Stefanie Preissner on autism and neurodiversity: ‘I don’t have a defective version of what you’ve got’
Me and my brain have been in a battle all my life. I count a lot of things — stairs, cars, the number of times I chew my food — but I cannot count the number of times I have stood in front of a mirror and asked myself, why am I like this?
here’s a road I travelled every weekend as a kid — the N20, a road from Mallow to Cork City built with German money through a European investment initiative. It’s mostly flat with some inclines but it winds and twists between the villages and hamlets scattered in the Co Cork countryside.
Driving towards Mallow, about halfway along, there is a hill on the right. The landscape has changed over the years, but when I was child there was a forest at the crest of the hill. A bunch of Christmas-type trees gave a jagged and hairy look to the landscape. To the left of the forest, there was a single tree, just slightly away from the others. I would quietly contemplate on the journey home whether that tree was leading the pack like a brave warrior with a million soldiers behind, ready to launch. Or perhaps the pack was moving away trying to put distance between itself and this lone tree?
“I was that tree; close enough to the group to be assumed part of it, but really when you looked closely, completely disconnected from the masses.” Stefanie Preissner, photographed by Evan Doherty
While my friends were trying to decide which Spice Girl they were or which colour hair mascara to pick, I was thinking about that one tree, on the hill, away from all the others.
I was that tree; close enough to the group to be assumed part of it, but really when you looked closely, completely disconnected from the masses.
What was wrong with the tree? Was it planted away from the others for a reason? Did it grow that way? Could it ever get back and be part of the group? Eventually, after several years of trying to fit in in my own life, I made a decision about the tree. It wasn’t the leader, it wasn’t the chosen one, it was indistinguishable but different — just like me.
The tree is long gone, as is the forest. It probably spent a Christmas strangled in tinsel and baubles before being chopped up and burned. But I’m still here, still close to the group but not fully in it, and I was 34 years old before I found out why.
I spent literal decades using myriad nonsense reasons to try to explain me to myself. I knew I needed order and routine. I liked my pencils to be the same height and organised in a line from brightest to darkest. Being on time was as important to me as breathing. I don’t like subjectivity. I like what’s right to be right and what’s wrong to be wrong. I like facts and I never let someone away with a myth. I can be stubborn, and inflexible. Anxiety washes over me when someone changes a plan so I learned to be rigid, to avoid the distress.
My friends didn’t have these traits, so I explained them away by over-identifying with my heritage. “I’m not weird,” I’d reassure myself, “I’m just German.”
Later, once I learned I was a Taurus, I clung to the zodiac like a life raft. “That’s all it is,” I’d reassure myself, “you’re a bull.” Then it was introversion, and then personality types, and then it was human design, and then it was birthstones…
Each time I found a new framework for describing people’s ‘type’, I was all over it. “Please,” I’d beg, “just give me an explanation!” Turns out the explanation was glaringly clear all along if anyone had been trained enough to look for it. It was never that I was German or Taurean — I was autistic.
I’m autistic right now as I sit in a café writing this article. There’s a woman sitting at the window wearing a beanie cap with sequins that catch the sunlight and fling it violently on to the ceiling or the wall depending on the angle of her head. When she looks at her watch the sequins fling the sun into my eyes and I can’t see my laptop screen. Why does she need to know the time every three minutes? She’s either bored, late, or worried about becoming either of those things.
The coffee machine grinds coffee beans every time someone orders a cup. This shop sells only coffee — why don’t they grind up more beans in anticipation of the inevitable orders? It’s like they’re surprised every time — “Oh gosh, an Americano? I’ll have to grind some beans!” The sound chews up my brain for a few seconds each time it starts, and I have to take a moment to sort myself out and refocus before the next person’s order tries to envelop me again.
The banging. Why do baristas have to bang the handle so aggressively? Can’t you just tip the old coffee grinds out or use a spatula? Of course, I realise that I’m the problem here. The accommodations needed to make this environment tolerable would be unreasonable for me to request. I gather my things and wander the streets trying to find somewhere to write. Places are too tense, too warm, too much like Limerick Junction or just ‘too’ anything. When everything feels too something, it’s easy to feel like you’re not enough. Eventually, like a failed Goldilocks, I go back home.
It’s not that sounds irritate me. It’s more like I feel if I keep hearing this noise I will get lost in it. I will lose a sense of where I am and what’s happening. Noises can swallow me up and spit me out somewhere other than where I want to be.
“I spent literal decades using myriad nonsense reasons to try to explain me to myself,” Stefanie Preissner, pictured by Evan Doherty
Have you ever heard a song on the radio and it fires you back into a memory you were not expecting? After the song finishes, you find you’ve wandered into a different room or, if you were driving, you have no recollection of the route you took. It’s like the song stole you for a few minutes? My experience is like that, but it can be triggered by any noise. So, I block out the noise with headphones or by covering my ears or playing the same things over and over again. It’s just me trying to have control of my day.
Having a brain that diverges even slightly from the types of brain that most people have can make you feel like you were born on the wrong planet. The most important thing I’d like to teach people, and if you’re only going to take one thing away from this article let it be this: a neurodivergent brain is not a malfunctioning neurotypical brain. I don’t have a defective version of what you’ve got.
