Change

I’m in the middle of reading Luke Beardon’s new book, “Autism and Asperger Syndrome in Adults” and I’ve paused to splurge this. I am frantically typing because I want to get back to it, but didn’t want to lose my train of thought.

I’m on the chapter about autistic resistance to change. Luke is sympathetically describing why, in a life of instability, we may need the small things to always be the same. It makes sense. It all makes sense. He does that. He’s one of those sense-makers. We need more of them.

It got me thinking about my routines, I have a lot of them. Every day I wake up about an hour before my alarm goes off, I have a coffee (always the same way), and one of those effervescent vitamin-energy-godawful-tasting things in a pint of water. That’s my breakfast.

You may say breakfast is the most important meal of the day, and it is. To me this routine is vital. It is time to settle and get my head around upcoming plans. I’ll run through the coming day, skim over tomorrow, bear in mind the looming week, and remind myself of any key events on the horizon.

It’s also sometimes the only thing I’ll drink all day. I don’t seem to get thirsty. Long ago I decided that the best way to make sure I drank something, would be to do it all at once. It’s not ideal, but it’s better than nothing, and there have been times of nothing.

I don’t have to think about my breakfast, I don’t have to ruminate on it or make decisions, because it is a fixed point. It’s an easy bit. Lunch may depend on many factors, but breakfast is a certainty.

I need those points that don’t need thought. I need my reliable checkpoints to keep me grounded. I need to know that there are things in this world that don’t require my mental effort.

When they change without warning, I am lost. I have cried over spilt milk; not because it was spilled, but because it was the last of it and my coffee would be different.

I needed this book today. I’ve been feeling detached from myself. I’m glad Luke covered “mild autism” early on. It was levelled at me a few weeks ago. A warm smile and a, “well yours must be very mild” said with a reassuring pat on the shoulder.

A pat on the shoulder that turned my chest inside out because I hate to be touched by strangers. But that’s ok. It was probably a mild skin-crawling. That’s lucky. Phew.

I’d been feeling put-on-a-shelf; a shelf for those who have put all their effort into fitting in, and whose reward is to not be quite different enough to deserve consideration, but still too different to be included.

It left me angry with myself for putting a lifetime of effort into all this masking malarky, when I could have been using that energy on something I love doing instead. Tonight I am feeling more me again.

I’d better wrap this up, I have a book to finish, it’s good. I’d put up a picture, but I am a heartless monster who buys things on a kindle, so it wouldn’t be pretty. I’m guessing I’m just going to like it more and more. Fingers crossed there’ll be a dinosaur in the second half. There probably won’t be, but I always secretly hope someone will drop one in. You never know.

And I should know by now never to give up hope. This is a hopeful book, for hopeful people. It’s about the possibilities for a good kind of change. How we can adjust the environments for autistics to make things better. I’d give up my coffee for a world like that.

I’m going to do that autistic thing of saying something and assuming you’ll all know what I mean. Reading this book is like tipping a bucket of clean water slowly down a grassy bank. The flow just fast enough to make a smooth, wavey surface, that glints in the sunlight and throws water-patterns everywhere, whilst the fronds of grass wave back and forth within their thin river. I can’t manage higher praise than that.

…

And now I have finished it. What an uplifting final chapter, just loveliness. I am all a-glow (I barely noticed the lack of dinosaurs). 

Published by Rhi

28 thoughts on “Change”

    1. Thank you! I love metaphors that fit me. I know that I can be painfully literal at times, but describing feelings through how I’ve felt at other times seems to make perfect sense.

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  2. I wasn’t aware of the book, I’m glad you mentioned it, and I’m glad it’s good. I have recently read all the posts on Luke Beardon’s blog, which is one of the best out there. I kept saying “yes, yes, every word is true!” as I read it. Very insightful and expressed so well. (The same goes for your blog, of course! 🙂 ) I have to get that book now! I’m not that much into dinosaurs, so I don’t think I’ll miss them. Although maybe a brief appearance by a Stegosaurus would be nice – my favourite. Okay, I’m enough into dinosaurs to have a favourite 😉

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    1. Ha! Every sensible person has a favourite dinosaur. I’m a big fan of a triceratops, but worry they’re too mainstream. A compsognathus is always welcome 😄

      Luke is one of those “experts” that can not only see the truth, but explain it so that all neurotypes can understand. He’s a translator because he listens to everyone, which is an incredible skill.

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  5. I, too, have wept over losing the last serving of cream for my coffee.

    I don’t know how to cope with any of it, anymore.

