Today is Autistic Pride day and I am contemplating what that means to me. My journey since discovering I was autistic has been one of ups and downs. I’ve had a lot of rethinking to do, a lot of processing, a ridiculous number of times exclaiming, ‘Oh that’s why I reacted like that; it was a normal autistic reaction, not a weird non-autistic one!’
It’s now been five years since my official diagnosis. Although I suspected for several years before that, it was only when I was given confirmation that I actually felt able to begin to treat myself with a little bit of kindness.
In the early days I was fiercely defensive of the label. It’s so common to be met with denials and misunderstandings. I think ‘You don’t look autistic’ is still one of my most popular posts alongside ‘I do that too!’. It felt like a slog, it felt exhausting to explain over and over again what me being autistic really meant, how it affected me, why I was different to the stereotypes but that didn’t mean I was less autistic, whilst I was still dealing with my own emotions about what it really meant to me.
There was a sort of grieving process I had to go through. I would imagine myself as a little girl, having been misunderstood, or suffering sensory pain, or needing to stim, or getting things wrong, and I just wanted to go back and tell her that I finally knew why. I wanted to hold her and tell her that one day she would know, that it would all make sense. I wanted to explain to her which rules are utter nonsense and that how she is is just fine. I wanted to teach her not to mask and to be herself.
But I couldn’t. You can’t go back, and if you spend too long dwelling on what could have been, instead of living life, then in future years you’ll be thinking the same things about your current self. You’ll wish you’d done this differently too.
The grieving for what could have been was important, and so was finding my voice. I began to write this blog about six months post-diagnosis.
It was how I began to find other autistic people, it was how I entered the world of autistic pride and culture and found a smorgasbord of humanity. It pleased me to know that autistic people were just like everyone else. There were lovely people, kind people, funny people, selfish people, happy people, sad people, angry people, anxious people, ridiculous people, hopeful people, generous people… everyone was there.
The stereotypes of autism looked more and more farcical the more people I met. The only thing I had in common with everyone was the way that my brain processed information, and even that varied hugely. I learnt that not all autistic people have my love of logic, I learnt that levels of empathy vary enormously in the same ways that they do in every other population, I learnt a lot.
Autism became my interest for a while, I researched and read and poured over everything I could find. I found that autistic academics made the most sense to me, probably because they didn’t need to be taught some basics that other researchers seemed to never have learnt; simple things like understanding autistic people are people seemed complicated to many.
Then one day my flurry of research ended. I am someone whose interests are passionate, all-consuming and ephemeral. I never truly leave them behind, but my focus shifts. I envy those of us who have one great passion in life. What it must be to have the time to learn every tiny thing about one subject without being distracted by a new love. I am unfaithful in my fascinations.
I came to realise that actually my interest is singular, it’s just bigger than autism. My passion is people. I have spent a lifetime trying to unravel and understand the seemingly chaotic patterns of humanity, and realising I was autistic was a vital step. I was trying to logicise things without knowing the rules.
When I got diagnosed it wasn’t really a diagnosis for me. Even though it helped me understand myself enormously, and it finally taught me to treat myself fairly, it was really a diagnosis for everyone else.
On that day I learn that other people work differently and so I cannot apply my own motivations to them. They work by different rules and different passions, and to be truly kind is to be understanding across neurotypes.
Five years on and I am fully accepting of who I am. I am proud of the work I do, I am determined that this world can be changed for the better, I will keep sharing the brilliantness of autistic people, and I am as close to content as I have ever been.
In 2017 I wrote my play, The Duck. Although I have sat through many of Lucy Theobald’s incredible performances of it, I hadn’t read the script for a while.
When Lockdown happened and all my public speaking events and The Duck’s tour and visit to Edinburgh Fringe were cancelled, I decided to record a reading of the play to share online.
It’s very different to the performance since all you have are the words, but since language and communication are a part of my passion for people, there are quite a lot of them.
For the first time I had to sit down and just read what I had wrote and listen to what I had to say. The play deals with issues of labelling and misunderstanding and pathologising autism. It relies on my own memories to explain these things, and that can make it uncomfortably close to home at times.
When I had finished reading it and turned off the recorder, I sat for a while and came to the conclusion that I couldn’t write it now. Being autistic was something new to me, it was a beacon, it stood out as my most relevant label because I was still processing the information I’d been given.
Being autistic is still an important part of who I am. I am proud of being autistic, I am so lucky that it lets me see the world how I do. I am so grateful for the sensory joys it brings me, and accept that the sensory pains are a part of that. I am lucky in certain ways and less lucky in others. I hate the exhaustion of processing, but I love the clarity of thought I get when everything is firing fully.
I am a long list of good bits and bad bits and irrelevant bits. I hate that some people have awful preconceptions about autistic people, or have met one person they didn’t get on with and assume we are all the same. I hate that discrimination still happens and that’s why I do what I do; a lot of these misunderstandings come from a place of ignorance rather than awfulness.
One of the reasons it took me so long to realise that I might be autistic was because of my own ignorance about what autism is. How can I judge that in others?
Somewhere along the way that label slipped in alongside all my other ones; it sits comfortably alongside ‘mother’ and ‘Welsh’. It is firmly mine and certainly important.
It’s hard to understand just how much I needed to know the truth about who I was. In an ideal world, if I’d taken a different path or been tougher (or not as tough) I would have been able to be me without knowing either way, but this world is not ideal.
Today is autistic pride day and I don’t feel that lion roar the way it once did, it purrs now, gentle and full of strength, the way all the best labels are.
Feel pride in who you are, do good things because they’re the right thing to do, be kind to those who don’t work in the same ways that you do and – hardest of all – be kind to yourself.
My journey is not over, but my grief has been turned to action and that has helped more than anything. I will change the world, even if it’s only one person, because the world can be better if people just want it to be.
If you would like to support this particular self-employed person at a time when her work has been cancelled, then you can receive your own copy of her play The Duck, read by Rhi, available now here
With enormous thanks and absolutely no handshakes or hugs or obligations