Lives derailed… by the fiction of functioning labels.

Yesterday, I was doing great, I was writing up a storm before lunch I had managed to punch out a couple of thousand words of writing stuff in my long piece, I am working on.

I was completely derailed. A text message. The content of the message was not so important as the realisation of the vitriol, transphobia and dislike for the person I was.

It totally derailed me.

I was left, with tears rolling down my cheeks, my contacts falling out as a result, in the middle of a local cafe.

Whilst what occurred was something that would be highly upsetting to anyone, I’m not so sure it would be derailing to everyone. As an autistic person who relies on predictability, routine, and so forth it was more than just the pain of the content, it was a deeper impact in my ability to function at any competent level for the remainder of the day.

And that’s kind of the thing with functioning and neuro divergent folks, our functioning fluctuates, week to week, month to month, moment to moment, and in this case second to second.

Oftentimes, actually autistic voices are quieted, silenced and erased with the claim of being too high functioning to understand their low functioning child. To start with functioning labels are just ridiculous in the extreme.

I mean in practicality, an autistic child is assumed to be either high functioning or low functioning by the masses on the basis of whether they can speak.

I and others have been declared high functioning because we an type, as though because we can type we must be high functioning and be able to speak. It’s basically a pile of steaming shit, but it is what we deal with when talking with parent groups in the autism world.

The whole argument of high and low functioning should really be dismissed by the simple fact that there is no such diagnosis as High Functioning or Low Functioning Autism. It is a fiction.

The very fact that it is a fiction should shut it down right there and then, but unfortunately, clinicians and diagnosticians and autism charities use the labels as if they are actual real diagnoses.

I know Autistics who even have it printed on their diagnosis reports. But it is still just a fiction.

Clinicians, therapists, and so on, seem to have come up with the high functioning label, mainly I suspect to try to soften the blow, for the parents receiving the diagnosis of autism for their child. I kind of get it, but making up things that don’t exist to make people feel better when acting in a professional capacity is surely, at best, poor form, and bordering, I would say, on malpractice.

Not only is it a fiction in terms of not being a real diagnosis, it’s a fiction and a total misunderstanding about how autitic people live out their lives.

Like stated functioning fluctuates a lot, it can change in the blink of an eye. It can change in many ways, it could be loss of speech for a period of time. It could be just losing agency and capacity to get up and move. It could be a reduction in executive functioning capacity.

For me yesterday, it was a bit of all of those things. I could easily have been described in those moments as low functioning, because I was.

And there’s the rub, it’s not a set thing, which is a very real reason not to define people by a functioning label that could be something only evident and applicable in a moment.

The other side of this whole debacle is that people labelled low functioning are considered having nothing to offer. They are often given the label on the basis of their ability to communicate with their mouth parts. Anyone who has ever considered communication in even the most cursory way would be able to tell you that communication is not simply our ability to flap our lips and have understandable words come out. It is far more complex than that.

Worse than this is that they are often effectively lumped with a belief about them that they are not capable of anything, don’t have any voice and therefore they lose agency over their lives.

And that’s the rub. They are derailed. Not just for a moment, an afternoon, a day or even a week. They are derailed for years, often their whole lifetimes. Their agency over their life is tightly controlled by others, be it parents, institutions, or the state.

It’s been said, often, by more than a few autistic peeps, that functioning labels hurt us. They really do. And a key way they do that is in having control over our lives and support to make lives that are fulfilling and the best they can be.

Those of us labelle Low Functioning are considered too low functioning to achieve anything, and so supports are often not about making a good life for us, but about making life easier for our caregivers.

Those of us labelled High Functining, well, basically, we are considered too high functioning to obtain any help and support.

Functioning labels, no matter whether they are high or low derail us and steal agency and fulfilment from our lives.

It’s time to stop the fiction of functioning labels when referring to autistic people.