters.

There can be confusion and anxiety regarding the 'right' words to use or how to identify potential red flags when seeking support for your neurodivergent child or a child you support. I aim to clarify some of these points based on the webinar delivered by GROVE Neurodivergent Mentoring and Education. You can check out their presentation here and download a FREE E-BOOK that goes into more detail here. This will also be available in the Autistic Realms Community Resource Library as a FREE DOWNLOAD.

A brief history of the term neurodiversity
On 12th March 2024, Botha et al. (2024) published a letter; “The neurodiversity concept was developed collectively: An overdue correction on the origins of neurodiversity theory.” They aim to help clarify the origins of the neurodiversity concept and the theory surrounding it. Their research and letter highlights evidence that:

“Despite the widespread attribution to Singer, the terms ‘neurological diversity’ and ‘neurodiversity’ were first printed in 1997 and 1998, respectively, in the work of the journalist Harvey Blume, who himself attributed them not to Singer but rather to the online community of autistic people, such as the ‘Institute for the Study of the Neurologically Typical’.

They continue to share how the concept of neurodiversity has been ”collectively theorised and developed by autistic activists, primarily in the autistic community email list Independent Living in the mid-1990s.”  They suggest that, “We should attribute the coining and theorising of neurodiversity to the pioneering activists who collectively developed them in the autistic community alongside neurodivergent ‘cousins’ (coined by Xenia Grant in the early 1990s: Baggs, n.d.; Sinclair, 2005)” (Botha et al. 2024).
 

So, what exactly is Neurodiversity?

Neurodiversity is a concept that recognises and respects everyone’s differences. It is a biological fact that society is neurodiverse because everyone is different. Just like we have biodiversity in a garden or forest, we have neurodiversity in society.

"A neurodiverse group is a group in which multiple neurocognitive styles are represented." (Nick Walker, 2021).

Every flower has the potential to thrive in the right environment; each has different needs to enable it to flourish, and so do people. What a plant needs to grow in a desert differs from what a rose needs to blossom in a garden; neither is wrong. Likewise, what one person may need at home or school differs from another. They will need different environmental considerations and support depending on their specific circumstances. We need to embrace neurodiversity and all other types of bodies and minds and support people’s individual needs.

The term 'neurodivergence,' coined in 2000 by neurodiversity activist Kassiane Asasumasu, refers to individuals whose cognitive functioning diverges from societal norms. If you diverge from the average in society, you may identify as being neurodivergent. 

“Neurodivergent means having a mind that functions in ways which diverge significantly from the dominant societal standards of ’normal’. (Walker, 2021).

Neurodivergence is an umbrella term that includes but is not limited to ADHD, Autism, OCD, and others. Both neurotypical and neurodivergent people make up our neurodiverse society. We should celebrate and support our differences, not stigmatise them and marginalise people further for being different. 

• Neurodiversity is a biological fact. 
• An individual is 'neurodivergent' if they diverge from the dominant societal standards of 'normal'. 
• Society is 'neurodiverse'; an individual cannot be; neurodiversity includes everyone!
• Neurodiversity advocates prefer 'identity first language', i.e., 'Autistic' not 'person with autism' (person first language). (Kenny et al., 2016)

Thinking about how we use language is important as it can impact a person’s well-being and change their whole mindset and outlook. We can make a difference by changing how we talk and adopting neurodiversity-affirming language. 

What does being neurodiversity-affirming mean?

Being neurodiversity-affirming supports the idea that neurodivergent individuals are not abnormal or wrong. Being neurodiversity-affirming involves rejecting behaviourist approaches, including Positive Behaviour Support Programs, which can harm neurodivergent people. This is because these approaches seek to change the person or ‘fix them’ instead of looking at what we can change in the environment to meet people’s specific needs. These approaches often imply that behaviour is wilful and chosen. Therefore, it can be changed and coerced. For children in school, this may involve using sticker charts, rewards, and sanctions to prompt them to behave and act in specific ways. These approaches often overlook the importance of the nervous and sensory systems in understanding and supporting neurodivergent individuals.

 

What is the Neurodiversity Paradigm?

The Neurodiversity Paradigm asserts that neurodiversity is natural and valuable and that there is no 'right' or 'normal' type of brain or mind. It does not deny disability or the need for support but challenges the notion that individuals who require support are abnormal or wrong. It advocates for civil rights, equality, respect, and full societal inclusion for the neurodivergent.

