Sunday 2 November 2014

What I mean when I say I'm autistic

This post appeared on my Facebook timeline and it's made me think a lot about what Autistic Spectrum Disorder actually means.

I actually don't exist as a diagnosis. I was diagnosed in February this year, all official like by a Clinical Psychologist via a charity which has received permission from yet another official centre for diagnosis in Nottingham to diagnose away from that centre. Which is good because I live a long long way from Nottingham.

I was actually officially diagnosed with Autism Spectrum Disorder but the assessment and diagnostic process I went through was for Aspergers Syndrome. I score 45/50 on an assessment which was based partly on about 100 questions (I think it was that many) that were short and to the point, and then another assessment with the psychologist who also assesses your behaviour, speech patterns, body language etc. A combination then brings you to the final number out of 50.

I scored higher than I thought I would. This made me feel like a fraud. Then I started reading every book and article I could lay my hands on about women and Autism and it all suddenly started to make sense.

Drag queens and transvestites used to call it passing. Looking so much like the woman they're intending to be that no one bats an eyelid as they pass them in the street. It seems to me that one of the biggest themes running through literature relating to woman and autism is 'pretending to be normal'. Of passing. Of not blipping on anyones radar, of learning to hide things which mark them out as different or unusual.

I also realised that this is a skill I don't have. I cannot pretend anything. Either I feel something or I don't, believe something or I don't. Want something or I don't. There is no artifice, no deception. You get what you see and you hear what I think.

But I must have been hiding something because my behaviour has changed slightly since I was diagnosed. I stopped apologising, first and foremost, for things which were not my fault, not my monkey and not my worry. I stopped disclaimering everything, trying to preempt issues before they arose, trying to smooth the way for everyone else but myself. I stopped thinking 'I mustn't do that, people will stare' and starting thinking 'That helps me exist in this world without harming my mind, I'm going to do that now'.

A diagnosis is for no one else. It's for you.

In a lot of ways, writing this is for me, not for you.

I am learning to be, by my own slightly warped definition, selfish. I'm discovering who I actually am, not who everyone else thinks I am. Whatever you think I am that's what I'm not has never felt truer. I am capable of enormous love, care and kindness. I have wonderful friendships which yes, require a little more conscious processing and conscious stepping than for most, but it's amazing what 'no really, you actually seriously have to be blunt with me and tell me the truth' conversations can do. I go to counselling fortnightly and walk out of every session a little taller, a little more grounded, a little more assured of myself, my identity, and where autism has shaped me but also fits around me.

The storm of before is quietening and in its wake is a blissful space in my mind. It's not until the noise stops that you can understand why there was no more room for any more data in there. I had reached capacity. In computer terminology my hard drive blew. I never ran defrag. I never reordered. I never deleted the documents I no longer needed to keep right at the forefront of my mind.

A diagnosis is your key to yourself, but also the key for others.

I never realised I had super powers. Not like Iron Man. But I never realised that in the process of, for example, my amygdala completely not functioning the way it should, other bits of my brain fired double time. I never realised other people couldn't just read a page of text, process it and then summarise it in 2 minutes. I didn't realise other people didn't stop in awe at how the rain was slanting through a streetlamp at a tram stop in a city full of dark and grey. I didn't know that sensory issues can also be wonderful things, that the same thing which means I have to cut out labels sometimes still as an adult means that I drown in cotton wool dreams when soaking in the lighting and sound and heat of a gig.

Everything balances. He/She gives, and he/she takes away.

Spectrum means just that. It means a collection of symptoms. You wouldn't notice if you weren't intensely social animals, herd like in your tastes and clothing. I stick out unless I try not to and the sheer amount of processing required from me to not stick out is something I cannot do any more. I can't. My body has clearly and loudly drawn a line and told me that if I push much further I will have burned through everything and there will be no replacing that. So I have to choose. Select which things I will allocate processing to and which I wont. Combined with an autistic hyper focus which often means I forget to eat or drink this requires some careful managing. I'm still not there yet. I'm not sure I'll ever be there. Looking after myself is difficult. There I said it. Remembering to eat and drink, to eat and drink the right things at the right time, to wear the right things to the right places for the right weather, to say the right things to the right people in the right order but only when they look like they want to talk but not when they don't but I have no way of knowing when that might be because I need to know someone super well to be able to read their body language and I do mean super super well and the chances of getting to know someone I work with fast enough to be able to read before I say or do the wrong thing is just impossible and there's always so many people in teams and I've to learn all of them and of course I'm trying to tackle this problem intellectually and analytically but people don't work like that, they're not zeroes and ones and...

That's what you pay for your super powers. Alone. Lonliness. A constant feeling of other. Knowing you're always going to be 1/2 a second behind no matter how fast your brain is computing all the possibilities. Knowing that it's inappropriate to tell someone you've only just met a list of things they are and aren't just from seeing a few tweets and briefly meeting them - yes way before Sherlock and yes I wince a lot but also I love it because someone else is seeing what I see how I see and no I don't have a mind palace, don't be ridiculous but  I totally bet a whole load of autistic people do...I'm not appropriate. I am not polite. I am not intentionally rude but apparently I am accidentally quite a lot of the time. I am blessed with just enough self awareness to know when I've misstepped yet again, just enough social awareness to know I'm being ignored and frozen out with just enough unawareness to be oblivious to the why.

I spend a lot of time looking at people and wondering why they're being so cruel, so vicious, so bitchy.

But I also spend a lot of time now thinking that not all people are like that. Not all people are like that all of the time. I have interpreters, friends who patiently and gently explain that no, that's not what was happening in that situation at all, this was, and actually I misread it and this is how I can not misread it again.

Counsellors can't solve everything. They're an incredibly important piece of the puzzle, but they can't tell you the things that friends can tell you.

So actually, this is a post about friendship, really. It's about finding myself and who I am. It's about the quiet coming where before there were storms.

It's about getting better. And that's what I mean when I say I'm autistic. I mean, I am autistic. But I also mean, I am me. I am getting better.


  1. I love your post. I have an amazing 10 year old son on the spectrum and my biggest worry is not being able to see things from his point of view. It always helps me understand a little better when I read posts like this.
    Your post also helps to shatter those awful stereotypes that people associate with autism. My son is funny and affectionate...traits you never saw celebrated in Rainman!
    The loneliness that goes along with autism breaks my heart. I'm glad you have good people in your life to help you deal with this XXX

  2. Hi Lou,

    Your blog is well-crafted, poignant and great. I am also a civil servant and am awaiting my Asperger's assessment. It's a strange world isn't it?