Things They Don't Tell You About Being A First Time Wheelchair User In Highschool

this is going to be a long post, it's kinda just me writing all my raw unfiltered thoughts on ABA therapy as someone who actually went through it

-> TW for ABA therapy, child abuse, suicide <-

I was functionally diagnosed with autism at the age of 3 but it wasn't until I was 13 that I was actually formally evaluated for it and given an official diagnosis. I was behind in social skills and developmental skills

[ID: "was also described as a sensory seeker. She does not currently have any friends and has struggled to make and maintain peer relationships throughout her childhood. Difficulties with social skills were initially noted when she was in preschool (years before the onset of clinically significant symptoms of anxiety and"]

[ID: "Social functions: [blank]'s mother also completed a questionnaire rating her social responsiveness. Her responses on the SRS-2 indicated that [blank] is demonstrating severe deficits in the areas of Social Communication (reciprocal social interaction and nonverbal and verbal communication), Social Motivation (motivation to engage in social-interpersonal behavior) and Social Awareness (perceiving social cues) and moderate deficits in the areas of Social Cognition (understanding social cues). Severe Repetitive and Restrictive Behaviors (stereotypical behaviors or highly restricted interests) were also reported. The total T-score on the SRS-2 indicates severe deficiencies in reciprocal behavior that are likely to result in interference in everyday social interaction"]

[ID: "%ile) are mildly impaired, while her social skills are moderately impaired (2nd %ile). By domain, demonstrates mildly to moderately impaired abilities in six adaptive skills areas, including self care (9th %ile), communication (5th %ile), home living (5th %ile), self-direction (2nd %ile), social (2nd %ile), and leisure (1st %ile)"]

and ultimately all this ended up with the number one recommendation after my autism evaluation being for ABA therapy.

[ID: "Recommendations: Based on the above results, the following recommendations are made for [blank] and her family.

1. ABA therapy: [blank] May benefit from an intensive treatment program to foster cognitive and communication skills, improve independence and adaptive functioning, and help manage interfering behaviors (i.e home-based, 1:1 instruction, task analysis, etc.) Most private and community programs are based on principals of operant conditioning and taught in home with 1:1 instruction"]

*I'm getting misgendered here. my pronouns are he/him

"operant conditioning"-- like a dog 🐕🐕. woof woof.

my mom didn't know any better so she put me in ABA therapy with the Center for Autism and Related Disorders. she regrets this. I regret this more.

my autism evaluation was cruel, it dissected all my flaws as if I was a bug under a microscope in a highschool laboratory. my evaluation was passed around to ABA therapists, a line of high schoolers peering through the microscope examining the most vulnerable parts of me.

and I choose the highschool analogy quite deliberately. most of the ABA therapists at my center were recent highschool graduates with no degree and little training. they knew nothing about autism and had no qualifications. you need more certificates to become a professional dog trainer than to become a professional human trainer.

"operant conditioning"

and I wish I could say it was just a poor choice of words but ABA therapy was dog training for children. my dad used to call me an "it" and somehow I felt less dehumanized by that than the entire experience I had in ABA therapy.

I was the oldest person at my center (I did not receive in home therapy) with the next oldest being approximately 3 years younger than me. at the time I felt babied. I was surrounded by 5 year olds and I was treated as if I was not just a 5 year old but an autistic 5 year old and anyone who has been a visibly autistic 5 year old knows what that feels like. I had escaped being an autistic child and now I was being treated like one again. The head of the program tried to console me by telling me adults received their services too.

[ID: "Following the principles of applied behavior analysis, CARD has developed a treatment approach for children and adolescents with"]

this was the first lie they told me. CARD does not work with adults.

