Accommodations Adulting Autism

From Burnout to Autistic Self-Accommodation as an Adult

self accommodation autism

As a high-masking autistic person, I grew up suffering in silence. Masking was not a choice, but a subconscious survival mechanism forced upon me due to systemic ableism that was projected onto me by my family, friends and community. Struggling to survive in all areas of life, adults overlooked my symptoms in childhood, and neglected my disability needs and medical needs, while peers and family tore me down any time I showed any signs of my authentic, autistic self.

An Experience of Autistic Burnout

Once I reached adulthood, I had become so burnt out from trying to keep up with life in a system that is not designed for me. Life is too fast, too loud, too mean, too sarcastic, too indirect, and too inaccessible for me on all fronts. To survive, I had to pretend to keep up with it all, even though it was tearing me apart from the inside out. However, this pretending, referred to as “masking” autism, was not a conscious decision I made. In reality, masking was a survival mechanism I subconsciously learned from an early age that became ingrained in my psyche and was reinforced every time I was reprimanded for being myself. I had a different mask for every person and environment I’d ever encounter. I had many fragmented parts of self and no cohesive identity. My masks became integral to who I was throughout the first quarter of my life.

By age 23, I was burnt out but still didn’t know why and tried to “push through it.” Little did I know that pushing through autistic burnout, which is different from non-autistic burnout, would only lead to more severe debilitating symptoms that I later learned I could never come back from. There was no “bouncing back” from a 10+ year autistic burnout. By 25, I lived alone, and this is when my autistic burnout became undeniable to me.

I hit a wall I’d never hit before and couldn’t mask my way out of it this time. I stopped feeding myself, I stopped going outside, and had to quit my job because I was entirely unable to put any energy into taking care of myself, let alone producing work in an environment that once again required me to change everything about myself. I spent a few months doing part-time work, and by the next year I had to move back to my childhood home because I couldn’t keep up with paying rent or having a job on top of feeding myself, doing chores inside and outside the house, socializing, exercising and doing all those day-to-day things some people consider second nature. I watched as others lived on autopilot, not questioning their ability to complete daily tasks, while my manual stick-shift life broke down altogether.

The process of becoming so burnt out I had to withdraw from society altogether was how I discovered I was an AUDHDer (a person who is autistic and has ADHD) and I began researching to figure out how people like me survive. The process of unmasking my autism and adhd involves many things, but one of the big ones has been learning to accommodate my own needs, as I’ve learned over time most people and spaces won’t do it for me; in fact, they often won’t even believe I need the accommodations that I do. If spaces do offer accommodations, they often treat it as a luxury, and not a necessity to make life livable for me within a system and society designed to go against my innate characteristics and functioning.

Below are some ways I have learned to accommodate myself as an autistic adult, broken down by sections as it relates to my autism:

Sensory Issues: Tactile

Comfortable clothing: Growing up, I was ostracized socially. To mask this social exclusion as best as I could, I wore trendy clothing to fit in, even though such clothing was often uncomfortable and caused me physical pain due to tactile sensory issues. It didn’t help that I received positive reinforcement from peers when I dressed like them and I was heavily bullied when I wore comfortable, less fashionable clothing. Part of my unmasking journey in adulthood includes wearing comfortable clothing everyday. Doing so helps me avoid sensory pain, thus mitigating unnecessary meltdowns, stress, and distractability.

Short hair: Growing up and through college, I had long hair because this was what was socially expected for me as a person socialized as a woman. However, hair touching my face gave me horrible sensory issues and distracted me all throughout the day while in school because of how uncomfortable it was. Sensory issues aren’t just discomfort; they also cause deep stress and physical pain. Now as an adult I have short hair and often have a shaved head. Not only does short hair help prevent hair from touching me and causing sensory issues, but having a shaved head also doubles as a stim: to run my hand back and forth over my head and feel the little prickly hair is soothing to me.

Deep pressure: I discovered that deep pressure and heavy things on my body, referred to as heavy work, are soothing when I am in sensory overwhelm. To accommodate myself and ensure my body is regulated, I incorporate layered clothing (weather permitting) because heavy jackets and layers help to ground me. I also sleep with a weighted blanket every night and find it very difficult to fall asleep without that weight on me. [Editor’s note: some folks love weighted compression vests, too.]

