Sarah Boon

There’s a lot of talk when it comes to autism and language. It’s a conversation I engage a lot in too, sometimes by choice but other times by necessity. However, one thing people struggle to understand is that I consider my autism a disability, but not a disorder. It’s probably best to start with explaining what disorder and disability mean before I delve further into my position.

The World Health Organisation describes disability as 

‘Disability results from the interaction between individuals with a health condition, such as cerebral palsy, Down syndrome and depression, with personal and environmental factors including negative attitudes, inaccessible transportation and public buildings, and limited social support.’

And defines a ‘mental disorder’ as

“A mental disorder is characterized by a clinically significant disturbance in an individual’s cognition, emotional regulation, or behaviour.  It is usually associated with distress or impairment in important areas of functioning.”

Neither of these definitions are perfect, but they give a decent general idea of how ‘disability’ and ‘mental disorder’ are currently understood. So all things considered, why isn’t ‘disorder’ a label that describes my reality of being autistic?

Autism ≠ suffering 

I don’t suffer from being autistic alone. When I’m by myself or in the comfort of my home (away from the outside world) I’m fine for the most part and I’m still autistic. If anything, I’m more visibly autistic at home as it’s somewhere I don’t need to mask (hide) my autism. 

However, I have experienced distress from the discrimination and bullying I’ve been subjected to from others for my differences. It’s more how others have responded to my autism which has caused more distress than anything. When I’m not around others, or at least people who accept my way of being, then I don’t suffer from being socially different from the norm.

When it comes to sensory processing, yes there can be a significant amount of discomfort and distress in environments that are too much. However, this is not a constant and is situational dependent. I can certainly find some environments’ disabling than others, but I don’t need the additional term of disorder to describe these difficulties. Disability is sufficient. 

This does not mean there are no difficulties I experience. In the right environment autism becomes less disabling and can even lead to joy that I wouldn’t experience if I wasn’t autistic. Only seeing autism as a disorder does not allow for more nuanced views of autistic people’s experiences. It’s very one sided. Also sensory differences can lead to happiness, pleasure and autistic joy that we wouldn’t have the privilege of experiencing if we weren’t autistic. It’s quite the opposite of being disordered, which can only be seen as a negative.   

Subjectivity

Also what is considered a disorder is often very subjective. I function in a way that makes most sense to myself and it definitely doesn’t fit in with normal, as I know it’s the best way to meet my own needs. Some will view this as dysfunctional and therefore assume it’s ‘disordered’ by default, without considering what works for individuals will differ (and there’s nothing wrong with that). E.g. How I may prioritise recovery time from social interactions rather than doing something viewed as more productive such as getting on top of the cleaning.  

Normality is something highly valued in our society and for the most part, and anything that falls outside normality is not accepted. As being autistic falls outside of normality, it got labelled as a disorder. It fails to recognise being autistic is part of the natural differences of humanity and that there is variety in how our brains process information and experience the world. Disorder assumes that how our brain works is disturbing and a moral failing. The crime of failing to function ‘normally’. That’s why I reject the term ‘disorder’ as my natural way of being isn’t disordered, that’s a judgement the medical establishment decides to label people like myself. It’s not the same as my reality. 

As I said before, I certainly do experience challenges due to how inaccessible a lot of places are, and some of these are due to how my brain works. There are some things that are easier to do due to my differences and other things that are harder. Of the things that are harder, they are disabling, alongside societal and environmental barriers in place. Yes there is misplaced stigma about disability, but it’s the more accurate term to describe some of the more difficult parts about being autistic than disorder for me. With disability, it recognises both the societal and personal factors that contribute to somebody being disabled, disorder does not. It puts all the blame on individuals labelled as ‘disordered’ and consequently ignores additional factors that lead to disabled people being discriminated against.  

Autistic and all other neurodivergent people will have their own views on how relevant terms such as ‘disorder’ and ‘disability’ reflect their lives, but for me it was important to distinguish the two based on my own experiences. The topic comes up a lot and I can’t provide a sufficient answer in only a sentence or two. Thus, I wrote this blog post! 

If you are autistic or otherwise neurodivergent, please let me know your thoughts in the comments below on how you feel about the terms disability and disorder when it comes to your own neurodivergence.

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