#functioning labels

Yes very much and not for better . Not for Pixie and other more disabled autism people . Possibly for better for those more high functioning , but at much too high cost for those more severely disabled autism people ...

The “ conversations “ about autism now mostly centering high functioning low support needs autism people . because . They have many many many more words and much much much louder stronger voices . And . They been devastatingly aggressive about silencing parents , caregivers , doctors , therapists , Teachers , and all other people what care for low functioning high support needs autism children and adults . Autism people what not can communicate anything without help , what are even more language-disabled than Pixie .

So many low functioning high support needs autism people just not able advocate for them self . Pixie think is not very common be low functioning high support needs and still able “ speak up “ about experiences like Pixie can *sometimes* do .

Even when Pixie CAN communicate about experiences that not be common in high functioning low support needs autism people … too too often get harassed , accused of being fake / Just a “ stereotype “ , that experiences not actually possible or real , repeatedly told am wrong about own experiences and am “ bad representation “ . Pixie get silenced just as much as not-autism people what are try to advocate for they low functioning high support needs family members or patients .

It not always been like this . it not need be like this ! Is not competition !!! Is absolutely possible to have conversations about be high functioning low support needs with out punching down on more severe disabled autism people .

A lot of what I see is people saying they're bad, there's no need for them and that they have no use, that they're basically functioning labels and ableist, that we shouldn't be comparing ourselves and each other, and that they somehow don't include high masking people.

None of these things are true, they ignore the fact that often these labels are self-identifiers, and honestly, I think when having discussions on terminology like autism levels and support needs, the voices of levels 2-3 and HrSN people need to be centred. We're the people who need these terms, we're the people who often depend on them to actually communicate our needs, so when people go around saying these terms are bad without having so much as an afterthought about us it is really upsetting and hurtful.

I’m glad we aren’t using those anymore but the level system now is weird too. Like…what does highly functioning you mean I’m level 1?

You realize that it’s not bad for someone to need more support then you, right? You realize that people needing more or less support than you is a thing, right? You realize that maybe we still need labels to get the point across and build community within a community, right?

You realize that the lives of higher support needs people and lower support needs people are different so they need something to connect with eachother, right?

An important paper by Hari Srinivasan, a nonspeaking autistic researcher about a new model of neurodiversity that serves all of us better and brings knowledge from all disability communities. https://www.sciencedirect.com/science/article/pii/S3050656525001245#bib17

some quotes:

labels such as “autistic” or “ADHD” can provide identity and access to resources, yet when misapplied, they also reinforce marginalization. While necessary, such categories, can reduce complex support needs into static descriptors, particularly when terms like “low-functioning” or “high support needs” become shorthand for “resource-intensive” or “burdensome,” leading to lowered societal expectations and reduced access to essential opportunities.”

For many high‑support autistic adults, “independent living” means residing alone while a rotating cast of Direct Support Professionals (DSPs) provides care—relationships that are, by definition, transient. National DSP turnover runs 40–70 % per year (Friedman, 2020; American Network of Community Options and Resources [ANCOR], 2021), so such autistics repeatedly lose the very people charged with supporting them, resulting in unstable relationships and repeated losses of connection. Service systems nonetheless judge success by how quickly these autistics can be moved out of the family home and into such semi‑independent programs; arrangements families themselves describe as less stable (National Council on Disability, 2020).

A double standard emerges: neurotypical adults—and even “more‑independent” neurodivergent peers—are encouraged to cultivate lifelong family bonds. As one national report notes, “family and friends comprise the most basic unit of any society” (National Alliance for Caregiving, & AARP, 2020, p. 4). High‑support individuals, by contrast, are told that success requires leaving that basic unit, living away from their families, who are often their primary long-term stable relationship, and relying solely on impermanent paid staff. This version of independence is more isolating than empowering. When policies and social norms equate independence with dignity, they render interdependence invisible.

on excluding nonspeakers and autistics with intellectual disabilities from research: