Monday 23 November 2015

Girl, interrupted

The quietness of rage started during the pre-assessment process for ASD. 'You do have friends don't you?'

It's such an innocent question. On the face of it. I mean who the hell doesn't have friends in the 21st century? Who doesn't have at least 100 of them on Facebook, a few thousand followers on Twitter, a few more on Instagram? In such a hyper connected world where we share the minutiae of every living moment, how could we possibly not be positively dripping in friends?

At that moment, I laughed. It was bitter. It echoed emptily, as emptily as my life. I had no friends. Not a single one. No one to go for coffee with. No one to sit and natter with. No one to play board games with.

No one. Zero. It was the most hurtful moment of the entire process. A light shone on an empty world and an empty life. It wasn't to be the last. As the questions progressed I realised that second by second, every thing I thought I knew about my life was a joke. A fallacy. A holographic image destroyed progressively by a man I'd never met before and would never see again.

This is what the diagnostic process of ASD is. But if you're a girl, it's so so much worse. None of the questions speak to you. None of them resonate. All of them have to be thought of side ways. Take the collecting question. 'Do you collect thing such as stamps, insects or toy cars?' they asked me. I bit my tongue on the retort that I was a 37 year old woman. I'm good like that. Mustn't make a scene don't you know.

I just asked if he meant my collection of OPI nail varnish I never wore or the collection of MAC pigments that, equally, I never wore. Point made. Box ticked. On we go.

I left the pre-assessment feeling erased and empty. As if somehow, being autistic wasn't alienating enough, the professors who'd put this thing together had also erased my gender. I am woman hear me roar? More like I am woman, I'm so sorry. I've broken you're empathy quotient, your autistic quotient, I'm so sorry.

In the end I was diagnosed by a woman. A woman who wore as many rings on her fingers to twist and fiddle with as I did. What you thought they were for decoration? You idiot. No they're not. I was diagnosed as 45/50 - it couldn't have been more clear cut if it'd tried. No borderline case here, oh no. Definitely autistic. And yet the stupid kept on coming. 'You can't be autistic!!!' rang the cry. Because I his it so well? Undoubtedly. Because the hiding nearly cost me my sanity? Oh definitely. You will never know. There aren't words.

Instead there are words for what listening to other autistic women's experiences are. Oh yes there are. From family who refuse to accept it (it's genetic is a truth too hard to accept) to 'oh no you can't possibly be, you're nothing like my husband/nephew/brother/male friend'. All of if ridiculous. All of it invalidating. All of it fuelled by a perception of autism which is male dominated.

But thems ain't the real doozies. The real doozies are the letters written to occupational therapy asking if an employee has read a list of autistic symptoms and decided to emulate them because the employee can't do some tasks. The real doozies are the ladies told that they just have anxiety and should cease and desist from spending any more time with autistic people because it is 'fuelling their delusion that they have autism' - women who go on to be diagnosed as autistic.

If you want to know the definition of invalidation as a human being who struggles, who is terrified, try those. They are truths. I can't point you in those women's directions. They are otherwise intelligent, bright, shining stars of women who have been treated in a way which can only be described with one word.


And it has got to stop. This ridiculous fallacy that autism is male has got to stop. This ridiculous misrepresentation of what autism is in women has got to stop. This invalidation of who we are, how we are, and how we see the wider world has got to stop. We are an intelligent society. We pride ourselves on the fact that we accept gay marriage and are not bigots, that we don't discriminate, that we don't hate.

You are hating on us. You are erasing us. You are prejudice in your diagnostic questions and you are doing real harm to the women who are autistic. Your refusal to accept that we present differently
, that we look different, that we sound different to our male counterparts is removing help and support from us that we desperately need.

I don't know what the answer is but I will find it. Because this is removing the capacity to under stand, to be understood from so many women. And it wouldn't be happening if it were happening to men. I am tired of hearing this tales of woe and I am tired of being erased.

I am a woman. And I am autistic. And you're not helping.

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