I don’t use functioning labels.  They only serve to withhold support from those designated “high-functioning” and limit the possibilities available to those deemed “low-functioning”.  They’re crap, so I don’t use them here.  I prefer using support needs if the distinction is necessary: low support needs as opposed to high support needs.  At least those are accurate in that all autistic people need some support.

That said, most people who are not big into the autistic community and don’t know why those labels are crap would call me high-functioning.  In fact, many people I’ve told about my autism have leaned in and said conspiratorially, “well, you’re certainly very high-functioning”.

That’s bullshit.

As Hannah Gadsby said, “…it gives the impression that I function highly.  I do not.”

Let me explain just how highly I function.

People talking to each other across my office feels like yelling – and for some reason, they always raise their voices when they’re on the phone.  Sometimes the copier next to my desk and people crumpling paper is too much.  All this sets off my anxiety and sensory issues and gets overwhelming at times.  I sit frozen at my desk and nobody can tell because I can hide the hyperventilating or I just stop breathing for a bit because I’m so tense.

More than that, raised voices can turn on a sort of sensory allodynia – where I can hear every tap of someone’s keyboard ten feet away, and each keystroke hits the back of my shoulders and makes me jump.  I get hypervigilant and every sound, be it a phone ringing or a door opening or a footstep or a voice, feels like a physical blow.

I usually try to counteract this with music or videos, but when people are talking so loudly, my wonky auditory processing can’t separate it.  Their voices overpower my chosen stimulus and turn my soothing music or video into a new layer of sensory hell.  So I have to turn it off until people stop being so loud. (I don’t have any noise-canceling headphones, sadly.)

I spend all day, every day, in my office freezing to death.  I have trouble discerning physical sensations from emotions, plus cold doesn’t play nicely with my fibromyalgia.  So I spend eight hours a day shivering and in pain, unsure if I’m scared or just cold, cringing at the sound of people’s voices, flinching at footsteps.

High-functioning, my ass.

I pay my regular bills on time every month.  I don’t miss rent or forget my phone bill – because almost all of my bills are automated.  Twice a month, I have to add “Pay Bills” to my to-do list to remind me to log in to my bank and pay the larger and variable bills, like rent, electric, and my credit card.  But step inside my home and it looks like I never grew out of being the teenager who wouldn’t (actually couldn’t) clean her room.

My house is a complete wreck and likely to stay that way.  I’ve tried lots of methods to try to fix this, from FLYLady to Unf*ck Your Habitat.  They all help some and, if I have the time and hyperfocus, I can really make a dent in my mess.  But I can’t maintain it, especially not working full-time and writing the blog.  Vacuuming just doesn’t make sense to me, nor does dusting – which is why there’s up to a quarter-inch of dust anywhere in my home at most any given time. 

If there’s something I need to deal with later – because just at the moment, my brain can’t handle whatever needs to be done – I have to leave it out somewhere I’ll see it, otherwise I’ll forget it exists.  So any piece of mail or paperwork, my work lunch bag, a prescription, etc., has to be left out or it will disappear from my mind forever.  Only I don’t see the mess.  Once something has been set down, it becomes part of the landscape and my eyes just skim over it.  Occasionally I’ll notice something I left out to remind myself and think “Oh yeah, I still need to do that”, but whether or not I actually do it is a crapshoot.

I keep a paper planner (which I always end up forgetting to use after a while), a to-do list app on my phone, a task app that syncs across my phone and laptop, plus two whiteboards, but I still lose track of what day it is and time is a foreign concept to me.

But I’m SO high-functioning, they say.

I would almost never eat a real meal were it not for friends who regularly ask if I’ve eaten.  Before that, I lived on microwave popcorn and frozen pizza most of the time, because it was fast enough for those days when I forgot to get hungry until 10:30 at night.  If I’m dealing with extra anxiety that day, I can barely eat at all – the fear kills my appetite.  But the depressed days more than make up for it in texture cravings for big, chewy, sweet bready things like donuts and cinnamon rolls.

I can dress somewhat appropriately for most occasions only because, as a woman, I’ve had instruction manuals since I was 11.  Most of my clothing isn’t quite “age-appropriate” (what exactly is age-appropriate in your 30s, anyway?), but I’m told I come off as a bit young anyway, so people let me get away with it with only a few odd looks.  And it’s not like I can actually put an outfit together – I wear all black with boots and just enough color to not get stares at the office.  Or jeans and t-shirts.  That’s it.  If I have an event to go to, I panic.  I have to think of my clothes as a costume and hope I’ve done it right.  Usually I overdo it.

I can lose my train of thought thirteen times in a single sentence, especially if there’s music or tv on in the background – which there has to be, or else I can’t focus at all.  If I don’t have something in my hands to fidget with, I can’t so much as watch tv.  I try not to always be on my phone, because then I miss what I’m trying to watch; knitting is better if the pattern isn’t too difficult.  A 15-minute conversation with me can take two hours or more because I can’t keep up or I keep running off on tangents.  As I’m fond of saying, my brain is a pinball chasing shiny squirrels.

Very high-functioning, I’m sure. (/sarcasm)

When presented with something unexpected, whether at work or in my personal life, my first reaction is to freak out.  Even if it’s something I want, like a chance to do something fun in the middle of the week, if it breaks my routine or cuts into my decompressing and transitioning time, I hate the idea and I will fight it.  My brain can’t comprehend anything beyond “this isn’t how I do things” or “this will be stressful” and I literally go into fight/flight/freeze mode against learning a new program or going to see my friends.  I have to take some time, usually 24 hours or so, to let my brain work through that initial reaction before I can think clearly about whether or not this unexpected idea is really that bad. 

Needless to say, surprises are terrible and I suck at spontaneity.

And don’t even think about showing up on my doorstep unannounced.  I want that doormat that says “Are you expected?”.

I am not “high-functioning”.  I do not function highly.  The majority of my energy goes into just trying to keep up or recovering from doing so. 

When people say that I’m high-functioning or that my autism is “mild”, they only mean that they can’t see the struggles – they don’t witness the meltdowns, they don’t see the texts to my safe person when I’m falling apart at work, they don’t know how hard I have to work to remember doctor appointments or get to work on time.  They mean that I can speak without assistance (but even that goes away with enough stress), I can hold a job (though I’m doomed to underemployment because I can’t play office politics), I can drive, I live alone, etc., as though the fact that I’m capable of all those things means that they are easy for me.  They are not.

I do not function highly.  I function as well as I can on any given day and some of that is a constant struggle.  It’s exhausting, and I have to live with the fact that some things will always be beyond me.  So don’t call me high-functioning.  Don’t call me struggling, either, for that matter.  Call me autistic and living, needing and deserving of support.  That’s the truth.

Have you suffered because of functioning labels?  Were you ever told that you were “too high-functioning” for a diagnosis or support services?  What do you wish people knew about using the term “high-functioning”?

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