I was not allowed the privileges of being a 13 year old. because I was an autistic 13 year old and therefore I was the equivalent of a 5 year old. I was in psychotherapy at the same time and I had grown very accustomed to some level of freedom in therapy. I was allowed to use the bathroom independently. in ABA therapy I was not allowed to use the bathroom independently. I tried once, me and my therapist were on an "outing" to the grocery store and I told my therapist I was going to the bathroom and walked off and I got a very stern talking to about how I needed to "stop eloping" and if I didn't stop it would "become a behavior"

eloping became a common theme used to control me and squeeze money out of my parents.

out of everything I hated in my life, including severe physical abuse at home (which they did not report), I hated ABA therapy the most. I would repeatedly make serious threats of suicide to try to get out of ABA. no one cared. everyone thought I was being dramatic but there were times I wrote out suicide notes and ABA was among the reasons I listed. ABA made me feel hopeless, depressed, revolting, disgusting, inferior, and less than human. between ABA, my home life, and my social life I had never felt so hated and it was boiling through my skin. I acted out, I was bullying people, I was behaving recklessly, I was starting fights, and all this only made the oppressive force of ABA crack down on me harder. I was a cat hissing in the corner begging to be left alone and ABA brought a net to try to tame me further. every time I scratched back it was listed as a reason I needed to be there.

I was "disruptive" and "rebellious" and "uncooperative" and "resistant to treatment" and no one could figure out why I was "regressing" despite me shouting the answer. I was screaming and no one was willing to hear me

I hated myself and my autism. my autism diagnosis made me want to die. I didn't feel freed by it or understood I felt ashamed and disgusted. I felt incompetent and like I had failed. I was ashamed to be at ABA, it was my biggest secret. I'd lie to my friends about why I couldn't hang out and I'd lie to people in public about who the woman I was with was and I'd lie about all of it to try to cover up my most shameful secret.

ABA therapy did nothing but foster this. In ABA therapy I was mocked for being autistic and what was happening only clicked when a young kid, maybe only 4 or 5, was flapping his hands and a therapist took out her phone and recorded him. we were circus animals. it was all an entertaining show to them while they poked and prodded at us with metaphorical hot irons to make us dance. the first time a therapist laughed at me for rocking back and forth I wanted to throw up. I almost did. it was systematic bullying of children I was forced to watch and experience.

my point is: the last place on earth I wanted to be was the ABA center.

so of course I tried to leave. my mom would bring me McDonald's and I'd beg, sobbing real tears, to leave early because only she could sign me out. every time I'd go to meet her I'd be marked as "eloping" and my hotel stay in hell would get extended.

my natural response to a stressful environment (leaving) was pathologized. I was eloping this way and that way and never once did I actually, truly elope. that word was a weapon used against me. they used my "elopement" to justify extending my stay to my parents. they ate it right up.

they argued I needed to stay there because I was making friends. this was true, I'm great at getting along with children it's part of why I want to go into pediatrics, but I had also made real friends with people my age at my highschool. ABA was getting in the way. I wanted to spend time with my friends outside of school but ABA took up all my time from the minute I left school to 6pm and all day on weekends. I was doing a full time job's worth of hours. I complained about how I was missing out on spending time with my real friends (as in, over the age of 7) and I was met with almost no wiggle room in my schedule. I was allowed to pre-plan time to spend with friends but every time my friend group wanted to do something spontaneously? I had to say no, and I had to lie about why. my friends would share stories about driving around town with 2 people in the group stuffed in the trunk, of hanging out in the woods together, of taking part in ordinary highschool activities as ordinary high schoolers and it made me cry because I was not an ordinary highschooler and I was not allowed to participate in ordinary highschool activities. I was one of those weird, unpleasant, socially awkward autistic people instead. eventually, they just stopped inviting me. I was forced into the out group by ABA.

I'll never get that back. I'll never get a chance to be a normal highschooler ever again.

when I did have time available to hang out with people I never had the energy to. at the time I was living with an undiagnosed physical disability and I was begging to see a doctor but no one would believe that it wasn't just anxiety. the people who believed me least of all were the people at the center.

