Obnoxious How Most Anti-infantilization Activism In Many Low Support-centric Autistic Communities Seems

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

what's the most upsetting ask you've ever received?

The one from last night where someone who claimed to be pro choice not only approved of aborting fetuses with Down Syndrome. In fact, they thought it should happen with every Down Syndrome pregnancy. I don't even want to post a screenshot of the ask.

There's also the death threats, suicide baiting, and rape threats, but those were for another blog.

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

If you’re someone without a personality disorder trying to defend people with personality disorders, you get told that you’ve been manipulated and brainwashed and can’t be trusted.

If you’re someone with a personality disorder trying to defend yourself, you get told that you’re manipulative and dangerous and can’t be trusted.

There really is no way for us to win.

I love people with npd so much. I’m sorry that world is so ableist. I’m sorry that you can’t be anywhere without hearing the word ‘narcissism’ or ‘npd’ used in a negative light. I’m sorry that there isn’t anywhere near enough support.

I’m so sorry that you can’t win. It must be so suffocating and aggravating, living in a world where it feels like everybody hates you. You deserve better.

i wish people knew what a developmental disability was, and I wish people didn’t think intellectual disability made you undeserving of respect.

i am developmentally disabled. i am not intellectually disabled. while I am semi independent, i still need some external assistance for my developmental disabilities. i keep investigating programs for housing, job assistance, etc. for “people with developmental disabilities” and not qualifying because I don’t have an intellectual disability.

yes there should be programs specifically for intellectually disabled people. but do your research on what a developmental disability is before offering us services.

and STOP saying “oh but you’re not INTELLECTUALLY disabled” “but you’re not one of THOSE disabled people.” Intellectually disabled people deserve respect.

why doesn’t the x-mansion have wheelchair ramps

it’s literally his house

how does he get in and out of his own house

I would probably have way less diagnoses if the doctors had explained to my parents and properly documented things when I was a baby.

Like, I have some unspecified hip condition, I was born with it. That's all my mom knows. I figure it's bilateral, and that might be why my gait is weird and gods know how many of the other problems I have with my legs, like how one's longer than the other. The TBI I got as a baby was, according to my mom, complicated. All the doctor really bothered with was saying I'd be fine, he didn't tell her a lot of details. Again, gods know how many of my things that could have caused. There was whatever happened when I was five, when a severe allergic reaction (to something I had only been slightly allergic to before and have only been slightly allergic to after) and asthma we hadn't known I had put me in the PICU for days and the hospital for two weeks, then a nebulizer for months and an inhaler for year but never an Epi Pen, which I have questions about now. Apparently I also have something up with my heart.

And we don't have any of this information because the doctors weren't explaining it.

Being disabled has made me notice all of the ways the world is failing in accessibility. I’m fortunate that I can now open doors with my arms/hands, but do you know how many times I look around and there is no wheelchair access button on public doorways? Or how many times the button is broken? Or how there is no place to sit in a store, or the chairs were recently removed when I planned on using them to rest? Not to mention the uneven sidewalks, or aisles that are too narrow, or whatever else? People really do forget disabled people exist.

I will never forget the time I was on the bus and I heard some middle school-sounding kid say to his friend "Stop being so autistic, Sam," using autism as an insult.

And another kid, presumably Sam, said "But I am autistic."

That one... that really stuck out to me. An autistic kid having his own disability thrown at him as an insult. Every time I see someone use autistic as an insult, or "acoustic" and "artistic," I think of Sam.