What does ‘neuro-affirming’ mean for Autistic young people?  

4 seedlings in soil

 

All of GROVE’s team are Autistic and many of us are parents/carers of Autistic young people, so we know how challenging life can be especially when battling societal structures and systems that feel like they are set up to hinder Autistic thriving.   

Society generally still has a ‘pathological’ and ‘deficit-based’ view of Autistic experience and identity, which means that autism is still often seen as a ‘thing’ that needs to be fixed often by moulding Autistic people into neuro-normative ways of being that aren’t conducive to our well-being.  Many of GROVE’s Mentor’s own children have suffered because of this happening in our education system especially (have you read Jess’ MA work on school attendance?).  All of this can be harmful for Autistic people, causing mental health problems and leading to high levels of masking and burnout (Pearson and Rose, 2023).  

We need to flip the narrative and help society see that there is another way to view Autistic experience and identity – one founded upon the belief that Autistic ways of being are perfectly valid, human ways of being and where knowledge about being Autistic is created by Autistic people. At GROVE we believe young people should be supported to have access to this knowledge, helping them to understand and embrace their authentic Autistic experience and identity and feel empowered to advocate for their needs as they grow up.    

But, what is ‘autism’?  

When we view ‘autism’ as pathological, this results in a deficit-based framing of Autistic experience and identity whereby people seek to define autism as a ‘thing’ some people ‘have’ manifesting through a list of faults.   We find dehumanising descriptions such as ‘persistent impairment in reciprocal social communication and interaction’ with ‘symptoms’ impairing ‘everyday functioning’ (DSM-V, 2013).  But those aren’t the things that make someone Autistic.  

Notions of Autistic ways of being arising from a disorder or condition rest upon something inherently faulty in its own right – an assumption that there exists an ideal, normal neurocognitive style of being with any deviation from this being inherently wrong (Chapman, 2021; Walker, 2021). Which is simply not true.  

Being Autistic has been referred to as ‘being human without the skin’ (Dawn Prince-Hughes, CASY 2024) as Autistic people can be so susceptible to their environment (and environment includes people’s attitudes and behaviours). Of course, sadly we are also susceptible to the stigma and prejudice pathologising Autistic experience and identity has created. 

Further topics like the Double Empathy Problem (Milton, 2012), the theory of Monotropism (Murray, 2005), and sensory processing will be explored in later blogs adding richness to our understanding of what it means to be Autistic. 

“Autism + Environment = Outcome”  (Luke Beardon) 

When thinking about meeting the needs of an Autistic person, we need to consider ways we can change the environment to meet their needs instead of expecting the Autistic person to change to fit in. Luke Beardon is a lecturer at Sheffield Hallam University and has written some fabulous books about supporting Autistic children, such as What Works for Autistic Children (2022), which we highly recommend and we love his famous neuro-affirming equation:  “Autism + Environment = Outcome”  (Beardon) 

What is ‘neuro-affirming’?  

To move from pathologising towards being ‘neuro-affirming’ we need to understand the Neurodiversity Paradigm (Walker, 2021):  

“The Neurodiversity Paradigm is a perspective that understands, accepts and embraces everyone’s differences. Within this theory, it is believed there is no single ‘right’ or ‘normal’ neurotype, just as there is no single right or normal gender or race. It rejects the medical model of seeing differences as deficits.” (Edgar, 2023)  

Nick Walker expands on this idea in far more detail in her book, Neuroqueer Heresies and on her website.  

Being neuro-affirming is more than changing your language and using the neurodivergent community’s preferred identity first (Kenny et al., 2016; Gray-Hammond, 2024). Being neuro-affirming is about shifting your mindset away from deficit-based, pathologising beliefs and approaches that try to change or ‘fix’. Instead, it is about looking at how we can change the environment to meet needs, as advocated for by Beardon (2017).  

How can I be neuro-affirming? 

How to be neuro-affirming will look different in practice for everyone because it depends on individual interests, sensory, social, communication and physical needs. But having solid foundations is a good start. Here are GROVE’s Neuro-affirming Foundations: 

 

GROVE’s Neuro-affirming Foundations: 

  • Our approaches are grounded in the principles of Neurodiversity Paradigm. 
  • We recognise the pervasive role of ableism within society, including the influence of internalised ableism. We aim to challenge ableist narratives about neurodivergent people.  
  • We are committed to being anti-racist. 
  • We are committed to being LGBTQIA+ affirming. 
  • We recognise and respect each individual’s intersectional identity and are committed to unpacking one’s own privilege.  
  • We aspire to work in a way that is trauma informed.  
  • We respect all forms of communication and presume competence. 

Our Neuro-affirming Foundations enable us to aspire, wherever possible, to create an accessible and emotionally, psychologically, sensorially, relationally safe space for GROVE’s young people, their families and those with whom we work.  

These foundations create the potential for authentic connection, community and growth in a way that is meaningful for each individual – for instance, developing meaningful relationships, a sense of belonging, possibly developing self-understanding, positive self-esteem and neurodivergent identity.  

Perhaps consider how these principles might shape your beliefs and approach going forward? 

Blog written by:

Helen Edgar (GROVE Education, Training & Resource Specialist) & Jess Garner (GROVE’s Founder/Director), November 2024

You can also find Helen’s work on her site Autistic Realms 

References and Further Reading:  
 

  • American Psychiatric Association. (2013). Diagnostic and Statistical Manual of Mental Disorders (DSM-V®). American Psychiatric Publishing. 
  • Beardon, L. (2022). What works for Autistic children. Sheldon Press  
  • Kenny, L., Hattersley, C., Molins, B., Buckley, C., Povey, C., & Pellicano, E. (2015). Which terms should be used to describe Autism? Perspectives from the UK Autism community. Autism, 20(4), 442–462. https://doi.org/10.1177/1362361315588200   
  • Pearson, A., & Rose, K. (2023). Autistic masking: Understanding Identity Management and the Role of Stigma. Pavilion Press.  
  • Walker, N. (2021). Neuroqueer heresies: Notes on the Neurodiversity Paradigm, Autistic Empowerment, and Postnormal Possibilities.
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