Having written nothing over the summer I expected little response to my first blog post since June. But after hitting ‘Publish’ on a piece about faking my way through life I grew worried people I knew would feel angry, duped, lied to. I was prepared for accusations of weakness – why couldn’t I find the courage to ‘be myself’? Online shaming being the modern equivalent of the gladiatorial arena, the prospect scared the hell out of me. But what I feared couldn’t have been further from what happened.
Within days of publishing How People With Autism Fake It over ten thousand visitors dropped by to share their own similar feelings. Over three thousand shared the piece on Facebook. You broke all my previous records! Thank you for the warm welcome back.
In writing that post I’d inadvertently run my fingertips over the tight and uneven scar tissue of something known among autistic adults as ‘passing’. Many of us have spent years learning what’s appropriate and what’s not so we don’t offend or stick out in social situations. We expend huge amounts of energy blending into the swift current of the neurotypical world flowing over and around us, relentless as a waterfall.
I shouldn’t have been surprised to discover we all grasp at opportunities to come up for air. But I was. Your responses in blog comments and tweets made me realise there are lots of us – lingering in garages by the recycle boxes, loitering on darkened driveways after taking out the trash, or soaking up the solitude of the basement store cupboard when grabbing a spare toilet roll – little oases of calm in a world of social and sensory overload.
An adult autism diagnosis arrives on the back a lifetime of feeling different without having a name for it. I finally got a name, but no advice, no suggestions of what to do next, what to expect, where to go for help or how to process this new information, as though by reaching this point in life it’s a given I have it all in hand. The reasons that brought me to seek a diagnosis in the first place were all I had, and they were just the tip of the iceberg as I gradually woke up to the many ways autism impacts (and has been for years) my daily life, overall existence and world-view.
Disabilities and disorders have their own character but they exist within a character, they don’t take place externally. Like fingerprints, autism is different from person to person, hence “If you’ve met one autistic person, you’ve met one autistic person.” Understanding yourself is even more complicated when the condition is in your genes – you have never been without it and never will be. It’s laced into you like a strand of spaghetti in a bowlful of the stuff. The scars left by your condition and the steps taken to manage it are integral to your personality and perception in a way something viral isn’t.
After reading the post a sympathetic friend emailed to ask what she could say or do that would be helpful. I thought about telling her not to accept ‘No’ for an answer whenever she suggested we get together but I couldn’t commit such self-betrayal (which, on reflection, is a good thing: recognising and respecting my limits). Anyway, even when I tell myself it’s probably best to get out and about, I’ll excuse myself from my own advice by saying Everyone’s Different. Sound familiar?
So what are the cognitive equivalents of dropped kerbs and wheelchair ramps? I don’t have the answers but I know a few things that would help. Making accommodations for disability is something society knows how to do yet we’ve only just begun to explore the possibilities of options like customising curricula to suit the learning styles of individual students, offering assistive tools, alternative methods of communication and more universal measures of intellect and cognitive ability.
The gender gap in autism diagnosis (4 males: 1 female) speaks to the need for diagnostic criteria that take into account gender differences. Talk about raising awareness mostly refers to how autism is perceived by ‘Joe Public’ but there’s a real need for increased understanding among healthcare professionals to pick up on the different ways males and females present and help more of us avoid a lifetime of misdiagnoses and unrealised potential.
Add to that better follow-up after adult diagnosis: options for counselling, information workshops, and groups! Groups are something we need more of, run by and for autistics. Hearing a range of other people’s experience is the single biggest aid to making sense of yourself. Internet forums have been hugely influential to my progress because they come from a place of real experience not sterile, clinical inference.The information is firsthand, and far more accurate and powerful than any other resource available. Very often it’s where you shed your sense of inadequacy as you discover what are aspects of autism in you and what are not personal shortcomings.
I’ve mentioned before how much harder it is when people minimise the implications of autism by saying everyone’s somewhere on the spectrum. These comments are as detrimental to us as the misuse of the word ‘depression’ is to those who suffer the clinical form of that mind-altering melancholy.
To those who ask, ‘But really… isn’t autism just a “difference” rather than a disability?’ I’d have to say it is a disability – and one so profound and pervasive it affects nearly all aspects of a person’s life. But when it’s your only known universe it’s an uphill struggle to show how it differs from an alternate reality you have no knowledge of, like asking someone who’s never drunk tea how it’s different to coffee. With the black and white thinking typical of our condition we either take it for granted that others see things the same way, or are completely flummoxed as to why people behave as they do.
If people realised how hard autistics have to work to connect, they’d understand… empathy is a two-way street.
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