My son was diagnosed with autism shortly after his 4th birthday, prior to that I knew next to nothing about autism and sent off without so much as a leaflet about what autism is I turned to Google (obviously). I thought autism was this whole new world to me that I needed to educate myself about. But the more I read the more I realised autism wasn’t new to me at all, it had been part of my life all along, I just never knew it had a name before.
My first eureka moment was the realisation that my mum was without a doubt autistic. I recognised my mum in the descriptions I read of autism, even more than I recognised my son in them. But I didn’t see myself in those words, anymore than I saw reflections of myself in my son.
But then little things kept filtering through my reality perception filter, pricking at the bubble I had around myself, the illusion of who I told myself I was… hadn’t I always felt different from other people, always felt there was just “something” about me, something indefinable that put people off me? I read about how autistic people have “special interests” and thought about how I would borrow books from the library as a teenager on whatever topic had captured my attention, then I would copy them out word for word until I had collated folders full of information on the topic. And although I tried not to notice and not to ever think about it, since becoming a mum I’d really struggled to form any friendships with other new mums, I’d made myself go to mother and toddler groups and tried my hardest to make conversation with people. But while I’d seen friendship groups forming all around me, I was on the outside, not really connected to anyone and I had no idea why. The same thing happened whenever I started new jobs in the past. I could never understand why but it always happened.
Early on in my journey I attended an autism fayre and was listening to a presentation by a man who’d worked with many autistic children. He was telling the story of a severely autistic girl he’d worked with who barely spoke but as he got to know her he’d discovered she lead an intricate and complicated fantasy life in her head… that was one big needle that pricked away at my little bubble… I’d never spoken to anyone before about my own double life or the other worlds I’d lived in. But when I was about seven years old I’d decided that real people were too much hard work and I would live out my life in a fantasy world instead. To various degrees that fantasy world has been part of my life ever since, it shelters me from the real world, I hide in it, I don’t deal with things that happen for real because I make it all alright in that world instead, well, obviously it doesn’t actually make it right but I somehow make myself feel alright again. It’s complicated. But I’ve recently learned this is a common and well known coping mechanism for autistic people.
I’d never heard of anyone else doing this before, I thought it was a weird thing only I did and I’d never admit to it to anyone.
What a coincidence? That was uncanny. But me, autistic? Don’t be daft!
However, now I was slightly more open to the idea I started noticing more and more things, things that I usually tried to ignore or push away, things I buried and hid from in that aforementioned fantasy world (my reality perception buffer zone!) The way I get dizzy and kind of confused in supermarkets and similar places, is that a sensory issue? The fact I absolutely will not, under any circumstances try any new foods at all, however I’ve come a long way from my childhood when my dad joked that if it hadn’t been for baked beans I’d have died from malnutrition. I wasn’t a fan of eating at all… And hmmn, remember when I barely left the house for two years when I was 18, yeah, that was a bit extreme wasn’t it? The fact I need a long warm up period if we’re going to do something different because if you spring something new on me I’ll automatically say “no”, I don’t like anything different, I’m kind of scared of everything to be honest. I get anxious, I’m prone to panic attacks…
But how could I be autistic when my social skills were just fine? Maybe I was still a little on the shy side but I didn’t constantly come out with the wrong thing and I liked to think I could read people pretty well. I’d grown up around my mum making constant social faux pas and I was excruciatingly aware of the consequences and adamant I wouldn’t repeat them. So I’d spent a lifetime studying what the “done thing” was socially, I observed people, I noted what people liked, what annoyed people, what is considered good and bad, I copied what worked for people – I was an expert! To the degree that I actually said very little of what was in my own mind and instead put all my energy into trying to say the right thing that the other person expected to hear, whatever would make them like me. If it was honesty they were looking for I’d struggle. Anyone reading this who knows about autism and “masking” will realise that my social skills sound a hell of a lot like masking. It is a performance, I even have a running commentary in my head of how well I’m being received and I am terribly unforgiving of any perceived mistakes. I can’t actually be around people for great lengths of time because I need time to breathe, to not be “on”, it’s exhausting.
But whether this was masking or not, I got it right didn’t I? I had friends, close friends, wonderful friends who I’d known for many years, the odd person here and there who I’d connected with and held onto… okay so I struggled if anyone new was introduced to the group butbutbut… I was married, I had a job, I had kids, I seemed relatively normal in social situations, no one would mark me out as odd… So autistic? Doubtful.
I eventually found my way to blogs written by real, genuine autistic people and I started recognising myself in them, they gave me the terminology to understand and explain myself. And I started realising that some of the things I did socially weren’t actually the right thing to do, I recognised my tendencies to overshare; infodump; monologue. Some of the things I did wrong I didn’t actually realise were wrong until I heard autistics discussing their own social faux pas and I felt mortified that I’d been doing them too. I started to understand some of the reasons I’d not formed close bonds with those other mums in the mother and toddler groups, lack of social energy aside.
But this blew my self-esteem and confidence out of the water. Which is where you find me now, struggling to find my voice again and wanting to find a way to accept myself again. My fantasy world, while still there, has stopped me facing up to my own truth and now if I’m to get anywhere I need to find it and embrace it. For my sake and my son’s.
Initially I rejected the thought that I might be autistic. What does that even mean – that I’m disabled? I don’t feel disabled. And all the people in my life who think they know me – does this mean I’ve been lying to them all this time and the person they love doesn’t exist and therefore ultimately, I’ll lose them? I’m terrified of loneliness more than anything in the world.
Eventually I decided to pluck up the courage to ask for a referral for assessment, I’ve been on the waiting list for about 5 months now with no end in sight. I don’t know whether I’ll get the diagnosis, although there’s much evidence for, what if I fall below the clinical threshold and they decide it isn’t necessary? I’m not sure where that will leave me. If I’m not autistic what am I? Does it matter? Maybe the important thing is not the label but just discovering who I am and finding a way to work with that, rather than continuing to swim against the tide.