gwydion-aacblog - Tumblr blog

[gwydion-aacblog]

I've reached 35 responses! They're very interesting, but the sample size is still small, and I don't think it's at all representative of the Tumblr autism community. If I can't reach at least 100 responses, I don't think I'll be able to analyze Tumblr community views on support needs in depth. I'll still post descriptive statistics for the overall sample, but I won't have the statistical power to do anything else.

I'd really appreciate if everyone could help by taking the survey and reblogging this post to their followers!

As a reminder, the survey is meant to understand how people use support needs labels. For example, what makes someone low support needs and not moderate support needs? The survey also helps show what the community is like in general in terms of demographics and experiences!

A summary of the current survey results are under the Read More. Again, especially if a community that you're in is under-represented, please help by spreading the survey link! I'd especially love to hear from more people AMAB, racial/ethnic minorities, people who are not yet diagnosed or were diagnosed as adults, and higher support needs individuals!

Age: Most participants are young; 60% are under age 25%, and 20% are under 18.

Gender: Over half of the sample is AFAB nonbinary, almost 1/3 is trans men, and almost all of the remainder (14%) is cis women. Only 2 people who are AMAB have taken the survey.

Race/Ethnicity: Non-Hispanic White people are very over-represented, making up 82% of the sample.

Diagnosis: 57% are professionally diagnosed, 20% are informally or soft-diagnosed, and 14% are seeking a diagnosis. Only 9% are neither diagnosed nor seeking a diagnosis.

The most common diagnoses are ASD with no level (33%), level 1 ASD (25%), and "mild autism" (13%).

16% were diagnosed before age 8, 24% between ages 9 and 15, 32% between ages 16 and 18, 12% between ages 19 and 25, and 16% over age 25.

Autism Support Needs: The most common self-identified support needs label is "low-moderate" (43%), followed by low (23%) and moderate (14%). Most would benefit from but do not need weekly support (31%), only need accommodations and mental health support (17%), or rarely need any support (6%).

Autism Symptoms: On a severity scale of 0 (not applicable) to 3 (severe), the average is 1.7 overall, 1.8 socially, and 1.7 for restricted-repetitive behaviors. The most severe symptom is sensory issues (2.1), and the least severe are nonverbal communication and stimming (both 1.5).

83% are fully verbal, and 97% have no intellectual disability.

38% can mask well enough to seem "off" but not necessarily autistic. 21% can't mask well or for long.

Most experience shutdowns (94%), difficulties with interoception (80%), meltdowns (71%), alexithymia (71%), echolalia (69%), and autistic mutism (66%). Very few experience psychosis (14%) or catatonia (11%).

Self-Diagnosis: 20% think it's always fine to self-diagnose autism, 29% think it's almost always fine, 31% think it's only okay if an assessment is inaccessible, 71% think it needs to be done carefully, and 11% think it's okay to suspect but not self-diagnose.

15% think it's always fine to self-diagnose autism DSM-5 levels (including if the person has been told they don't have autism), 15% think it's fine as long as autism hasn't been ruled out, 21% think it's almost always fine, 18% think it's only okay if an assessment is inaccessible, 36% think it needs to be done carefully, and 36% think it's okay to suspect but not self-diagnose.

26% think it's always fine to self-diagnose autism support needs labels (including if the person has been told they don't have autism), 29% think it's fine as long as autism hasn't been ruled out, 37% think it's almost always fine, 29% think it's only okay if an assessment is inaccessible, 43% think it needs to be done carefully, and 6% think it's okay to suspect but not self-diagnose.

Disability: 71% feel disabled by autism, 17% feel disabled by another condition but not autism, and 11% are unsure.

Comorbidities: The most common mental health comorbidities are anxiety (68%), ADHD (62%), and depression (56%).

The least common mental health disorders are schizophrenia spectrum disorders (0%), bipolar disorders (3%), tic disorders (6%), substance use disorders (6%), personality disorder (9%), and OCD (9%).

The most common physical health comorbidities are gastrointestinal issues (29%), connective tissue disorders (29%), autoimmune disorders (24%), neurological disorders or injuries (24%), and hearing/vision loss (24%). All others are below 20%.

