kazandautism - Tumblr blog

[kazandautism]

Have to go off all psych meds for a while. Developed long-QT syndrome (heart doesn’t beat correctly). Doctors think is a side effect of meds. Hope is that it goes away when stop meds.

Very upset about this. Meds help keep meltdowns under control. Help stop harmful stimming. Don’t want to have more meltdowns. Don’t want to hurt self or others. But need heart to work correctly.

[kazandautism]

Saw a post and it really got me thinking.

The post was talking about why don’t lower support needs, higher masking individuals even believe that higher support needs, low masking, “severely autistic” people, exist. And that got me really thinking. Because, I do think they know we exist. I just don’t think they want too.

I don’t think they want to know we exist. They know we exist, but keep us on the back burner. They live in ignorance bliss of us. I have what some people would think of as severe autism. Im nonverbal (although nonverbal later in life. But outside people don’t care about that. They see nonverbal as nonverbal), I’m intellectually disabled, need help in everyday life, etc. but I’m in the middle. I’m moderate support needs. To me, I’m not severely autistic. But to society, I am considered and seen as severely autistic because society doesn’t have the understanding of moderate autism yet. They don’t understand it. And I’ve seen more times than I can count that severe autism doesn’t exist. Not because they don’t believe in severe autism the label itself because it’s “harmful” but because they don’t believe that it’s just caused by autism. They often believe that’s it’s caused by comorbidities. Like ID, or cerebral palsy, or apraxia/dyspraxia, or mobility issues, or genetic conditions, and so on. Although none of this is bad.

They believe that autism itself can’t create severe autism. Which…isn’t true. Before, it was believed that severe autism was the only type of autism. That it was the only type that existed and if you weren’t severely autistic then you weren’t autistic. Then more research happened, then social media happened, and now..white, lower support needs, high masking, late diagnosed individuals are the majority of what’s being centered. And, that isn’t bad. We need awareness of all autism. But when one type of autism gets centered, it becomes a problem. It becomes the new norm. It becomes what everyone expects out of autism now. Which, isn’t true. Autism all of all types and traits exists. Autism of all support needs exists.

When people say severe autism doesn’t exist, they’re ignoring and saying that a BIG percentage of autistic people don’t exist. They’re saying that we aren’t real. That we aren’t on the internet, or in the communities they live in, or in their schools, or whatever. We’re everywhere. Severe autism is still a thing. It isn’t a misdiagnosis. It isn’t from comorbities, although if someone’s autism is more severe from comorbidities then that isn’t bad.

I think a lot of people need to be more aware of severe autism. And not just severe autism like me or my mutuals, or the people you see here on tumblr. But the ones with even MORE severe autism. The ones who live in group homes, residentials, institutions, and so on. The ones who aren’t on the internet. The ones who aren’t here blogging about their lives. We need to be aware of them too. We need to believe they exist, and believe that their autism is real.

Don’t erase severe or profound autism.

[kazandautism]

The other day, I got yet another person telling me to use nonspeaking, since I have literacy skills and can type my words.

I realize the privilege I have over those who are unable, or not allowed. I realize that my experience of becoming nonverbal later in life is a privilege because I’m able to use my skills from before and use them in such a way that makes me able to communicate. That allows me to express my thoughts, feelings, and wants. That allows me to get my words out in a new way. That allows me to express myself in a way that society deems appropriate. I am lucky, and privileged for that. I realize that privilege.

That does not however mean that someone can tell me the language that I can use for myself. That does not mean I cannot use nonverbal for myself. That does not mean that I can’t reclaim it, that I can’t relate to it. That I, as a person unable to speak with an intellectual disability, can’t use a word that was marked for “people like me” people unable to speak who are intellectually disabled.

