My journey with neurodiversity
From child to adult to parent
I am seven when my younger brothers are diagnosed with the now defunct ‘Asperger’s Syndrome’. In regional Queensland in the 90’s, the diagnosis strikes the family as a cataclysmic event. Lines of identity are drawn that are emotionally complex. My brothers have one set of expectations; I have another. I am praised for being responsible and mature. I am the eldest. A good boy.
In adolescence, I became crushingly determined to be ‘normal’ and well-liked by my peers. I am clinically depressed, constantly anxious, and bump up against molestation and abuse. I rejected my brothers and my family. My brothers barely didn’t make it through high school. I went on to get a doctorate. They register their lack of achievement as a failure. I register my success as a guilt-ridden burden.
I grow up. Get therapy. Set some boundaries. I become mentally stable for the first time in my life.
Around this time, I noticed a dramatic shift in the classes I teach and my social media algorithm. Once stigmatised, neurodiversity is now championed, and learning institutions attempt to integrate neurodiverse students.
I am infuriated by the swathe of middle-class white women taking to social media and self-diagnosing with complex mental disorders. I can’t pinpoint my rage and spill it out in a blog post. It upsets people, and I publish an addendum giving voice to some mates and readers from the neurodiverse community.
That was about a year ago, and the complicated grief and shame I carry around neurodiversity remains inarticulate for me. But in the time since, my feelings have only become more complex.
About a fortnight after the blog post, I’m sitting at a table with some mates playing Magic: The Gathering, which is fucking awesome. A new friend spins a metal, high-quality fidget at the table in front of me. I asked about it, and he passed it on to me. With one spin, I feel a part of my brain relax. My shoulders drop.
Holy fuck. What is this?
It’s a Kaiko Fidget, made on the Sunny Coast by an Autistic guy and his mum. They are beautiful objects, and I ordered a bunch of them. I take them into classrooms with me and creative developments. I carry one in my pocket most of the time. I am like a drug dealer, getting users hooked on a sample experience and texting them the link to the site. The next time I see them, they usually play with a fidget they ordered. For some of my students, it means they can focus in class.
My wife found Loop Earplugs, a company that makes discrete earplugs that helpfully diminish loud environments. We buy one for our eldest daughter, who is having trouble focusing at school. I buy a pair for myself.
My daughter and I ‘loop’ up together in busy shopping centres or crowded environments. The difference is astounding. We both emerge from shopping trips that usually drain us for a day with energy to spare.
Holy shit. Am I neurodiverse?
I am conversing with a friend who is the most egregious left-of-centre person I’ve ever met. I enjoy our friendship, because they make me think. I’m telling them about the fidgets and loops and they diagnose me, just as they’ve diagnosed themselves, with autism. In the same conversation, they diagnose me as non-binary.
I feel like I’ve been woke-d into identity politics. We’ve somehow circled out of the extreme left back into the extreme right where we categorise people into boxes. I chafe at it all and go back to spinning my little toy.
I won’t discuss it here, only to say that my daughter turned seven and started struggling with school.
All the questions and emotions I’ve ever had on this topic came floating to the surface.
I am scared that I will let her down.
I am scared that she will experience suffering.
I am scared I’ve genetically given her a destiny that is unfair.
I am scared I won’t be a good enough Dad for her.
Out of everything, I know this for sure: the world is neuro-hostile.
Take small children, stick them in uniforms, tell them where to sit and stand. Tame the impulses and formalise their curiosity into a uniform curriculum. Walking my daughter to school, there are kids on either side. They lug heavy school bags and navigate a thin set of concrete stairs. In the space of thirty seconds, we hear two kids cry in the distance, two kids half-tumble down the stairs and hurt themselves, and we are shoved and jostled. There is noise everywhere. Everyone would want to work from home if it were an adult workplace.
This is the ‘normal’ world we’re supposed to accept?
I can't work and earn money without my phone, which billionaires have deliberately designed to be as actively addictive as possible, built on the data of billions of users. I am constantly receiving advertisements. I have eight different inboxes.
This is how a normal human is supposed to operate?
I am almost certainly mildly neurodiverse. But sometimes I wonder if anyone fucking normal. What does that mean people butt up against institutions like school or the medical system? We are forced into a binary choice: the people or the systems.
I sit with my daughter.
Earplugs in. Toy in hand. Stay quiet and still and calm. Breathe. Hug the ones you love. You are who you are. It will all be all right.
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I’ve written about schools and mental health before. Here and here.
You are correct. My niece, who has been diagnosed with ADHD, refers to herself and her daughter with autism as "neuro-spicy" and it is a great word, with joy and humour and the recognition that the flavoursome herbs that make up the spicy-bit are ongoingly tangled in our mouths, as they are inside our heads and bodies. Trying to extricate the 11 herbs and spices in fried chicken takes science to dissect, as it is too with neuro-spicy-ness. It's what it means to be more authentically human... and it is traumatic, of course it is, but we must aim for better words, better ways to describe these experiences because so often they are shared in varying frequencies across the body politic. Because I am a boring old arsehole who still adores Nick Cave, I want to share what he says in a recent Red Right Hand post (Issue #291, July 2024) regarding the "unkind moments" we inhabit in life...
"Our humanness is not given to us. Instead, it requires our participation in its construction and realisation, which often comes about through collapse or calamity. We rummage through the chaos of our inner worlds, through our multitude of selves, to discover what we are, what we wish to be, and our authentic relationship with the world. This process requires a kind of winnowing of those selves and the dispensing of any that are no longer of service to the work of becoming fully human. We must separate the wheat from the chaff. This is a necessary but painful form of spiritual renovation – to discard those ancient and destructive versions of oneself and become an actual person, unique among other people. We must do this lest we be frozen in a stasis of the soul".
Winnowing is such an old word that literally means to blow the wind through the wheat to separate the edible bits from the chaff... isn't this what you are talking about, Dave? A winnowing of what the bits and pieces of life are made up of: rejecting those that are no longer useful, and adopting those that lead us somewhere new, even though these can be stimulated from hurtful events?
Thanks for another great post!
This spoke so much to my experience becoming a parent! I worked in the education system for 10 years - I was well versed in the traits and strengths of my neurodivergent students - but it took watching this experience in my own child that made me realise how much I had overlooked these traits in myself.
Fantastic piece, David.
Thank you.