New Things: Autism

A few weeks ago I was deep in the throes of writers’ block, and in a moment of madness booked myself onto a writing course to try to stimulate my words. I don’t necessarily need a course in writing, I need to know the rules better, I need something I don’t seem to have at the moment, I need the people on it. I need their words to trigger my thoughts, I need their patterns to set off my own.

And now the day is here and I’m feeling foolish and ridiculous, but that is okay so long as those sparks start to fly.

Of course as soon as I’d booked the course, that action alone started triggering ideas, and I’ve found myself buried in short story after short story since I downloaded the form, but that doesn’t mean I won’t get something out of today. Whilst I have sunken that cost already, and am fully aware of sunk-cost-fallacy (basically that you shouldn’t do something you don’t want to do just because there has already been a cost to you, you should only do it if you want to, as the money is gone), I am determined to go.

And since writing helps me settle, in the moment, I’m going to share with you my preparations and feelings about today: 

I’m autistic, new things are hard. I’ve felt a steady growth in anxiety over the past week, the last three days my sleep has been disturbed. I’ve been tossing and turning and too hot or too cold. I’ve wanted to eat more at times and less at others. I am in close control of what I am eating, because it is something that I have dominion over (this is not always a good thing).

The person I would normally turn to at this time is going through a family bereavement, and I haven’t been willing to put more stress on him, so I’ve been bottling things up. This means that I have repetitive thoughts going around and around my head with no outlet. Supporting someone else also drains my emotionally energy (as it does everyone’s), but that is as it needs to be at the moment.

Over the past few days I’ve wanted to build a plan, but am at the same time reluctant. I’ve been dissecting memories of my first day at university and how my then partner walked me to all my lectures because it was just too much for me to go on my own. 

I’m nearly forty. I’m already concerned that I’m more likely to be mistaken for the tutor than a classmate, and the idea of bringing my husband along to chaperone me and how foolish I will look, makes me want to sob. It would help me so much, and he has offered to come with me since it’s during his lunch break and five minutes from his office. It’s an accommodation that would make this whole thing so much easier, the only thing stopping me is my fear of looking different, and I hate that that gets in the way of what I should do.

He has already called the university to see where I can park, which I’m grateful for, since apparently they have signs up saying no-parking, but anyone can park there. I hate that they have explicit rules that are not supposed to be followed, but am glad that I have permission to break them.

I’m also glad that just by chance it is in a building that I was in for a conference earlier this year. I don’t know the room, but at least I know the front door and basic layout. There is a picture on their website of the room, though I don’t know if it’s that actual one or a similar one. I try to find all the information I can online, but it’s not enough.

I wonder if the tutor will know I’m autistic since I put it on my enrolment form. I wonder why they asked, if there wasn’t going to be more information. Perhaps I said I didn’t need it – that’s the sort of thing I do when I’m feeling invincible.

I speak to a friend who describes having a bit of a meltdown in their first week of university and how everyone helped her and looked after her. I know she wants me to feel comforted, but people don’t do that for me. The more frightened and lost I am, the more effective my nonchalant air. I don’t know how to change that. I don’t know how to appear vulnerable. I’ve watched someone with far less need than me getting more support, because they asked for it in an emotional manner, when my need was greater but stated calmly. I won’t meltdown, I will be controlled and together. It’s who I am in public and I don’t know how to fix that – I don’t think I want to feel more vulnerable, I don’t think I want people to know the terrors that stalk me.

It’s the night before and I take a Nightol to help me sleep. I watch stupid television shows for hours before bed to avoid thinking about things. Where will I sit? Where will the door be? Will it be clear when I walk in? Will the door be locked? Will I be first there? How early is too early to arrive? What if no one comes? What if it’s loud? What if they ask who I am and what I do? Who am I anyway? What DO I do? 

I read myself to sleep, waking only a couple of times (which is good for me).