 

Sensory Issues: Auditory

Noise canceling headphones: In addition to tactile sensory issues, I also have significant auditory sensory issues. Growing up, I’d cry out in pain around loud sounds and lots of noise, though I quickly learned to mask this as I was heavily gaslighted by my peers and family when I expressed discomfort around certain noises. As an adult, I have explored different types of noise cancellation and filtration devices and proudly wear my over the ear headphones whenever necessary. I also use Loop earplugs when more discreet noise filtration is necessary.

White noise machine: In childhood I couldn’t sleep until 5 am most nights because of the noises I heard around my house that I fixated on for hours. My noise sensitivity made living with people unbearable, until my college dorm resident advisor suggested I try a white noise machine. This changed my life as it helps to block out noise when sleeping, but also it creates a sensory safe cave in my room when I need to block out the loud and bright outside world.

 

Sensory Issues: Visual

Rose-tinted glasses: My light sensitivity is another set of sensory issues that cause me physical pain. Overhead LED lights (common in almost every classroom, workplace, and grocery store) are particularly horrible and cause me pain, headaches, and can push me into overstimulation and autistic meltdown. Lights from cars while driving can also cause me similar pain. To remedy this, I have started wearing rose-tinted glasses in situations when typical sunglasses would make my vision too dark. Rose-tinted glasses help to cancel out some of the light without blocking my vision entirely.

Blackout curtains: Similar to the ways my body hyperfixates on noise and prevents me from sleeping, the same is true with light. If I even see a little crack of light coming through the curtains, it can keep me up all night. Blackout curtains are necessary for me to be well rested and sleep through the night. [Note from the editor: sleeping masks can serve a similar purpose if curtains are not an option.]

 

Executive Functioning: Planning and Prioritization

Half-dirty clothes bins: I have very rigid thinking, so to me clothes are either clean or dirty. This meant that before I had systems in place, I’d wear something once and have to wash it immediately, thus overloading me with the chore of laundry, which was hard for me to do in the first place. Now, I have a system under my bed that sorts “half dirty” clothing, i.e. clothes that have been worn once or twice but do not need to be washed yet, into bins for tops and bottoms. Once things officially become “dirty” they go into my laundry basket to be washed. This system ensures I know where everything is and that I am not overloading myself with doing laundry multiple times a week.

Bathroom bin: Taking care of myself day-to-day as an autistic person is exhausting because of all the steps I have to remember to do: wake up, get out of bed, go to the bathroom, brush teeth, wash face, take medication, make food, etc. Tasks like this that might seem simple to others become complicated or even impossible to autistic people who have to manually remember and complete each step, when working memory is a prominent executive dysfunction trait for me. To remedy this, I put all my morning and night routine items in a bin in the bathroom to reduce the executive functioning steps required to remember what I have to do. Instead, this bathroom bin puts the process more on autopilot for me, as I just have to do everything in the bin without thinking about it. Because of this bathroom bin, I haven’t forgotten to do my hygiene routine in months, when before it used to be a daily struggle.

Flexible morning and night routines: Routine is essential for me to survive and thrive in this chaotic world as an autistic person. However, because I also have ADHD, routine can become boring to me, which leads to me abandoning routines within days to weeks. For this reason, I have flexible night and morning routines where I have 3-5 things I do daily but I allow myself the flexibility to decide when I do them and in what order I do them. The flexibility of the order satiates my ADHD brain’s need for spontaneity and the rigid daily tasks ensure my autistic brain receives the sameness and order it requires.

Bulk Frozen Safe Foods: Feeding myself is one of the most daunting and exhausting tasks that I unfortunately have to do 3 times a day to stay alive. It is so difficult for me for many reasons, but executive dysfunction is a big one, along with food aversions. Keeping bulk amounts of safe foods in the freezer helps to eliminate decision fatigue that happens multiple times a day when I need to make food.

