As is always the way at the turn of the season, when the darker nights draw in, my awareness turns inwards and I find myself introspecting on the lessons offered by the preceding months. I rarely post on my blog these days, I’ve been channelling much of my creative energy into other things. But with some exciting plans in motion, it feels like the right time for some retrospection.
And a little bit of truth.
I'm not shy about the fact that authenticity is a number one priority in my life – the authentic self, experience and truth are what make me deeply happy. I wrote an essay about authenticity being the greatest human pursuit some years ago, and how a breakdown and subsequent ill health led me down a vital and affirming path of self-discovery.
In the years since, I've spoken openly about my diagnoses, of Generalised anxiety disorder, fibromyalgia and Hypermobile Ehlers Danlos Syndrome. But the truth is I always felt like some piece of the puzzle was missing. Perhaps the largest part.
The disabled community I've been privileged to be welcomed into within the writing community has not only been hugely supportive, encouraging and empathetic but also enlightening. It's here I first became fully aware and accepting of my pansexuality, my chronic illnesses and latterly my neurodivergence. I've always been different. "Odd" and "weird". I never minded it a bit. Even when I was bullied excessively throughout primary school and a little in high school (perhaps ostracised would be the more apt word choice at that point), I still held my head high in the security that I was simply being myself. And I liked me.
It was in this community where I met Autistic people who were like me. People who challenged and disproved my ignorant notions of what it meant to be Autistic. People who feel the spectrum of emotions as keenly as I do, who cry when they see pain, who don't understand unkindness, manipulation and ill-treatment. People succeeding in life and work – particularly in the fields of their interests. People with degrees, PhDs and a wealth of life experience.
There were a few key interactions, which really got me thinking deeply about the possibility I may be Autistic. It was a review that I did of a documentary-film about Autistic women that really drove the feeling home, however. (Watch it, it's beautiful). Females are more often termed 'high functioning' because we exhibit different behaviours to males, namely we mask our true behaviours and our confusion by expressing expertly learned behaviours. So we are often described as 'swans' because whilst we appear to be gliding along on the surface of things, we're kicking our legs furiously underneath just trying to stay afloat.
Following this, I was invited to speak on a panel with Catriona Stewart, founder of the Scottish Women's Autism Network (SWAN), where Catriona told me she'd heard my story time and again from Autistic females. Misdiagnosis (fibromyalgia, generalised anxiety disorder) was common, and many people had to push for years before getting anywhere. I joined the Facebook group and found myself connecting with an incredible group of people all sharing tips, advice and similar stories.
I asked for a referral, and got the letter saying the wait list for assessment was 2 years. I wrote in, I sent a 50-point list of traits, I explained how I believed much of what I struggle with (cognitive dysfunction, brain fog, memory issues, anxiety, dissociation, inability to focus on work whilst also focusing too long and too hard) was due to my being Autistic. Thankfully the SWAN group came through and someone recommended Number 6 charity in Edinburgh who have been carrying out assessments since the pandemic kicked off. I got my referral transferred and was attending my first assessment within two weeks.
The process took a few weeks, there were several interviews, a phone interview with my husband, and a formal ADOS assessment. But my assessors were in no doubt, I am Autistic. And what's more, it was pretty clear to them within the first few minutes of meeting me.
Cue the onslaught of memories of every traumatic life experience I've ever had, flooding over me with a renewed sting. Much of my life makes way more sense and my identification is a relief. I was never alone, the neurodivergent and Autistic community had my back, but still, I felt affirmed. Validated. I know who I am.
And I am Autistic.
Even now, it feels so strange to say.
I wish I could have told it to the people I worked for, in my early days of trying to break into the publishing industry (from a background in Biomedicine). I wish I could have told the puzzled publisher why I struggled to focus on typing-up boring mail-outs, as she handed me a patronising bullet list of things I could try to achieve before lunchtime, or when she told me sweetly I might want to stick to being a bookseller and running events instead of moving into publishing.
I wish I could have told the aggressive boss that her violent mood-swings only made me more prone to forgetting to ring things up on the till, or more likely to drop the tray of hot coffee.
I wish that I could have told my first peer, the first person to ever take me on as a publishing intern, that yes, I did study Biomedicine, and yes, not only did I study it, I did in fact complete my degree. I wish I could have told her, that no, I was not 'a little puppy she was kicking in the face' when she told me about bad news in the world. Things she shared over email with friends, in an account she had me monitoring for submissions.
I wish I could tell them I will rise above it, use it as fuel and motivation to keep going. And that it hurt. That even now, I still question my own intelligence and worth and merit, in every new interaction. Even when I know I have all these things in abundance. Logically, I know. But the voice whispers and makes us doubt. The ever present voice of ableism and ignorance.
It's taken years of dedicated introspection, self-awareness, counselling and determination to get here. It's thanks to beautiful, empathetic, mutually respectful friendships, that I've been able to grow from my experiences. And thanks to my relationship with my husband, who I've been with since I was sixteen, and who has loved me and weathered the storms with me no matter what they bring.
These experiences are painful and they have shaped me. It's my hope that others following behind me will not meet the same attitudes when they come to work in the publishing industry, and I'll be posting a follow-up blog to this one soon, which talks in more depth about the barriers I face as an Autistic writer.
I will also be launching a long-standing project this coming week which I hope will go a long way to challenging stigma. perceptions and poor behaviours towards disabled people or people who are different, in the literature sector.
For the first time, I am proudly, excitedly saying I am Autistic. I'm an Autistic writer, journalist and accessibility consultant. I went freelance when I couldn't hack the strain of the rat-race, about seven years ago, and five years ago I committed fully to being a writer. I am phenomenally proud to have written a Young-adult novel which has been shortlisted for two awards, and to have been mentored by an author I admire deeply. I am proud that I set up my own consultancy, advising literature organisations on accessibility. And now I'm launching a project with a dear friend (the incredibly talented author and fellow Crip, Ever Dundas) which we've been diligently working on since January (though we've been discussing it for years).
I am proud that I got here, not despite my being Autistic, and not because of it – but because of the entrenched, systemic, ableist barriers I've overcome, every day. Because despite the toxic bullshit that society labels us with, throws at us, tries to make us believe, we always know who we are.
I know who I am. And I’m not going anywhere.