🎗️

Adult • Diagnosed with ASD, ADHD, GAD, PTSD, & Gender Dysphoria • Medically recognized system • Suspected HSD or hEDS • Intermittent Speech • AAC user • SDiT handler

[oh-heck-yeah-doritos]

Moves joints: ow

Doesn’t move joints: ow

[longlostdiaries]

I don't know who needs to hear this but:

-"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

You don't need to be in agonizing pain to be in pain.

[neurodivergenttales]

Safe foods are not the same as neurotypicals' 'comfort foods' or 'favourite foods'

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

So, they're not being 'picky' or 'demanding' asking for their 'favourite' foods all the time - those foods are the only thing that their brain will accept at that time

[awtistix]

Mmm words are leaving. Feeling tired. Burned too bright for too long.

[five-thousand-loaves-of-bread]

the autistic community often say listen to autistic voices about autistic matters which i admit often times is good advice because lived experience so so important.

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.

“nothing about us without us” means nothing about mid/high support needs autistics without us same mid/high support needs autistics.

[five-thousand-loaves-of-bread]

so. want to begin by saying that while this post criticizes functioning labels, there are autistics who do like functioning labels for themselves (including me) and they not the problem not the enemy. there are autistics who been forcibly labeled "low functioning" or "severe" who absolutely hate hate being called that, others identify with it. both choice valid and need to be respected. having said that, here is the real post:

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.

so no, even though support needs may not be perfect system, but please don't erase the progress and the effort it took.

[five-thousand-loaves-of-bread]

there NEEDS to be better support for caregivers of autistic kids and adults with higher support needs.

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.)

(also, of course there still are martyr parents, parents who infantize and baby talk their autistic offspring, parents who refuse to confront their ableism, etc. but even their story have more nuance than that)

[five-thousand-loaves-of-bread]

[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

please be kind

[jadechronicilly]

When will people realise that Chronically ill people cannot predict how they will feel in the next few minutes, hours, days or months. I could wake up feeling fine and then feel like I’ve been hit by a truck within the hour. There are no warning signs.

[awtistix]

I got braces today (? I think. Time is hard). It hurts and is so uncomfortable and I want to rip them off but I can't and I want it to go away

[valcaira]

Look I get that we all want to relate to one another. I really do. But seeing people on my post about how shitty it is to exist as a visibly deformed & disabled person in public say things like "that's why i don't stim in public" or "that's why i'm scared to bring my cane in public" is just... You're missing the point.

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".

We can't just "turn it off" like you. People WILL stare at us. Point their fingers at us. We have no power. They used to put us into freakshows. Not you. Not you who can hide your disability to "appear normal". That post was not for you to "relate to". I and many people are sick of many invisibly disabled people claiming they "want to look disabled" so they'd be "taken more seriously". It's not an invitation of you to declare you leaving your mobility aid at home or shit like that. It's not the damn same.

[metaphorically-speaking-deactiv]

shout out to autistics who get angry when they’re overstimulated. who want to hit. who want to bite. i love you. you deserve love and care too. you are not less valid or autistic because you dont have stereotypical symptoms.

[helloelicia]

I love that folks are being more accepting of autism, but I don't love that autism is being sanitized into a quirk.

There's a cute and acceptable form of autism on social media, and I don't see any indication that folks are remotely ready for discussing the rest of it, which contains all the uncomfortable things that impede a person's everyday life, require support, and make acceptance almost impossible—where the hygiene struggles, inappropriate social behaviors, involuntary movements and outbursts, meltdowns, and emotional dependence issues live. And the cuter and more sanitized the "good" autism gets, the more unacceptable the "bad" autism becomes.

[pigeon-cave]

It's tricky when people say they're supportive of people on the spectrum but don't like it when you:

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

show any other common autistic behavior

[paulfrankjuliusthemonkey]

they need to make noise canceling headphones that are comfortable when you lay on your side in fetal position

[rimonoroni]

teaching yourself how to deal with mildly annoying inconveniences is imo an essential part of treating the disabled people around you with compassion and no i'm not kidding

[rimonoroni]

sometimes you have to share a public space with someone who has loud verbal tics. sometimes a chronically ill friend will have to cancel plans because of a flare up even if you were really looking forward to hanging out with them. sometimes an autistic person will talk over you or interrupt you because they missed a particular cue. sometimes people who struggle to take care of themselves will smell bad. sometimes people with intellectual disabilities will need you to give them more detailed, patient instructions, even if it seems simple to you. sometimes you will need to give up your seat on the bus for a physically disabled person even if you don't want to move.

accommodating disabled people is not always easy or comfortable; being an ally means doing it anyway.

[kitaava]

I have recently learned about an interesting idea called access friction, in which disabled people have conflicting accessibility needs. I can imagine a person with autism who is sensitive to loud or repetitive sounds vs. another autistic person who stims loudly and does echolalia. Obviously both people should attempt to accommodate each other to whatever ability they can, but what happens in a scenario like this in which neither person can really change their behaviour?

[rimonoroni]

i can tell you! i’m an nd person with some pretty significant sensory issues (textures, bright lights, and of course, noise) who’s friends with a hyperverbal autistic person that has difficulties with volume control. that’s actually partly what this post was about.

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.

what i DON’T do is yell at her about it or make her feel ashamed for something she can’t control and isn’t doing on purpose. i don’t do this firstly because she’s a human being who deserves respect, and also because she’s my friend and i care about her feelings. if it triggers a complete meltdown (basically never happens but is a possibility) then that’s a different issue, but by mitigating my initial response of irritation, i was able to work out several methods with her on how to make things better for both of us.

[awtistix]

Body signals so confusing

[awtistix]

Why was #autism trending earlier today? /genq