Overall Support Needs: When considering comorbidities, the most common self-identified support needs label is moderate (37%), followed by low-moderate (31%) and low (17%).

[gwydion-aacblog]

Are you an advocate for censorship?

is this because i said not to use the r slur

[gwydion-aacblog]

Reminder from someone with actual literal brain damage from a brain injury to stop fucking using "brain damage" and "brain injuries" as a means of describing someone whose opinions you don't like or deem as stupid.

It's ableist and offensive as fuck, and for some reason a lot of leftist people think it's okay to use. I've seen posts replying to right wing racists calling them "brain damaged if you believe this" and "do you have a brain injury? do you not understand X?". Just now I saw a beautiful post about fat people throughout history that was absolutely ruined by opening with "How do we break it to boomers with actual brain damage and nostalgic brainrot, and the 'tradwife' thirsting Andrew Tate fans..." before continuing to say that fat people existed throughout history.

Brain damage does not make you racist. A brain injury doesn't make you stupid, or fatphobic, or unaware of history and politics. Stop fucking using my disability as a catch all to describe people you think are shitty. Y'all use it like it's a replacement for how people used to use the R-slur, which shows you learned absolutely nothing about why the R-slur was wrong to use and decided to throw in other disabilities instead. Fuck off and stop doing it.

(And don't do it with other disabilities either, because I know y'all do.)

I know a lot of people with brain injuries. They're smart, and funny, and compassionate. They learn about the world and care about social issues and wish they could go to protests if their disability won't allow them to. Are there right wing people with brain injuries? Sure, absolutely. But they are not right wing because they have a brain injury, and using any disability as an insult is still fucking ableist.

Tldr - stop using brain damage and brain injury as an insult. It's ableist and incredibly offensive.

Love, your local brain injured/brain damaged pal

[gwydion-aacblog]

not nice to see … so much agere on this . remember these things permanent for many people too .

An adult in a diaper isn't less of an adult. An adult who needs the help of a caregiver isn't less of an adult. An adult who can't speak isn't less of an adult. An adult who can't work or study isn't less of an adult. An adult who can't live independently isn't less of an adult. Adulthood is about your amount of years spent alive, not about your skills and abilities

[gwydion-aacblog]

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

[gwydion-aacblog]

you can say over and over that disabled people can have sex. but when you think it, make sure you are also thinking of those of us who are visibly disabled. people who cannot move the way bodies "should." people who struggle to speak can still request sex, with AAC, with body language, with what speech we have. people with medical devices implanted in their bodies, housebound and bed bound people. people with intellectual and developmental disabilities. "disabled people can have sex" does not just mean invisibly disabled people, or people who meet able bodied/neurotypical standards of independence

[gwydion-aacblog]

I just politely asked my carer to please make my dinner and her exact words as she walked towards the kitchen were “ugh, good God *big overdramatic sigh*”

Heaven forbid a I want to eat.

[gwydion-aacblog]

something I've been thinking about for a while. destigmatizing menstruation should go hand in hand with destigmatizing incontinence and diapers tbh

[gwydion-aacblog]

know someone who enjoys horror stories? share this one! it's true!

hahahahahahahahahaha aarrggghhhhhhhhhh 3,000,000 deaths due to COVID-19 last year. Globally. Three million. Case rates higher than 90% of the rest of the pandemic. The reason people are still worried about COVID is because it has a way of quietly fucking up your body. And the risk is cumulative.

I'm going to say that again: the risk is cumulative.

It's not just that a lot of people get bad long-term effects from it. One in seven or so? Enough that it's kind of the Russian Roulette of diseases. It's also that the more times you get it, the higher that risk becomes. Like if each time you survived Russian Roulette, the empty chamber was removed from the gun entirely. The worst part is that, psychologically, we have the absolute opposite reaction. If we survive something with no ill effects, we assume it's pretty safe. It is really, really hard to override that sense of, "Ok, well, I got it and now I probably have a lot of immunity and also it wasn't that bad." It is not a respiratory disease. Airborne, yes. Respiratory disease, no: not a cold, not a flu, not RSV.

