Neurominorities and Social Environment

This article considers the profound impact for members of a neurominority of finding themselves in a supportive social environment, a situation that is, unfortunately, all too rare. Theoretical models that align with the social rather than medical view of neurodivergent ‘conditions’ predict the outcomes to a degree, but I’ve recently had the opportunity to experience the effects first-hand.

Autists are the ultimate square pegs, and the problem with pounding a square peg into a round hole is not that the hammering is hard work. It’s that you’re destroying the peg.

Paul Collins

This square peg analogy seems particularly apt to help explain a recent, rather fortuitous social experiment. This experiment could be described as follows: “As a member of a neurominority, can you experience what it is like to be a member of a neuromajority and what is the impact of that experience?”. While I never intended to undertake this experiment, the outcome has been fascinating, it has helped to validate a theoretical model and has been, well, just plain fun.

Using the square peg model, I would break down the experiment as follows:

• Step 1: Identify your peg shape
• Step 2: Locate a community of similarly shaped pegs
• Step 3: Find or create an environment with holes that match your peg shape
• Step 4: Compare and contrast your experience against your previous environment.

Some definitions
Before delving into a definition of the experiment, it’s worth quickly considering the meaning of some of the terms I use in this article.
Neurodiversity – this term recognises that there is a broad range of neurological ‘types’, with neurological differences impacting how the the world is perceived, how information is processed and communication styles.
Neurodivergent – a term used to represent those members of a population whose neurological ‘type’ diverges from more prevalent or ‘typical’ types. Variations on this terminology include neuro-atypical (as against ‘neurotypical’) or neurodistinct. I often use the acronym ‘ND’. Examples of types of neurodivergence are autism, ADHD and dsylexia (I will discuss the myriad forms in later posts and resources).
Neurominority / Neuromajority – by definition, this is contextual. For example, recent estimates for the proportion of people in the general population who are autistic (or ‘autists’) sit around 1% to 2%, i.e. very much a minority.

So, on with a description of the experiment.

Step 1: Peg Identification

Summer 2020 and I’m in session 12 with a great clinical psychologist (online because we’re into the Covid-19 pandemic era) and she asks me if I’ve ever heard of Asperger’s? I’d heard of it, not least because of Greta Thunberg and her famous climate activism, but I couldn’t say I really understood it. Tony Attwood’s book, “The Complete Guide to Asperger’s Syndrome” was recommended to me to help me better understand the provisional Autism Spectrum Disorder (ASD) diagnosis. I’ve always loved research, so I quickly began to absorb everything I could find on the topic. I rapidly identified that Tony Attwood’s book was a fair description of my life and the pieces started to fall into place.

An official autism assessment was carried out in May 2022, after the standard 18 – 24 month wait in the UK. I was told that the session was likely to take 3 hours. I stated up-front that it would probably take longer as I enjoy talking. Less than four hours later I was informed that my case was sufficiently clear-cut that I was now officially classified as autistic. It was also confirmed that I displayed significant ADHD traits (but that a formal diagnosis wasn’t required as I had no interest in medication).

By the time I was formally diagnosed in 2022, I already identified as autistic and as an ADHDer. I also subscribed to a ‘social’ model of autism rather than the medical, deficit-based model I learned about when provisionally diagnosed two years earlier. I had discovered neurodiversity and had started to delve deeply into Diversity, Equity and Inclusion (DE&I).

Peg type identified: I’m ‘neurodivergent’ or ‘neurodistinct’ (there’s an ongoing discussion regarding terminology – I often just use catch-all term ‘ND’ ). Specifically, an autist and an ADHDer.

Step 2: Finding my Neurodivergent Tribe (similarly shaped pegs)

A reasonable estimate for the number of autists in the world is 2%, with the number of ADHDers sitting at roughly 8%. These figures are at the forefront of my mind having recently presented them at the inaugural #NDAgenda23 neurodiversity RoundTable event (thanks to Angela Loynd of Umbrella Alliance and Emerald Grace of ACT!VATe for organising this fantastic session). These prevalence statistics are important as they make it clear that I am part of a small, but significant neurominority. Please note that I will be focusing primarily on autism in this article, but neurodivergence covers a wide range of different ‘conditions’ that I will highlight separately.

