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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:

https://neurocosmopolitanism.com/neurodiversity-some-basic-terms-definitions/

https://neuroclastic.com/

https://autisticadvocacy.org/

https://www.reframingautism.org.au/

https://www.facebook.com/theicannetwork/

https://www.youtube.com/c/autistictyla/

https://www.instagram.com/fidgets.and.fries/

https://www.instagram.com/the.autisticats/

https://www.tiktok.com/@auteach

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trains

SocietyApril 7, 2021

The truth about the green button on the train door

trains

After many anxiety-filled commutes, Alex Casey gets to the bottom of an Auckland train mystery. 

Every morning I think things will be different. As the train rolls into my stop, I rise out of my seat with a slow dignity normally reserved for nobility, or the elderly. I calmly glide towards the door and adopt a subtle warrior pose. I am queen of the carriage, brave opener of doors, commuting hero. I stare stoically out the scratched window to the horizon, breathing in and out slowly as the flashing green button taunts me in the peripherals. Don’t look at it. You don’t need it. Don’t press it. Don’t. Give. In. 

When the train comes to a complete stop, everything changes in an instant. My breathing quickens, my face and eyes turn bright red, the whole carriage begins chanting “shame, shame, shame”. I lunge towards the flashing green “open door” button with the ferocity of Bilbo having one more hoon on the ring. Alas, by the time I complete my panic-push, the doors have already started opening, just like they were always going to. The queen of the carriage tumbles out, disgraced, a pauper of the platform. 

Me, every morning and evening

As we all returned to work after the long Easter weekend, I needed answers after years of wondering. Do Aucklanders actually need to push the green button for the train doors to open? Or are we all just rats trapped in a mad scientist’s maze, frantically pushing dummy buttons in pursuit of illustrious freedom cheese? None of the commuters I spoke to seemed to know. Some assumed the doors were automated, but had suspicions. Others thought it was only necessary in peak times. Some had never even entertained the idea that they didn’t have total button-based control. 

An Auckland Transport spokesperson heard my confused call. “No need to push the button,” they replied briskly. “All the doors are on automatic.” As it turns out, the doors have been automated in peak times and on busy platforms (Newmarket and Britomart) since 2017. But wait, there’s more. Since this time last year they’ve been fully automated – every door, every train line, every time of day. “The reason the doors were made automated was because of Covid, to avoid people touching the buttons and potentially spreading germs,” AT explained. 

So, do people actually know they don’t need to press the button any more? A brief survey of the office suggested they didn’t. According to AT, the door automation last year was communicated to the broader public through “a little bit of social media activity” and the removal of the audio announcement to “push the green button, when lit”. Although the omniscient god-like voice is gone, the flashing ring around the button remains a come hither to many commuters. “I push because it’s flashing at me and it seems important,” said Stanley*, a serial pusher. 

Time to get lit. Photo: Alex Casey

One day I decided to take note of just how many people remain completely at the mercy of the button. It was bucketing down with rain at the Mount Albert station, and everyone was huddled under the shelter, out of reach of the button, when the train arrived. Straight off the bat, we were faced with the ultimate conundrum – does the fear of getting wet outweigh the fear of the doors not opening? It only took a couple of seconds for someone to cave, tiptoeing over a giant puddle to proudly get their hit of green.

The barmy button army continued once I was inside the train. At Baldwin Ave, I watched a man nervously inch back and forth towards the button, before giving a big old Kiwi push. In Kingsland, one trigger happy punter gave it a nudge before the train had even stopped moving. In Grafton, I saw a woman in scrubs hover her hand above the button for 30 seconds before relenting. The man in front of me watching My Name is Earl on his phone? You bet he gave that button hell when we arrived in Newmarket. 

When I later revealed to some seasoned commuters that they needn’t press the button at all, I was met with shock, outrage and confusion. “It feels like a hidden camera prank, I hate it,” said Mitzi*. “I’m going keep pressing,” said Frida*. “I’m a traditionalist.” Others took a more zen approach to the automation. “Well, I used to press the button because I was rushing and stressed and lost in thought,” said Billy*. “Now I’m relaxed and in no rush, present enough to know and accept that the door will open when it will.”

Psychologist Sara Chatwin isn’t surprised to hear that many commuters have had a hard time giving up the button. “I would say the strongest motivator for button-pressing will be habitual – it was something that people did before Covid, so it’s something that they are going to continue to do.” People can often adopt an autopilot state on their commute, she says, with their mind on work or what awaits them at home. “There will be a percentage of people who forget and just press it because it’s there.” 

Britomart: where the doors will (hopefully) always open

My field research revealed some deeper psychological concerns. “I will keep pressing the button, just to be safe,” said Pat*. “There could be a technical error and I don’t want to get stuck in the carriage.” Chatwin expects some people will have a lack of trust in the automated process. “As humans we struggle to trust machines,” she said. “These types of people might have experienced a machine going wrong and have some residual trauma there.” One commuter, Suzie*, had a particularly shameful experience. “There was a time I was waiting to get off in Sunnyvale and the doors didn’t open,” she said. “I was left standing there like a fool.” 

Something we’ve all experienced, and continue to experience, is life under Covid-19. Chatwin says this is another major factor in people wanting control over their own lives, even if only through something as small as a button. “Everyone’s anxiety levels have been quite high over the last year. As human beings, we quite like certainty – most of us like to cross those t’s and dot the i’s. I think that if pressing a button assures you that the doors are going to open and you’ll have an outcome, that makes a lot of sense.”

AT is well aware that many people are still pushing the button. “Some people still do it, but less so in the past year with Covid,” a spokesperson said. Even though we now know spread of the virus via a simple bin lid or a cheeky lift button isn’t as likely as first thought, you’d still hope measures are in place to protect the button buffs. Indeed they are, said the spokesperson: during routine cleaning, AT ensures the internal and external buttons are regularly wiped, alongside all other touch surfaces. The internal buttons even receive bonus “fogging” due to use.

Finally, I asked Chatwin if I should feel like a right dingbat if I want to keep pressing the button just because I like pressing the button. “I think all the reasons why you would keep pushing it are very valid – trust, control, self-esteem, social judgement. It’s no surprise that something as small as a green button could bring all these characteristics into play.” I pressed her for a final comment about pressing the button. “I think a little button can mean a lot to people. It’s a meaningful little button for sure.” 

*Real names have been changed to the names of Spinoff dogs to protect people’s privacy


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