Raven, he/him, 20, multiple disabled (see pinned for more details.) This is my disability advocacy blog
282 posts
Latest Posts by theravenflies - Page 10
poke hornet nest
my stance on ABA
(my stance on ABA)
as someone with (some) lived experience
most of it is shit.
for long time in past and even now, ABA only service available for a lot autistic people & family.
most of it (< ABA*) still is shit. (*this disclaimer applies to rest of repetition)
heard of more than enough cases of. insurance/school system/etc give pathetic number of hours/sessions for speech, OT, etc for autism but many more hours of ABA. or only cover ABA.
most of it still shit.
some speech & OT & other so called “alternatives to ABA” use behavioral & ABA tactics.
most of it still shit.
for many family, especially those with autistic person diagnosed as “severe” or level 3 and or have extreme behavioral issues etc. their option isn’t “ABA or no ABA.” often, option is “ABA or be labeled as abusive neglectful by government” or “ABA or have child taken away” “you ‘willingly’ enroll in ABA or we take and put them in ABA anyway” or “ABA or lose job.”
most of it still shit.
“ABA or lose job” because school not able or not willing help (because autistic person’s needs “that much”), you keep getting called to pick them up from school, from day care. other people not know how “deal with” your autistic family member, you know how help them a little more but also you sure as hell don’t and are just as lost. so you keep miss work to go pick them up from places that kick them out and you exhausted and you not get sleep because autistic family member needs pretty constant supervision and you not have respite and you not know how help and eventually your job fires you because you keep miss work. and oh did ever mention caring for disabled person extremely expensive? but oh btw there ABA agency you can send autistic family member to for up to 40 hour/week so maybe you can keep job and thus keep roof over head and can still put food on table for family for your autistic family member. oh they also say they may able help with autistic family member behavior so maybe they don’t get kicked out of every necessary service.
most of it still shit.
ABA agencies frequently kick out people deemed too severe or “cannot be helped” or too violent or too many behavioral issues or cause too much harm.
most of it still shit.
in world where may & very often do kill you for seeing you as different thus “threat,” ability mask life saving survival tactic. am talking about POC. am specifically especially talking about Black people. is teaching how mask greater evil than dead killed hatecrimed? sure, no one should have to choose between these two options, but world not care about your morals n your “should”s n your envisioned better future you may or may not be actively help build right now, these people need survive in real world here and now.
most of it still shit.
there (some. a few.) ABA survivors who went thru ABA in past and now who think ABA helped. helped them gain skill. help them prevent harm. some of them don’t see self as abused in ABA or traumatized by ABA. some see it as both abused and helped and grateful for help and hate abuse. some see as both abused and helped and don’t see amount of helped as ever worth abuse.
most of it still shit. (so many were & are abused. n abuse is abuse)
many newer ABA agencies realize ABA heavily criticized n labeled abusive & say they change methods & no longer practice old school ABA & now no longer abusive.
most of it still shit. (many of these agencies still do coercive abusive stuff even if call themselves changed)
some of them maybe truly changed. getting rid of abusive practices, focusing on skill building & adaptive functioning, child-led, instead of drills and forced masking.
most of it still shit.
talk a lot with people who so adamant about “all ABA abuse” “all parents who put child into ABA abused deserve get child taken away” who never was in personal proximity of ABA who. when ask to describe what ABA is in own words, not able to. or give generic response like “abuse & force mask”, but when ask to describe specific methods they do that, not able to. when ask them what discrete trial training and prompting is and what goals may look like and how they write behavioral analysis, never heard of any of them. say listen to ABA survivors, but not able name any individual names. just “oh listen to them online, if you actually listen like me you would know & i wouldn’t need say more so it really your ignorance.” but more often, just get reactionary shut down whole conversation be seen as ableist threat if even be asked first question. how you help advocate for ABA survivors if don’t even know what ABA is? or who ABA survivors? if cannot even talk about ABA? how even fight against your enemy if don’t even know what enemy look like, not able pick out enemy from crowd unless spoon fed?
most of it still shit.
