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-"it only hurts a little" is still pain

-"I can ignore it" is still pain

-"I can cope with/manage it" is still pain

-"it's bearable" is still pain

-"I can push through it" is still pain

-"it doesn't hurt that much" is still pain

-"it doesn't stop me from doing x" is still pain

For some, having access to their safe foods determines whether they will be able to adequately nourish themselves or not

It is not simply a choice to eat the same foods over and over again, they can be the only items that someone is able to tolerate

but many autistic online advocates (often lower support needs bc that’s what dominates & most visible in community) use that to justify them speaking about mid/high support needs & level 2/3 issues over autistics w mid/high support needs & level 2/3 autistics and family members, just because they’re also autistic, using “there is no more or less sever autism” to erase the diversity &difference in support in autistics.

but honestly. i don’t automatically trust lower support needs autistics & level 1 autistics any more than i automatically trust parents and professionals of autistics. i sometimes even more willing to trust parents of high needs autistics who genuinely try to advocate for their child more than lower support needs autistics.

i find these newly realized/diagnosed autistics w low support needs have almost a dunning-kruger effect (where someone have low expertise/experience abt something and overestimate their knowledge). many haven’t worked through or at least recognize their own internalized ableism and trauma, still learning about the *whole* autism *spectrum*, don’t know what advocating actually look like and how to advocate for real legislative & policy changes beyond online advocacy.

if i see another (usually lower support needs) person say "support needs has become the new functioning labels," i'm going to scream.

because. no. no it not.

their reasoning is people now replacing/exchanging “low support needs = high functioning” and “high support needs = low functioning.” and that people assume they low support needs "just because" they can talk, when in reality they have areas or times of having high support needs. (and oftentimes by "high support needs" they misuse it to mean needing help cook or remind shower sometimes...but otherwise can be mostly independent)

here is (how i understand) why functioning labels and support needs labels are different:

functioning labels

functioning labels is about how well you "function" to a mythical (white & white supremacist) nondisabled neurotypical capitalistic standard. it focuses on deficit and problem of the autistic person. it is about how *you* are the problem.

it puts a cap on your ability. other people assess you (with tests not designed for you) and forcibly give you the label. the assessor become the narrator of your story. you lose agency to your own life story.

to use my own unofficial metaphor, a mythical "normal" person have ability 1 to 10, functioning label states a "high functioning" autistic person maybe 1 to 7 or 8, a "low functioning" autistic person 1 to 3. being assigned functioning label say you can only function up to 3. 3 is your potential. that's your max (supposedly). all you can do. (difference is when someone use functioning label for themselves, they are telling their own story and giving themselves a self-identifier, which different from being forced one without the psychologist even bother to understand how you understand yourself and world.)

support labels

support label is of course about how much support you need. it doesn't say anything about your max potential. it doesn’t give you a cap. it shifts from individualistic "your problem your deficit your incompetence" to where community needs to do the work, how much support you need from other people to ensure you meet your potential, wherever that potential is.

it recognizes that each (autistic) individual doesn't exist alone doesn't exist in vacuum. it recognizes that how you function when you don't have your support needs met is not your max ability (because many autistic people don’t have their support needs met).

say, everyone have 1 to 10 again but everyone's 10 is different. support needs model say that while this person without proper support is only achieving 1 to 5, with support they may be able to get to 1 to 8 or 9 or 10. or an alternative system (really up to preference). some people have ability to do 1 to 7, some 1 to 3, some 1 to 12, whatever, because everyone's ability is different and that okay!! as in, for example, regardless of the amount of support i have regardless of how good of a society i live in, i will never be able to live independently speak fluently with mouth words. but even though i may never do 1 to 10 even with best support possible, without support i may only be able to do 1 to 3, with best support i may be able to do 1 to 7. (sorry really awful metaphor that erases nuance like other privilege and oppression faced, bad/good days, it's still a linear scale with a max/cap, but is simplest best metaphor i can think of.) don't know if it makes sense.

can support labels be misused? absolutely. you can’t see a person’s whole life just by what they post on internet. so assuming support needs still bad. but the misuse is not exclusive to "autism parents" and "professionals." plenty of autistic people misuse it too. and people's misuse still doesn't take away how concept behind support needs is an improvement from functioning labels. still doesn't take away the amount of advocacy it took for us to get here.

there needs to be support for caregivers that humanizes the autistic person being cared for AND does not shame the caregiver for doing what they have to do and feeling the (positive AND NEGATIVE) emotions and exhaustion they feel.

there needs to be caregiver support. there needs to be respite care.

this improves the lives of the caregivers.

but this also improves the lives of autistic people being cared for. autistic people who cannot live independently. autistic people who need partial or constant supervision and assistance. autistic people who need help on basic safety and bADLs. because we exist.

many autistic people in the actually autistic community have unaddressed parental trauma. they/we hear stories about martyr parents and it reminds us of our own trauma. this “anti-autism parents” sentiment gets generalized to all parents of autistic people.

often, they are late diagnosed and have lower support needs, so their world view and advocacy are not informed by needing around the clock care of needing to be fed, to be bathed by someone, incontinent and/or need help with the act of toileting, to be kept safe, not to mention cleaning, cooking, making doctor’s and specialist’s appointments.

i admit that caring for me is EXHAUSTING. most people don’t have the time, energy, patience, skill, ability, health, (and for family members, friends, and partner, the financial ability to do it without being paid) to do that.