I was constantly told I was trying to get out of therapy by "feigning" very real pain and fatigue. I tried to explain spoon theory, and that I had limited spoons, and in response they made a task for me to name things to "regenerate spoons" that's not how it works. I wasn't the only physically disabled person there. there was a wheelchair user who was constantly forced to stand for periods of time despite being in agony doing it. he wasn't allowed rewards until he did it.

rewards were used to train us like dog treats are used with dogs. sometimes the treats were fun! I'd get to cook, play Mario kart, and go on outings. other times the treats were "using the correct name and pronouns for me." I'd constantly be threatened with deadnaming and misgendering if I was being "noncompliant."

misgendering because of my autism was a theme in my life. my neuropsych evaluation report misgendered me. my parents misgendered me. the staff at ABA misgendered me. at one point the head of the program suggested that my "gender confusion" was because of my autism. my abusive father latched onto this and still claims that the reason I'm "confused" about my gender is because the evil transgenders tricked me into thinking I'm one of them because I'm autistic and therefore easily impressionable.

the two therapists I had were nice because I refused to work with the others. they weren't on a power trip and both eventually left because they realized the harm the organization was doing. other therapists were not so kind. other therapists were on a power trip, because in their mind lording over autistic 5 year olds (and autistic 14 year olds) makes them powerful and strong. occasionally I'd get stuck with one of the other therapists when my usual therapists were out. they would talk to me in a baby voice. they would make fun of me for rocking back and forth, for not making eye contact, for talking about Skyrim "too much" and generally just for being autistic.

I never really knew what I was supposed to be doing, just that I was doing it wrong. the therapists there rarely actually told me what my tasks were they'd just mark yes or no on them, judging me for something I wasn't aware of. I was never actually supposed to graduate, I was never supposed to get out, if they wanted me to succeed they would have taught and explained what was happening but I was intentionally left in the dark.

I continued threatening suicide to get out. no one took me seriously. I was seriously considering it. there's no happy conclusion where someone finally realized it was all wrong, or I figured out how to be allistic and graduated, or I felt more comfortable there. I only got out when covid struck and shut the center down. it's gone now, replaced by a family advice center. I hope their advice for autistic children is to never put them in ABA.

there is no grander message here just suffering. I'm sorry if you were expecting some sort of great point at the end of this. there's not one. it happened, I wish it didn't, and I hope no one else experiences what I did ever again.

okay to reblog

The r slur is a nasty, nasty word and I do not understand how so many otherwise progressive people hurl it around like confetti. A lot of yall have zero solidarity with those who are intellectually disabled. You are not ""reclaiming"" it when you use it to insult someone. Be real, you just wanna use it cuz it gives you a little surge of catharsis whenever you are Big Mad. Fuck you.

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.

Jus wanted to take a moment and say..

DO NOT, UNDER ANY CIRCUMSTANCES, TAG MY POSTS WITH ANYTHING RELATED TO LIFTBLR!!!

That shit is fucking stupid...I swear..how're you gonna go into a store (or several) shoplift, and then not only come home and brag about it online but do so by sharing photos of the stolen items, a list of the locations you hit, AND the monetary value of the items in question?!?!

This blog is NOT about shoplifting or theft for fun or to be quirky or what the fuck ever...it's about legit KLEPTOMANIA!!!

some of y’all will be like “yeah i support autistic people” and then go bully the weird kid at school

He doesn't have "the brain of a two-year-old," he has the brain of a forty-year-old man with IDD

disabled adults don’t have “the brains of children” they have the brains of adults with disabilities. just because you can’t understand the difference doesn’t mean it doesn’t exist

no you won’t be “high support needs” “like me” if you just unmasked, especially if choose to unmask, thank you very much.