The history of nonspeaking is still there. It was still made to separate themselves from those who are intellectually and cognitively disabled. The history still rages through the community. Still worded in bold letters saying “nonspeaking doesn’t mean intellectually disabled”

And yet, sometimes it does. And so, I reclaim the word nonverbal. If you want to be separated from me then fine. Be separate from me. Use your word, I’ll use mine. I’ll stay here with my friends, with my intellectually disabled people, with them. Because I can.

The other day, I had a fight with a nonspeaking person. They said they don’t use nonverbal because it implies that you’re intellectually disabled. Which it doesn’t which it doesn’t do. It is another word for those who do not speak all the time. It is not a word just for the intellectually disabled, although some people believe so. That person said that it is ok to separate yourself from those who are intellectually disabled. That it is ok to not want to be associated with them. I don’t think that people realize the harm of separating yourself from a whole group of people. A marginalized group. A group that is constantly talked over, that is constantly thrown under the bus. It is HARMFUL to separate yourself from a whole group of people. They tried to justify it, saying they don’t want to be associated with intellectually disabled people because it’s been assumed that they are intellectually disabled. And fine, no one should assume. But why is it so bad? Why is it so bad to be assumed to be intellectually disabled? Why is it worse than being assumed of having another disorder? Why is it only the quote on quote “bad disorders” that are so terrible. That are outright horrible? Why is that? It is not terrible to be assumed. Simply correct, and move on with your day. Fight against the stigma. Fight against the assumptions. Not the group. Not the group that has been working so hard to be heard and listened too.

Stop fighting against intellectually disabled people. Fight with them, not against them.

[kazandautism]

This autism month please remember those of us who:

need verbal prompting (someone telling us each single, small step to a task) or hands on help for things like showering, getting dressed, cooking simple meals, using a toilet ....

who struggle to go outside alone or cant do it all, not out of fear or no motivation or anything but because we keep getting lost and cant find our way back, because the outside world is like a blurry maze that never becomes more logical no matter how many times we have walked that street, because we need help with mobility aids, or can not understand that cars are dangerous, other people can be dangerous, ...

whose bodies dont listen to what our brains tell it to do. Whose bodies throw things when we didnt tell it to, told it to stop. Who hit our head against the walls while wishing we could stop. Whose bodies freeze when we tell it to move. Not just for a task we are unable to start, but any movement at all. I dont mean when i'm stuck scrolling through my phone thinking about how much i should do that task but cant, I mean when im sitting on the kitchen floor and staring into space for an hour unable to even lift my hand to scratch my nose.

Those of us that will never work a job outside of sheltered workshops, if at all.

Who drool and scream and jump and hum and rock in the waiting room at the doctors office, on public transport, ...

[kazandautism]

See companies like assistiveware (this is just not assistiveware, see it in other AAC companies. This isnt an attack on them) who are doing great in some ways, and bad in others. See them bringing awareness to AAC, taking peoples advice, doing studies, involving the community, and trying so hard.

Yet then see their videos that they feature. See them saying “nonspeaking doesn’t mean non-intelligent” and trying to undermine those with intellectual disability. Like intellectual disability fake, a placebo, a word given by doctors that isn’t true anymore. Which is not the case for the 30% of autistic people who have intellectual disability. Is it true some get misdiagnosed with intellectual disability? Absolutely! And those people need to be heard, but intellectually disabled people also need to be heard. See them saying things like “use nonspeaking, nonverbal bad”. And yes, some prefer the term nonspeaking, and it’s a BIG percentage of people who prefer nonspeaking, but still saying nonverbal bad. Still speaking over those who use nonverbal. Still fighting to make people use the term nonspeaking and argue with anyone who says otherwise.

Assistiveware is good in some ways, and needs reforming in others.

[kazandautism]

For this autism awareness/acceptance month, let’s listen and support nonspeaking, nonverbal, and mute autistic people.

