Where’s the Poet? Or: to ‘be autistic’ or to ‘have autism’?

The first question may sound daft and the second rather pedantic, but they go to the heart of an issue many autistic people and their families wrestle with.
If you say ‘I have autism’, it means there’s someone who’s got this thing, autism. But many, many autistic people have – as one of our core impairments – a really fragile sense of self. It’s not quite imposter syndrome, but close.
Certainly, decades before I was diagnosed, I used to wail that I was a fake person. While I’d race through most of my annual appraisal forms at work I’d really struggle with the bit that asked for your hobbies or interests and where you saw yourself in five years’ time. I never knew what to put. I’d go with my partner when he got into windsurfing – I ended up managing quite well. Or fell walking when he got into that. I used to be fairly fit and I definitely enjoyed spending whole days out of doors, ending up at some 18th century pub in an idyllic setting, downing a glass or two. But these were not things I cared enough about to do on my own.
And as for hobbies??? Well, I read. A lot. Mostly, when I was in my twenties, science fiction. Britain was just coming out of the golden age of sci-fi, before hard sci-fi or magic realism had some along, and before it had been merged with fantasy. These early authors used fantastical stories to explore what it meant to be human. And now, of course, I know why I wolfed them down.
But put that on my work appraisal form? No way!
But it was all I had. If I stopped to think about it, I realised I was doing what everyone expected me to do (for everyone read parents, partner, employer). So what I was basically doing was copying everyone else like me – educated, white, 20, 30, 40 year old adult female in Britain in the late twentieth century. So typical for autistic girls and women.
Certainly my job – a local reporter for the BBC, specialising in uncovering original stories – was something I believed in very deeply. It played to my strengths – especially the bit about speaking for the underdog. That may not be official BBC policy, but it’s one I adopted very early on. ‘Speaking truth to power’ – that’s similar and that IS official BBC policy.
But I did it without it being in any way a vocation. I did it to the best of my ability and cared very much about every story I covered and the people who shared their stories with me, but it was a job.
I wrote always and my private writing was my poetry, some of which has now been published. And as the blurb on the book cover says, my emotions were laid bare in those words, which I never intended anyone else to see. (So why did I approach Austen Macauley to have them published? Fair question. My parents had both died in 2019 and I felt very lost. I though getting published would validate me somehow. And you all know how that story ends. But I didn’t know that then.)
So, I never felt like a real person. And when I was diagnosed, I realised that all those things I thought were unique to me – my sense of humour, my intelligence, my love of words, my doggedly worrying at a story until I got beneath the surface – all these, and more, were traits common to thousands of autistic people. Yes, my particular mix is unique to me, but what I share with all other autistic people, our core impairments, are the same for all of us. I really struggled for many years to think of myself as anything but ‘autistic person’.
And take away the autism and – you’d have nothing. That’s what I thought. Indeed on bad days it’s what I still can think. The autism was there before I was born. It changed how I experienced the world and changed how others reacted to me. I didn’t smile as early as other babies, nor as much. So people didn’t engage with me so easily – not much of the peek-a-boo games from behind hands or baby-talk, since I just didn’t smile as required. I wasn’t hugged as often, since I appeared not to enjoy it.
So in a very real sense, if you took away the autism you’d not have a Clare Smith. I’ve no idea how I’d have turned out if I’d been born neurotypical. Certainly not me.
My experience and my struggles with this are very common among autistic people. So rather than saying I have autism, it’s better to say I’m autistic.
When I was first diagnosed I had this horrible image of autism as a sort of external neural lace or maybe one of those fairground grabbers which kids manipulate to grab cuddly toys from inside a glass tank. It had its spikes sunk deep into my brain, controlling everything, changing everything.
It’s taken a long time to ditch that idea but it has evolved. I know the autism is in every cell in my brain – and throughout my body (I’ll write another time about the myriad other physical and mental health disorders we’re commonly lumbered with too) – but it feels less invasive, less nasty now. I think that’s reflected in my poetry. Several of the poems are my howls of rage at autism, but in others I can see me coming to terms with it.
Certainly watching my children learn about it, and my youngest – who is also autistic – come to terms with it, has helped me tremendously. I hope that’s reflected in my later work. I think it is.
Woman’s Weekly magazine has just published an article about me to celebrate World autism Day. They got this. They reported faithfully my conflicting feelings about the disability and while they ever so slightly sugar-coated the pill, it’s still a good, strong, inevitably heart-warming read.
So now I can say, as their reporter did, autism doesn’t define me but it is integral to who I am. I am both unique – like everybody else – and share commonalities with others, especially all other autistic people. And if those impairments and gifts have helped me write better poetry, then may be that’s why I’m alive and I’m not a fake person after all.

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