Recovering my Autism

It’s been a stormy few days. There’s been a strong wind pouring in over the sea and I’ve been watching the birds fight and fail to fly into it. First a flock of starlings gave in and threw themselves down to cling to the branches of an ash tree, then the rooks made a passable pass at their morning circling, but had to turn back after their swim through the air became a hovering-formation outside my bedroom window, then the collared doves fought hard to get to the birch-wood, but their puffed out chests lifted them higher and higher until each of the five were lobbed far back over the fields.

It’s been a few days of strong head-winds and effort, without a lot of moving forwards. Because sometimes that is how life goes, and sometimes not being driven backwards is more of an achievement than gaining ground.

Today has been put aside by me as a day of recovery. There is nowhere I have to be and nothing I need to do. Today all I have to do is exist.

There was a time, before my autism diagnosis, when I would have berated myself for needing a day like today. In fact I wouldn’t have planned to take one at all; I would have felt the headaches, the cloudiness in my thoughts, the loss of speech, and I would have turned the guilt at my failure into fuel for my fire.

I would have taken that self-loathing and turned it on myself. I would have said things like, “What’s wrong with you? No one else is reacting like this! Why are you so lazy? Why can’t you do this? It’s no wonder people don’t like you! Why can’t you be better?!”

Things I would never ever have thought about, let alone said to, my worst enemy, I was more than happy to say to myself. I was so angry with myself for not being like everyone else.

I had already got to a point where I was very good at pretending to be like other people; I could pretend to react in certain ways, I could pretend not to be bothered by sensory stuff, I could pretend I wasn’t different, but that didn’t mean that I wasn’t reacting as any other autistic person would in those situations. I was just good at hiding my pain.

Those days when I needed recovery time where real. I had been processing too much, I had overused my brain in ways that other people didn’t use them. I had consciously thought about every second, every action, every reaction, every movement and inference, and it was as exhausting then as it is now.

Back then I couldn’t predict what was to come. I would have to wait for a socially acceptable reason to slow down, I would have to wait until the exhaustion and pain took its toll on my immune system, and the feelings of mental exhaustion crossed into feelings of physical illness.

Even then I would push on through. The times I allowed myself to be ‘ill’ were my holidays, my weekends, my days off. The moment I stopped holding everything together a tsunami of pain would hit me all at once. I would save it all up and suffer, and I had no idea that I wasn’t just really unlucky about when I got ‘ill’.

I haven’t been ‘ill’ since I realised that I am allowed to rest when I’ve overdone things. Today is one of those days. I have fought that head-wind and now I will sit on a branch for a day and build up my strength.

I look back on pre-diagnosis-me in awe; she did all that, and she didn’t even have me on her side. She was so unwilling to give in, she was so strong when she felt so weak. So many of us, who got our diagnoses later in life, have been there. So many of us were unforgiving and unkind to ourselves when we didn’t know the reasons for our differences.

I am in awe at the power and strength of the late-diagnosed people I know. It is an enormous thing to carry through this world alone, and the day I realised that I was not alone at all, was a day that I will keep with me.

Sometimes people ask me what use an autism diagnosis is, and some days I don’t have the words to explain.

A diagnosis is a personal thing and there’s no one way to react to anything in this world, but for me, it changed everything. It confirmed that I am not faulty, it confirmed that I am just fine the way I am. It was the day that I stopped misunderstanding who I was and began to be on my side instead.

Published by Rhi

19 thoughts on “Recovering my Autism”

  1. The starling flock, most purposeful and hardiest of birds, capitulates against that force of nature and throws itself down en masse to cling to ash branches. Then rooks, also birds of strong intention, are pinned in a hover by the headwind. And finally, the trajectory of those gentle doves, are lobbed high against the horizon and end up far afield.
    These images made windows for me, this morning, into this stormy, effortful life.

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      1. Hahaha yes. But I like to take that much further. Life without perceiving the slightest guilt in oneself or others, no matter what the circumstances appear to be. Without exception. That’s real peace.

        May be too philosophical a conversation for a blog comment. I’ll stop now.

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  4. Yep, a definite link between autism and immune conditions that appear later in life. It’s as though the brain is just overworked and your whole CNS is affected, and in turn your immune system. It’s fascinating. Thanks for the read. Mel 🙂

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  5. Thank you so much for your words. I got my diagnosis a few months ago, just past my 41th birthday. I’m still a mess, not knowing how to live my life from now on, not knowing how to make sense of it all. There’s just this huge fear, the pain, the panic. I feel physically sick all the time. I’m not used to allow myself some rest, I don’t know how to do it. I hope I’ll find out who I am over time.

    (English is not my first language, please forgive the tweaks and mistakes)

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    1. Your English is beautiful. Be kind to yourself. A few months is no time at all. The first year of diagnosis can be a real roller-coaster of emotion. Let it all sink in for a while. It took me ages to start to give myself permission to rest. At first I felt guilty, but when it made such a difference I realised how important it is. Make small changes at first – the biggest one for me was learning not to beat myself up for reacting to things in the way that I do. It is a waste of time. Autistic people react in autistic ways, and me telling myself I was wrong to do that, was ridiculous – but it’s a hard habit to break.

      Congratulations on your diagnosis. Welcome to the club. I hope with time you can use it to learn your own rhythms and patterns, and work out how to make things easier. You are allowed to rest when you are tired. You really are 💐

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      1. Thank you for your kindness, really. It is much appreciated, especially today. I look back on the last 10 years, when I build somewhat of a career and married and became a mother, I look back on this person, and suddenly she feels alien to me. But there is no new ‘me’ yet. I’m floating inbetween things. And just this week I finally understood that it may take a while to grow my very own wings. Phew.

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        1. It’s a strange thing indeed, and I know exactly what you mean.

          I wrote this post about six months after my diagnosis autistrhi.com/2016/04/12/re-thinking-things-through-an-autistic-filter/amp/

          It felt like I needed to re-examine everything with this new knowledge. Take your time. There is no hurry now.

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            1. There will always be things we find harder than other people, but there will always be things we find easier too. As long as we work with who we are, we can find that balance that works for us

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