The morning dawns and I am frozen in place. I run through a plan for the day, but I don’t want to make it too rigid in case things change. I try to write in variations for what I will do if things aren’t as expected. I’m told all I need is paper and pen, but I prefer a computer. I don’t have a computer bag and wonder if I can shove it into something else. I freeze as the variables unroll in front of me and retreat to a pen and paper. I will follow the rules, knowing that everyone else will know not to and will do what they like. I know by doing what I’m told to do I will be wrong, I’ve played this game before. 

Usually I will have planned what I will wear beforehand, but I knew I wouldn’t know what I wanted until the day, so I will have to make do. It will have to be soft. I don’t know if the place will be warm or cold, I don’t know if it will suit me. I don’t know who I want to project as I walk in, I’m tired of hiding who I am.

I am still in bed as I write this. I get cold when I am anxious and my bed is my safe space. I decide writing will help, but then I write this and that only takes me up to 9.05am, and I’m not doing the thing until the afternoon. Some story this makes if it only takes you so far and then abandons you, but I know what will come. 

I will either win or lose. It will be one of those times things clicked and I found my rhythm, or it will be one of those times I cracked and spent the whole time trying not to cry. They will see someone who looks like nothing bothers her, or maybe one of those other labels I get sometimes, maybe cold, maybe aloof, maybe arrogant. 

I may be unlucky enough to find myself in the room with someone who takes an instant dislike to me, because something unconscious tells them I’m not who I say I am. I’ve met these people regularly over the years and struggled with their instantaneous dislike of me, and their incorrect assumptions, but that’s probably something everyone contends with to a certain extent.

I may be lucky enough to meet warm and welcoming people who share my interests. I may not. People are always the biggest variable of all and I struggle with having had no interaction at all with anyone on the course or the tutor beforehand. 

Today will sap my energy, but hopefully it will give me something more. I hate that I am not someone who can walk into these things blindly, I hate the effort of preparation and the anxiety around the variables. I hate that I won’t feel safe to stim and so will suffer through more sensory incompatibilities than I need to. I hate that so many of the problems here are caused by my squashing myself up small before anyone else has a chance to, and I hate that it could be wholly unnecessary, but that with not enough information this is what I do to protect myself from your misunderstandings.

See this tweet? I put this up shortly before booking the course, it is evidence that I know better and still do the daft thing:

Screenshot 2019-10-21 at 10.09.31

This afternoon I hope to emerge energised and revitalised – albeit tired. I do all these things to make the moment possible. All this preparation, all this careful planning is done to make it accessible to me. 

Next Monday I will know better. I will have learnt the social rules for entering and leaving the class. I will know where to sit and who I am expected to interact with. I will have chosen a route into the carpark. I will know how to walk there, what to take, what the rules actually are (rather than what people say they are), whether they really mean just paper and pen, or whether everyone else has done more because they knew no one really means that. I will know who I am in that class, I will know how I fit. 

Next week this will need far less planning than it does today, but today I must follow my rituals. I will have my coffee with my supplements, I will take iron for blood, and calcium for bones, I will dress only after my teeth are brushed, everything will be done in the order that I do it, because today I need my routine and my structure. Today I only have so much space for new things. Today I walk a knife-edge and if all goes to plan, only I will know how close I came to slipping.

Today I will fight that voice that tells me how pathetic I am for needing things that other people don’t. I will compare myself to non-autistic people who saunter in to new spaces without a care in the world. I will compare myself to autistic people who do not have the same problems as I do. I know that we all have our own trials and tribulations, but today I will only see what other people can do and what I fail to do, and I will make the whole process just that little bit harder than it needs to be with those comparisons.

I have come a long way, but I am still affected by years of misunderstanding myself. Old habits are hard to break, and new habits are painful to form. Today I will do something new, but first, it’s time for a bit of scripting before I get going. Time to practise how to converse naturally and what I will share about myself. Time to reduce any awkward pauses in conversation and remind myself how to speak my second language of non-autistic. I will be as ready as I can be. I will be ready.

12 thoughts on “New Things: Autism

  1. Neurotypical people don’t seem to understand the anxiety of doing something new. They speak glibly about “stepping out of your comfort zone” and how much one will enjoy the activity once one is there.