found that. when am talking about ABA. from add nuance to encourage thought provoking questions to even rhetorically ask people to describe ABA. have to repeat emphasize that am not saying ABA all not abusive. even if it first thing i lead with. even if it super clear that am indeed criticizing ABA, just with more grey area and nuances than people used to. lot people will block me from this post just within some paragraphs. lot will block me over saying “most of it still shit” instead of denounce all ABA, when it clear that use of word “most” is deliberate choice n reason of said choice is in every corner of this post. others will finish reading (if even that) and all get out of is repeating “most of it still shit.” made similar posts year(s) ago. and still, find people vague post or explicitly post about me or my post, paint me as evil ABA apologist. whenever come across people who talk about “post where talk about ABA good,” stop and wonder, are they talking about me?
don’t want to talk about ABA because of this. tired, not worth it, often is bad starting point is turn off for people who never seen my posts when have other posts much easier entry point, n start off at bad start may cause them to not listen to me and maybe even other higher support needs and or nonverbal nonspeaking autistics in foreseeable future or ever.
you know, this post started off as “… so you all know i don’t think kindly of ABA right”
throughout write this post, don’t know which part am emphasizing more. the “most of it still shit” part or parts in between.
still. most of it still shit.
I feel like no one in the autism community understands how extroverted autism looks and it makes me feel very alienated. everyone I see is very, very introverted. they don't like social interaction and try to avoid it. I'm very very extroverted and it makes my autism look different.
I want social interaction all the time with everyone. I don't understand when it's not appropriate to talk to someone so I often bother people by talking to them when they don't want to talk. I talk to strangers when it's socially inappropriate. in ABA therapy one of my tasks was not talking to people. In ABA therapy I'd have to constantly be brought back on track because I'd just start having conversations with people. I have a hard time understanding boundaries around social interaction. my friends have had to talk to me about the fact that sometimes they need space because I can't tell when they do. I'm not naturally inclined towards avoiding social interaction I'm drawn towards it.
and I've been isolated from other people because of these things + my other autistic traits. and that's hard when you're naturally inclined towards social interaction. being isolated from society is always hard but there's a certain extra degree of it when you're not satisfied being alone. one of my first memories is of me, playing by myself, at the age of 4ish thinking about how lonely I was.
there's also a ton of feelings of guilt knowing you're annoying to people but not being able to do anything about it. I can't learn how to read when people want to talk, I've tried but it's just not something I'm capable of. I don't want to be annoying to people and I don't want people to end our friendship because they think I'm annoying.
and this isn't all my feelings about it I just wanted to share a glimpse of what it's like being extroverted and autistic because I just don't see many stories from people like me
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
Autism Acceptance Month Fact #20
Applied behavior analysis (ABA) is one of the first and most common interventions recommended for autistic children.
However, most autistic adults say that ABA is traumatic and unethical, treating autistics as a problem that needs to be solved by teaching autistics that they cannot be themselves if they want to be accepted.
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
[ID: An Etsy listing for the shop ShaneIsCreationsLLC with a picture of three badges. The first badge is red and says "stop, planned ignoring in progress, thanks for helping to ignore attention seeking behavior." The second is yellow and says "Need help!" The third is green and says "all clear, OK to approach." The name of the product for sale is "Behavior Support Badge Cards, Communication Cards, Special Education Behavior Management, ABA Therapy Materials, Visual Communication Tools."]
found this on etsy when i was looking for AAC communication cards for myself. i guess the new aba therapy is making autistic people wear badges that tell everyone to ignore them. i wonder how many people would accept a parent or teacher doing this to a neurotypical child? an adult doing this to their partner? a manager doing this to an employee?
Pinned
Storm was right in what she said to Rogue about the cure and I will fight people on this.
My name is Raven, he/him, I'm 20, and this is my disability blog. I am a multiple disabled person who has a bad job, has not yet learned how to drive, certainly can't live on my own, and I write and reblog posts. Please do not mock the spelling, language, grammar, punctuation, or whatever else of me or anyone I reblog here. This blog will focus mostly on autism and autistic voices, but I'll post about a whole spectrum. Mainly the ones listed below
I have autism, light-moderate support needs, medium moderate support needs when accounting for everything else. Hyperempathy, hypersensitivity to my senses, emotion regulation issues, find it near impossible to understand people when they aren't being up-front about what they mean, need reminders for actions of daily living (including eating) but can do them on my own when reminded. Should not be managing my own money. I am fully verbal, but with a lot of speech disability. I get overwhelmed extremely easily and when that happens, I completely freak out. I also have some kinds of cognitive and developmental disabilities but am not intellectually disabled.
