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Image: The Spinoff/Getty Images
Image: The Spinoff/Getty Images

OPINIONSocietyApril 7, 2021

Autism isn’t an illness – it’s an identity

Image: The Spinoff/Getty Images
Image: The Spinoff/Getty Images

It’s time autism be recognised as a valid identity rather than a puzzle with missing pieces, writes neurodiversity advocate Kahukura Sinvold.

April is Autism Awareness month, a time many in the autistic community dread. Traditionally, it’s accompanied by a stylised puzzle piece – a symbol the majority of the autistic community rejects (we prefer the gold or rainbow infinity symbol) – as well as the colour blue and “inspirational” stories from parents about their autistic child. I think of this kaupapa as the medical perspective, and it’s one that heavily dominates our current social narrative regarding autism.

I want to see a different kind of kōrero based on a perspective countless advocates across the globe want people to listen to – the identity perspective. Meaning, I don’t have autism, I am autistic; it is my identity.

Perhaps criticism around the puzzle piece is something you’re hearing for the first time. Perhaps you have an autistic child or person in your life who loves the puzzle piece and feels it represents them perfectly. Of course, people are free to like what they want, but it’s important to understand the history behind the symbol.

There’s a lot of pain associated with the puzzle piece, particularly as it was created without our input during dark times when autistics were dehumanised and hidden in institutions. The concept was that we were like a puzzle missing a piece: finding a cure for this terrible disease was necessary, with the narrative focused heavily on tragedy and suffering.

In more recent history, the puzzle piece has been adopted as a logo for an organisation called Autism Speaks which, again, reinforces the notion that we autistics are incomplete and in need of early intervention to correct our deficiencies.

The fact that people continue to use the puzzle piece, despite the autistic community often viewing it as a hate symbol, gives a small indication as to why April can be so hurtful. Even during a month that’s supposed to be about us, our voices are rarely prioritised and our requests to be seen as a valid identity aren’t respected.

The puzzle piece is a symbol the majority of the autistic community rejects (Image: Autism Speaks)

“Don’t let it define who you are” is the common catchphrase surrounding autism. To that, many of us reply: “But it is who we are”. For me, being autistic is an integral part of who I am and it can’t be separated. I’m not a regular non-autistic person with a “side” of autism, and I don’t see autism as a condition, disorder or illness. Instead, I see it as a natural variation in brain types which can be referred to as “neurotypes”. That doesn’t mean there aren’t very real challenges with being autistic or that being autistic isn’t a disability that might require support, but it does mean that we as autistic people want others to learn and accept us as we are.

As it stands, the word autism is loaded with stigma and a resistance to giving children “labels”. There’s this idea that, with the right support, children can be pushed along some imaginary scale from severely autistic (non-verbal, low functioning) to mildly autistic (verbal, high functioning). But the reality is there isn’t a sliding scale: you either are or you aren’t autistic and it’s our support needs that vary depending on the individual, similar to all humans.

When it comes to labels, I can assure you those with autism are given plenty of those, except the labels we get tend to resonate through our self worth for life: lazy, rude, selfish, stupid, dramatic, oversensitive, manipulative, weird, and odd are just a few examples. Equally, we often know we’re different from a young age but assume the reason for this is our own fault and our own lack of trying. This frequently leads to poor mental health and self-worth issues, often reinforced with a helping of trauma on the side.

When I realised I was autistic I finally had the reason for why I never felt like I fit in and why I had the challenges I experienced. I could stop blaming myself for being broken because I wasn’t broken, I just had a different brain. As someone who was diagnosed in their mid-thirties, it’s not worth thinking about how knowing this earlier would have impacted my life because it’s too overwhelming.

Another aspect of being autistic is community. Social media is full of fellow autistics coming together as a community who are free of neurotypical expectations on how we interact. There’s straightforward dialogue which we aren’t called blunt or rude for, and we can dump information about our special interests without being told we’re obsessed. We have non-linear conversations jumping from one thing to another and then back again without a negative reaction, and we can show we empathise with a person’s experience by sharing a similar experience of our own without being called self-centred.

Basically, we can be who we are and embrace our autistic identity and culture without being reprimanded by those who don’t accept our ways of doing things. The solidarity of our shared experiences helps us feel less alone and also gives us a sense of pride in who we are, pushing away the shame and embarrassment of being misunderstood, misinterpreted and rejected for our differences. It’s powerful, it’s healing and it’s all because we see ourselves as a valid identity rather than a disorder, condition or illness.

So how do we interweave this perspective of autism with the everyday rhythm of life? It comes with a question: what does autism look like to you? Because there’s no adequate answer to this other than there is no “look”. What there is, though, are a lot of social rules and expectations that autistics can have trouble hitting correctly, which inevitably leads to us not being accepted. We aren’t accepted for listening without making eye contact, we aren’t accepted for our natural communication styles and we aren’t accepted when we stop trying to cover up and mask our differences.

I’m not saying everyone that does things differently is autistic, what I’m saying is we as a society need to get better at realising that “normal” has many forms. Question yourself when you judge someone on how they act, their facial expressions, their ways of communicating or the things you think of as “quirks”.

Hold your judgement when someone acts “out of character”, especially if they’re tired or in a busy environment. Normalise making mistakes and saying awkward things without cutting someone off. Give people an opportunity to explain themselves if you’re offended by something they said. Respect that people can have different levels of tolerance around noise, lights and chaos.

Please listen to the words someone uses and not just the tone, and recognise that things often thought of as “common sense” in our dominant culture are based on a certain kind of brain rather than all kinds of brains. Because this is what accepting differences looks like. This is what Autism Acceptance looks like – letting us be who we are without fear of repercussions.

The identity perspective is based on the work of Judy Singer and the Neurodiversity Movement. Here is a list of suggested resources if you wish to understand more:

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