This applies to places using the DSM, at least until ICD-11 comes out, at which point well see if they have the same issues with specifiers.
The issue with functioning labels isn’t that they exist, but rather that their use has been distorted by the same people who speak over us.
HFA, MFA, and LFA were specifiers created to allow a short hand expectation without listing out every single support and accommodation needed, because that information is not needed when a broad understanding will suffice.
Plus, it lets us as autistics be more specific than “I have autism” so we can create an expectation without necessarily listing every detail.
@lysikan has written about how it allows them some manner privacy while still communicating the need support that meets a more specific standard - similar to how I just call myself queer because I want people to know I’m not straight, but don’t really care to go into details.
These are important uses for words that matter.
The problem isn’t that the words exist. Nearly every group has words like this. It’s part of how labeling works, and when a group labels themselves it’s a good thing.
The problem is that autistics are an outgroup, and these words were created by a subculture of the ingroup and are controlled by the broader ingroup. If the orignal medical meaning was the only meaning of HFA, MFA, and LFA, we would be fine.
But that’s not where those meanings stayed. The same people who control the narrative of what autism is perceived as used HFA and LFA, in really shitty ways.
High functioning adults were mostly ignored as being not really autistic, low functioning were routinely denied autonomy and agency even when they clearly had the ability to exert said autonomy and agency with the right kind of support.
Though certainly not all aspies are responsible, the internalization of this is what led to the perception aspie exceptionalism compared to other autistics. And honestly, I have a hard time blaming any aspies for this when the systemic forces are so clear to me.
The point is that whether or not they are useful, they come with certain connotations and implicit meanings that allistics absolutely do respond to, even if they don’t realize it.
In fact, the problem got so bad that in DSM-V the APA backed off functioning levels because the issue of what they are supposed to be become so clouded - which is exactly why advocacy groups argued against functioning levels in the first place.
Now we have support levels, and while many autistics argue that it is the same thing as functioning levels, I’m telling you right now they’re not. If they were, the general public would be using them - But most parents, teachers, and even therapists, doctors, and psychologists still use functioning labels.
The connotation of HFA, MFA, and LFA, is well established and has very deep meaning in our culture. Meaning that is completely lost on support levels.
So if functioning levels have so much extra meaning in our culture and support levels don’t, are support levels better? Well, no. Not really. They are still labels created by the ingroup, not by the outgroup. That is, they aren’t words with meanings that we as a community created and defined and eventually they will acquire the same connotation and implicit meaning as functioning labels, especially if ICD-11 ends up using them.
Our choices then are to wait for functioning labels to die and reclaim them, but that is something that can really only happen organically, or to create community terms that allow us to talk efficiently about the broad range of experiences without having to give specific credentials of needs, supports, accommodations, etc.
Doing the latter would probably take a few of the larger names in the autistic community across multiple media and social media platforms coming together either intentionally or organically.
To be clear, this differentiation is needed. Just like the LGBT community has spaces and language and subculture because of differing needs, so to does the autistic community.
Why does all this matter to the high functioning / low support specified autistics in our community?
Because the specific needs of these autistics give them a certain level of freedom and flexibility within society that low functioning / high support autistics are denied - and as advocates of the community we all have to remember that the majority of our community falls under the low functioning / high support category.
When we say that we are advocates of the community, we have to remember who we represent and that means being able to talk in concise language. When I give a panel to a bunch of doctors, therapists, and parents, I have a limited amount of time to advocate, and concise language they all understand means I can do that and still advocate for the differimg needs of the community - I just really wish i had terms the community made up to use.
So what should we as a community do? Gosh it all to heck if I know.
That was a lot to read, so here is a quick recap:
Functioning labels are useful, but were created by allistics and have a lot of that hidden meaning that allistics put into everything. I personally like support specifiers, but they were created by allistics, too. We could definitely use some sort of community terms because they are useful to talk shorthand about the varrying needs of the community, but trying to craft that sort of language is hard.
