Dear neurokin,
This is not a pity piece.
It never is. When we recognise our own neurodivergent difficulties and ask for it to be recognised or for adjustments to be made it is not pity we seek, it is understanding.
What I’ve come here to write about today holds a great deal of embarrassment and shame for me; I’m learning to accept a limitation.
I’m tussling with writing it, let alone accept something I can’t do due to my autism.
I’m struggling to let go of an element of independence and a version of my younger self, who was resolutely independent in all aspects of life.
I’m a middle aged, middle classed, cis white woman with access to resources to adapt to being neurodivergent, how could I possibly be disabled?
No amount of privilege can change the fact that a feature of my autism makes me disabled from some aspects of daily life. The one I write about today; driving.
Internalised Ableism
Back in my discovery phase, when I was trying to accept myself as autistic and in writing The autistic woman’s guide to belonging I explored how all lives are not unlimited. In considering what it means to accept that I’m autistic I had to ask; is my autism a disability?
I’m reminded again, by the discomfort I am experiencing in struggling to accept my own limitations. I may have accepted in theory that in a neurotypical designed world our neurodivergence can disable us.
In practice, I am still struggling to adapt my life to limitations I experience as a result of my neurodivergence.
Born to be wild
Growing up in the countryside, with limited public transport, meant that I needed to drive to be independent.
In my late teens and early twenties there was nowhere I wouldn’t drive to, especially for a gig or rave.
I loved driving at speed on motorways. I loved driving at speed on bendy country roads. I loved the adrenaline of surprising myself with my own risk taking.
The panic attacks I experienced whilst driving on motorways started in 2008 when I was 34. This was a time of huge, relentless, career stress. I worked hard and played harder.
I was regularly, maybe permanently, burned out.
At first, I tried to push through the panic attacks. When it starts to affect your vision and everything turns white. When you cannot see clearly, whilst driving at speed, you can no longer push through or ignore them.
I researched what I could do to address this problem. Not for a single second did I consider it was anything to do with how my brain was wired. Or that it was due to any kind of mental trauma that these panic attacks were happening.
I found one to one training, run by ex police officers, to help you be technically adept at driving on the motorway. No amount of anticipating what was ahead or reading the road could address the issue of the sheer mental terror of driving on the motorway.
Have you ever been in a road accident?
The advanced driving instructor seemed genuinely perplexed by my anxiety and inability to grow in confidence on the motorway. He could see I was technically adept, I had picked up all the techniques he had taught me and yet I was still highly anxious.
‘Have you ever been in a road accident on the motorway?’ he asked me.
‘Yes, two actually - neither caused by me’
But, that’s a story for another day.
These road accidents were traumatic. I didn’t understand that. I thought I was doing my best to ignore the accidents and just carried on without fully understanding the effects they had on me.
After the driving course, I tried to drive on the motorway a couple more times, each time the terror got worse.
I didn’t understand about trauma at that time. No one really talks about stuff like that.
Neither did I understand that motorways are a sensory overload for my autistic mind and body to process:
the speed of movement - vestibular and proprioception senses.
trying to visually process everything that my eye can see; cars, trucks, trees, the countryside, the pylons, the road signs, the flashing traffic alerts, the weather…. rain is a whole other level of sensory overload.
the sound; the loud traffic noise and vibration of car’s travelling at speed.
It was hard to get people to understand why I couldn’t do it anymore.
‘You used to drive on the motorway all the time, surely if you just keep doing it you’ll get over your anxiety? You’ll be fine’
It wasn’t about competence or skill or things that most people understand. It was about the way that my brain is wired and how that impacts my senses and my nervous system.
And, I wasn’t fine and I knew it would be the death of me, or someone else, if I tried it again.
When darkness falls
I have no problem driving around busy towns and cities.
Until it gets dark.
‘Why are the lights so bright on all cars now?’ I asked my son when I was driving him home from youth club on a winter’s evening.
‘It’s unbearable’ I say.
It’s not just me who thinks this, here’s what an AI scrape of the internet tells us:
Night driving already reduces visual function for everyone because of lower light levels, and glare from oncoming headlights can further reduce contrast sensitivity and visibility. For autistic people who are light-sensitive or prone to sensory overload, that normal night-driving challenge can become much more disruptive, making it harder to process road information quickly and comfortably.
I cannot put myself under this level of stress again
I was recently invited to lead some learning. I was absolutely delighted to do it and I loved being part of it.
Such was my eagerness to take part in it, I wasn’t brave enough to ask for an adjustment or accommodation to a part of it that I knew would be tricky for me; driving at night.
I could drive to the venue in the day. A small part of the journey was on a dual carriage way. Whilst I didn’t enjoy it, I could drive it safely.
I couldn’t bring myself to explain that the timing of a part of it would cause me a huge amount of stress.
I was too ashamed.
I didn’t want to admit “I can’t do that”
And so, I put myself under unbearable stress.
I drove on a dual carriageway in the pitch black.
Against the pitch black sky, the row’s of bobbing bright car headlights across the dual carriageway and the lights glaring in my rear view mirror totally disorientated me.
I fixed my eyes rigidly down onto the cat’s eyes to keep me on track of the road.
As I sat, bolt upright and rigid in my driving seat, through jagged breath I tried to reassure myself ‘it’s going to be ok, you’re going to make it home safely’
Every instinct in my body screamed at me to stop, to let go of the thing that was causing me such overwhelming stress.
I was driving my car at speed, on a busy dual carriage way - there was nowhere to pull over. I couldn’t stop or let go, to do either of those things could be deadly.
I gripped that steering wheel for dear life.
I tried singing. I’ve done this a couple of times as a way to try and calm my breathing and to prevent me from hyperventilating. It helps, a little.
As I exited the dual carriageway back onto familiar busy city roads I was still rigid with terror.
‘I mustn’t ever put myself through that kind of stress or danger again’ I said, as I relayed this information to a loved one later that night.
‘I just have to accept that I am a woman who must travel by train’
I wanted to know, was it just me? Was driving at night something that affects other autistic people? I took great comfort in reading the comments of 60 other women who had replied to a blog post asking the same thing and sharing their experiences.
Sharing our stories, helps us to know we are not alone. It gives us great comfort.
My autistic experiences and challenge of driving is not something that affects all autistic or neurodivergent people. In fact, for some neurokin, hyper focusing makes them excellent drivers in all kinds of tricky conditions.
I hope that, in some way, me sharing this is helpful to you.
Here’s five things I’ll leave for you to ponder
What does your neurodivergence prevent you from being able to do?
What are you struggling to accept about that?
Who could support you with those struggles?
What adaptations might help?
What accommodations could you ask for?
I’m signing off this article learning to accept that, weather permitting, I am a woman who loves to cycle on my bike for short trips and get the train for long trips. Those methods of travel work for my autistic mind and body.
I’m still trying to get the hang of valuing myself and my wellbeing enough to ask for things to be adjusted when they are too difficult for me.
Thanks for reading.
Andrea x
P.s As ever, my favourite bit in all of this is hearing your thoughts.
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Read my last article - it’s linked to this one and a reminder to be gentle on ourselves as we accept the challenges of our difference as we learn what it takes to live well.