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white autistics need to remember that. your skin color still gives you privilege. even if you are autistic. whether high mid or low support. speaking, lose speech, semispeaking, or nonspeaking.

your skin color benefits you. in everything you do. gives you better treatment. shield you from worse treatment from being marginalized by both your race and disability.

your survival doesn’t depend on you recognizing the privilege of your skin. many white autistic. like to forget that even though they marginalized by their autism. some more marginalized by their autism than others. that your race doesn’t marginalize you further.

but autistics of color. particicularly Black autistics. nonspeaking Black autistics. Black autistics with high support needs. people of color from a very young age have to be acutely aware of their skin color. and what it means to be that skin color. in this white supremacist society. in order to survive.

some of us recognize it consciously. verbally. others recognize it subconsciously. some don’t understand why, but affected by it every day.

white autistic experience not the same as autistics of color experience.

stop leaving out autistics of color.

so often “(x) is autistic culture” actually means “(x) is white autistic culture” or “(x) is lower support white autistic culture.”

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autism awareness & autism acceptance not either or. not mutually exclusive. can coexist. need coexist.

“there enough awareness for autism already 🙄 we need acceptance”

ok. you aware of high support needs autism? aware what that even means? not “need reminder take meds need remind take shower” “high” support needs autism, but “need full physical help do bADLs lack danger awareness may accidentally hurt self or even kill self without support” high support needs autism? not just higher support needs people who can be independently online do advocacy, but those who need help from others even be online, or those who cannot be online at. all.?

aware of nonverbal nonspeaking people? not just nonverbal nonspeaking people who can write grammatically correct cannot tell apart base on writing. not just nonverbal nonspeaking people who can be online who can advocate online.

aware of nonverbal nonspeaking people who cannot communicate in way that easily understood, either for now, or ever? aware of nonverbal nonspeaking people without functional communication, aware of how without functional communication, how that drastically limit communication, even though behaviors are valid communication? aware of nonverbal nonspeaking people who may never use AAC fluently even with best support?

aware of technically verbal but very limited verbal autistics who may only able say wants & needs but not other things and certainly not online advocacy, “despite being verbal”?

aware of just how much our life depends on caregiver/carer/PCA/etc? aware how vulnerable that make us? aware of abuse from caregivers? aware of caregiver burnout from lack of support for caregivers, & how that impact our care we receive? have you even heard of term respite care? aware of those of us who cannot separate ourselves from caregiver? aware of those of us who cannot participate in autism community without caregiver?

aware of visibly autistic people? aware how we not automatically believed? aware how we often bear blunt of violence because we most easily identified target because we visible? aware visible =/= get support, aware that many those diagnosed severe who now adult so no longer qualify for services under 21 year old, languish in hospitals because nowhere to go? aware how long life saving necessary waitlists are? aware that even to this day parents have to fight school fight day service fight government fight insurance for them give their nonverbal nonspeaking child AAC & be properly taught how use it? actually, are you aware of how properly teach AAC to nonverbal nonspeaking, developmentally delayed child who may or may not have intellectual disability?

actually, aware of autistics with (correctly diagnosed) intellectual disability & how they make up big amount of autistic? aware of institutional systemic & legal impact of mental [r word] right & the human rights abuse justified using r word right? wait, you aware that r word come from old term for intellectual disability, that, actually, still in many laws because no one bothered updating, right? aware of what severe profound ID look like? and aware they real and they still human deserve education deserve life deserve care, yes?

aware of early diagnosis 20 30 or even 10 years ago, not same as now, even less resources & knowledge about autism now? aware that while gender race class 1000% impacted diagnoses, a lot of early diagnosed people early diagnosed because… they die without support unlocked by diagnosis, right? but also, aware that in old times, early diagnosis often did mean doom, not because autism bad or anything, but because severe lack of support & diagnosis can literally bar you from so many things including basic education?

aware that for many people in special education, which impact specific group of autistic people, they not get degree when graduate high school, they just get certificate, which limit their educational & employment opportunities & others?

aware of life saving importance and necessity of masking for autistic of color especially Black autistic people, despite stress inducing traumatic? aware that live in broken system be victim of hate crime & police brutality just as traumatic often even more traumatic than masking? aware that many Black & other parents of color forced to teach their child masking because of this?

are you aware of most marginalized autistic people? aware of leadership of most impacted?

aware you can and need to care about autistic experiences & form of autism you not experience? aware that you can and need to do that without try twist your experience into our experience into our words our community?

aware that advocacy goes beyond about you?

aware that you can’t speak for all autistic? aware that you shouldn’t speak for all autistic?

are you aware of when you need to stop talking & listen & amplify others? aware of when and how to decenter self?

aware that even this long post, barely scratch surface? still so much to say?

[better worded version of original post]

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Covid is affecting neurodivergent people in a horrible way that isn't talked about enough.

And yes, covid is affecting everyone negatively

But neurodivergent people need routine. We need to be able to know whats going on or else we shut down

Online classes for many of us are not not effective because our brain sees were still in our bedroom or kitchen, and therefore it says were not allowed to be productive

We can't focus because were really stressed but because we don't know how to process the emotions that come from covid and the election if were honest, that we show it in the most unhealthy and unproductive ways

I am normally an almost straight A student, but the second I get home, my brain doesn't let me focus on schoolwork because its not the right place

TLDR; covid is affect neurodivergent ppl because the worst thing for us is constantly changing routines and how we do things

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Yep.

