My entrée into the patronisingly positivist dimension of the medical model came early. I learned that no matter how real and disruptive a condition was for me, if it couldn’t be measured objectively and quantitatively by a so-called expert, it couldn’t possibly exist. This is the story of a weird visual disturbance that co-occurs with my autism, the silent scream that was my childhood inability to get anyone to believe it was real, and the time I found out – surprise – it wasn’t all in my head.
WARNING: this post discusses the possible hallucinogenic side effects of Benadryl. This is a rare allergic reaction at normal doses. Most people need to take dangerously high doses to get this effect. You could get really sick or die if you try it. Just don’t do it.
Sometime during my residence in grade 2, I developed a weird visual disturbance that, even now, I find hard to describe.
Thousands of tiny, dynamic, pinpoints of white electric light, along with an equal number of similarly sized black counterparts, started appearing across my visual field. It happened intermittently over a few weeks until it became permanent. There was no escaping it – not in the dark, and not even with my eyes closed.
I was an already anxious 7 year old who was well practised at internalising my reactions to the outside world. I now lay in bed every night with nothing better to do with my never-ending insomnia than contend with being trapped inside my own private galaxy. If only there’d been a Brian Cox to help me explore it.
Just add cough medicine to make an autistic brain really trip out
At least it wasn’t boring. The visual disturbance, possibly combined with the Benadryl that was regularly administered during the chest infections I made a tiresome habit of contracting, also created some – ahem – interesting experiences.
Mostly these consisted of bolts of light, like particle beams from a Stormtrooper’s E11, flying in a tunnel formation towards and past me. On these nights, I was compelled to sit up or stand on the bed to physically defend myself from attack. That I am here to tell the story shows I was a successful combatant.
And then there was the most memorable night of all, when seemingly every type of food instead of space-age ammunition came zooming down the tunnel. My hand passing right through the midnight treat of a chocolate milkshake on its flypast may have been my first step towards grownup disenchantment.
I didn’t seek adult help for a long time. Perhaps, on some level, my child’s mind just accepted it as part of the generalised sensory overload that was bigger than my ability to comprehend. I definitely did not have the words to either ask for help or describe it. The best I could summon was ‘dots in my eyes’. It was an inadequate description and one that never had any chance of cutting through with neurotypical clinicians.
There’s nothing wrong with you, but come back in a week after I’ve made it even worse
Eventually though, my frustration did accumulate into such repeated complaints that I was taken for an expert examination. In a room in which everything – the walls, the furniture, the scary doctor’s trousers – was dark brown, I had lights shone into my eyes and was interrogated. I had a general inability back then to verbalise anything to any stranger, particularly of the scary variety. I was, therefore, also unable to say anything that would remove the cloud of suspicion for making things up that was coming to rest over me. Increasingly impatient, scary doctor put me to the ultimate test. ‘Draw them,’ he demanded, while I tried to grasp how the blue-lined paper and pen-on-a-chain could possibly create a representation of my nightly spectacular. For a few moments, he watched me fail at depicting the abstract manifestations of my brain before snatching the inadequate tools away.
This is the closest approximation I can render of what it was like to see through my eyes for a week. At least my friends were fast on the uptake. Swap cards were the thing back then and they seized the opportunity to exchange their least desirable ones for my more valuable ones. Yeah, their image descriptions really sucked.
There was, in his expert opinion, nothing wrong with me. But he made sure to teach me a lesson about wasting the time of busy people. For the next week, my mother was instructed to put drops in my eyes 3 times a day. Ostensibly to dilate my pupils for further examination, I was effectively blinded as the world receded into nothing more than a blur of washed-out smudges of colour. And for what? At the end of it, scary doctor shone lights in my eyes again to pronounce that, yes, I was indeed imagining things.
It was, of course, all in my head. At the age of 7 I had officially joined the Hysterical Females Club.
I became a bad student, and then forced myself to be a good one
Having been told so punitively that I was experiencing something that wasn’t actually happening, I was well into adulthood before I would broach the subject again with a clinician – or anyone else for that matter. Meanwhile, once I was in secondary school, my grades steadily declined as the growing emphasis on textbook-based learning formed an impassable barrier to my undiagnosed ADHD and the visual disturbance. Anything I learned in my final years was gleaned from class discussion as I found it increasingly impossible to focus on words on the page.
