Written in April 2022
There's considerable discussion (and pretty much a consensus) within the autistic community that “functioning” labels are unhelpful and something we need to get away from. In some places a person can be diagnosed with a level of autism, indicating their “functioning” level or support needs. This is the sort of concept that the community is looking at in terms of using graduated levels of support needs instead of a binary functioning designation to denote how much support an autistic person might need.
It could be argued that labelling levels of support (or functional ability) is pathologising autistic people, but when accessing support or understanding it can be useful to use labels to explain ourselves to people who may have little understanding of autism. Ideally we'd just be listened to, and our words and personal testimony accepted, but we aren't there yet.
One of the reasons why function labels are unhelpful is the creation of a binary designation of an individual's capability, because if someone's “high functioning” then they must be doing alright and don't need any help. If someone's “low functioning” then they must need a lot of help and probably can't do anything for themselves.
This is certainly how I think society perceives autistic people; the idea that there are just two types of autistic people, those who “pass” and are “high-functioning”, and those who are “obviously” autistic and “low-functioning”. There's a similar issue with the terms “mild” autism and “severe” autism, and hopefully a conversation around the words we use to describe the degree to which someone is affected by aspects of autism can address this too.
If there's one thing that should be obvious to anyone working with autistic people, or who have any social or family contact with autistic people, it's that we are absolutely not a binary. It's a spectrum which encompasses various sub-spectra. I may be considered “high-functioning” socially, because I can make friends, talk to strangers and do eye contact. The functional label implies that I have no difficulties doing this but the truth is that my abilities here are the result of study, practice, and quite a lot of masking effort.
I could be considered “low-functioning” in terms of my sensory issues, especially in terms of noise and the impact of noise on my ability to cope, my stress levels and the overall effect on my life. However, because I “don't seem autistic” my difficulties here are overlooked, not attributed to autism, and often seen as me being deliberately difficult as if it is some kind of choice.
I've heard things like “you're not as autistic as X person”, “but you're so clever, how can you struggle with X task?” or the classic “but you don't seem autistic”. I have a variety of responses to these, some of which stay in my head because they can veer towards the offensive (but actually no more offensive than the statements directed at me).
I can function (irony noted) reasonably well as an independent adult in terms of having a car, renting a house and so on, but when I have to deal with inconsistencies, poor communication, failures of logic and other neurotypical cognitive deficits it becomes incredibly hard for me to communicate and to continue navigating an experience or situation. The problem is that my intelligence is incongruent with my struggles, and sometimes this leads people to believe I am unintelligent or incapable in every area.
It would be so much better if we were able, as autistic people, to explain or label our challenges in terms of the areas where we need support. Just using the term “support needs” empowers us far more than the benchmark-setting term “functioning” - it accepts that support is what we need. For the moment, the battle is to move from functional labels to support requirement labels (or terminology). Getting people to understand that autism is a set of spectra within a wider spectrum, and that there aren't really clearly defined “ends” to this wide spectrum will take a bit longer.