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.