That rule-following little girl, she really wanted to be good.
She wanted to be able to eat all the food on her plate, even though the textures made her gag. She wanted not to shudder and press her ears to each shoulder in turn, every time you scraped your plate and it made that sound that sets off her reflex hallucinations and makes everything taste of bile.
She wasn’t trying to be difficult when she was given the patterned-metal knife and fork that made her cringe and cower. She wasn’t trying to put off eating. She tried to be good when she wasn’t allowed to change them, her knuckles white from pressing her fingers as hard as she could into the pattern, so that she couldn’t feel it anymore. Anything better than that overload of sensory information, like nails on chalkboard.
She learned to offer to set the table so that she could have the smooth ones. She learned that was being good. But sometimes teasing led to swapping the bad ones for the smooth ones. They didn’t know. They didn’t know it was real pain. There was no one to appeal to.
She didn’t want to disappoint you. She didn’t want to fall apart because we were running late and she couldn’t make that make sense.
She didn’t want to have to refuse to hug that person, but it hurt and she didn’t want that either.
She didn’t want to melt down so completely that she had no control at all. She didn’t like it either. It scared her and always got her in trouble.
She didn’t want to be wriggling because the seams in her socks were like iron bars pressing into her toes.
She didn’t want to panic when she lost her stim toy. She didn’t want to need it. She knew it was babyish and shameful.
She didn’t want you thinking she was prickly and sullen all the time. She wasn’t trying to be those things, she just couldn’t project her feelings right.
When you told everyone she was lazy and didn’t revise for her exams, she couldn’t explain why she found revision so hard. She didn’t know what executive function was.
When her back hurt, that was because she couldn’t keep on top of which books she’d need on which day, so she took everything always. Added to her hypermobility, it all hurt. She wasn’t after attention. She wanted to stop hurting.
When she freaked out, but should have grown out of it by then, that was her brain being unable to process the constant sensory and social bombardment.
When she overreacted to new things, that was her natural reaction. That will always be her reaction, but she’s found ways of dealing with it. Of hiding it and preparing for it.
She really wanted to be good. She really did. She knows she’s not who you would have chosen. She couldn’t be that person.
She didn’t understand why other people found being good so easy. They must all have the same problems as her. She was just naughtier, blunter, louder, grumpier, worse in so very many ways. She must be lazy and unlikeable, she must be, because all the evidence was there.
Almost all of it.
I watch that girl from a distance. There’s no one to blame. It’s not anyone’s fault that she is in pain and cannot see who she is. It’s not the fault of those around her that they don’t question for a moment that perhaps she functions differently to them. They don’t know what to look for.
To a degree we all assume everyone else thinks like us; the difference is that most people are right.
Being understood, in body language and motive, is vital to understanding who you are and how you fit into the world.
I wish I could tell that little girl that it’s all real, that the pain and exhaustion she feels, other people aren’t struggling with, that she’s not alone.
But that girl is long gone. She’s already been through stage after stage of getting it wrong. And worse, when she learns how to simulate doing it right (as imperfect as that will be) she will go on exhausting herself and berating herself for years to come.
The story doesn’t have a happy ending, because the story hasn’t ended. But now there is happiness. Lots of it, intermingled with regrets and if-onlys, but it’s there and I intend to keep it.
There is great value in knowing who you are. But there is a stigma to autism which makes people reluctant to apply that label, reluctant to give that value and understanding. All because some people don’t understand what it means.
Awareness is the first step. Acceptance is the second. The third is normalizing. Now there’s an ambiguous word, normalizing.
By that I mean we get to a stage where being neurodiverse is not a notable thing. It’s not interesting or fascinating, because everyone knows what it is and has a neurodiverse friend. Where we are all “out and proud” at work and at home. Where adjustments are routine. Where those who have sensory issues, but no diagnosis, are also able to access more comfortable environments.
No us and them, just us. Everyone. Now wouldn’t that be a happy ending?
Follow this journey on Autism and Expectations.