Asking for reasonable adjustments can be hard, especially for hidden disabilities like autism. It took me over three decades to learn how to do it and I’ve finally made it to graduate school. Writing about it is also hard but I’m sharing part of my story here in the hope that this will encourage anyone who is struggling with asking for academic help to speak up. And give a glimpse into why seemingly minor adjustments can be so important. Oh, and I’ll explain about the tortoise…
When I was about seven, I tried to explain to an optician that the letters he was asking me to read would shift and fall off the page. He laughed at me. Whatever he thought, I felt so shamed by his reaction that it was thirty years before I was brave enough to ask for academic help again.
During my schooling I worked my tail off constantly, suffered through the migraines and fatigue, and was always disappointed by my grades. I tried following more practical subjects at further education – horses, practical conservation, art – but it just didn’t satisfy my desire to understand the things that eluded me. So I left education.
Learning my neurotype
It was after leaving that I was diagnosed with Irlen Syndrome, a neurological condition which explains my sensitivity to light and affects reading due to difficulties with high contrast black on white text (it a sickening, stroby mess). I happened across a magazine article about it in a waiting room (ironically printed in black text on white) and I couldn’t believe what I was reading; I wasn’t the only one who saw text this way. Simple use of coloured overlays or printing on coloured paper and finally I could read without the migraines. I’d never read for pleasure before.
It still took me into the third year of my part time undergraduate studies – another 18 years later – to realise that this entitled me to request some simple reasonable adjustments. I could have my written material provided on coloured paper and some extra processing time in exams. The results were dramatic. For the same amount of effort, I went from frustratingly mediocre grades, to smashing a solid distinction. Every. Time. It was like a drug and, despite also working a busy full-time job, I pushed myself through some pretty difficult times to a First Class Honours – the first graduate in my family. But it had taken a toll on me that I still didn’t understand at that time.
It wasn’t until I launched myself gleefully into a PhD programme and immediately fell on my face (metaphorically) that I was diagnosed with dyslexia, dyspraxia and autism. All conditions that, along with Irlen Syndrome, fall under the umbrella term of neurodiversity. The next day a global pandemic locked the world down. It was a lot to process all at once, but finally my world started to make sense.
The problem was, I had been trying to function as a neurotypical person (i.e. not neurodivergent) and that can be damaging. Pushing myself until I got ill had been a pattern all my life, but the sustained push that it took to complete my undergraduate studies left me a different person. I now know that I had experienced autistic burnout.
Autistic burnout is different from what a neurotypical person might mean by the term. Autistic people spend their whole life learning coping strategies and ways of pretending to be ‘normal’. It’s called masking and it’s necessary to get by in the world. When the autistic brain reaches burnout those coping strategies can be, well, burned out. Lost. Gone. Sometimes they recover, but often the damage is permanent. For me, I lost the fantastic memory I’d always relied on to avoid having to keep reading things. I lost the ability to cope with social situations, especially where more than a couple of people are involved. I became much more sound and light sensitive, unable to deal with the general noisiness of life. Verbal processing takes more energy and I sometimes go a day or more without speaking a word. Fatigue is a constant and, saddest of all, I lost the ability to enjoy music. These challenges (and more) already existed for me, but my ability to cope with and/or hide them decreased dramatically. Those things are my student debt, but they were avoidable if I’d had the knowledge of my neurotype and the necessary working adjustments.
Asking for help
When I was at school, girls weren’t autistic – that is, we were, but no-one recognised it. But autistic children grow into autistic adults and many of us remain undiagnosed. Some people still question whether it’s worth diagnosing adults, but the power of it lies in knowing how to manage your wellbeing effectively. Knowing that I simply cannot push myself that hard – that the consequences can be dramatic and permanent. That I must ask for reasonable adjustments if I want to achieve my potential. Diagnosis has made all those things possible.
So I’ve had to brace myself against a lifetime of desperately hiding my struggles and ask for help. It’s deeply uncomfortable. But I’ve learned that, not only is it ok to do so, people have been very willing to find out what I need and to try and provide that help. No-one has laughed at me, like my childhood optician did. Navigating the world will never be comfortable for me, but some adjustments make it possible.
Most of us are familiar with the adage of the tortoise and the hare (I told you I’d get to the tortoise). I’ve come to understand that I’m an obligate tortoise. Defending my wellbeing might make me appear inflexible at times – prone to getting overwhelmed by ‘too muchness’ – but if I try to kick it up into hare-mode, I fall over pretty quickly. But I am a Productive Tortoise. If I’m allowed to work in a suitable environment and set a pace I can maintain, awesome things can happen. You see, I’m wired to snatch up passing ideas and bits of information, build connections with other random things I have stored and evolve them into something new. And I don’t have an off switch. This can be gloriously creative and utterly exhausting in equal measure.
So if you have any kind of hidden disability – whether or not you have a formal diagnosis – please do be brave enough to ask for the adjustments you need. You are not only entitled to do so, you owe it to yourself. Autistic burnout is not worth it. In my experience people genuinely want to help you and it can also be a good way for you to find out if you’re bringing your talents and precious energy to the right place.
And if you are the person being asked for adjustments, firstly recognise that it was probably really difficult for them to do so. Set aside your preconceptions about neurodiversity and how capable the person is – neurodiversity is about how we experience the world, not how the world experiences us. There are many myths – far too many to go into here – and every autistic person has their own distinct spiky profile of strengths and challenges. Whatever they are asking for is probably only their most vexatious thing. Ask them if there are any other adjustments that would help. Above all, listen and believe what they tell you. If you facilitate these adjustments, a unique neurodiverse mind can be free to manifest into their own version of a productive tortoise.
Vicky Bowskill (she/they) is a PhD researcher at the Open University, investigating the sustainable management of floodplain meadows for agriculture and biodiversity. She also has a keen interest in equality, diversity and inclusion and has developed a taste for science communication. You can find Vicky at www.vickybowskill.com