Like measles (or maybe chickenpox?), it starts with respiratory symptoms. And then it moves to other parts of your body. It seems to target the lungs, the digestive system, the heart, and the brain the most.

It also hits the immune system really hard - a lot of people are suddenly more susceptible to completely unrelated viruses. People get brain fog, migraines, forget things they used to know.

(I really, really hate that it can cross the blood-brain barrier. NOTHING SHOULD EVER CROSS THE BLOOD-BRAIN BARRIER IT IS THERE FOR A REASON.) Anecdotal examples of this shit are horrifying. I've seen people talk about coworkers who've had COVID five or more times, and now their work... just often doesn't make sense? They send emails that say things like, "Sorry, I didn't mean Los Angeles, I meant Los Angeles."

Or they insist they've never heard of some project that they were actually in charge of a year or two before.

Or their work is just kind of falling apart, and they don't seem to be aware of it.

People talk about how they don't want to get the person in trouble, so their team just works around it. Or they describe neighbors and relatives who had COVID repeatedly, were nearly hospitalized, talked about how incredibly sick they felt at the time... and now swear they've only had it once and it wasn't bad, they barely even noticed it.

(As someone who lived with severe dissociation for most of my life, this is a genuinely terrifying idea to me. I've already spent my whole life being like, "but what if I told them that already? but what if I did do that? what if that did happen to me and I just don't remember?") One of its known effects in the brain is to increase impulsivity and risk-taking, which is real fucking convenient honestly. What a fantastic fucking mutation. So happy for it on that one. Yes, please make it seem less important to wear a mask and get vaccinated. I'm not screaming internally at all now.

I saw a tweet from someone last year whose family hadn't had COVID yet, who were still masking in public, including school.

She said that her son was no kind of an athlete. Solidly bottom middle of the pack in gym.

And suddenly, this year, he was absolutely blowing past all the other kids who had to run the mile. He wasn't running any faster. His times weren't fantastic or anything. It's just that the rest of the kids were worse than him now. For some reason. I think about that a lot. (Like my incredibly active six-year-old getting a cold, and suddenly developing post-viral asthma that looked like pneumonia.

He went back to school the day before yesterday, after being home for a month and using preventative inhalers for almost week.

He told me that it was GREAT - except that he couldn't run as much at recess, because he immediately got really tired. Like how I went outside with him to do some yard work and felt like my body couldn't figure out how to increase breathing and heart rate.

I wasn't physically out of breath, but I felt like I was out of breath. That COVID feeling people describe, of "I'm not getting enough air." Except that I didn't have that problem when I had COVID.) Some people don't observe any long (or medium) term side effects after they have it.

But researchers have found viral reservoirs of COVID-19 in everyone they've studied who had it.

It just seems to hang out, dormant, for... well, longer than we've had an opportunity to observe it, so far.

(I definitely watched that literal horror movie. I think that's an entire genre. The alien dormant under ice in the Arctic.)

(oh hey I don't like that either!!!!!!!!!) All of which is to explain why we should still care about avoiding it, and how it manages to still cause excess deaths. Measuring excess deaths has been a standard tool in public health for a long time.

We know how many people usually die from all different causes, every year. So we can tell if, for example, deaths from heart disease have gone way up in the past three years, and look for reasons. Those are excess deaths: deaths that, four years ago, would not have happened. During the pandemic, excess death rates have been a really important tool. For all sorts of reasons. Like, sometimes people die from COVID without ever getting tested, and the official cause is listed as something else because nobody knows they had COVID. But also, people are dying from cardiovascular illness much younger now.

People are having strokes and heart attacks younger, and more often, than they did before the pandemic started. COVID causes a lot of problems. And some of those problems kill people. And some of them make it easier for other things to kill us. Lung damage from COVID leading to lungs collapsing, or to pneumonia, or to a pulmonary embolism, for example. The Economist built a machine-learning model with a 95% confidence interval that gauges excess death statistics around the world, to tell them what the true toll of the ongoing COVID pandemic has been so far.

Total excess deaths globally in 2023: Three million.

3,000,000.

Official COVID-19 deaths globally so far: Seven million. 7,000,000. Total excess deaths during COVID so far: Thirty-five point two million. 35,200,000.

