There are so many posts and articles written by Autistics about how utterly wrong “functioning labels” are. How inaccurate. Why we generally don’t like them. Responding with a functioning label-based observation is such a pervasive response from allistics (non-Autistics) that I think nearly every Autistic writer ends up addressing that nonsense sooner or later.
I guess my time is now. This post will be more of a story. A true story.
Over the weekend I overdid things. One of the things was for my job and the other thing was for my family. One thing each day of the weekend. Big things, but still just one each day.
On Saturday I was told, “Well, but you’re high functioning.” when the topic of eugenics and “cures” came up. As if the only reason I could *not* want a “cure” for being Autistic was because I can drive a car and didn’t melt down right in the middle of the job thing, even though I could feel it lurking beneath the surface the entire time and hardly said a word to anyone.
On Sunday I focused very hard on just being with my family. I didn’t have to drive and I really had no responsibilities, but there were people around and there was a decent amount of travel involved.
Then Monday and Tuesday rolled around. I could barely get out of bed. If Husband hadn’t fed me, I wouldn’t have remembered or been able to eat. I basically just slept those days away. I wrote a bit, got online for a very short time, was pummeled by twitter eugenicist nonsense (I’ve had a post in the works about that issue – better get working on that too), and fell back asleep.
For two days I slept and needed one-on-one care to manage anything at all.
Wednesday was better. I did a few things here and there, mainly with my children. I took a nap, but it wasn’t for all or most of the day. I helped make a meal. I even made myself two whole cups of tea! A slow reentry, as it were.
What I really want to say to allistics about functioning labels is:
This ubiquitous idea that what you see is what we are is wrong. If I’ve left my house, I am going to present as though “high functioning.” You will not see me on my bad days. You will not know about the worst times. You have no way of knowing how much I struggle on even those allegedly “high functioning” days. How much it takes out of me to do that and how much easier it would be if I just never left my house.
I was undiagnosed Autistic for over 3 decades. I assumed for most of those years that other people struggled in the same ways I did so I pushed through, found workarounds, and sometimes nearly destroyed myself in the process (not hyperbole).
My life has been carefully arranged so that my difficult times are minimized and are as invisible as possible. I have many supports set up and most are not supports that people would be likely to see or think of. Much like me mentally planning ahead for every possible situation can make me look spontaneous despite the intense amount of energy it takes, my invisible supports also lend a look of ease to the rest of my life. I’ve been extraordinarily fortunate to have access to these supports. Many people don’t.
But when I miscalculate and overdo things – go beyond both my capabilities and supports – the consequences are severe. It usually takes at least a couple of weeks to fully recover from a simple miscalculation like last weekend.
Yet, to allistics who see me in public, I’m just “high functioning” – whatever the hell that even means in the first place. I certainly get nothing positive from hearing that statement and it is not an accurate reflection in any way of my experiences. In fact, it effectively minimizes the hard work I’ve done to actually manage whatever it is I’m doing that makes an allistic think I’m “high functioning.”
So, think very carefully before you label someone based on aspects of their life that you have no business or way of knowing about. Then, just don’t give us any extra incorrect labels in the first place.
Mamautistic 
I can totally relate. Partiuclalry, I relate to the assumption that, if you don’t see us falling apart in public (or sometimes even if you do see this), we must not have it “that bad”. I also relate to the thinking everyone somehow has the exact same struggles. I wasn’t diagnosed till age 20 and when I was diagnosed, I had severe challenging behaviors, yet my parents said this was all because I had too much support. Also, if I just stopped being self-centered, I’d see everyone had the same struggles.
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Thank you for reading and leaving a comment ❤
Yes, the most common comment I get when I tell people I'm Autistic is the "but you're high functioning" one. Usually I end up info-dumping to them about the uselessness of functioning labels, but I'm not sure any of it actually gets understood.
Oy, yeah, that's a hard one to address in the moment too because a lot of our struggles *are* relatable to allistics. They're relatable because we're human and have human struggles, but they don't struggle the same way we do. Our struggles are minimized, misunderstood, and outright denied by the majority of other people; while they get much more empathy and understanding. That means that we usually don't have support through ours the way that they usually do. Adding that to trying to survive in a world that was specifically not designed for us…. yeah, not the same!
Thank you again for your comment 🙂
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I wrote a post about this as well. The image of a color wheel vs. a linear model makes more sense. Moderate difficulty in one area, severe difficulty in another, no or little difficulty in another.
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Ah, yes! That would make a lot more sense. Also difficulty levels often vary from day to day as well as from area to area.
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Yes. I also have chronic migraines, times spent recovering from the rare social event that I can participate in as well as depressive episodes. The more I think about it, I probably shouldn’t be employed at all.
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I hope allistics will read your story and get some understanding of what they might not be seeing.
I’m self-diagnosed (trying to get a diagnosis now I’m almost 40 and ‘high-functioning’ is all but impossible) and was recently told that I can’t have a problem because I manage doing things I say I have difficulty with.
It’s so frustrating because they just don’t pay attention to the times when I am sat there, head down, saying nothing, because I’m either going to explode or just being there is taking every ounce of energy I’ve got, and they don’t see me when I get home with zero energy, and can’t do anything more but sit without even paying attention to the TV.
I had to go to the shops today with my mum for Christmas stuff and I was desperate to be home before I’d even got there. The feeling got worse the long I was there, and I was left with this feeling that I just wanted to find a quiet corner and cry; I didn’t, and nobody saw that that was how I felt, but that’s the body, they only see what is on the surface, not what lies beneath, and so they make assumptions that are pretty much always wrong, and often harmful to us.
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I hope you’re able to get an official diagnosis ❤ People who don't know me very well have been less likely to dismiss me (and I've been less likely to dismiss my own struggles) since I can confidently say that I'm Autistic and that it's been confirmed. I hate that people want that confirmation, but I needed it for myself too so it was worth it.
Yes, the assumptions are so frustrating and harmful! As if we need to appear completely broken before they'll even consider that maybe we're drowning, sinking like stones. But they can't even see the water's existence, let alone that we can't breathe once we sink below the water line.
I hope that the rest of the holidays have been more restful for you. I mostly ordered things online this year, which helped, but this time of year is still a good deal of disruption.
Thank you for reading and commenting!
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Thanks. The holidays have been as up and down as I expected. I’ll be glad when they’re over and things start to get back to normal.
I know what you mean about the frustration of being wanting an official diagnosis before they’ll believe you have difficulties. It’s the same for almost all psychological issues, I have other mental health issues, like depression and anxiety, which often come hand in hand with autism, but unless they can SEE you having difficulties, they don’t believe you have them. It’s like you need a plaster cast for your brain before they’ll accept there’s a problem.
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