The reason this is the prevailing thought is because people think that neurotypical reactions, being the most common, are the correct ones. We learn that when people are sad, they cry. It’s more accurate to say, when some people are sad, they cry. They may also show sadness by becoming quiet, or they may not externally show it at all. You can’t tell everyone’s emotional state from their actions if you’re basing it off some limited Ann And Barry picture book.
We have no problem with the concept of biodiversity, do we? We accept that there is a variety of life on Earth, from genes to flora and fauna to ecosystems. We also know that biodiversity is vital to sustain life. If there were no biodiversity, this would be a different planet, uninhabitable and hostile. Neurodiversity is a concept people seem to be a little bit slower to accept, however. ‘What do you mean there are different types of brains?’ Well there are.
Neurodiversity is a term that encompasses all brain types, from the ‘typical’ brain across a vast spectrum. Some people have brains that diverge from what is most common or typical, and those people — us wonderful and curious folk — can be described as neurodiverse. It’s a term that represents a huge number of people living with many different diagnoses: ADHD, autism, dyslexia, dyspraxia, and dyscalculia to name a few. I bet there is no one reading this who doesn’t know at least one person with one of these labels. So, it’s high time we began to accept that the world has been created by neurotypical people and does not meet the needs of the neurodivergent.
If we can accept this fully, then people may be able to go back a few steps and think more creatively about all the different ways the world can function. Can we rethink how work or school can be done? Can we make it more accessible to everyone? Because, let me assure you, having a neurodivergent person in your workplace is one fool-proof way to ensure you are thinking outside the box, looking for patterns other people won’t see, coming at problems from a different angle and considering the needs and wants of a whole new customer base you may have been missing.
It can often feel as though people are all on board for being inclusive and accepting until you actually ask for an accommodation from them. That’s when the tone changes. As neurodiverse people, we get encouraged to drop the mask, to be our authentic selves. Then, when we do drop the mask, non-autistics don’t like it and we get treated horribly because words are easy, but actions are harder.
Let’s imagine that life is all about eating soup. As an autistic person, my brain — the tool I have been given to do life with — is a fork but all the neurotypical people have been given a spoon. That’s how I see it. Sometimes it can feel that the rhetoric around autism is around how I, the autistic person, can be supported in turning my fork into a spoon. Neurotypical people invite us to eat soup with them, they cheer us on because our fork is so unique and unusual, they tell us we are inspiring for continuing to try to eat alongside them. Some of them get annoyed when we spill soup all over ourselves or when it’s taking us too long to finish and they’re already done.
“Having a brain that diverges even slightly from the types of brain that most people have can make you feel like you were born on the wrong planet,” Stefanie Preissner. Illustration by Aoife Dooley for Life magazine
Why is it up to us to work impossibly hard, for impossibly long, to achieve an impossible task? It’s not fair. I can’t change my brain. I have a fork. It will always be a fork. Why can’t it be up to you to put something on the menu that I can eat with a fork? That is the direction the world needs to move in. Yes, it will take more effort for you neurotypical people. Yes, it may take more time and be a little bit annoying. Yes, it may seem easier and simpler to hire someone, or teach someone, or befriend someone, who has the same utensil you have. But is that right? Is it fair?
We all have someone in our lives who’s gone vegan and we still love and accept them as we fry their tofu don’t we? I’m mixing metaphors but I think my point is clear. Don’t leave it to us to always be the ones trying to adapt. Meet us halfway at least.
All that said, I wouldn’t swap my fork for a spoon if that were possible. There are things that are tough because I’m autistic, sure: unstructured socialising, managing friendships, coping with change, tolerating the sound of someone breathing… But, at the same time, the absolute best things about me are undoubtedly because I’m autistic.
“Each time I found a new framework for describing people’s ‘type’, I was all over it. “Please,” I’d beg, “just give me an explanation!” ” Stefanie Preissner
After years of having a thirst for knowledge, coupled with my ability to memorise things, I am remarkably smart and know something about everything. I am loyal beyond belief, and sometimes to my detriment. If a company or institution treats me well and I have a first name relationship with an employee, I will not switch company for any reason. Yes, I could get something cheaper elsewhere but cost isn’t everything.
I have an innate sense of what is fair and right and I will die on any and every hill of injustice I see. I have a focus that is unmatched by any neurotypical person I know, and if you give me a deadline, I will never miss it. Punctuality is part of my being. I am thoughtful and remember tiny facts about what people like so I’m the best gift giver. I spot patterns others don’t see and it’s very satisfying when people are impressed with the things I highlight that other people have missed.
Lastly, I’m delightfully unambiguous. I say what I mean and I mean what I say. If more people did that, the world would be a more peaceful and productive place.
April is World Autism Month. As the ambassador for AsIAm, Ireland’s national autism charity, Stefanie wants to let you know that autistic people face barriers in life that most people don’t see. Barriers to education, employment, friendships and social activities. If you want to help give autistic people the same chance as everyone else, donate to AsIAm.ie
Make-up: Jennifer Doyle; Hair: Lain Ashley, both Brown Sugar, 50 South William St, D2, tel: (01) 616-9967, or see brownsugar.ie
https://www.independent.ie/life/stefanie-preissner-on-autism-and-neurodiversity-i-dont-have-a-defective-version-of-what-youve-got-41522962.html Stefanie Preissner on autism and neurodiversity: ‘I don’t have a defective version of what you’ve got’