Communicating About Problems Is Hard For Me.

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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

okay now how the fuck do we make friends in the tumblr disabled community T-T

should I make a list like other communities do sometimes?

if you - have ADHD - have had a TBI or brain damage caused by multiple concussions - are plural (origin doesn't matter just please tag sys/course and don't talk to us about it) - have sensory sensitivities - use AAC (we usually don't but need to sometimes) - have high support needs (we don't but explicitly don't want to be friends with only low support needs people) - are neuropunk, madpunk, and/or c-punk (we can only ID wit neuropunk and madpunk as far as we know but want friends across all) - have hyperphantasia (not a disability that I know of but definitely impacts ours)

you should follow and say hello!! you can also do that if you're not on this list lol, these are just specific things we thought of

Hi there! Can you give any advice on how to write someone becoming disabled through a traumatic injury? The Transition phase particularly, the emotional aspect and things to consider and pay attention to? I've been disabled since birth so my journey is completely different to the one my character will have. And while I went through transition phases too they were never going from being abled to disabled but from my condition worsening over the years. I've done research but I figured maybe you have a mod who'd be willing to share some thoughts on this? Thanks!

Hi, you might find this and this post by Mod Faelan useful! You can also check out our #acquired disability tag :-) (smile emoji)!

Mod Sasza

Do not support the "NEXT for Autism" fundraiser on April 30th

NEXT for Autism is endorsed by Autism Speaks, and like Autism Speaks, promotes Applied Behavior Analysis, which forces autistics to hide their behaviors and mask, which is very damaging. NEXT for Autism wants a cure for autism instead of working to create an environment and society where autistics can coexist and thrive alongside everyone else. Focusing on teaching autistics how to hide their more "annoying" behaviors and/or curing them shows that their interest is really in making life easier for caretakers of autistics and for other neurotypicals who might be inconvenienced having to deal with an autistic person out in the wild. Makes sense why they would be linked with Autism Speaks.

There is a change .org petition asking for the fundraiser be cancelled. Sign it here: Petition · Autistic People Have the Right to Exist. Stop the Eugenics Fundraiser. · Change.org

Some of the celebrities involved:

Jimmy Kimmel, Mark Rober, Jon Stewart, Conan O’Brien, Chris Rock, Adam Sandler, Stephen Colbert, John Oliver, Jack Black, Andy Samberg, Paul Rudd, Maya Rudolph, MrBeast, Zach Galifianakis, Mark Hamill, Sarah Silverman, Terry Crews, Marques Brownlee...

Good news! After planned participants Rhett & Link found out about NEXT's connection to Autism Speaks, they have withdrawn from the event.

Please contact the other above celebrities requesting they also withdraw their support. (and thank Rhett & Link for doing the right thing!)

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

"i'm using delusional in the right context, it's not like it's that serious"

DELUSIONAL DISORDER + SCHIZO SPECTRUM DISORDERS + TBI + MANY OTHERS

"calling someone a narcissist isn't ableist it's not a disability"

NARCISSISTIC PERSONALITY DISORDER

"sociopath/psychopath are just adjectives it's not like I'm hurting anyone"

ANTISOCIAL PERSONALITY DISORDER

"saying i'm ocd doesn't affect you it's just the way i act"

MOTHERFUCKING OBSESSIVE COMPULSIVE DISORDER

OBSESSIVE COMPULSIVE PERSONALITY DISORDER

"i'm schizoposting lol it's just a joke"

SCHIZOPHRENIA

SCHIZOID PERSONALITY DISORDER

SCHIZOAFFECTIVE DISORDER

SCHIZOTYPAL PERSONALITY DISORDER

it's never just a joke, it's never an adjective. use a fucking thesaurus

I love the Young Justice Barbara Gordon

[Plain text: I love the Young Justice Barbara Gordon.]

(Keep in mind that I am not paraplegic, just a nerd)

I was never the biggest fan of the original Killing Joke storyline (and I will fight people on this,) but I think Young Justice managed to turn it into a plot that wasn't actually bad. In fact, they did a lot of things really well.

The original storyline, The Killing Joke, gave Barbara Gordon waist-down paralysis after the Joker shot her. The problem with that is that he shot her in the stomach at an extremely close range, the muzzle of the gun literally pressed to the middle of her stomach. At that close a range, depending on the gun and bullet, he probably shattered half of her spinal cord, if not more. The thing about shatter injuries to the spinal cord is that they cause more complications in upper-body mobility than other spinal injuries. If a significant portion of her spinal cord was shattered, Barbara wouldn't be as good as she is at fighting. The damage would cause problems in the rest of her body. And then, of course, everyone is grieving for her and so sad that she'll never walk again and have to retire and I'm pretty sure Batman does something drastic? And that's... really not a plot non-disabled writers should go for.