Given some apparent misinterpretation of recent increases in rates of autism diagnosis, leading to media articles about an epidemic of autism, I feel I should point out that I have lived for decades in ignorance of the fact that I am autistic and that I have always naturally operated very differently to the majority of people around me. I just assumed there was something wrong with me as I struggled to fit in.

Amongst the many inspiring people at the NDAgenda23 event was Judy Singer, the person who originally coined the term ‘neurodiversity’. A key idea is that we when we talk about neurodivergent (or ND) ‘conditions’ such as autism and ADHD, we are talking about neurological differences, rather than deficits or defects associated with a medical condition or neuro-developmental disorder. Neurodiversity recognises a diverse range of ways of perceiving, thinking and communicating. The hash tag #DifferentNotDeficient is becoming quite popular in the ND community. However, as I discuss later in this article, ND conditions can be highly disabling and it is completely valid to classify them as disabilities.

Placing this in a work context, roughly 95% of my work colleagues over an IT career spanning 35 years have been running a different “operating system”, as they do not identify as being autistic. But wait, you say, don’t you mean 98%? I have observed that, working as an IT Consultant, roughly 5% of my colleagues identified as autistic. Many were not officially diagnosed, but they identified as autistic, often following diagnosis of one or more of their children, at which point they identified common traits in themselves.

An obvious conclusion is that official statistics under-represent the true number of autistic people in the world, especially if you consider the employment rate statistics shown above. These stats are based upon the UK Office of National Statistics (ONS) Outcomes for disabled people in the UK reporting, with an equivalent figure for Australia for comparison. The increase between 2020 and 2021 appears to reflect an increase in late diagnosis amongst the working population.

However, I’ll stick with the 2% prevalence figure for the moment as I have personally observed that of the roughly 30% of autistic adults who obtain employment, a significant number are in the type of IT roles I have fulfilled, which is consistent with a body of research. For primarily societal reasons, it appears to be predominantly autistic men in these roles – however, I have identified a number of ‘well-masked’ autistic women in specific IT roles, particularly relating to data and AI.

Importantly, my natural ways of working do not always align well with the majority of my co-workers, certainly many in my reporting hierarchy. Therefore, I have often had to adapt my ways of working to a model for which I’m not naturally suited. I read a post recently by someone who had been immersed in a Japanese working culture and for whom English was not their first language – they described the colossal challenges they experience in English meetings versus Japanese meetings. I noted the interesting parallels for many neurodistinct people in the workplace.

Importantly, my natural ways of working do not always align well with the majority of my co-workers, certainly many in my reporting hierarchy. Therefore, I have often had to adapt my ways of working to a model for which I’m not naturally suited.

Why does neurodiversity matter? Well, as part of my presentation on statistics, I showed a slide that reflected the horrific health and life outcomes for many ND people attempting to live and function in a world designed by and for ‘neurotypical’ (NT) brains. I won’t repeat the stats here, but suffice to say that I had to provide a strong ‘trigger’ warning prior to presenting the data, as it is truly shocking and upsetting for the vast majority of people. Unfortunately, the data is not as shocking for many members of the ND community as you might hope, as many are traumatised to a significant degree.

The change to a predominantly online world for a period, triggered by the Covid-19 pandemic, assisted me greatly in locating fellow members of a highly active, global ND community – my ‘tribe’.

There is a consensus in the ND community that it’s time for some real change. Suffice to say, it is a great relief to find one’s own ‘tribe’, not because I promote divergence of humanity into lots of disparate groups, but because it is all too apparent that being part of a minority group that is discriminated against on a regular basis is highly traumatising. Unfortunately, this is a form of discrimination that is largely invisible at this point in time, but discrimination due to ignorance and unconscious bias can still be devastating.