Five times as many.

That's bad. I don't like that at all. I'm glad last year was less than a tenth of that. I'm not particularly confident about that continuing, though, because last year we started a period of really high COVID transmission. Case rates higher than 90% of the rest of the pandemic. Here's their data, and charts you can play with, and links to detailed information on how they did all of this:

Here's a non-paywalled link to it:

https://archive.vn/2024.01.26-012536/https://www.economist.com/graphic-detail/coronavirus-excess-deaths-estimates

Oh: here's a link to where you can buy comfy, effective N95 masks in all sizes:

Those ones are about a buck each after shipping - about $30 for a box of 30. They also have sample packs for a dollar, so you can try a couple of different sizes and styles.

You can wear an N95 mask for about 40 total hours before the effectiveness really drops, so that's like a dollar for a week of wear.

They're also family-owned and have cat-shaped masks and I really love them. These ones are cuter and in a much wider range of colors, prints, and styles, but they're also more expensive; they range from $1.80 to $3 for a mask. ($18-$30 for a box of ten.)

[gwydion-aacblog]

i just feel like so many are like, dismissive and do not comprehend like, really significant intellectual, developmental, and cognitive disability

they do this with every disability, they really don't take any disability seriously or comprehend what it means to be disabled, why it means you can't do something, why you can't just "overcome" it

but with i/dd and cognitive disability specifically i feel like people just do not comprehend the concept of being genuinely, actually unaware or being unable to understand a specific thing no matter what or not being able to think in a certain way or not being able to learn

they think everyone can learn social skills and anyone who can't isn't trying hard enough. they think anyone can learn or read anything and that people who can't do it at all or who struggle with it are "anti intellectual". they think people who just say and do things because their brain just isn't working correctly do so carelessly and maliciously and not because their brain is like, literally glitching. they think people who have tunnel vision where they're the only thing who exists are just selfish and that they're purposely excluding other people and their surroundings, not that their brain doesn't "see" them, or they struggle with theory of mind, or both. they think people with rigid thinking are choosing to be unable to deviate, or that they're spoiled.

like they even think if you walk off of a fucking curb or something it's because you weren't watching where you were going, not because you genuinely can't. if you walk into a road it's because you're careless and not because your brain doesn't know what "road" is and what it means that a road is a road and that there are cars on a road and cars mean danger and danger means injury or death.

it frustrates me so fucking badly

this post is aimed at abled people

but if you get upset at people for telling you you can do something you can't, you just aren't trying hard enough, even if they only told you this when you were a child, why the fuck do you feel like it's appropriate to say it to other people

just because you don't struggle with something, or can do something someone else can't, doesn't mean people who aren't like you are just using their disability as an excuse or unmotivated/lazy or insecure or not trying hard enough

[gwydion-aacblog]

I can't go into public without some child staring at me, horrified that I have a tube sticking out of my face. I've had grown adults tell me "bless you for going out in public" and mean it as a compliment. People have stopped me in the grocery store and said "Dont you just hate it?" and they're talking about my every day reality. Everyone feels entitled to my private life and Everyone feels like they know me because they've seen me in public before. (And sometimes those people *haven't* seen me, they've seen someone else with respiratory equipment and thought it was me)

Apparently, that means I have it easier because people can see me struggle.

[gwydion-aacblog]

every time that gwydion type or 3 or 4 lines in AAC - especially in healthcare places - people will say things " oh wow ! that is whole book ! "

but if could say those lines with voice , people would not have comments like that . so , so frustrate . do not do this to AAC users … some AAC users might want praise and friendly comments for write lots , but do not just assume all do .

[gwydion-aacblog]

How to not derail a physically disabled person's post -guide for abled neurodivergents

Hey this is a huge problem and a ton of my and other peoples posts about physical disabilities have been getting overrun with comments making it about mental illness and completely derailing the post.

Here's some things to think about before adding a comment/reply onto a physically disabled person's post:

Is the person talking about disabilities in general? Or are they only talking about physical disabilities?

Do they say specifically that neurodivergent people are welcome to comment? Or do they have a banner or tag that says DO NOT DERAIL

Check the comments and reblogs that are currently there. Are they already overrun with people making the same points you are? Are physically disabled voices getting drowned out?