However, in Young Justice, it's completely different. Barbara saw Cassandra Cain, who was unidentifiable but very small so obviously a young child, going after Joker with a sword, so she chose to get between the child and her target to prevent Cass from doing something that could never be taken back. She took the slash, which hit her lower back, just above her tailbone, so that it didn't go to Joker's neck. And the other characters handled it well. Nightwing was a bit panicked, of course, but that's because Barabara had a severe injury that was life-threatening. Batman, knowing that Nightwing had called for a medical evacuation and that he was handling first aid, took the sword from a terrified Cassandra ever so gently, and put a comforting hand on her shoulder. Cassandra was horrified, of course, but it was because she'd just hurt someone who wasn't her target severely, not because Barbara was now disabled. And then Barbara tells her that she didn't do it to save Joker, she did it to save Cass. And Cass is horrified and probably hates herself in the moment, sure, but that memory later becomes something that strengthens her. Cass gets kidnapped in that episode and remembering that during her captivity helps her. It's a memory of the woman who would later become her older sister and one of her best friends. She knows that Barbara, the woman who has done so much for her, will help her. She won't rest until Cassandra is safe, even if it means coming after her herself.

I also really like how the plot handled this. Number one, we don't know off the bat why Barb is paralyzed, it doesn't come up until it's relevant, she's just paralyzed. And when it does come up, it's not a tragedy, it's Barbara risking her life to save the soul of a child who didn't understand the moral consequences of what she was about to do. She chose to do that and she would do it again. That's a really interesting way of subverting the exhausted "disabled by an accident" trope, because yes, it was an accident on Cass's part, but Barbara knew she was probably going to get badly hurt. It's similar to a character running into a burning building to save someone else. They accept the potential consequences because they couldn't live with themselves if they didn't help. She took the risk, she knew what could happen, which is so much better than her having no choice and being shot. It's far less tired an idea and a very interesting spin that I quite like.

Going back to the injury, let's get in-depth about that. I mentioned how a shatter would impact her upper body, too. But the way she was injured in Young Justice, which was probably severing the connection between two very low vertebrae or possibly cutting a vertebra itself if Cass put enough force behind it, makes sense. It wouldn't have as much a major impact on her upper body, so it makes sense that she can throw the person who snuck up on her like it's easy. Barbara can be an excellent hand-to-hand fighter and it's not unexplainable. We don't see her exercising in her chair, likely because she has the wrong chair for both exercising and her disability (she has a hospital-type wheelchair instead of a lightweight chair, which is, I think, just poor research,) but she clearly still does because she's still extremely good.

Also, I like how there's no cure plot. The show might still be ongoing so I don't know if that'll last, but for now, she hasn't been cured and shows no desire to be. The comics would occasionally have her paralysis cured and thank the gods they didn't go with that, even with a character (we won't get into the absolute disaster of Violet Harper here) who could, in theory, heal her, and I love that. For some reason writers are afraid of keeping their disabled characters disabled, so I'm surprised and glad they didn't take the easy out.

Finally, I love that Oracle is still able to do field work with special equipment. Does she go onto the actual field herself? No, not really. But she uses small drones and other things to help out, such as the tiny drone that gave Cass a lock pick or her hacking into systems to protect her allies from security measures. Babs doesn't need to stop being a superhero because she's disabled but also doesn't suddenly use a mech or something, she just finds ways to work with her new circumstances to keep doing what she wants to do, just in a different way. She's still a massive threat to her enemies, just in a different way, utilizing talents she already had (Barbara is extremely intelligent and very creative) to continue to help people.

TL;DR, I really, really like how Young Justice handled Barbara Gordon. If we must have more characters disabled in accidents, this is a very good way to do that.

a way you can help some i/dd and cognitively disabled people is by clarifying what kind of response you want if you're not open to any kind of response

like, specifying that you want comfort or advice or solidarity or some other kind of acknowledgement, or if you want just an emoji or to change the subject, or if you want to close the conversation, like

just fucking communicate. give us feedback. tell us what you want

if you need clarification ask for it. if you need us to rephrase ask for it

we're communicating or verbalizing the only way we know how. and if you're not like this you can't even begin to scrape the fucking surface of understanding how hard it is

My sister’s blind dog loves fetch

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