I landed exactly where my trajectory had been taking me all along: in a dead-end, low-skilled, low-paid job and a toxic relationship with a man-child who may well hold the world record for binge drinking.
It seems impossible to me now, but in the midst of that quagmire I somehow developed a growing awareness that I might be brighter than my school record suggested and everyone around me believed. I escaped that relationship after way too many years by becoming a mature-age university student in another state.
The same issues with reading and focusing were still there. It was hard and frustrating and slow to study a lot of printed information. It never occurred to me that I might be eligible for accessibility support. I mean, how could I get support for something that wasn’t real? But I at least found some rudimentary help from the local optometrist. It wasn’t much, but it was something. And I also knew the life that awaited me if I failed. It’s a long story, but I managed to not only get a degree but the Dean’s Award as well.
But wait, it wasn’t all in your head. We even have a name for it now: visual snow
It wouldn’t be until some years after I graduated that I finally found out the visual disturbance was not only real, but even had a name. While that name didn’t sound very scientific, it was at least apt. Visual snow.
I’d been working on a job that not only required reading huge amounts of printed material, but doing it under fluorescent lights. My brain was being fried many times over. But Dr Google was by then a thing, even if it was more like an inexperienced intern. And there it all was. Emerging academic research. Not-very-good simulations. Communities of people with the same thing. Proof I wasn’t the hysterical female I’d been branded when I was still barely old enough to ride my bike on the street.
I wished I could have taken it all to that dickhead of a doctor and shoved it in his face. I still would, but for the distinct probability he’s now dead.
Okay, so the condition may not have been described in the literature until 1996[1]. But if he’d been able to see past his own arrogance, maybe scary doctor could have seen something other than a child telling lies. Maybe he could have seen a child who was not shy, but who had communication difficulties. Maybe he could have seen a child utterly drowning in sensory overload. Just maybe, he could have seen an autistic child.
Would I change it? Hell, yeah
There’s not much I’d change about my brain, but visual snow is one of them. It’s just as hard to live with now as it was when I was 7, mainly because it doesn’t let me read as I would like. To some extent, I can manage it during the day with blue-tinted lenses*. I also use text-to-voice assistive technology when faced with a lot of dense reading. But, while it doesn’t get better, it’s not degenerative. And much worse things have happened to other people.
At least now I can mention it to a GP or optometrist and not have them automatically reach for the most condescending words in their clinical lexicon. And reputable institutions are doing peer-reviewed research on it – even the august Monash University through its Ocular Motor Research group. I’ve been a willing lab rat in a couple of its studies.
In spite of all those advances though, the only new thing I’ve learned about my visual snow in all these years is that I have the so-called broadband variety. It’s good to know I’m firing on fibre to the premises at least.
But as the world has become more digital, it has also become – at least in parts – increasingly accessible to me. I can now learn, and contribute, in ways that accommodate my cognitive style. The recalcitrant kid who couldn’t focus on text and barely scraped through secondary school went on to lead the creation of a digital Australian Government Style Manual. I’m sure scary doctor never thought that could be in my future.
More information: Visual Snow Initiative
* Tinted lenses are controversial and there is no scientific evidence for their efficacy in treating visual snow. My blue lenses seem to help with visual fatigue and sensory overload, but they’re definitely no miracle cure. Some people with visual snow also use rose-tinted lenses. Please make sure to see a behavioural optometrist for a proper assessment and precision tinting if you want to try something similar.
[1]Liu, G. T., Schatz, N. J., Galetta, S. L., Volpe, N. J., Skobieranda, F., & Kosmorsky, G. S. (1995). Persistent positive visual phenomena in migraine. Neurology, 45(4), 664–668. https://doi.org/10.1212/wnl.45.4.664
Image and video credits (in order of posting):
Television tuning via Giphy.com
Stars glow by Erica Anderson via Giphy.com
Blurred room photo by EK via Flickr.com. Licensed under CC BY-NC 2.0
Seurat, G. (1884-1886). Un dimanche après-midi à l’Île de la Grande Jatte (A Sunday afternoon on the Island of la Grande Jatte). Art Institute of Chigaco via Wikimedia Commons. Public domain.