on tumblr lot more people know about it which great! that improve life of all AAC users. but pretty much with anything disability/developmental disability space on social media (which need certain amount of cognitive/intellectual & language abilities be on even if have support), good majority you see be teen & adult people who already literate learn language via speech n write *first* n then *independently* learn AAC base on it *later*.

especially symbol based AAC, but all AAC, is new system n hard n take long time learn even when you literate & not moderately severely cognitively disabled. but also, “literate teen/adult independent learn AAC” not at all full face of AAC user community.

as in like. experience of theirs. not universal. independently motivated & able to look up different AAC options different AAC apps, compare n contrast. download app n immediately know how to use, or able figure out by self. first time use app n may be clunky n slow, but make sentence on first try. need learn AAC, but most of that learning is for where words are (if button based), how exist as AAC user in public with confidence, etc. those all valid but not true for everyone who need AAC, especially not developmentally disabled children (& some adults) with complex communication needs.

most developmentally disabled children (n some adults) w complex communication needs who need AAC, can’t just hand them tablet with symbol based AAC app or text to speech AAC app n then wait for magic. many of them developmentally delayed in way, not taught in way that fit them (e.g. gestalt language processors), n their language abilities behind peers, so they can’t read, can’t spell, can’t grammar, etc.

some of them need learn where word is not by read word, sometimes not even by understand symbol, by other people press button n hear sound n associate that with meaning n location on AAC n symbol associate with it. in other words, they learning language alongside AAC.

for some their learn process look like, learn how use AAC say one word. n then much later, try make two word message, “want food” “go school.” “two word message” incredibly common goal for many these developmentally disabled children, teens, n even adults, that is something rare n truly extraordinary for that person that need be celebrated.

for others it look like learn by phrase (gestalt), then slowly break it down into smaller phrase n chunks n finally single words.

many of them babble (click random/seemingly random buttons on high tech device, stim with it, etc). but ultimately, won’t be able learn all by self. need be taught, see you accidentally spill water n crying, maybe you “feel” “sad”, n when that happen you “need” “help” from adult. need learn AAC by adults around them constantly model with it, constantly use it in conversation, show them how use. because they learning language along side it.

but also some of them don’t know what this thing in front of them (AAC… device, low tech boards or picture cards, etc) is. don’t know what communication is or you should do that. don’t know people exist who you should communicate to & with. heard many parents n SLP say they try model all time, try all kind of stuff, but child just not seem interested in it, don’t look at it, don’t touch it, don’t use it.

people who use AAC, not all them struggle with only speech. some them struggle with language, with intellectual/cognitive. some of them very developmentally delayed.

n some people, too disabled learn or use AAC. yeah, they exist.

for people who cannot use / cannot only use speech to be understood, AAC can be life changing. but is so much more complex thing. AAC still not as widely used n accepted n properly taught n supported as should, some parents n professionals n schools still many pushback n refuse. but sometimes answer to “have you tried AAC for them” is “yes, but they need long time n lots help to learn n we not very far yet even though spent long time on it” or “yes, but they simply not show interest even after constant model” or “god, wish can, but insurance only cover if show some amount of communication competence n ability use AAC, while only give 1 month trial, which simply not enough time” (wide spread thing that happen) or “yes. many types. it not work.”

for many AAC users & AAC user-to-be, it not as simple as “be handed AAC n check back in while they figure out by self”

apparently people are now purchasing thick water to make slimes with because of a trend on tiktok

thick water is for disabled people who can’t swallow properly. stores usually have extremely limited supplies of it.

please don’t buy thick water for fun or to make slime with. it’s literally the only way some disabled people can drink anything. It’s not a fucking toy

I hate hate hate hate hate aspie supremacy rhetoric I hate it so much. So many fucking people on here say they not aspie supremacists but the only difference is they don't say asperger they still believe that all autistic people are low support needs and only need help because society is bad and wouldn't be disabled if everyone was autistic and it's not true. Think that autistic people who can't take care of themselves aren't autistic at all and don't actually exist and I hate it.