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ASPartOfMe
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24 Jun 2021, 8:06 am

Drama Queen - One Autistic Woman and a Life of Unhelpful Labels

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I’m about ten years old. I’ve been invited to dinner at a friend’s house and I’ve just been served a huge slice of vegetable loaf.

I stare at the thing in panicked disbelief. This has to be a prank. Why would they serve me this? Do they hate me? It’s a monstrosity - muddy brown and densely packed with an assortment of ominously healthy looking green bits which have the potential to be unexpectedly crunchy. It smells like cat food. There is nothing in the world I’d rather do less in this moment than eat this slice of vegetable loaf.

Usually I’d find a way around this. I’d find something vaguely edible on offer (anything that contained carbs, cheese and tomato – the more pizza-like the better) then push the superfluous vegetables I’d taken (in a vain attempt to look normal) around my plate. Maybe surreptitiously slipped them to a parent or a potted plant. But today I’m alone – and this gruesome malty slice is the only thing on offer. There’s nowhere to hide.

I consider feigning illness but I’m a terrible liar. I break into a big, ridiculous grin the second I open my mouth to lie. It’s the biggest tell in the world. So instead, I take a deep breath and a big bite. I instantly throw up on my plate.

This incident, along with many others like it, would be retold for years to come as a damning example of my picky eating and spoiled nature. It was just one piece of evidence in a tapestry of unusual and extreme behaviour that earned me a lifetime of soul-destroying and confidence-crushing labels.

My formative years were confusing, bewildering and, at times, traumatic. It seemed to me that everybody else had a secret handbook for how to be a person and I was the only one without a copy.

Not only did I have extreme sensory sensitivities, which included aversions to bright lights, loud noises, clothing textures, strong smells, motion and, as my vomiting plate trick illustrated, any food that wasn’t pizza, but I was also constantly unwell with little ailments. I seemed to feel pain and sickness more intensely than other people. I was constantly exhausted and drained. I was physically weak and uncoordinated.

‘What’s wrong now?’ was a refrain I became depressingly used to, often delivered with a heavy sigh and an eye roll often followed by an encore of ‘can’t you just…?’ People started to assume I was putting things on for attention and, worst of all, they saw giving me the help and care I so desperately needed as capitulating to my drama.

I was scared of everything. Over the years, I’ve accrued nearly as many OCD tics as I have judgmental labels.

Things improved drastically when I met my husband, referred to affectionately by my family as “Saint John.” He was the first person to understand me to my core, to care for me without judgment or complaint and to quietly pick up the things I struggled with, including housework and shopping, both of which are profoundly overwhelming for me.

Then, when I was thirty, a family member with an autistic son casually mentioned to me that she thought I was autistic. At first I resisted the suggestion. My idea of autism was, well, Rain Man. And I was nothing like that. But she gently explained how autism can present in people who are socialised as girls and women –and how misogynistic preconceptions can be a barrier to diagnosis.

Reading a checklist of autistic traits in girls and women was like reading a profile written specifically about me. I took a test online called the aspie quiz and had an unexpectedly high score. Thanks to being extremely lucky to have my husband’s work health insurance, I only had to wait a month for a diagnostic appointment where a clinical psychologist confirmed my suspicion that I was never lazy, spoiled, rude, dramatic or any of the other self-loathing labels now stuck to me with metaphorical superglue. I was autistic. And, according to the clinical psychologist, it was a miracle that I’d survived this far and carved out a place for myself in a society that isn’t built for me.

Finding out I was autistic was like returning to my home planet. I found a whole community of people who think like me, have had similar life experiences and who just get it. For the first time, I was speaking the same language as my peers without effort.

It’s taken several years of unpacking my diagnosis but ultimately it’s been life changing.


Her book comes out in hardcover today.


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Professionally Identified and joined WP August 26, 2013
DSM 5: Autism Spectrum Disorder, DSM IV: Aspergers Moderate Severity

“My autism is not a superpower. It also isn’t some kind of god-forsaken, endless fountain of suffering inflicted on my family. It’s just part of who I am as a person”. - Sara Luterman


SharonB
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03 Jul 2021, 2:49 pm

This brought tears to my eyes. I was called "grandiose" (and not kindly). I'll look for the book. Thank you. :heart:



blazingstar
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03 Jul 2021, 8:21 pm

My story, too.


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The river is the melody
And sky is the refrain
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ArtsyFarsty
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03 Jul 2021, 10:01 pm

1. I’d like that veggie loaf recipe; sounds like Amy’s veggie loaf from the frozen section (yum!)

2. I had a similar experience being handed a cheese dog at a BBQ; I had never seen such a culinary abomination, and my New England-bred politeness was at war with my hatred of both hot dogs and cheese.