“Do you hold me to the same standard as your non-autistic son?”
I asked my now-estranged aunt that during a fallout. Her reply?
“Yes.”
I asked why, and she said, “Because you’re both adults.”
Holding autistic people to the same standard as non-autistic people may be equality, but it’s not equitable.
So, of course the autistic person is unlikely to meet the same standards as non-autistic people, even if the autistic is older.
In my case, I didn’t have the white male allistic privilege.
Asking that question was the first time in my life I’d ever been like, “Hold up. Let me check something real fast…” because we were so not on the same page for, like, years about my struggles.
Whereas I perceived my struggles as typical aspects of my life, she perceived them as me “handicapping” myself and choosing to be difficult.
I knew other people didn’t struggle the same way, that they seemed to have everything figured out faster or easier than I did.
But I hadn’t ever thought of accepting and accommodating myself as “giving in” to my disability. Same with recognizing my limits.
Comprehending other people
Even if they’re also autistic.
Every autistic person is different, and we’re all at different stages of our lives. A Gen Z autistic will value different things I do, usually; like, I don’t understand the ironic humor.
Recently, yet still late-diagnosed autistic people? I don’t relate as well because they’re like Indominous Rexes, figuring out where they fit in the world for the first time with this newfound validation that they are, indeed, different.
Or they missed the 2010-2020 autistic community culture on Twitter era and — for better or worse — are trying to reinvent the wheel for good vertical video content.
People tend to see other people through a lens of how they want to see them, not how other people are.
I think I’ve unlearned a lot of this. Like, I turned 34 and was like, “You know what? I want to let people simply be. I don’t really care what they do, if it doesn’t affect me, and they’re not harming other people.”
Like coexisting, not controlling.
I’ve been told I’m “intimidating” — whether I paint my nails and wear lipstick or not. Because my resting face says, “I don’t want to be here.”
But my resting face in public/around people who find me most intimidating is a concoction of not masking, existential sensory overload, and chronic pain.
Like, okay, maybe I’m not doing myself any favors in this state, but…
Literally, don’t care.
I feel like society expects outliers to continue performing even though it’s obvious we don’t.
I grew up being told women should always smile regardless of how they feel and paid the price for rejecting that standard via fighting for my autonomy rights.
Executive functioning
Everything that allows you to do something boils down to executive functioning.
You may have heard about executive dysfunction in relation to ADHD.
Autistics’ struggles with executive dysfunction often lies with the inflexibility aspect.
I struggle to shift my focus to something else or multitask because of monotropism.
So a major blow to my routine = I can’t do anything until that thing is resolved and my routine is restored.
But when you’re a mid-30-something with back problems and a full-time job exacerbating those problems because of an inaccessible accommodations process, that’s a bit difficult.
Knowing whether I’m making the “right” decision
I initiated a leave of absence (LOA) from work after being told I could not say, “No, I can’t do that because it hurts my body,” without accommodations and that I had to do the work.
I was in a bind: Continue pushing myself at work, which exacerbated my symptoms, or STOP and go in to my doctor.
It was risky, but pushing my body when it was so obviously communicating to me that it needed to stop was riskier.
Still, too many people told me I was being “overdramatic” as a kid and “worrying over nothing” that that followed me into adulthood and put a damper on my new-car and dance-again plans.
My questions turned from “When can I dance again?” and “When will I be able to buy a new used car?” to “How can I afford these medical bills?” and “Is this the limit that prevents me from walking again?”
Medically advocating for myself
Because I don’t present like allistic patients, my health concerns are often dismissed.
When I’m in a lot of pain, I shutdown and appear listless.
Doctors tend to report about me, not with me.
This leads to inadequate care.
I leave with a completely different concern listed on my discharge papers, like pelvic pain with an unknown cause, prescriptions that conflict with current medications because they didn’t ask me about it and I didn’t think to volunteer that information…and a UTI when I only had numbness and tingling after having to return to my normal workload.
My patient report says ish like, “Patient has not seen a specialist since last visit.”
“Patient says these symptoms aren’t new for her.”
“Patient was tested for leg strength.”
What? When? And no mention of tingling and numbness in my saddle area.
Advocating for myself and asking questions or for clarification is usually met with the physician asking, “So what do you want me to do?” and leaving my care all up to me while nearby nurses look at me like I’m being difficult.
In allistic culture, exaggerating pain and expressing it outwardly is common. An autistic patient may instead appear agitated, listless, and/or quiet.
The more overloaded I am, more pain I feel, the less capable I am of articulating anything. I’ll mix up my words.
So I honestly loathe needing to go to the doctor. Finding a good fit is difficult for me. I can’t “just go to someone” because they need to comprehend me instead of sticking to whatever narrative they decide about me.
But then postponing doctors’ visits due to medical trauma and finances results in hospital visits. Vicious cycle.
Phone calls
Earlier this year, I’ve had to call and schedule appointments ’cause sciatica, a bulging disc, mild degenerative disc disease, and arthritis.
Which…after going to a different spine specialist, I found out I just have bulging discs and sciatica — not arthritis, not a curved spine, not a disc disease, not any of what I was told in hospital.
This was on top of other cognitively-demanding, autistic burnout-increasing, mentally-draining stuff I already had going on.
My routine was so off kelter, which builds up, up, up into total dysregulation. I shut down instead of regulating my emotions thanks to vasovagal syncope being triggered when I don’t feel safe. 💀
I never know when to talk on the phone or what to say.
My communication preferences hierarchy:
- texting
- in-person communication
- letters
- no communication
- phone calls
I got to this point of like, “When I’m able to work for myself…I’m going to hire a personal assistant, too, to handle some (or all) of these things.”
I know they exist. 👀
Neurodivergent online business owner communities are full of people with ADHD, and I’ve read emails referencing their “personal assistant”, e.g.
“So much has been going on in my life that when my personal assistant emailed me about my appointment later this week, I asked her to reschedule.”
No email has ever had me like 😲👀 as that one.
Reminds me of a post I wrote years ago of accommodations I wish I could have (but deleted shortly after because maternal relatives weaponized my blog content about disability).
P.S. Tips for writing autistic characters & disability advocate problems.
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