I have a lisp, a permanent slur, trouble pronouncing crunchy consonants or words that start with a vowel (can do it, just takes my mouth a second to work,) and I talk very slowly. There's probably more and I just don't know it. Apparently my speech is so bad that the speech therapist in kindergarten said that there was so much wrong with my speech that it couldn't possibly be fixed. Also often tend to speak without thinking, which I can't really help.
I have severe ADHD, mostly inattentive, dyslexia, dysgraphia, articulatory initiation anomia, dyspraxia, TBI from when I was a baby, migraines (all kinds, including ACM,) sensory processing disorder, chronic daily headache, myofascial pain syndrome, chronic fatigue, anxiety, depression, PTSD, OCD, and some other stuff.
Recovering from kleptomania and compulsive lying.
Warning
- I lost a friend to ABA. He's dead because of ABA. There is no ABA positivity here. I will be hating on it.
- I talk about ableism a lot. All posts will be tagged as ableism
- I am transgender
I DO answer both educational and writing questions.
Today's contribution for Disability Pride Month
Obligatory "I don't have this disorder. I'm raising awareness because I'm so fucking sick of women that drink while pregnant bitching about how hard it is being an 'autism mom'". (Autism mom in quotes because a) it's probably not autism and b) the phrase "autism mom" to describe "mom if an autistic kid" is stupid.)
(I'm going to use the term "women" instead of "uterus haver" not to be exclusionary or transphobic. But because I have a severe headache effecting my ability to find words. I am trans-masc. Don't cancel me. I'm not a FART.)
(This is not to demonize people that suffer from alcoholism. Addiction is a very real disability. This is to raise awareness for one of the only known preventable birth defects and hopefully seek help.)
Thank you for the people at @bfpnola discord for checking my post to make sure this doesn't sound eugenics-y.
Fetal Alcohol Spectrum Disorder (FASD)
FASD (previously known as fetal alcohol syndrome) is a disability that can range from mild to severe dependant on how much the mother drank while pregnant. It only takes one glass of wine while pregnant to cause this disorder
I already know what the fuck this is. Why are you talking about it?
Because your only know about the severe cases diagnosed as fetal alcohol syndrome. You THINK you know what it is. But the reclassification has only come up in like... 2003? Fetal alcohol syndrome is like... the far end worst severity of FASD. And since the new information of it being a spectrum disorder, estimates have the disorder as high as 5% of the population (and I really think it's higher based on some information I'm about to share).
Fine. So what is this... spectrum disorder?
Very good! So this disorder is HIGHLY misdiagnosed as autism. So all those boomers bitching about "the rates of autism going up?" Yeah they probably caused it. Symptoms include low body weight, facial differences, poor coordination, difficulty maintaining attention, poor memory, poor emotional regulation, slower development, poor reasoning skills, issues with the heart, bones, and kidneys, shorter height, shorter head size,
I have all of those things. How do I know it's FASD and not the autism?
That's kinda the issue. The only real way you can know is ask your mom if there's ANY possibility she's had a drink while she was pregnant. I can't stress this enough IT ONLY TAKES ONE DRINK. For instance I have a lot of those issues, but my mom was so paranoid she wouldn't even dye her hair or drink coffee. Like there's NO WAY.
Like what do I do about it?
Mostly get your accommodations met and raise awareness. Like people are still actively drinking while pregnant because they are still under the pre-2000 belief that just a couple of drinks are okay. It's really not. Not to mention most women don't know they're pregnant until 4-6 weeks in. So they shouldn't be drinking if they're actively trying to have a child. Because that increases the risk.
What the fuck. People are drinking while pregnant? I don't believe you.
Each of these claims are linked.