    I was in a large, echoey waiting room a couple of weeks ago.
    A woman was droning on, very loudly, to anyone sitting next to her.
    When those people cleared out, she got in the middle of the room and pronouncing some ego bullshit about her plans.
    It was awful and my music player was dead.
    I had to press my ears closed, hum softly and rock just a tiny bit.
    The woman behind the desk is angrily motioning for me to stop!
    This other woman is disrespecting her privacy and the privacy and boundaries of everyone in the room.
    I am rocking and humming softly in the corner to cope.
    The woman behind the desk is just furious at me!
    She gets up and reports me to her boss.
    Her boss comes out and I can see she’s telling her employee to back off of me.
    I catch a rare empathetic glance from her boss, who sits down at another desk and politely chats with the INSANELY LOUD woman.
    The employee goes back to her desk but is shooting me POISON.
    I am totally freaked out.
    I ask the boss if I can go ahead of someone, that I’m about to have a meltdown.
    It was the food shelf, and I only came for turnips and potatoes.
    The boss starts walking me to a secret ‘quiet room’ but her employee comes over to me, pretending to give a shit and puts her hands on my back.
    I have a terrible spinal cord injury, touching my back is often the worst.
    I yell ‘Don’t touch ME!’ I am shaking, I feel trapped.
    I hide in a dark corridor for fifteen minutes, completely sobbing, shaking.
    Terrified I won’t get home.
    Terrified I won’t make the stew I need for the next few days.
    The boss consoles me.
    But now the whole place is shut down.
    She says she’s going to make everyone wait until I can get turnips.
    Just fucking great.
    I BOLT out the door.

    Yeah, it probably could’ve been avoided with my music.
    But what the fuck is up with people.
    So sick of being targeted when I’m just trying to GET BY!

    Much Respect and Gratitude to You!

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    1. I am so very sorry you had to go through that. Where is their empathy? Where is their consideration? What harm were you doing to anyone? I hope for a world where this sort of mis-translation is a thing of the past. Thank you for sharing your experience 💐

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      1. I’ve met very few neurotypical folk who do not have to *learn from books* what empathy MEANS, and then actively attempt to DEVELOP IT. Most don’t seem to have intense enough challenges in relating to others to prompt the natural development of it; or maybe it’s they don’t go deeply enough in their thinking or awareness of things (perhaps that’s what it means to be neurotypical — that they cannot do those things? I don’t know, all I know is that I CANNOT NOT DO THAT, and it drives everyone around me nuts) to understand all the possible ways that the person they are trying to ‘help’ may be affected by their choices (This, actually is the source of my anxiety – I can see all the ways any given choice could develop, and some are good, some aren’t, and I am deeply aware I have zero control of the way it’ll end up).

        Alexandria, I hope you got to make your stew. I’d have tried to melt into the floor. *Supportive action of your choice is offered*

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  6. My Daughter Hazel is Autistic She is now 32 . She has spent the last 12 years in a care home or Detained Facility She was sectioned under the 1983 Mental Health act and your description of wanting everything the same is exactly Hazel through and through. Routine is essential and no disagreements and for the World to proceed in the way she wants Rigid Thinking and absolute anxiety worrying about anything , Has no Idea of what will happen coupled with that she has Anorexia and serious mental Heath problems. After those 12 years I have prised her out of Hospital and your blog is like a breadth of fresh air .

    Laurence x

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    1. Thank you so much for your comment, I’m so glad my words help. Routine is like a life-raft in a world that makes no sense.

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  8. Yes, the cluelessness of just how much energy it takes to be present. Sure, I made the set of choices resulting in my being present, and I am the one responsible for that set of choices. Perhaps I don’t need all those patterns. Perhaps there’s some that I could surrender. Because, well, I’m going to create some more of them anyway. And too many of them end up driving me crazy like being tied up in rubber bands–and don’t forget the elastic on skin texture as part of that simile: )

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    1. It’s all a delicate balance, isn’t it? Too much and it’s difficult to juggle and gets in the way. Too little and you’re outside your comfort zone.

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  12. “I’d been feeling put-on-a-shelf; a shelf for those who have put all their effort into fitting in, and whose reward is to not be quite different enough to deserve consideration, but still too different to be included.”
    Exactly what I feel now, but also, all my life.
    I was a misfit that that looked like a popular kid. So popular people thought I was weird, and misfits thought I wasnt one of them. Neither group wanted me. Of course, with time I managed to develop awesome masking skills and managed to connect somehow. But I was always a visitor.. never at home.
    When I read your post about Autistic Peers, my guard went up on instinct. I can’t believe a place like that exists. To me it always sounds like a trap. I can never put the mask down. What if I show myself and all the autistic people look at me and say “you’re too weird, go away!”?

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    1. I was also worried about not being “weird enough” 😄 what if they look at me and thing “what a fraud, she’s not autistic!” Just like other people do at times.

      As with all groups there will be Autistics you don’t click with, people you don’t get on with, but that level of understanding when it works is so worth it. Not having to explain the things you need, just being able to say them, is so amazing.

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  13. 😂 This was a very funny post. I will get that book. It was only earlier I was actually looking at it on amazon. Will you be writing a post at all about books you like or find helpful on Autism? I’ve read a few such as Odd girl out, the electricity of everything, and one by Sarah Hendrickx. I was only diagnosed last month, aged 32, so I’m reading and trying to find out more. Your posts have really helped, and I’m enjoying reading them. Thanks, Claire 😊

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    1. I think you’ve probably just listed all my other favourites, one day I shall have to do a post that brings them all together. Katherine May and Sarah Hendrickx are marvellous. I’m really glad my posts have helped. Thank you!

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