Let’s listen to them, interact with them, and support them. Let’s educate others on their terms that verbal people shouldn’t be using. Let’s uplift their voices. Let’s celebrate and center them. Let’s talk about those who can’t communicate via AAC and alternative communication. Let’s talk about the more marginalized nonspeaking/nonverbal/mute autistic people. The POC nonspeaking/nonverbal/mute people. The trans nonspeaking/nonverbal/mute people. The queer nonspeaking/nonverbal/mute people. The high support needs nonspeaking/nonverbal/mute people.

Let’s center them, talk about them, and celebrate their achievements, accomplishments, and just for being here and being them.

[kazandautism]

Heart thing may not be POTS. Heart definitely goes too fast when standing but now doctors think also have arrhythmia (rhythm of heart not correct).

Don’t know supposed to have appt on 30th of month.

[kazandautism]

Want to talk more about relationship with special interest as level 2 autistic.

Main special interest is Star Wars. Started little over 3 years ago when watched Mandalorian with father.

Only reason that haven’t spent all money on Star Wars stuff is that parents control money. Have no impulse control there.

Will spend hours working on crafts related to Star Wars even when hurting hypermobile joints. Don’t remember breaks exist. Don’t remember that self needs to eat or drink or toilet.

Special interests bring lot of joy and important part of life but also can be harmful. That why it in DSM 5 as symptom.

[kazandautism]

Sorry that disappeared for while. Needed social media break. Brain got too crowded but back now!

[kazandautism]

Autism levels and support needs ARE NOT replacing functioning levels and are “basically the same”. Stop it.

[kazandautism]

i love you people who are congenitally physically disabled and visibly different and who also have intellectual, developmental, learning, and cognitive disabilities, all at the same time

especially if you were treated badly as a child or are treated badly now. especially if people tell you to "grow up"

i'm glad you're here i love you

you always have a place in this world, you don't have to "earn it", you don't have to make yourself small or isolate yourself or stay hidden, if you relate to that. you're alive and you're allowed to be alive and the space you're filling cannot be filled by anyone but you. there is no abled or disabled person who could be a better you because then they wouldn't be you. and i'm glad you're you

[kazandautism]

i don’t find my nervous system to be all that sympathetic, personally

[kazandautism]

today I learned about "thumb book holders" in my search for ways to read giant fantasy paperbacks without injuring myself, and then I realized I could make one out of the 20-year-old polymer clay that I had lying around... so I did. and god DAMN it's more effective than I ever expected, so I thought everyone should know about them. You can get really cheap mass-produced ones but this was fun to make and I'll probably make more ᕕ( ᐛ )ᕗ

[kazandautism]

Think finally on stable dose of antipsychotics! Allowed to go 6 months until next appointment.

Might do post about experience with antipsychotics cause Kaz is on them cause of autism.

[kazandautism]

Dealing with room change really well. Love looking at Grogu picture. Think because picture is of special interest so makes brain happy instead of panic. Also made it so make brain extra happy cause Kaz did that!

Want to make gallery wall of Star Wars art. But slowly. Cause brain panic and overwhelm easy.

Decided to hang up other paint by number that Kaz did of Darth Vader.

[kazandautism]

mannnnn until we all get okay with the idea of people needing other people to get them water/food/etc like. idk we’re just never gonna make it

[kazandautism]

Think sometimes people forget stims not all good.

Sometimes hand flapping and rocking and stimming is problem. Sometimes do need to be stoped

Sometimes rocking includes hitting head on wall which turn into head banging for stim. Sometimes hand flapping turns into hitting wether self or others.

Sometimes using fidget turns into throwing and using to hit others.

In a way, when think of stims only want admit good ones. So when people say stims are harmful get hate and told wrong and to just shut up. But stims not only good.

Stimming can be nice and happy. But stims also include those that hurt self and others. The ones that are painful and dangerous and need intervention.

I rock and hand flap and spin to be happy. But I also head bang and hair pull and pinch and hit in attempt to stim.

Please don’t forget the harmful bad stims when talking about them. Not all good helpful no need stop