“Go To Therapy” Are You Gonna Pay?

want say something about discussion of aba therapy think not mentioned a lot: most places (that I see) online are hostile to aba survivors speaking about aba

there's the constant risk of aba providers or parents seeing survivors just talk about experiences and respond with immediate attack. AND if add any level of nuance to discussion (which often may have more understand of, with experience), then big risk of autistic people who never saw aba respond with immediate attack

fyi things like insulin, hearing aids, wheelchairs, glasses costing money at all is a form of structural ableism

Don't tell me you're tired too!

I have ME (myalgic encephalomyelitis) also known as chronic fatigue syndrome. People seem to think that it's just that I'm a bit tired and i often get comments like "I'm tired too" or "i think I've got a bit of that".

I am NOT "just tired"

Most people fail to understand the differences between fatigue, chronic fatigue and chronic fatigue syndrome (ME), so I'll explain:

Fatigue is extreme tiredness caused by mental or physical exertion or illness.

Chronic fatigue is extreme fatigue that doesn't go away with rest and last for a long period of time usually due to a chronic illness. While not an illness in itself it is a symptom of many chronic illnesses.

Chronic fatigue syndrome (ME) is a chronic multisystemic neroimmune disease (meaning it affects a lot of stuff and lasts a long time). While chronic fatigue is the most well known symptom it is not the only one. ME/CFS can cause a wide variety of problems including but not limited to, sleeping issues, cognitive functions, muscle and joint pains, headaches and migraines, soar throat and glands, flu-like symptoms, dizziness and feeling sick, breathlessness, hypersensitivity and heart issues such as palpitations. ME/CFS can last anything between months, years, decades or even life. No matter how much you rest it doesn't go away. There is no cure and no effective treatment. It is NOT just tiredness!

I AM NOT JUST TIRED!

I have soul crushing chronic fatigue that you probably can't even imagine and it plagues every moment of my existence. I am in constant pain. My clothes hurt my skin, the light hurts to look at, the sounds make my migraines worse. It hurts to move, if i so much as breathe it feels like I'm being stabbed a thousand times. My brain no longer works correctly, i have brain fog all the time. I can't sleep no matter how badly i need it and when i do it's filled with nightmares and i wake up at 3 in the morning crying from the pain. Even if i had the best sleep of all time i would still wake up the same, more sick than i previously thought possible.

So I'll say it again,

I AM NOT JUST TIRED!

Sick of Kleptomania being treated as the punchline of a joke or as a quirky character behaviour in media. Like "oh here's our klepto friend, at some point in the series we're going to need a maguffin and whaddaya know, klepto over there will have stolen it!"

It's not funny. It's not a chekhovs gun or a magical maguffin. It's a mental disorder.

Just like how we're sick of autistic stereotypes, ADHD stereotypes, OCD stereotypes in movies, can we also get over the "Cute Klepto" character.

Please share!

Lets try this again.

Kiku is trying to crowdfund to get a nimbo posterior walker because Kiku's current mobility aids aren't meeting Kiku's needs.

Kiku is try to raise enough to get the walker, a seat harness, and a tablet mount for Kiku's talker.

The walker is $322.64, the seat harness is $94.50, and the tablet mount is 37.04.

Kiku's goal is $510 to cover taxes and fees.

$0/$510

Cash App

Pay $nonspeakingkiku on Cash App

Instantly exchange money for free on Cash App

not be able communicate by words means… constantly be misunderstood. misinterpreted. not have any way show own perspective, your side of story. your story always written talked about interpreted read thru other people.

someone did something wrong you. someone hurt you. someone say wrong thing…

someone make up malicious thing about you. maybe that you rude ungrateful bad temper behavior problem. it now become truth it now become you because there no way you correct them.

you can’t educate them. you can’t explain it to them. nevermind that, for example, you severely disabled n having symptoms that impact quality of life, or have symptoms that dare inconvenience people - can only watch as people around you speak “for” you not with your interest in mind but of their own selfishness - that people who can communicate by word say you only do that because you lazy, you selfish, want attention, on purpose, just want to for no reason, faking, inherent personality flaw.

not just big things. more often it those small things that build up every day, happen tens n hundreds of times each day, every day, every week, every month, every year… more often it those small things that add up that break you.

imagine everything bad, incorrect, & bad and incorrect thing said about you in your life. n now imagine you not able defend yourself, explain yourself, or even say those wrong not true.