Step 3: Find or create a suitable social environment

In the introduction of this article, I referred to validation of a theoretical model. The model in question is Dr Damian Milton’s “double empathy” model (2012). Let’s assume that an autistic world view can be regarded as a cohesive, socially constructed reality that is just as valid as any other, for which deficits or disabilities tend to appear in relation to and in the context of an alternative socially constructed reality. If an autistic person spends the vast majority of their time in a community that shares a different world view, then they will always be trying to fit in with a foreign and often unsupportive culture (unless, of course, that cultural group is educated to understand the differences and needs of the minority group).

It follows then that if I wish to find or create a supportive social environment for myself as a member of a neurominority, one way to achieve this is to spend more time with fellow members of that group, i.e. NDers.

I find myself living alone currently, for the first time in many, many years (other than a 19-year old cat until very recently, who insisted on joining most of my online meetings). I have been busy working from home, setting up a new online business and meeting fewer people face-to-face. The exception is my local coffee shop, which I tend to use as an alternative office and where they all know my name and my cappuccino is prepared before I even get to order it.

This means that my social life now predominantly exists online. I have been growing my network of ND contacts and friends steadily over the last few months and have now passed a significant threshold – the majority of people I communicate with are members of my ND community, such that I have now effectively transitioned to being a member of a neuromajority. The NDAgenda23 event unambiguously provided an opportunity to experience this environmental change.

In other words, I unintentionally created a new environment for myself, one in which my social interactions are primarily with members of my own ‘tribe’. The pegs now fit the holes without the hammering. Step 3 complete.

Step 4: Identify the benefits of a supportive environment

Before I examine the outcomes of changing my social environment, I’ll consider some of the key differences between the ND/NT world views, the differences that frequently lead to strain for ND people. Time for a “top 10”.

Potential traits of a neurodivergent minority that can cause friction

A good place to start is to head to LinkedIn and just find a recent post on typical ND traits that can cause difficulties in the workplace. I’ll now quickly work through the first few items in the list I found:

• Avoiding eye contact
  • I’m actually pretty good with eye contact, unless I get too tired or distressed, at which point I tend to keep my eyes shut in order to reduce sensory overload – I try and remember to open them again before I start running to find somewhere quiet
• Really quiet or far too chatty
  • I’m good at talking passionately on a range of topics for a long, long period of time (with a preference for verbosity), but at other times I can be very quiet and not really engage at all in some social situations (note: ‘social’ as in interaction with other human beings, so this includes the workplace)
• Over-sharing
  • This one can be embarrassing, but I’ve also observed that many people will open up and reveal more about their personal experience, their real thoughts and what’s really going on their lives because of my openness
• Taking things literally
  • Not sure whether this counts, but it took me a while to adapt to the intended meaning when a car navigation system would tell me to turn left ‘now’ – I’ve finished up in pub car parks, which isn’t necessarily a bad thing
• Bluntness
  • I was told by a senior client manager that he found my bluntness refreshing, after I’d openly accused his team of behaving like a bunch of monkeys in their project implementation.

I’ll now consider some other traits that weren’t on the LinkedIn post list:

• Naturally working well with Complexity
  • I will often struggle with, or take ‘excessive’ time over, apparently easy problems and tasks. However, I can tackle complex problems and find solutions when others have tried and failed. This appears to be a relatively common phenomenon in my new community, as does friction when trying to explain what we are trying to achieve or why we are working in a particular way to an NT community. This really helps to highlight the importance of team diversity in the workplace
• Watching TV and films with sub-titles enabled
  • I only discovered very recently that this is actually relatively common in my new community. The abilty to have captions enabled for online meetings turns out to be pretty important
• Side-tracking myself and forgetting the key point I’m attempting to communicate
  • Having just attended an online event organised by and for ND people, it’s refreshing to discover how many people share this trait, especially my fellow ADHDers
• Accurately predicting the future
  • That this appears to be an ND trait is another recent discovery. I have just provided input to a local government autism strategy and shared the session with another autist with a remarkably similar background and life story to mine. He proceeded to outline his frustration that people around him cannot understand the consequences of their assumptions and actions, such that they are surprised when events unfold in what, for us, is a highly predictable manner. I will elaborate on this further at another time, as this article is at risk of becoming an online book.
• Not recognising authority figures or hierarchical organisational structures
  • Having chatted with a number of people who are regarded as leaders in their field globally and treated them just like I would anyone else, I find that this often goes down very well. However, I do wonder whether this has hampered my career progression at times.