Understanding Neurodiversity-Lite

Neurodiversity-lite refers to situations where people or organisations may appear to be neurodiversity-affirming on the surface, but this is often just performative. It's essential to look deeper and look for red flags that may signify a lack of genuine engagement with the neurodiversity paradigm. This is important to ensure your child's authentic neurodivergent identity is embraced and properly supported. 

Neurodiversity Lite image created by Lisa Chapman (Speech and Language Therapist @CommonSenseSLT

Neurodiversity-affirming language

Being neurodiversity-affirming is not just about changing your language; it's about shifting your mindset away from deficit-based approaches. Being neurodiversity-affirming means embracing people’s differences and focusing on changing the environment and our relationships with people to meet their needs.

It can be really hard to break old habits, but I think this is really important to foster a positive sense of neurodivergent identity for our young people. As highlighted below, making shifts in the way we talk and write about our own children and those we support can help this journey. 

Being neurodiversity-affirming

Being neurodiversity-affirming will look different for everyone, depending on their interests and sensory, social, communication, and physical needs. It's about validating and supporting their unique experiences and perspectives.
 

Education and Health Care

Understanding neurodiversity and its impact on health care and education is important. We need to create safe, supportive, and inclusive learning environments that acknowledge, meet, and celebrate the strengths of the diverse needs of all students. When reading your child’s reports or setting up support plans with education staff, it may be helpful to look out for the ‘red flags’ and guide people towards neurodiversity-affirming research, as highlighted in our FREE E-BOOK.

As a professional, it is important to stay up to date with current research and not lean back onto the “but that’s not how I was trained” type of mindset. Research is constantly evolving, and current research led by teams of neurodivergent researchers is casting a new light on understanding autistic/ ADHD/ PDA/OCD (and more!) experiences and the best ways of supporting people.

A few red flags to look out for likely signify that a person or organisation must embrace the neurodiversity paradigm. Some of these red flags include:

• Using language such as "ASD' (Autistic Spectrum Disorder) or referring to someone as 'neurodiverse" and using person-first rather than identity-first language
• Referring to research on deficit-based theories of autism, e.g. Theory of Mind (Baron-Cohen et al., 1985)
• Promoting neurotypical social communication, e.g. 'social skills training’

(taken from Jess Garner’s webinar for The PDA Space, March 2024)

From the early years onwards, we need to embrace neurodiversity-affirming education to enable people to experience and respond to the world in a way that works for them. Rather than trying to fit ‘square pegs into round holes’, we need to make the environment more flexible and accommodating for everyone. Everyone deserves to feel like they belong and are understood and valued. Adopting neurodiversity-affirming approaches will reduce stigma, support well-being, and foster a sense of belonging so everyone can thrive. 

A neuro-affirming family

Being neuro-affirming as a family can foster a positive self-identity with your children, promoting agency, autonomy and pride. Being neurodiversity-affirming is about recognising your child’s strengths and difficulties and seeing what we can change in the environment to support them (as opposed to trying to change your children to fit other people’s expectations).

Being neuro-affirming means that your parenting may need to look different to that of neurotypical families. You may need a much more sensory-focused way of life and need even more flexibility to juggle everyone’s fluctuating needs. We have lots of blogs about low-demand parenting that you may be interested in. The PDA Space & Autistic Realms websites have more information about this and neurodiversity-affirming resources to help foster a sense of neurodivergent pride!

 

Neurodivergent Pride

• Pride combats shame and may develop collective self-esteem, solidarity and agency 
• Pride and celebration have been effective in promoting acceptance and positivity about a stigmatised identity
• Community - together able to overcome previously obscured aspects of understanding (Barnes, 2015). 
• A better understanding of positive Autistic identity has been suggested as a potentially protective factor against poor mental health (Cooper et al., 2022) & (Heselton et al. (2022)

(Neurodivergent Pride ideas taken from Jess Garner’s webinar for The PDA Space, March 2024)

Last year, Aitken and Fletcher-Watson (2022) wrote an excellent article, Neurodiversity-affirmative education: why and how?. They suggested that we need to ask ourselves;

“Does my idea of neurodiversity operate to combat stigma and 

enable flourishing for everyone?’ 

If it doesn’t, maybe the simplest solution is to 

expand and update your idea of neurodiversity.”