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.

15 thoughts on “Imperfectly Autistic

  1. By doing something so wonderful you have gained the absolute rights to a weekend of recovery and recuperation. The weekend has been found in the light of your giving soul.
    As someone with a lot of experience touring around with productions, I know how little control any of us have over the spaces we find. We can do our best but at the end of the day the venue is what it is and that is not our failing, it is a mark of those in the world. These are the things that the education and sharing help change, those are the things that must come first, that one day all places will be Autistic friendly without a second thought. Priority to the art, for it is the nourishment of the soul and the enlightenment of the individual. 🦆

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  2. Hugs ( if you like hugs… And space and quiet smiles always!) . I declined participating in an all-day cello workshop this weekend. Last time I did it, before I knew I was autistic, it proved too much, and when I thought of it this year, I just felt exhausted. I really like what you say about how things that are hard for us will always be hard, though our capacity for those challenges may vary due to shifts in other demands, and I also love your reminder that our strengths and the amazing things we’re good at will also always be part of our repertoire.

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  3. I thoroughly understand your feelings. Being 12years out there are so many times that I now know my limitations. Having just canceled a short road trip Atlanta to Orlando, I keep pondering the why’s of knowing I can’t do it even for family. I wish I could offer advice but there is a book that may help, “ THE TEN MINUTE COGNITIVE WORKOUT”, by Peggy D Snyder. I’m just starting the practice. I should be able to handle 10 minutes.

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  4. I think the hardest thing in life sometimes is finding the balance between being brave and being kind to yourself… too far either way and we make ourselves miserable. I don’t think I’ve ever cracked it. I push myself into uncomfortable places trying to be brave enough, end up feeling overwhelmed then then when I try and look after myself I feel guilty for not trying to be brave. #catch22 #yourownworstenemy

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  5. I’m getting better at recognising when I need time out from overwhelming environments and situations. I would keep pushing, pushing and pushing until accidentally burnt myself out and become very unwell. Sometimes we need space to look after ourselves in whatever way helps us and that’s ok💕

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