30.3% of all women reported drinking alcohol at some time during pregnancy, of which 8.3% reported binge drinking (4+ drinks on one occasion)
According to the Center for Disease Control, one in 10 (10.2%) of pregnant women in the United States reports drinking alcohol in the past 30 days.
Despite clear evidence that primary prevention of FASD is possible if prenatal alcohol exposure is avoided, up to 80 % of women drink during pregnancy, many before pregnancy recognition
What? Women are drinking while pregnant? That's fucked up.
This is not to say people with FASD are lesser than.
But all of this "curing autism" when most of this "autism" is caused by a pregnant person's ability to stop fucking drinking for literally 5 minutes. THESE WOMEN THAT ARE DRINKING WHILE PREGNANT ARE THE ONES CAUSING ALL OF THIS GIVING "AUTISM". IF YOU DRANK WHILE PREGNANT. IF THERE'S EVEN A SLIVER OF A CHANCE THAT YOUR DRANK WHILE PREGNANT? ITS PROBABLY NOT AUTISM. ITS PROBABLY THIS DISORDER.
I'm just really fed up with all of these "autism moms" that also make "wine mom" jokes and making light of literal alcoholism bitching about how hard it is to be an "autism mom" because YOU'RE THE PROBLEM. STOP LAUGHING ABOUT YOUR ALCOHOLISM AND PUT THE DAMN GLASS DOWN.
But my parents are literally autistic
So they don't really know the generational effect of FASD because the new knowledge is so new. But since FASD is literally genetic issues caused by alcohol while you're in the womb. It's assumed that it can cause issues that are passed down.
But like this diagnosis is SO NEW that we really don't know much.
-fae
An unpopular opinion that actually makes sense when I explain why I have it. (Well makes sense if you're not abelist)
I'm not too fond of the "I don't want to be led by the people that ate off of led paint and played in asbestos." Criticism against baby boomers.
Obvious abelism aside (the criticism is implying that baby boomers are less fit to lead because asbestos and lead severely negatively impacts cognitive functioning.)
But both of these mass disabling events are centered around a lack of knowledge that asbestos and lead has such a severe impact on cognitive functioning.
And I don't like that because many people today are also victims of a mass disabling event caused by a lack of information.
Fetal Alcohol Spectrum Disorder.
Up until 2013. The only fetal alcohol diagnosis that existed was Fetal Alcohol Syndrome. And it's caused by severe alcoholism in the pregnant person, and the baby tends to have withdrawals after they're born.
Back then. It was believed if you drank while pregnant, you could still get lucky, and your child can be born "completely fine".
But very recently (I think it was in the early 2000s?) People started saying "No. They're not 'completely fine'. They don't have the classic signs of Fetal Alcohol Syndrome, but they're still impacted by the alcohol on the developing fetus." And it was in 2013 they realized that yes. Even "just one or two glasses" causes Fetal alcohol spectrum disorder.
It's estimated 1 in 10 pregnant women between the ages of 15-41 have had alcohol in the past month and 1 in 5 first graders have fetal alcohol spectrum disorder.
Fetal alcohol syndrome is pretty well known. They have a distinct face shape and learning disability.
But fetal alcohol spectrum disorder can (but doesn't always) have specific facial features. Other symptoms include
Trouble with emotional regulation
Issues learning
Low body weight
Loss of coordination
Issues with empathy
Shorter height
Hyperactivity
Holding attention difficulties
And you're thinking "wow. That sounds a lot like my autism/ADHD diagnosis". Yeah. Since it's not well known in its mild forms. It's often misdiagnosed as autism/ADHD and often times the best way to know is by straight up asking your parents if there's any chance your mom drank while pregnant.
I asked my mom, and she was one of those strict "I didn't even dye my hair while pregnant because I thought the chemicals would seep through my skin and affect the baby."
But like...
Let's not make fun of baby boomers for being disabled due to a lack of knowledge? When a lot of us Millennials and GenZ are probably affected by a similar lack of information.
-fae
The "I don't want the generation that grew up eating lead paint and breathing asbestos making decisions for me" is absolutely wild coming from the generation born during a time when people thought one or two glasses of wine during the first trimester is okay.