I have listed above ten traits or behaviours that can cause issues for me in an NT world. I’m aware that many ND people would prepare a significantly different list! Note that I have excluded:

• Anxiety, as I regard this to be more an outcome of an environmental mismatch than an ND trait
• Masking, as I regard this as more a human technique to try and hide differences, not a trait.

The benefits of a supportive social environment

Now to consider the impact on an ND person (me) of finding themselves in an ND-friendly environment (epitomised by the recent NDAgenda23 event). Perhaps the first question to ask is whether any of the identified traits changed in any manner? Interestingly, the traits seemed to become more pronounced. Maybe that isn’t so strange. Returning to Dr Milton’s double empathy model, I suddenly found myself in a compatible world, one in which I am now ‘normal’ and accepted just as I am, a member of the neuromajority. This is far more profound than you might imagine – it represents a paradigm shift in experience.

If your daily experience has been one in which you tend to feel inadequate or worthless because of your struggle to fit in with society and the people around you, then finding that you are completely accepted just as you are can be a transformative experience. The value of excluding ‘anxiety’ and ‘masking’ from my list of traits becomes apparent – a weight is lifted, I can breathe freely, I no longer have to worry about whether I am a ‘worthwhile’ human being. I can just be.

I suddenly found myself in a compatible world, one in which I am now ‘normal’ and accepted just as I am, a member of the neuromajority. This is far more profound than you might imagine – it represents a paradigm shift in experience.

The double empathy model explains the well-documented anxiety of ND people as being a direct consequence of a mismatch between “world views” – a mismatch of social context. My experience supports this model. Further support for this model would be an experiment to verify the impact on an ‘NT’ person, a person who has always experienced life as part of a neuromajority, of suddenly finding themselves to be in a neuro-minority. It just so happens that I recently started to read “NeuroTribes” by Steve Silberman, which I believe fits the criteria.

In this book, the author describes his experience of attending Autreat,

“an annual retreat organised by autistic people for autistic people, in a social environment carefully constructed to eliminate sources of sensory overload and anxiety while maximising opportunities for people on the spectrum to simply relax, enjoy being themselves, and make connections with one another. My conversations at Autreat – some mediated by keyboards or other devices for augmenting communication – taught me more about the day-to-day realities of being autistic than reading a hundred case studies would. They also offered me the chance to be in the neurological minority for the first time in my life, which illuminated some of the challenges that autistic people face in a society not built for them, while disabusing me of pernicious stereotypes such as the idea that autistic people lack humour and creative imagination. After just four days in autismland, the mainstream world seemed like a constant sensory assault.”

From “NeuroTribes: The Legacy of Autism and How to Think Smarter About People Who Think Differently”, by Steve Silberman

While I don’t wish to overload this article, I believe that it is important to briefly discuss the social model of disability at this point. This model proposes that people are disabled by barriers in society, not by their impairment or difference. I personally regard myself to be disabled in relation to executive function, which I’ll discuss further at another time. Does having a supportive, non-disabling social environment mean that I’m no longer disabled? In line with a number of other ND people I have talked to, I still regard myself as disabled, due to the day-to-day challenges I face. However, an inclusive, non-discriminatory social context means that I no longer regard myself as deficient or lacking or of less worth than others around me.

I enjoyed the NDAgenda23 RoundTable event for many reasons. However, a key reason is that the attendees could just be themselves, in whatever form that took, and it was OK and supported, i.e. neurominorities in a supportive social environment. The wellbeing of people was more important than trying to enforce order on the event. The session began with “This is me” from the Greatest Showman. The event then embodied that sentiment, a refreshing change from so many corporate events in which the reality conflicts with the messaging. We’re an eclectic mix of individuals and organisations with a shared understanding of the critical need for change, but we’ll bring about that change in an ND manner, humanity-first.