Writing While Autistic #12: Guilt, Shame, and Barriers to Access
 
Sticky Note: I am an adult autistic writer. All text in Writing While Autistic is my personal reflections and thoughts, which are based on my experience alone. While I do make general statements and give advice, this does not constitute prescriptive advice: what I say is just one possibility in a sea of other advice. Please take what you need from this and ignore the rest. 

I'm frequently hearing "I'm not autistic, but this is really useful to me." I'm really glad to hear that this generalizes to other neuroatypicalities. 

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For years, I’ve been talking to other autistic creators about our creative process, and one of the things that struck me me is the proliferation of brain weasels, these negative voices that shame you for not only not working enough, but also not working “like other people” (=neurotypicals). Spend any time at a creative pursuit and you will be bombarded with advice ; but even beyond advice, every day we encounter examples of successful neurotypical creatives who write every day without achieving burnout, and seemingly never have a meltdown. 

Social media skews what we see, but these examples are deceptive. Creators are fragile, regardless of neurotype. I very much doubt anyone achieves any kind of success without overwhelm; what we see is self-presentation, often tightly curated, rather than the messy truth. But because so many of us are bombarded with advice and relentlessly normed/pressured to be “more like other people” from early childhood, many of us are more susceptible to worrying about how we are “not like other people” (=NTs) in terms of process instead of spending time and effort on figuring out what works for us. 

Since I started writing about the impact of advice/norming on our often fragile and already embattled sense of self and our creative process, I started wondering how to reframe. Instead of feelings of guilt, shame, and failure, I wanted to compassionately approach what I perceived as problems with my process, and to try figuring out why I was having problems (if they were problems at all).

Turns out, what I perceive/d as failures or issues with my process are often a problem of access.

Access is an issue for many autistics. Places, experiences, and learning environments are often too sensory/inaccessible for us, but instead of improving access, we are so often told to overcome/get over our problems (too noisy? Get over it!). Many of us are used to disregarding or downplaying our own access needs. Many of us have not thought much about our access needs, much less asked for these needs to be met. Many of us often feel odd, embarrassed, or even guilty when faced with this idea: we may feel that we do not deserve access, that access must be earned somehow. This feeling is often born out of earlier traumas. Autistic people deserve access. As adult autistics, we deserve to think about our access needs.

So I began to ask myself: “What are my access needs?”

I have written previously, in a locked post, about how I told myself that ”I am able to write anywhere, anytime!” is about the moving trauma and constant trauma of migration, displacement and rootlessness, exacerbated in the last few years by our series of seemingly endless moves. I looked back on my life and told myself, “I wrote the first 5k of my novel in 3 hours while sitting in the back of the car!” This was my internal proof that I could write anywhere, anytime.

But now that I am more stable, I am reevaluating this experience. The back seat of the car was definitely not “anywhere, anytime.” I will tell the story and then analyze it, to show you how I am thinking about the episode now.

We were in the middle of yet another move, from Iowa to Kansas. While packing, I was struck by a powerful desire to write a new Birdverse piece which had been percolating for a while. I asked Bogi if e would be willing to stay home with Mati while I went out to write, and e agreed. The kid had just gone to sleep. I took the car, and drove a short distance to the co-op grocery store in Coralville - the New Pi. I had about 30 minutes until the co-op was closing, and I began writing in their sitting/dining area. When the co-op closed, I was not done writing, so I re-parked my car to be on the side of the co-op; I hoped that the corner would be relatively deserted. I moved to the back seat of the car with my laptop, and locked the doors. I texted Bogi with my status, and continued writing. The sky was fully dark, but there was some light from a nearby lantern. While I was writing, workers began to emerge from the side door, which I overlooked; a few looked into my car, and maybe even recognized me from earlier; in any case, they left me alone. I wrote just over 5k and drove home.

Thinking about this situation, the following components allowed me to maintain hyperfocus and access my writing that night:

* Co-op: Generally speaking, co-ops represent a safe place for me. They have snacks I can eat, and importantly co-ops tend to be more sensory accessible than larger/corporate stores. I have written in co-ops before.

* Darkness. I am overstimulated by light, and nighttime/darkness decreases overstimulation; writing in darkness or semi-darkness is easier for me.

* Silence - this goes together with darkness; I do sometimes enjoy ambient noise, and am happy to work in some coffeeshops, but I cannot stand noisy interruptions. Having silence helps.

* Hyperfocus - I had to work on this project.

* Being in my own familiar space (car).

* Being in a small(er) enclosed space.

* Seating was comfortable, and I was not in major immediate pain.

* Bogi was providing childcare, and both Bogi and Mati were safe; my caregiving tasks for the day were done.

It turns out that I was not really writing anywhere/anytime - these specific components made writing accessible. 

Instead of beating myself up and asking “why can’t I write everyday/always be able to write like other people!?!?” I started asking myself how I can improve access. I came up with a list of things that help me:

Having an adequate amount of sleep. The right setup (my computer for drafting; doodling setup for doodling; journal for note-taking). The right physical setting, including relatively comfortable seating. The right sensory environment. Knowing I have time for myself, in which I will not be interrupted. A situation in which I am not immediately responsible for people’s safety and well-being (this is often rough, especially during the summer when the kid is out of school). A relative feeling of safety/freedom from fear. Not being in a major pain flare.

I do not need ALL these things to do my work, but each and every one of these things improve access - and some are dealbreakers, for example, I cannot work at all if I have not had adequate sleep; I cannot work at all unless I know that Mati and Bogi are safe; too many interruptions can be a dealbreaker as well, or at least seriously unbalance me, and I would need time to recover.

I am going to stop here, and continue in another installment - I want to write another general post about access, and a more specific post about The Trouble with Paper Journals, if that’s of interest. Please let me know what you think!

Meanwhile, if this is useful, I would love to hear how you think of your process in terms of access.