Noticing the “I should…”s: curiosity, internalised ableism & invisible difference

Written By Aitch Nicol

All my life, I’ve been chastised, judged, bullied and admonished, just for being more interested in the world and everything about it than I am about keeping my part of it tidy.

As a youngling, I was constantly told off for not tidying my room. I was far more interested in learning about dinosaurs, or making clothes for my dolls, or playing my recorder than I was in doing what seemed a fundamentally unimportant and uninteresting task. But when I asked why I should tidy my room, the answers I got were entirely lacking:

  • “Because little girls should be clean and tidy” – “pah to that”, I thought - cultural norms hold no sway over me (also not a girl). In reality, this is a perfect example of evoking gender norms

  • “Because it’s important to clean your room” – which didn’t even answer my question, and went straight into the “I am fundamentally unheard” self-value bucket. In which I think Mum was teaching life skills? Or fed up with the mess…or both.

  • “Why can’t you be like *****, she is such a good girl and tidies her room”, which again, doesn’t answer the question, adding to the “no-one cares what you say” pile and including also a bonus gift of the need to compare myself to others. So my internal voice told me “Not tidying is bad. But I don’t want to tidy, and I don’t get why I should because no-one hears my questions, so I must both be worthless and fundamentally bad.” This one is encouraging comparison - more on this later.

  • “Because I told you to” – this one is a minefield – not least because it’s the basic premise of what I now call “Pathological Compliance Disorder”, coined by the fabulous Matt Lowry of the Autistic Culture Podcast. This he uses to describe the neurotypical drive to align with norms, do what you are told, do capitalism like a good worker, thus brilliantly subverting the term Pathological Demand Avoidance – a term used to negatively portray an inquisitive mind and a demand for autonomy often seen in neurodivergent ways of being.

For me, the only “why” that ever worked was non-verbal. It was my Mum’s “disappointed in you” face. That one hurt. It’s also one of the many reasons I now have so much guilt and shame for failing to do the housework, or for failing to prioritise the right things, or for taking time out of “doing” to just be. Because that means the denial of love.

So…50-something years later I STILL don’t want to prioritise cleaning over interesting activities, but I’m starting to learn how to manage the “stuff to do” and not descend into a spiral of self-admonishment if I accidentally go down a deep but fascinating rabbit hole full of interesting information about, say, the history of guitar making. But I’m still asking why.

Why oh why oh why…

Neurodivergent people often live our lives being told we are doing it wrong – “why don’t you do this”, “why can’t you do that”…when we don’t know, we look for answers. This is a pretty well-established human response to the unknown. When our ancestors looked up into the sky, wondering why that wet stuff falling from the sky was often accompanied by a loud bang and a light show, they didn’t have access to the information we now have. So they made something up that seemed feasible – “it’s the gods” they would exclaim. And a lot of people came to the same conclusion, albeit with differently named gods considered responsible.

The Thunder God theory was fairly ubiquitous, broadly consensus opinion for some considerable time.  But then we learned more, and we were able to come up with non-sky god reasons for thunder and lightning. Because we continued to ask why.

We humans are curious sense-makers – we seek to understand. But when we don’t have any answers outside of ourselves, so we turn those why’s inward and blame ourselves for our failings. We internalise the messages instead, making it our fault. So in my case, instead of understanding why I needed to tidy my room, I ended up with internal ableism about housework, and a fairly unshakable belief that I should be able to do all of the things, like other people can. The fact that I can’t means I’m just doing it wrong/not trying hard enough/am just a bit crap.

And even if we are lucky enough to gain some insight as to why we have such difficulties doing what everyone else can do, then chances are that this will still be treated as our fault, because what we are struggling with is invisible to others.

Invisible disabilities/differences

It seems that we, in the West, aren’t that good with difference. We are swift to “other” people and differences that mean we aren’t “productive” or that mean we don’t follow social norms, are judged harshly.

Differences with a visible cause are knowable – we have scripts for those – wheelchairs, plaster-casts, physical height & weight, perceived gender, these are visible, and while they may play into stereotypes and biases, they are knowable. Differences that defy cultural expectation are unknown, unknowable, and therefore threatening, for those who find safety in the expected.

But we are under the spell of empiricism, and have been since the 17th century - so when neurodivergent people say our brains and nervous systems are behaving differently and this is beyond our control, we are often not believed. But brains and nervous systems are (thankfully) hidden away - meaning neurodivergent brains are not visible to others; their processes cannot (easily) be empirically verified, and therefore our claims of difference often hold little to no weight. People often assume we have control over what is happening in our heads with a bit of “effort”, and we cannot prove otherwise.

The problem with empiricism

Ever since the Enlightenment, we have adopted a philosophical approach to believing, to perceiving “objective truth”, by virtue of the scientific method. This is a massive simplification of a complex philosophical notion, but it is a fact (because observable 😊) that we Westerners tend towards seeing knowledge as primarily derived through sensory experiences and observation. We tend to only believe things we can directly perceive or test by experimenting.  This enthusiastic adoption of empiricism means that we tend towards rejecting ideas if we can’t see the evidence. So we have common language examples such as “prove it” and “where’s your evidence (adopted whole-heartedly by the conspiracy massive). 

Even our approach to addressing the challenges of maintaining positive mental health are empirically-focused. Medicine is scientific field, based on the empirical scientific method, and psychiatry being medical in its focus, means it is beholden to empirical philosophy – the only truths are observable, testable, and repeatable.