 

Executive Functioning: Regulating and Sustaining Alertness and Attention

Visual/Auditory Stimulus During Mundane Tasks: I become distracted pretty easily, especially when doing mundane tasks, such as household chores, cooking, cleaning, busywork. I also struggled with autistic inertia, meaning I have trouble commencing a task. Visual and/or auditory stimulus helps me to get started on tasks and remain engaged in them throughout. Examples of this include watching a show or movie, listening to a podcast, or doing a virtual body doubling session with another human.

Reading aids: Because of my distractability, reading has been a challenge for me my whole life. I recently discovered these visual reading aids that keep me engaged while reading. Since using these, I’ve read 10 books in 3 months, which is more than I’ve read in 3 years.

Bedtime alarm: At night time, I often become so hyperfixated in what I am doing, reading, or watching that I stay up hours later than I anticipate, and such change in routine ruins the next few days or weeks of my life. My bedtime alarm prevents this most of the time and helps to keep me on my routine, more or less.

autistic self accommodation autism bedtime

Executive Functioning: Utilizing Working Memory

Visual lists: Remembering the things I need to do to take care of myself on a daily basis is a struggle due to EF.  Keeping visual lists around the house and on my phone helps me with this. I keep lists and charts in the bathroom on what needs cleaning and when I’ve last cleaned. I keep lists on the fridge of what food I currently have in the fridge or freezer. I keep lists on my walls in my room on what to do in the morning when I wake up and what work I need to complete that week. Visual reminders help me remember how to exist as a human.

Google Calendar: I simply cannot remember most things in my life, and a big part of my growth is accepting that this is just how my brain functions. I no longer shame myself for being so forgetful, instead I work with my brain. This means everything goes in my google calendar. The smallest reminders and big events all live there to remind me what I need to be doing at all times.

 

Social-Emotional Regulation

Avoiding eye contact when safe: Forced eye contact is uncomfortable and causes me anxiety and panic. Eye contact can feel incredibly vulnerable for me, and I save it for times when I feel safe with select people in my life. However, not making eye contact isn’t always safe, like in the workplace or with authority figures due to ableism, so I have to mask this sometimes despite it causing me pain.

Stimming publicly when safe: Stimming helps me regulate and be authentically and visibly me. It helps me stay focused in social situations and on tasks I am doing. Stimming publicly is not always safe as it is misunderstood by the public and authority figures, so stimming in public when safe. When it is not safe, I find more discreet ways to stim, like fidgeting inside my pocket, chewing gum, or touching my hair.

Direct communication: Direct communication is the only type of communication my brain understands, and it’s actually better for everyone to communicate directly, as doing so alleviates misunderstanding. Letting people know I need direct communication alleviates any conflict or confusion that may arise from assumptions. This includes things like avoiding sarcasm and using tone indicators over text.

Advanced planning: Existing in the world and around other people is inherently draining to me, even when it is with people I love or doing things I am excited about. I do a lot of pre-coping to make being in exhausting spaces more manageable for me, and this means I need to make plans in advance to allow time to pre-cope. This also means that changes in schedule can be especially stressful for me, so I need advanced notice around changes to allow time to cope with those.

Lots of alone time: As I’ve mentioned, existing in society is so exhausting and so I need extra alone time on a consistent and often daily basis to recharge. It’s more than just being an introvert, the sensory experience of existing in the world takes so much more from my brain and body to process than allistic people so I need a lot more rest. It also takes me a while to process things and understand the emotions I feel, and so alone time helps me to do this.

Self-Accommodation Is Part of Autistic Advocacy

Overall, the world is vastly inaccessible to autistic people. Part of that is because autistic folks have been forced to mask and conform for centuries due to violent ableism. Choosing to accommodate ourselves when safe and possible is an important step in making the world more accessible for others. Seeing other autistics meeting their own needs and demanding they be met in public spaces is what inspired me to do the same for myself. I hope every autistic person reading this feels some hope and inspiration to be more visibly autistic and accommodate themselves where necessary, as well.

2 Comments

  1. Absolutely fantastic this has explained so much for me, I’ve been on the NHS waiting list over a Yr to be tested for ADHD OR AUTISM , thankyou for explaining this so well, I’m 45 nd only starting to realise I’m very autistic thankyou x

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Caden

Neurodiverging Admin

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