n any attempt of yours to maybe protest, not enough, people not understand, or downright not listened to, made fun of. at first you shake head make noise meaning no all calm. after while of it not work you get frustrate n it start showing. you get impatient n snappy, why none of you understand, is any of you even trying. but people around you with privilege of able communicate n defend self thus never have experience of not have that, find it such basic of skill that they no longer see it as acquired skill but instead see as innate, born in, natural, cannot imagine person not have it just like can’t imagine living person not breathing—they only see their perspective n only see their interaction n not the many, hundreds n thousands, of previous communication where no one understood you (or even tried to). so they mock you (sometimes they the one who on purpose provoke you to see your reaction like you monkey in cage for their entertainment), geez big reaction why can’t you be patient. n you get label, impatient, rude, explosive, anger issues.

you protest in only way you can without words. you do it by sounds n noises n movement. you raise voice you scream you smash thing around you you hit yourself in frustration you hit other people who don’t understand you because you frustrated at their incompetence n how much they failing you. because. show me another way person can communicate without words. show me way that one can continue do after tens n thousands of misinterpretations n miscommunications n malicious interactions.

you communicate in only way you can with only emotion you can feel at this point: anger, frustration, helpless. be misunderstood, even smallest innocent one become trauma become trigger. miscommunication alone can set it off, make you see red n see billion of previous miscommunication where everyone failed you n left you to fend for self. then the backhanded jab that sometimes follow, that make thing exponentially worse.

you communicate in only way you can with only emotion left you can feel that consume you. loud sounds, screaming, get physical. it not earn you be understood. it only earn you this: be called impatient, irrational, explosive, land mine, rude, ungrateful, annoying…

“behavior issues.”

and that’s another misinterpretation of you you can’t defend yourself against. cycle repeats.

n other verbal people only listen to other verbal people. so these descriptions of you become “your truths”.

n the true you left there. to rot.

a lot people with no functional communication (either because no ability, or because circumstances) labeled as have behavior issues. yeah, no fucking shit. try it for a while. anyone would “have behavioral issues” in these circumstances.

no one seem to care. so okay fuck yeah am difficult kid, have behavioral issues, make your life miserable. yeah am terrible person, have internet personality flaw of no fault but my own. except now do it on purpose, make it true now, put ability to control own truth in own hand. because you all seem want me be that so bad. so now you get it. don’t complain now, you all asked for it really really nicely.

but deep down. at most basic. hidden beneath. really just. want be understood. want be helped. want people to learn my communication.

“many behavior is communication” yes, those kind of behaviors should be respected n valued n listened, but try behavior your way out of correcting n explaining everything just said in post to person who just don’t seem to get it

without rely on good grace of nice people around you who keep on play guess games n give out guesses in words you can nod or shake head to. now, that’s cheating.

people not nice to people who *have no choice* but to *only* rely on behaviors & vocal noises to communicate

n, even if every single person nice. behaviors n vocal noises alone, not enough.

this written with full time experience in mind

a damaged cerebellum causing ataxia, nystagmus, weakness, tremor, etc. etc. vs. a bad childhood

clearly exactly the same thing

btw if you wanna see a blind character, the chief engineer on Star Trek: The Next Generation is blind. He has a thing across his eyes that helps him see

I have no idea if this is eugenics-supporting anon so I'll assume you aren't.

Yes, Geordi! Gods, I loved him growing up. He was such great representation, especially for the ti.e period.

It's very common for people to push those with demonised personality disorders to the end of their tether via manipulation, bullying, abuse, etc. and then get upset with them when they inevitably snap.

It happens a lot within the neurodivergent community, too! People spread lies about us, do things that purposely upset/trigger us and then when we start to get upset/stand up for ourselves/etc. it's "sEE??? we were right about them all along!!!!"

"Nonverbal people are communicating, they can use AAC devices!!! The only reason a nonverbal person can't communicate functionally is because the people around them are not trying hard enough!!!"

(Sometimes this statement in some situations is true, but I am talking about when it is not true)

Have you tried using symbol based AAC? Do you know what any AAC apps are called? Do you know there is different types of AAC? Have you even actually looked at the home page of a high tech AAC device?

For someone without impaired communication, I think it would probably take about 1-2 months if not more to fully learn their way around a high tech AAC page set.

Now imagine an illiterate person, a person who has severe fine motor delays, a person who does not understand what people are trying to get them to do when given an AAC device, a person who doesn't understand any language at all, a person who doesn't understand what AAC is or even the concept of communication in the first place, a person with little interest in communication.

Can you imagine that person, handed an AAC device? Do you seriously think they will suddenly starts expressing their thoughts in great detail?

Have you ever talked to someone who used to fit the criteria of being profoundly autistic or someone who's profoundly autistic caregiver? Have you listened to how many hours of therapy a week they have for their communication? Sometimes five hours a week and sometimes even more. Do you know that? Do you know how hard some peoples caregivers try? How much they wish their child could be able to communicate functionally?

How much money they spend on AAC apps? Do you even know how much an AAC device costs? A SGD? Thousands.

Stop calling caregivers lazy when they say their child can't functionally communicate their needs. You have no idea how hard they are trying.