Unmasking Autism Diary #7: The Function of Privilege
Read now (4 mins) | Executive functioning: from inside Angela's Autistic mind
January 23, 2023
Dear Diary,
I didn’t know or understand the concept of executive functioning until fairly recently.
What I knew about myself was that I was a terrible cook and hated feeding myself more than any other task on the planet, and I resented “foodies” and people who loved to cook.
What I knew was that my partners and roommates had always joked about how long I would take at the grocery store and the piles of random stuff I’d bring back while forgetting the basics (that I didn’t know were basic).
What I knew was that even though brushing my teeth made me dry heave, I did it everyday with dread.
What I knew was that clean clothes came from the store or the laundry service because I was never going to succeed at adding laundry to my daily tasks.
What I knew was the shower was my nemesis growing up, and I had a very quirky way of getting over my fear of showering which included props and rituals to make the whole thing more palatable, but when I was traveling and didn’t have access to my system, I’d often skip the shower.
What I knew was, I could get through 8-12 hour events without needing to go to, or even think about going to, the bathroom.
What I knew was any bill not on auto pay was going to accrue late fees whether there was money in my bank account or not.
And more than anything what I knew was that I was a card-carrying phone-o-phobe, dreading beyond dread having to call anyone, but especially customer service lines.
What I didn’t know was these fears, dreads, and anxieties which lead to inaction, fees, and embarrassment, were the exact types of Executive Functioning (EF) tasks autistic people often need support with.
There is debate in the autistic community about the term high-functioning. Most of us don’t like it because we don’t feel very high-functioning a lot of the time and it separates us out in ways that help no one.
But, I think a lot of people would probably describe me as ‘high-functioning’ when what I really am is privileged.
I have always thrown money at my EF challenges before I knew that’s what it was.
To make showers more palatable, I’d buy large, plush towels, cushy bath mattes, high-end shower heads, and fancy toiletries.
To make laundry possible, I hired a laundry service.
To make cooking possible, I hired a chef (and eventually found partners who likes to cook).
To make mail and customer service phone calls possible, I hired an executive assistant.
To make bill paying possible I hired a bookkeeper to pay my bills.
To make bathroom trips possible, I hired an event manager to plan events with bathroom breaks and make sure I got to them.
All told, my executive functioning challenges probably add $100,000 a year in expenses to my life. If I didn’t have that money so many other things would fall apart around me—medically, financially, socially, emotionally…
Executive functioning is required, and so, I creatively got around it with my privilege and wealth, but without being able to hire EF services, my life would be so different.
I would have been “trying” to fix these deficits. Well-meaning people would have been pulling me aside and suggesting I take a shower or clean my clothes and I’d be embarrassed and feel shame. I know myself…I’d try harder to “get” it and believe something was wrong with me for not being able to get it. I’d try visual charts and checklists, and when I (inevitably) failed my anxiety and depression would skyrocket, which would lead to inappropriate social outbursts and harmful stimming.
So many of the “traits” of autism are reactions to failed coping. As an autistic person, when I have my executive functioning accounted for, I can avoid a lot of the less desirable autistic traits:
It’s easier to make eye contact.
It’s less likely I’ll struggle with selective mutism.
My anxiety doesn’t keep me up at night, so I’m better rested and ‘higher functioning.’
When the pandemic landed in my lap, most of my executive functioning supports (and all of my routines) evaporated in minutes. I didn’t replace them because I didn’t think the pandemic would last so long and frankly because I didn’t even know that I had created all of these executive functioning supports. I just knew that when everyone was baking up a storm, I was in the fetal position in my closet trying to emotionally regulate while under a thick blanket of pounding suicidal ideation. Yeah…Super high-functioning.
Anyway, wealth and privilege really can’t be left out of the autism conversation. Autistic people do need support and accommodation and funding to go with it. We don’t need charities raising money for a cure, we need them raising money to pay for accommodations so more autistic people have access to more of life and so that society has access to more autistic wisdom and ingenuity.
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The Dear Diary Project is a public journaling project where I’m publicly sharing my diary entries as part of my annual goals. No harm is intended by these posts. My goal is to gain clarity for myself and hopefully help others, especially autistic adults, who are trying to make sense of the communications challenges we face.
“Masking is a common coping mechanism in which Autistic people hide their identifiably Autistic traits in order to fit in with societal norms, adopting a superficial personality at the expense of their mental health. This can include suppressing harmless stims, papering over communication challenges by presenting as unassuming and mild-mannered, and forcing themselves into situations that cause severe anxiety, all so they aren’t seen as needy or “odd.”
—Unmasking Autism, Dr. Devon Price
*Background note: Most people only have a vague (often, highly stereotyped) version of autism in their minds and believe that autistic children need (traumatic) ABA therapy to "overcome" their disability and appear "normal." After receiving an autism diagnosis in her thirties, Dr. Angela Lauria realized that she too had been mostly unaware of what it means to be Autistic. Like so many people, she started her journey by first gathering information and resources from the omnipresent (and problematic) Autism Speaks, but eventually moved away from the 'autism community' in favor of the 'Autistic community,' where she found kinship with other Autistic individuals and learned to let go of pathologizing language like 'autism spectrum disorder' and 'Asperger's Syndrome.' This autism blog (and her autism podcast, "The Autistic Culture Podcast") is meant to share her lived-experience insights to support others on a similar journey of diagnosis, understanding, and community. Embrace Autism--differences are not deficits.