Be careful when talking about the older generations' ability to make decisions. If your abelism starts showing, I'm going to be forced to point out a vast majority of Millennials and older GenZ probably have Fetal Alcohol Spectrum Disorder (FASD) because when we were fetuses, our parents thought that fucking up your kid because you decided to drink while pregnant meant Fetal Alcohol Syndrome (FAS).
And we're just learning that there's more mild cases than FAS, creating a need for a new term for the diagnosis. With symptoms like slower learning, hypersensitivity, lack of emotional regulation, and reduced empathy.
If there is any chance that your mom had a drink or two while pregnant? Yeah. It's a fairly new diagnosis too.
1 in 10 pregnant women between 18 and 44 reports drinking alcohol.
FASD was only changed to account for more mild cases of the disorder in 2005.
So yeah. Stop being fucking abelist by shitting on baby boomers for probably having reduced cognition from lead poisoning. It's diving hypocritical when there a greater than zero likelihood that you also have underdeveloped brains because we didn't have the science at the time to say "this is a bad idea".
-fae
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
Less “some people need everything to be explicitly explained” and more “some people can understand things without an explicit explanation”. Why the fuck even is the latter default.
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.
Talking about a discourse that doesn't even exist on Tumblr
On Tumblr, us higher support needs nonverbal/nonspeaking people often had 2 possible scenarios to deal with:
1. People ignore us and our opinion because our writing isn't "proper" English, and they make fun of us or comment on our writing style.
2. People think we're faking because our writing is good.
I couldn't care less about scenario number 2. And luckily I'm not affected by scenario number 1.
But what happens now is that somebody tries to discuss a Twitter discourse that simply doesn't exist here on Tumblr: Nonverbal/nonspeaking people with severe or profound autism and/or severe or profound intellectual disability who use FC to run their blogs.
This isn't happening.
Nobody on here (except maybe 1 person, but even there I'm not sure) has profound autism. Severe yes, there are some. But we don't use FC to run our blogs. Nobody on here (except maybe 1 person) has a profound ID. Severe yeah, maybe. But most people with ID are mild or moderate. And none of them use FC to run their blog.
So what happens now is scenario number 3:
3. People (or rather 1 online troll) think that what we write is facilitated and not our own words.
Especially those of us who have severe autism and/or ID. This is worse than scenario number 1 or 2. Especially because there's no way to disprove it. The better our grammar, the higher the probability that somebody else wrote our posts; at least to this online troll.
So whenever you encounter someone who says that what we write is facilitated and/or written by someone else: Don't believe them. Yes, sometimes people write something for us, but we can always check if we agree with what's been written.
I've heard of the FC problem where caregivers wrote something for the nonverbal/nonspeaking person, and it always was about how great FC was, etc. I think this was on Twitter and on individual blogs somewhere on the internet. But this isn't happening on Tumblr. Nobody with severe autism and/or severe or profound ID uses FC to run their blog on Tumblr.
It's basically "Yelling into the void".
Edit:
Since this post reached people who aren't aware of what was going on lately:
FC is short for Facilitated Communication. It's a method for people who can't speak and struggle greatly with other communication methods, such as writing, signing, or using an AAC device.
There's nothing wrong with people helping someone to run their blog; I, too, sometimes need help to run my blog. There's also nothing wrong with people writing posts or messages for someone. This post was only to inform others that nobody on Tumblr uses FC full time to run their blog. Because this is what this troll believes. She basically complains about something that's not the case.
i think some people forget intellectually disabled people in conversations about disability.
i dont feel included in a lot of conversations because people prioritize how they sound over accessibility. they use words i just can't understand to explain concepts. people find it more important to "sound like an intellectual" than to take a step back and realize a lot of people wont actually understand this.
i want to be included in conversations about activism and justice, but no one makes it accessible. when i ask questions, its taken as "oh my gosh do you really not know what that is!! youre a bad activist/advocate/etc.".
i have tried doing my own research, but thats not accessible to me either. its the same issue. i cant understand what im reading, nothing makes sense. its a cycle im trapped in until someone eventually explains. but by then, im not updated and informed like id like to be.
TLDR: use smaller words!!! please!! i cant understand you!! /lh
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
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