For those who don’t know, this week I’m having my autism assessment.
This is round two, because the first time round I saw someone who didn’t really listen to me, massively underestimated a lot of my problems, and so I took advice from friends, the internet and a psychologist I’d been sent to for the wrong type of therapy to go ahead for a second assessment. Thanks to the enormous generosity of friends, family and internet strangers, I’m due to have a private assessment on Thursday. It’s actually my second attempt, because one of the doctors was rushed to hospital back in September when I was first supposed to have it.
And so, as I’ve learned from the last two experiences, I am fully in the throes of anxiety about it and battling imposter syndrome. This is something I’ve seen in many other autistic adults awaiting assessment – all our lives we’ve battled that feeling of outsiderness, internalised our problems (and sometimes had them minimised by others around us) and worked to appear as normal as possible. When you are told you’re just shy, socially awkward, “a bit weird”, you tend to chalk it up as just that. It’s only when you’re 27 and it’s eight in the morning on a Sunday and you are reading up on Asperger’s in women to understand a friend’s needs better that you realise you’ve missed a biggie. You are reading yourself on the page. Despite that, you can’t shake those old feelings.
A friend of a friend explained away these fears well – very few people read things about autism and no one goes hey, I’ll go get an assessment on a whim.
I’ve found comfort in reading all my life. Fiction taught me many of the social norms I didn’t know, helped me understand how others perceive problems, helped me make sense of the world but also escape it when it got too much.
And in the same way, books featuring autistic characters have actually helped me understand myself better. Two that I’ve read this month hit that mark particularly – Mockingbird by Kathryn Erskine and the upcoming The Original Ginny Moon by Benjamin Ludwig, which will be released early next year. It is not often that I read a 1st person narrative that I totally understand. I can sympathise and enjoy but never really go, heck that’s how I see things. But both of these were that.
Mockingbird follows twelve year old Caitlin, whose brother was recently murdered in a school shooting, as she comes to terms with his death and her father’s grieving. It is a children’s book, suitable for those aged 9 and up. Kathryn writes Caitlin’s thought process so well, so on par with my own. The way she describes remembering to look at someone as Look At The Person. This is what it feels like – its a conscious thought. Its that mock interviewer telling me I never looked him in the eye and he found it disconcerting and weird, and how I learned to look around people’s head in a weird halo, timed to the 30 seconds… until I realised that was also disconcerting so now I look at people’s mouths with fleeting glances to eyes if I really have to. My work friends described as my fleeting little looks, like I’m peeking out of myself to see you. Her struggles with literal phrases remind me of being a very confused child, knowing that it was something I was supposed to get, but luckily being an advanced reader meant I came across idioms early enough to have a mental reference for what it is and what it meant.
The Original Ginny Moon is a book of another ilk, following Ginny in her first Forever Home after being removed from an abusive family environment as a child and her desperation at getting her Baby Doll back to keep her safe. What I recognised in myself from Ginny was her trouble with explaining context. So often I’ll launch into conversations with people and forget that they don’t always know what I know. This lands in two ways – either I get frustrated in explaining the context to someone who understandably doesn’t understand what I’m talking about or I explain ALL THE CONTEXT possible. For Ginny, people don’t do that work to understand what she is talking about, and her motivations. Her recklessness too reminds me of my younger self. When you have a goal you are determined to reach – for her, Baby Doll, for me, going on wild adventures to work as a marine biologist – nothing can stop you, not even your own limitations. You go weirdly against yourself because you become so very, very fixated on reaching that goal.
One of the commonalities of these novels is the struggle to be understood and heard by those around us.
It is a relief to know that these narratives come from parents of autistic children. They have first hand experience of that disconnectedness that comes from mistranslation, how awkward it can be to bridge the gap between two different languages when you are missing most of the dictionary. I also found a small resonance with Tilly in Caroline Pankhurst’s latest novel Harmony – luckily not her anarchic behaviour, but her accidental bluntness, rudeness, and her eventual learning to suppress what is not socially okay.
Of course, autistic people are very different and there is no single autistic person that we can hold up as an example of what the rest of us are. However, it is certainly possible to see aspects of ourselves reflected in the words of others, or even just situations we’ve been in before.
I’m currently reading Autism, Anxiety and Me in order to help me vocalise some of my problems – the book is a joint project between Emma and her mother, with an entry by Emma followed by her mother’s explanation of how to help your autistic child navigate the situation. It’s a very good parent-child book, but also Emma’s mother’s explanations help me understand what it is that I’m baffled about in certain contexts or why I never have understood that alpacassos and books don’t count as essentials, finance wise.
Some people would argue it’s not good to obsess over what’s coming, but obsessing over it is partly how I cope as well as a problem in of itself. Thanks to books, I feel much more equipped to answer questions about who I am.
My work-in-progress book list The Essential Autie List can be found here.