A note on functioning

Written in 2019

There's considerable momentum in the autistic community to move away from functioning labels towards support level labels as an alternative. I think this is a conversation which is going to develop some exciting new language and definitions for the varying levels of ability and support needs which people on the spectrum have. I say definitions, because although labels can be unhelpful, definitions help people on the spectrum (and those not on the spectrum) understand themselves and others.

I'd be labeled "high functioning". I finished University (and had a year long burnout afterwards), I have had several jobs and been part of the world of work, and I live without any support, cleaning, cooking and paying bills on time and to a good standard. Doing this, and managing my physical and mental health (multiple conditions) requires a lot of effort on my part to be able to function independently and not need help with these tasks.


I like this. I like being independent because I hate being told what to do, or having to please someone else's standards, or appease someone else's expectations. I put the effort in because I want to have as much independence as possible. Once your ability to function declines, or you simply can't face certain tasks anymore I feel that your agency to make your own decisions and be independent can wane and you're then subject to others running your life and making your decisions, and that's not somewhere I want to be.


I could lessen the effort I put in to keeping everything going, I could decide that I'm no longer going to perform certain tasks or functions, it would certainly lower my stress levels and perhaps even improve my mental health and ability to perform other tasks as a result, but what would I be giving up in order to get that? Well, I'd be giving up the positive effects on my wellbeing that being independent gives me.


There's no real choice here, I have to put my health and wellbeing first. Yes, it's hard at the moment, but there's no guarantee it would be any better if I stopped putting the effort in to take care of myself and let myself become someone who requires (or, more accurately, gets) support in daily living.

On paper, and to look at me in the street you wouldn't know I had any struggles with sensory issues, with social boundaries, or with general life administration. I go to the dentist, I stick to an exercise plan and I can cook. On the outside I look like I'm doing alright but this fact doesn't detract from the sheer effort that goes in to keeping all these plates in the air.

I'm very lucky to be able to articulate this and to make my experiences relatable to non autistic people by using metaphors and drawing parallels with their experiences but ultimately they'll never truly understand what my experience is like just as I'll never truly understand theirs for the same reason – we're differently wired. 


Not all of us are fortunate enough to be in this position and I regularly remind myself to be grateful for all that. I'm starting to remember to remind myself to thank myself for the effort I put in and the stress I endure to make that my reality.

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