Labelling autism

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Listen to us, understand us, and accept us for who we are, writes Leigh East.

When I received my autism diagnosis, I began a steady downward spiral. The massive relief I’d felt initially as I understood there was a neurological reason behind the way I experienced the world was short lived. But why the spiral? Nothing had really changed. It was the shocking realisation that just knowing was not going to be enough. I was now facing a new battle against stereotypes, careless assumptions, and thoughtless labelling.

Don’t get me wrong. I am not afraid of a battle if it is a fair one, but I soon realised this was no fair fight. I was going to remain in environments not set up for a brain like mine, and I would be fighting a culture which didn’t understand or even really care (in the broadest sense) for a brain like mine. And there was seemingly little I could do about this. I’m talking here about the toxic combination of society’s, and the medical profession’s, stereotypes and overt labels commonly attached to my newly found tribe and our ‘behaviours’.

Of course, few people, books, or websites deliberately go out of their way to be disrespectful or harmful, but the staggering lack of understanding I came across through terminology alone, alarmed me.

“Stop reading it then” I hear you say, but that’s easier said than done. If you’ve spent a lifetime struggling to fit in, masking like crazy, wearing yourself out to the point of exhaustion and shutdown, and then you catch a glimpse into a world which could help you understand yourself, and more importantly love yourself, it is far too tempting to pass up.

But the words used about me were baffling. At a macro level, the impact of labelling can be felt by the name itself—Autism Spectrum Disorder. Many people who identify as Autistic dislike the term as it pathologizes our neurology.

At the micro level there are labels attached to sweeping stereotypes around ‘autistic behaviours’, many of which are either negative in themselves or have become negative through pejorative use—’stimming’ being a classic example. I mean really, point me to a person who relishes being described as a “rigid thinker” or who wants to hear themselves and their tribe categorised as “abnormal”, displaying “excessive” behaviours. These are all terms used to describe autistic people and more than a few writers on the subject do the same.

While the underlying meanings behind these labels may be accurate some of the time there are more thoughtful, supportive ways of saying this. And by the way, it is never 100% true, 100% of the time in every aspect of a person’s life. More importantly, these labels rarely represent the reason behind the behaviour—which can often feel very positive from the autistic person’s perspective.

A couple of examples of an alternative way to look at thee negative labels Monologuing and Stimming:

Monologuing is often perceived badly and discouraged. An alternative perspective “I trust you enough that I want to share all this information with you. It makes me feel very happy, it will surely make you feel happy too”. We do not all ‘monologue’, and those of us who do, are not trying to annoy you, nor are we self-important. We are often sharing something we care about with you because you are important. Admittedly you might not give two hoots about the topic, but before shutting it down, ask why we’re monologuing in that moment. Sometimes it is a display of affection, other times it might be a way of regaining control when we feel overloaded—talking about something we know in such depth can be incredibly reassuring, and this might be the only way our distress might be revealed.

Stimming. When viewed superficially, headbanging, spinning in circles, repetitive phrases or rapid blinking have been traditionally viewed as ‘maladaptive’ behaviours, a sign of distress or wilful misbehaviour. No, no, no! They are an invaluable form of self-regulation. More than this, if we engage with a person’s stim it can be an invaluable communication tool too: “I am so happy right now, I am spinning in circles”, or “I feel really unsafe at the moment, these repetitive phrases give me an alternative focus, the certainty is reassuring, and I feel in control of at least one thing in this moment”.

Why do I focus on the words used about us? As parents and teachers, we want the very best for the kids in our care. My parents fell over backwards to do the right thing by my sister and me. But even with all the support and care they could offer, the labels assigned to my behaviour from a very early age set the tone for my experiences and my perception of myself. This damaged my self-esteem and confidence as I grew.

Now this was the 1970s. I was not on anyone’s radar as neurodivergent, the term didn’t exist until 1998. But I was given plenty of labels: shy, bossy, angry, judgemental, none of which reflected the underlying cause of the behaviour being labelled. But hearing them over and over drove them into my brain and became my truth. One of the single most traumatic moments following diagnosis, and which precipitated the downward spiral, was when I realised most of these labels had indeed been wide of the mark, and the damage mind-boggling.

Looking at just a few of these through the lens of autism:

Bossy—a child trying desperately to bring certainty to a world of rules she didn’t understand, to manage sensory environments which overwhelmed?

Judgemental—a child wanting to discuss the ‘bizarre’ behaviour of her peers, behaviours which didn’t appear to fit any pattern, or which just didn’t make sense within her moral code

Angry—a child, so overloaded by noise, knows no other way to stop the pain than slamming the door on it (literally), or slapping the hand which has been tapping relentlessly throughout the TV programme

Shy—a child who struggles with social rules and so chooses to safely keep quiet

Identifying as Autistic is a hugely positive step in one’s personal development, but any support which seeks to label our behaviours without really looking at the reason behind those behaviours is harmful. We absorb these labels from our ‘important adults’ whether that is a parent, carer or teacher. We believe we are ‘shy’, or ‘judgemental’, that ‘important person’ said so. Ultimately, our self-esteem is eroded.

Realising this as a newly diagnosed adult was heart-breaking. Having spent a lifetime feeling ‘different’, broken in some way, I now also felt incredibly let down by a society which even now doesn’t seem to understand the impact of the labels it uses. What we really need is to have our needs met regardless of those labels—to be listened to, to be understood and accepted for who we are.

Leigh East
Author: Leigh East

Leigh East
+ posts

Leigh East is an Autistic parent of two teenagers and a neurodiversity advocate through Autilistic.com.

Website: autilistic.com

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