Is the post tagged with cripplepunk only? (Aka not neuropunk or madpunk)

What is your addition adding to the conversation? How is it related to the original post? Is it shifting the conversation or generalizing it?

Did you actually read and internalize the post or did you only focus on adding your point of view.

Who is the intended audience for the post? Is it you? Are you listening or arguing?

Are you using their language for yourself?

Could the addition stand on its own as a separate post? (If so it probably should)

Think about how you would feel if someone did that to your post and everyone only talked about their problems and ignored your original statement. Think about how angry you'd be if they then said "you're not allowed to get mad cuz I said I wasn't derailing! I love you people!"

Also these questions can and should apply to other posts made by people who are frequently talked over (people of color, fat people, etc.) No your adhd autism does not count. There is a long history on this site of neurodivergent people talking over and taking over entire disability spaces and the problem persists today. This problem is why cripplepunk was created in the first place.

Yes mental illness deserves to be talked about. I'm proudly neurodivergent and often reblog posts from neurodivergent blogs. But you are able to make your own posts, you don't need to take over ours, especially when we are specifically pointing out how our physical disabilities differ from mental disabilities.

Also respect when someone asks you to please delete your addition. Mistakes happen what matters is how you respond to them. Learn from it and move on. Don't cry about the meanie cripples "censoring" you.

[gwydion-aacblog]

Covid Update, USA, late December 2023: Buckle up, folks.

Takeaway from his (very informative) thread:

Wastewater counts are obscenely high right now, belying the official case numbers. Considering that we've stopped collecting or reporting most COVID data, wastewater is the best way we have to judge the actual infection rate now.

We are currently seeing ten million new infections a week, and can expect that to greatly increase within the next three weeks.

If you've stopped masking, please start again, for your own safety and the safety of your community. Many hospital systems are already trending toward being overwhelmed right now; let's do what we can to lighten their burden.

Avoid unnecessary gatherings where possible.

Ventilate your spaces well (this is a good time to build that Corsi-Rosenthal box you were thinking about! I made one, it's great).

And just from me, personally--now's a good time to reevaluate casual habits. I've been careless, again, about touching my face. Time for me to knock it off!

This is a period where we need to act with more care. Not a time to panic, but a time to be more cautious.

[gwydion-aacblog]

teaching yourself how to deal with mildly annoying inconveniences is imo an essential part of treating the disabled people around you with compassion and no i'm not kidding

[gwydion-aacblog]

are you okay? you’ve been gone for a little while

life changes , injury , stress , tired . 💚

[gwydion-aacblog]

if can say also , gwydion do personally feel benefit from learn and talk in ( open ) deaf and HoH community places .

can not understand what people say very well , but also miss and mistake many other things in world , not just words . that is something many in APD community not even realise exist , so … no , not feel like able take part in APD community , let alone hearing world .

people should not treat all community places as " place to learn " , but some do open for that if respectful , and for things like APD .

will always be different thoughts , opinions , and rules … but sometimes struggle with same things , and benefit from same things , even if reasons different . so if community place make self open , not bad thing to look , learn , and talk about common ground .

I would consider people with auditory processing disorder HOH if they self-describe that way.

We also have an auditory processing disorder, and for a long while we thought everything could be blamed on that. We only got confirmation otherwise with a free hearing test through university.

We couldn’t communicate with hearing people when they spoke aloud. We couldn’t consume media without subtitles. Learning ASL and finding other people with similar issues felt a lot like meeting other trans people. If we didn’t fall below average on that hearing test, we would still be Deaf if we used sign.

I don’t see it as akin to physical vs nonphysical disabilities because it’s the same needs with the same symptoms. More like us as a transmasc meeting a transfem. So different, still the same.

Deaf has always been an umbrella term, even if not every Deaf person agrees. A Deaf person with ear damage is as Deaf as one with brain differences. A Deaf person who gets cochlear implants is still Deaf.

It is the ability to communicate amongst ourselves and the inability to communicate with others that makes us a community, that makes us Deaf. So they, too, are Deaf if they can communicate with us and not others. We need not be the same to accept each other.