Why this autistic label feels uncomfortable
This is my personal take. I am really curious how other autistic people feel about the same label.
Although no longer used in clinical diagnoses, I hear a lot of people refer to us autistic folks as high- or low-functioning.
I can understand the benefit of a quick descriptive label. It clearly conveys something tangible to the average listener. Else it would not exist.
But what it conveys about me is wrong. And that misunderstanding can feel shitty. Here is why.
What you see is not what you get
Just like for everyone else, unless you are inside my head: your perception of what is going on in there is wrong. If you are neurotypical, your perception is likely more wrong when looking at the autistic people in your life than it is with others. But you never know. Which is the point.
I have spent my whole life masking to fit into a neurotypical world. You 100% cannot tell how difficult things are just by looking. I am very, very good at hiding that.
What you call “high-functioning autism” feels to me more like “extremely well-disguised autism”.
You are — understandably — basing your assessment of how difficult things are for me entirely on what you can see. But that is not the whole picture. Which hurts, because it minimises the challenges you don’t see.
At its worst this makes it feel harder to ask for, or even feel entitled to, your help.
With a very tiny handful of exceptions, the people in my life only see the “good” bits. If you instead only ever saw the “bad” bits, I suppose you might feel differently.
Good Lauren — bad Lauren
Here are a few examples. There are loads more. Sometimes it goes one way, sometimes it goes the other. You’ll likely only ever see one end of that spectrum though.
Routine stuff. Plenty of close friends have known me to get annoyed or taken aback by a sudden change of plan. Or to chase up on plans before others might. In much more detail. Almost no one has seen me literally fall to the ground and become non-verbal for over an hour because a plan changed unexpectedly.
Sensory stuff. Colleagues have seen me fidget with a little sensory toy while on a call. None have seen me compulsively rocking back and forth while overstimulated from a day of too many meetings. Or breaking down in tears because the feeling of my toenails against the bedsheets is keeping me awake for the third night in a row.
Social stuff. All my friends know that, while I enjoy seeing them, it costs me an above-average amount of energy. Most of them don’t know that I will not leave the house alone except for in the early morning, even to go to a supermarket, just because there will be more people there. Exceptions for reaching certain social events or medical appointments, of course… But most of those times I arrange a phone call while travelling so that I am distracted from what is going on around me. Either way, it usually takes me the rest of the day to recover, especially if I had to go somewhere new. And a few days of consecutive social events will make me physically ill.
Everything depends on the context. All of us thrive in certain environments more than others. But the world is not set up for autistic folks. So there are fewer environments in which I can function well. Whether or not you get to see that from the outside.
The “but” is a slap in the face
When people call me high-functioning, either directly or when talking about me to others, it usually comes with a “but”. Sometimes out loud, sometimes implied.“
But you’re high functioning”, or “you’re high functioning though, aren’t you?” feels like I suddenly need to justify my needs. Like things can’t be that bad. Or that my needs do not matter quite as much as they would, had you not made some assumption based on what you can see.
Hearing stories of people telling others of my diagnosis feels similar. I know of at least one occasion where someone felt the need to add “high functioning” because they were concerned about how the listener — we had never met — would then perceive me. Almost like “she’s autistic, but oh, she’s not that kind of autistic, don’t worry”.
No one would add this caveat if they weren’t trying to interrupt an assumed mental image. To me, this just illustrates a lack of understanding about autism. That others’ perceptions of it are likely to be wrong.
This is not their fault… But remember, if you are talking to someone about autism, you are in a position of power. You have the opportunity to address misconceptions then and there. Rather than reinforce them.
In either case, the explicit or implicit “but” implies that I don’t need any adjustments or support. Sometimes I do, though. And the fact that my diagnosis is so invisible makes it all the more important that others don’t dismiss this information outright.
What CAN I call you?
This might sound a little out there, but… you could just call me “autistic”.
If there is a genuine need to differentiate, support labels might be better. So, “high, low, moderate support needs”. This feels more helpful. It describes what someone needs in order to make the world accessible to them. Rather than defining the individual.
I feel the need to caveat somewhere that I am not trying to diminish the difficulties of others on the spectrum, who do have higher support needs than myself. Far from it. I cannot speak for others’ experiences… but would guess that for the same reasons I am over-estimated — i.e. people taking things at face value and a lack of understanding around autism — others could be under-estimated. Which, if true, is even more unhelpful.
I am autistic. I am not high- or low-functioning. I am just about functioning. Kinda like the rest of the world.
Lauren x