“i need a lot of care provided by other people,” “providing that amount of care is a lot of work,” “providing that level of care is exhausting,” and

“i have a lot of internalized ableism and shame and self-hatred around being level 2/3 higher support needs autistic,” “it is traumatizing being told that i am too much/my disabilities are too much/my needs are too much by everyone and every institution that is supposed to help me,” “i deserve to have my support needs met no matter how many/high they are,”

are things that can & are true at the same time.

if you can’t advocate for the caregivers just yet,

then at least advocate for the autistics who need that level of care

until you can admit caregivers are people, too.

(this was hard emotionally to write.)

[photo id: a colorful chart divided into two columns. the phrase “autism is a spectrum” is on top and spans across both columns. the left column is titled “autistic trait” and lists “nonverbal, unaware of awkwardness, monotone voice, high pain tolerance, lower empathy, low eye contact.” the right column is also titled “autistic trait” and lists “hyper verbal at a young age, hyper aware of awkwardness, over expressive voice, extremely sensitive to physical sensations, hyper empathetic, forced eye contact.” end id.]

i came across this graphic randomly on instagram and i think it represents how the online autistic community understands & moralizes autism really well. this is not explicitly said in the graphic, and i don’t know what the artist thinks abt the topic i’m abt to say, but but:

the traits on the left column are often seen as autistic traits that have enough awareness already, as bad, less desirable, embarrassing, etc. and something the autistic community continuously try to distance themselves from. it’s the column that describes “those autistics” in the saying “i’m not like those autistics.” these are the bad traits, the incorrect ones, the ones that “makes the autistic community look bad.” (abbreviate as left autistic)

while the traits on the right are the “actually, these are the correct autistic traits” ones. they are the ones seen as good and cute and innocent, or ones you sympathize with, etc. the more acceptable ones within the community. i’m not even talking abt outside the community. (abbreviate as right autistic)

the left traits are associated with high support needs autistics who often can’t mask.

the right column are traits for most low support needs autistic who can mask. masking & burnout leads lasting harm and i acknowledge that, but right autistics in talking about their traits, often leaves out left autistics or uses left autistic as “bad example” to contrast how “good” they are.

“at least i’m not those left autistics”

responding to ableist saying “autistics lack empathy” to dehumanize all autistics (etc etc i can’t mimic well), right autistics instead of saying how empathy doesn’t equal morality & is okay to have no/low empathy, they say “we experience hyperempathy too!!” or even “most of us experience hyper empathy actually!”

or they make info post about how “people think autistics as monotone/no eye contact and no one talk about the autistics who are overly expressive/make too much eye contact” which medical people describe autistics as monotone & no eye contact yes, but they are not good conversations either, it’s not good visibility, there is still lots of ableism & misrepresentation & misinfo. both types of autistics deal with ableism & invisibility in general society, but in autistic community right autistics are often hyper visible & left autistic not visible.

language issues bad, don’t know what i’m saying sorry

Some of us cannot mask our disabilities. You can simply not stim if you can supress it in the first place. You can leave your cane at home if you're doing that already in the first place. A knee brace doesn't make you look like a "freak". You do appear abled otherwise.

I cannot. Many people I know cannot. I can't just "hide" my deformities and abnormal gait or convulsions to appear abled. I *need* my crutches everywhere I go. I can't supress my tics. Full-time wheelchair users exist. High support needs autistics exist. Schizospecs who cannot mask exist. People with William's Sydrome, Down's Syndrome and various obvious deformities exist. Little people. People with severe chemical burns or otherwise or scarring. People with Parkinson's, Tourette's, Huntington's, Cerebral Palsy, every disabled person who looks "abnormal".

don't like shaving or wearing makeup

have food restrictions

stim a lot of the time

need sensory protection

have "childish" interests

need to know schedules ahead of time

need a lot of alone time

can't handle certain textures

have trouble regulating emotions

don't carry conversations well

correct their mistakes

the short answer is that we work it out; i repeatedly remind her about lowering her voice, but in a polite way so she doesn’t think i’m mad at her, and sometimes that helps. sometimes i have to step away from the conversation for a little bit to recalibrate or just tell her that i can’t talk right now, and sometimes we both whisper or i wear headphones. there are a couple different ways to go about a situation like that. the essential part for me is communication so that people know my reactions aren’t an indictment against them, they’re just part of how i cope with sensory problems.