    I don’t want to give you advice about how to do it. I don’t want to tell you you’ll do fine. All I want to say is – I hear you. I have some understanding of what you are saying and you aren’t wrong in how you feel about this.

    Liked by 4 people

    1. That’s a very lovely comment indeed. Thank you. Yes, I’ve often thought that autistic people live outside their comfort zones at all times. We are not afraid of discomfort, but different people experience things differently, and it’s daft to pretend differently. Thank you

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  2. I belong to a writers group myself, and I have had moments when I wonder: “What can I possibly write about this?” when the homework topic comes up (usually we are given three topics to write about in the class. The fourth is homework). Most times I turn to fiction when I’m inspired by something I’ve read or watched (my theory being that to be a good writer one needs to be a reader. I do word puzzles, too). Which I have done with this week’s topic “Selling the house.” In a nutshell, it begins with a couple selling their house, relocating and they end up being murdered. The story of an unsolved case from 2008 which is reopened in the present day.
    I left it open-ended, because I’m still figuring out how it will all end up, but there is more than one suspect and one of the victims knew who the killer was. What inspired me? Watching a film that mentioned the global financial crisis and the aftermath. White collar workers don’t seem to be badly affected by it, which got me thinking: “What if one of these businessmen was targeted by someone with either a long-standing grudge or a professional jealousy? What if he wasn’t doing so great and had to sell up?” Put him and the wife in the wrong place at the wrong time, and there’s a story, or the beginning of one. I got so involved in the writing I lost track of time, and had to stop to have my dinner. I finished it afterwards. But I do know how it feels to have writer’s block. Usually it happens more with poetry than prose. I can’t force it, however. If a snippet of something comes to me, I write it down and go back to it if I need an idea or feel inspired. I once wrote a poem about having writer’s block (true!), which was quite amusing. One of the best things my parents gave me when I was young was a love of music. It began with the music they loved themselves and led to me loving music which is a part of my personal soundtrack. Music inspires when nothing else can.

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    1. Thank you so much, this is all hugely helpful. Thank you for sharing your process with me. You’re so right that inspiration is everywhere when you’re open to it. Lovely stuff 💐

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  3. Thanks for sharing. I don’t like new situations myself and tend to overthink them, but you describe something far more intimidating than I face. Your words make me think of something I try to remind myself: when I see someone who appears aloof or cold there is probably more to the story. Thanks for reminding me of that. I read once about a woman who handed out business cards to people that explained some of what she feels. She used these at times when she could not express her needs effectively any other way. Hmm??? You are brave and I hope you will share more about how your day went.

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    1. Thank you! My day went really well, I am exhausted, but glad that I put in all that effort to make it happen. There was even a moment when we had to describe who we are, and I touched on this subject of being misunderstood. I might need those cards!

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  4. Oh, I’m reading this on a week where I have two days with interrupted routines involving going to new or different places, both connected with a presentation I have to give. I’m feeling much the same way and trying to think up treats I can give myself for getting through it. I’m also realizing it’s OK to allow for meltdown time afterwards, if I need to in order to process all the extra data.

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  5. I think you are very brave to choose to go forward and push against your fears! It’s a 50/50 chance I wouldn’t go in this situation, and I’m just a hermit level introvert.

    I hope the day is more positive than negative and that your recovery time isn’t too long.🌻

    Liked by 1 person

    1. Thank you! I hate to miss out and do everything I can to go through with things, but it does involve a lot of work. I think the day was a positive, and next time will be so much easier.

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  6. I just read it for the second time now. There is so many layers in what you write… thank you for the window of your thoughts.
    The end where you write fairly confident about your second language. It brings me back to school when I was not yet diagnosed and was trying really hard to fulfill the expectations from teachers and parents, but I was only failing at it. I realised, on one hand I am glad I could not speak the nt language. I think it would make it harder to understand who I am today. Maybe it is the privilege of being a boy in social aspect.

    Liked by 2 people

    1. Thank you for sharing. I agree that there are definite advantages to sticking with the language that comes naturally to you. I am very glad that you kept to your own language, it can be very draining to always have to reach for a different way to communicate.

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