But neurodivergence is not particularly observable, testable or repeatable. It’s hidden away in the way we think, the way we process information, in the way we behave and feel. In the absence of any other explanations for things, we go with consensus, as we did with the Thunder Gods. We stick together, and create shared belief systems, which automatically exclude or “other” anyone outside that belief group. This is where social norms come from – a consensus view of “how we do things around here".   But this unfortunately means that if we can’t see it, it doesn’t exist – and in terms of invisible disabilities like ADHD and autism, “…the absence of visible markers can lead to suspicion, doubt, and even a denial of legitimacy.” Granjon et al, 2025

The response to this invisibility, to our seemingly unknowable nature, can be both alarming and when persistently experienced (which is the reality for many neurodivergent people), incredibly damaging. Granjon et al recently studied invisible disabilities – their findings “…suggest that visibility fundamentally alters social responses, placing individuals with invisible disabilities at greater risk of subtle yet pervasive social exclusion (Serpas et al, 2024). See my previous piece on rejection sensitivity to get a feel for the impact of this pervasive social exclusion.

And as neurodivergent challenges are based on invisible ways of thinking and feeling, discrimination in the form of ableism is sadly common, feeding the Should Monster and too often irreparably damaging self-worth and self-esteem.

What is internalised ableism & how can I make it go away

When a disabled person (or person disabled by society) “…absorbs the opinions and viewpoints of the ableist society”, the result is internalised ableism. It’s expressed in the idea that we “should” be able to do things, because apparently everyone else can.

When my Mum said “Why can’t you be like *****, she is such a good girl and tidies her room”, I suspect she was just fed up with cleaning my room. But encouraging me to compare myself to others led to shame and low self-esteem, because I’m not like those other perfect humans and am therefore completely rubbish. And she inadvertently created a “you’re bad if you don’t do housework” introject that has stayed with me ever since.

Introjects & internalised ableism

Introjection is “the process of taking representations of others, or parts of others, into one's inner world” (Feltham & Dryden, 1993) – commonly we absorb aspects of our parents' attitudes and values as introjects. My Mum’s belief, as it appeared to me, was that good girls clean their rooms. This became my belief – but because I couldn’t motivate myself to clean my room (I’ll talk more about motivation in the next article), and because I didn’t get a good reason to do so (see above), then I must be a bad girl.

And so, I feel ashamed, guilty and bad, because I haven’t done what my Mum wanted – I push down the shame, and the guilt, and the frustration I feel, because I still don’t know why cleaning my room is so important, and I turn this shame & guilt ball into perfectionism. “I’ll show her I’m not lazy and rubbish and as good as that girl down the road”.

In this way we damage the neurodivergent – by expectations, norms, and comparison – creating a flesh-bag of introjects and disappointment, with our curiosity smashed and a fierce perfectionist streak, driving us to unachievable goals. Here lies burnout, eating disorders, addiction, OCD, anxiety, depression and suicide.  

 

Noticing the “I should”s – the importance of neuro-affirming practice

But to really understand where our Should Monsters come from, we need to stare the judgements, the social exclusion, the explicit and relentless ableism, right in the face. We need to dig deep inside, and at the same time, look objectively outward to culture and to society. But in very many cases, we can’t do that alone.

To really understand, and address, our internalised ableism, we need therapists who can help us to see what is actually going on, therapists who can support us in noticing our “I should”s and in turn, help us to notice our patterns of defence against rejection and punishment.

But please note – not all therapies are equal - the behavioural therapies can lead us to merely re-name our “Shoulds” as “Coulds”. Which is great, if you actually BELIEVE that you have slaughtered your Should Monster by the power of changing the first 2 letters of its name. But the likelihood is that you still have the belief that you should be doing such and such, and just saying “could” instead will not make that internalised ableism go away.

The more we can notice, without the judgement of the Should Monster, the more we can actually understand ourselves, and start to see what we need to be able to change our responses to more positive, compassionate ways of being.

And relax…

Although I mentioned above how destructive the smothering of curiosity can be, curious brains can be utterly exhausting, and sometimes we need to just be in the world, rather than constantly trying to make sense of it.  As someone who is eternally fascinated by everything, but at the same time, feels exhausted by the need to know all the things, all of the time,  this piece in Medium by Zohvib (just Zohvib, like Beyonce for writing) particular resonated:

Stop Needing An Explanation For Everything

Remember the sense of awe and wonder you felt as a child when the world was still new, and every day brought an adventure?

You didn’t understand how things worked, and you didn’t care. There was magic in the world, and you were part of it.

But somewhere along the way, that sense of wonder began to fade. As we grew older, we began to seek answers.

We wanted to know how things worked, and why. We became obsessed with finding explanations, and in doing so, we stripped away the magic of life.

The need for explanations is a prison of our own making, a cage that holds us back from truly experiencing life.

It’s a product of our fear — fear of the unknown, fear of losing control. But life is not meant to be controlled. It’s meant to be lived.

Our most fulfilling experiences often come from those moments when we let go of our need for understanding.

When we surrender to the moment, embrace the unknown, and let life unfold naturally.

 

Neuro-affirmative therapists! We need you…

If you are interested in learning more about neurodivergent experiences of the world, so that you can better support neurodivergent clients, by becoming more neuro-affirmative in your practice, then our courses and workshops are for you.

We regularly run these live, online workshops:

 

Or you can do the same courses (except Working with Autism, that will be available in May), on-demand, in your own time, here.

 

NEW – Certificate in Neuro-affirming Practice

If you are working regularly with neurodivergent clients, or would like to, then our Certificate in Neuro-affirming Practice would be ideal CPD for you. You get 30% off the stand-alone workshops AND you get that piece of paper so many of us really love.

Check out our free recording of our introduction to the Certificate in Neuro-affirming Practice – where you’ll discover more about the certificate, what we cover, what you need to do to achieve the certificate, and much more. Interested? Contact us

Photo by Hasse Lossius on Unsplash

Published 16 Mar 25

Aitch Nicol
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