Imperfectly Autistic

This year is the fifth year since my autism diagnosis at the age of 35. It seems a good time to take stock of how my life has changed and the good and the bad of knowing the truth about yourself. You can read my first ever post about getting a diagnosis here – it seems like a very long time ago.

So what has changed? In general I am definitely happier for knowing. Before diagnosis I spent a lot of time comparing myself to other people and pushing myself too hard. I now know that I’m not a faulty non-autistic, I’m a perfectly formed autistic person.

But as I lie here in bed, in the early hours of the morning, wide awake, head buzzing, mind racing, heart pounding, ears squeaking a high pitched whine through the earplugs I’m wearing, I remember that I don’t always get it right.

I wrote a lot about autism in the early days of diagnosis as I worked through who I was and shared my journey so that those like me would see that they were not alone. I wrote about the joys my senses and skills brought me, and the pains and difficulties too.

Which eventually led to me writing my play, The Duck, about being a late diagnosed autistic woman. Last night was the second night of our new tour, and it was the first night that I have had to run away as soon as the Q&A ended.

I usually love the Q&As – they make me feel less alone and more understood. I also love talking to people afterwards and hearing their journeys, and I hate that I lost that.

It was too much doing two in a row. The venue was a part of a lovely pub, the people were warm and welcoming, the food was great, but it was still a new space that I had to be in, far from my home and familiar things, and it was loud, we weren’t able to provide a quiet space. The show is in the evening, and my fight or flight response kicked in early

We are a small theatre company and we don’t get to pick and choose our venues. Sometimes they work well for the audience, sometimes we have to make-do in order to be able to put something on in a new location. We put up video walkthroughs beforehand, we provide accessibility information online and at the show about the fact there will be some loud noises in the performance and anything else that could be problematic for someone, we try to keep the lighting as comfortable as we can, we offer free earplugs for those sensitive to sound, but we are still imperfect. We believe accessibility is about giving the choice and autonomy to the individual to make the right decisions for themselves.

We make a point of adding in our accessibility information that anyone can leave the performance at any time – they have full permission to leave and return as they need to – but that’s not actually a permission I’ve afforded myself.

I came so close to melting down on stage last night. I was so frightened of the potential humiliation of my lovely audience seeing me like that. I hoped they couldn’t see that I had been crying, nor notice just how much I was struggling to find the right words. I kept forgetting what the question had been and answering in tangents (more than usual) or not being able to work out what it was they were asking. It was tough going. Especially since I usually enjoy it so much.

Ultimately it doesn’t matter how much I want to find these things easy, I don’t. I need recovery time, I need my safe space. I need more than I give myself sometimes. I wonder why I put myself through something that seems so unsuited to who I am, and then I read the feedback forms from last night and see, ‘Amazing play. As someone who has autism, it’s so nice to be able to SEE my thoughts,’ and I remember.

I hate coming away from something that usually makes me feel connected feeling alone again. I remember the overwhelming love at our opening night just two nights ago, but it’s hard to feel those feelings over the voice who wants to compare me to all the people I know who could easily do two late nights in a row without blinking.

I needed to know I am autistic to begin to build a life around me. I don’t always look after myself as I should and I know where that leads me. We all have a responsibility to look after our own needs and work within our limits, and that’s a lesson I’m still learning.

Knowing I’m autistic means accepting that the things I find hard are always going to be hard, but it also means that the things I find easy or joyful will stay with me too. I need to be better at working within my limits. I need to remember that I need to recover and rest and that I need to feel safe to leave when I need to as well.

I do not have superpowers, I have spent a lot of time trying to get rid of such myths about autistic people, and I still need to be reminded sometimes.

Some days I will feel frustrated by my limits, some days I will feel elated by how much I can get done with the benefits of hyper-focus, or how much joy my noticing the detail brings me, but today I will exist and nothing more. I will set off on my long drive home, I will meltdown or shutdown or both, and I will know that I have lost my weekend to recovery time, and I will hate that too.

I know that evening performances don’t suit me. I know that this takes too much from me. I know that I need to use that self-knowledge better and think again about what I do and how I do it, but for now I will pull my duvet up to my chin and feel all the things that I cannot help but feel. I will still my tongue and lose my words, and hand over to my husband to get me home safely.

Five years on and I am still learning; I don’t expect that to end any time soon. I am so grateful for all the connections I have made and the people who have reached out to share their world with me. I have learnt so much, I will learn so much more. Time will heal.