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Tips for Studying as a Spoonie

Hey guys, most of you probably don’t know it, but I have a chronic illness called Crohn’s disease. If you don’t know what that or being a “spoonie” is, google it or check out my blog @goingwithmygut. Anyway, it causes some additional struggles with being a good student, so I thought I would share some tips I’ve found to be useful dealing with my illness and staying on top of things!

1. Register with the Disability Support Services at your school

What? You don’t think you have a disability? Well think about this: have you ever needed time out of school for doctors appointments or feeling sick due to your chronic illness, needed additional time at a test because you kept having to stop to run to the bathroom because of your chronic illness, needed a blanket excuse for being late almost every day because your chronic illness makes it hard to be on time, needed a notetaker, or any other additional service? Then think about registering with DSS. They’ll work with you to figure out what accommodations you need and they’re normally super nice and won’t judge you at all. Even if you never use the accommodations set in place, its good to have them in case a worst case scenario situation happens!

2. Make a schedule

Decide what day of the week you do laundry, what day you clean, what times are for studying, when you take your meds, etc. Then try your hardest to stick as close to the schedule as possible. And when you get off schedule? Just skip to wherever you are next on the schedule and don’t worry about it.

3. Don’t study in your bed

This is so, so hard for us, I know. I struggle with bad fatigue at times and my bed is the most comfortable place to study. But I also find I don’t retain as much information when there, and I’m tempted to just drift off into a nap. So I always work from my desk, and only get in my bed when going to sleep. I find a good way to stop the temptation to crawl back into bed is to actually make my bed in the morning. A good thing about working from my desk is normally I’m too lazy to move after sitting there, and if I’m there I’ll usually get some kind of work done.

4. Try to gather all your supplies before sitting down

Like I said, once I’m seated I’m usually not getting up. So I try to grab all books, notebooks, snacks, drinks, etc. I need before I sit down. I keep my meds close too, so when that little alarm goes off all I have to do is reach over to my bookshelf and I’ll take them on time.

5. Stay hydrated and eat well

While I say I don’t move, I do make an effort to get up for meals and to refill my water.  You can’t function properly without the proper fuel. Eating is one of the things I put on my schedule, so when it’s time to eat I try to come to a stopping place and go get some food. When I’m in a flare, I find eating very small amounts many times a day is better than eating meals, so I’ll just get up to get more (healthy) snacks throughout my study time.

6. Don’t sit for TOO long

Especially if you have circulation problems or you have an inflammatory condition. These things increase your risk for blood clots, which trust me, are not fun. Get up and stretch every 30-45 minutes, and move your legs around to get the blood flowing, especially if you have a bad habit of sitting on your legs like I do! 

7. Buy compression/arthritis gloves

If you’re like me and after writing a lot your fingers start to swell, invest in some gloves. The kind I have are fingerless so I can still use my phone when I need to. I don’t know if the copper actually has any useful effects, but they work! (Be aware though, your handwriting will definitely be worse while wearing them. But as long as you can read it, it really doesn’t matter how bad your handwriting is.

8. Type your notes

Sure studies show that you retain information better when you write it, but if you have any kind of joint or circulation problems that is not going to be a good note-taking method for you. I always type all my notes and then when I get back to my dorm, I rewrite them.

9. Find a support group

If you go to a bigger campus, probability-wise it’s highly likely there’s other people like you struggling with the same or similar issues. It’ll be great to get some tips from those people and to just be able to have some companionship. 

10. Don’t be afraid to take some time off, and know your options for when you do

Sometimes it’s just too much. If you have missed excessive amounts of class time, your grades are dropping, and you’re just really struggling with your illness, it’s okay to take some time off from school. Most colleges have a medical dropout form you can do, and your grades for that semester won’t count, it won’t count against you on your transcript, and at some schools they’ll even give you a refund or partial refund. Talk to your registrar office if you start really struggling, and also talk to the people at disability support services. They can provide you with additional resources as well.

Remember your health is more important than your grades! If anyone else has any other useful tips they’ve found, please share!

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So, as a very late follow up to this, I plan on doing a series on my experiences in freshman year and the first quarter of sophomore year. If anyone has suggestions for topics to cover, feel free to send me a message. 

Question

Would anyone be interested in me posting spoonie college content? Like how to approach receiving disability benefits, resources, dealing with administrators, studying with chronic illnesses, etc? 

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Positivity post for mentally ill & disabled people in school who

Fail classes 

Drop classes

Go to a lower level in class

Fail midterms

Can’t do homework

Have frequent breakdowns because of school

Fail finals

Take summer school

Skip days of school

Fail semesters

Push themselves too hard

Take a gap year

Can’t pay attention in class

Need accommodations

Have low GPAs

Give up trying

Drop out of school

Don’t get accepted into college

Academic failure doesn’t mean personal failure! School isn’t everything, and you aren’t a bad person if your grades are low. It isn’t your fault, and you don’t have to feel guilty about it. Your life isn’t ruined. It’ll be okay.

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Me: eats anything

My digestive system

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(¼)  “I was sixteen.  Right in the middle of puberty.  And I couldn’t connect with the world.  I couldn’t understand why I did the things I did.  I’d never look people in the eye.  I always looked down at my shoes.  Other students bullied me.  They’d push me into lockers.  They’d throw things at me.  They’d say: ‘Dina’s not talking.  Dina won’t care.’  Older people would do things to me that were bad.  And they’d say: ‘Don’t tell anyone honey, this is a secret.  This is between you and me.’  I didn’t trust people.  I was really afraid of the world.  Sometimes I’d just want to curl up and disappear.  But that’s when I met Ed.  He was our special education teacher.  He was a big jolly man with nice curly hair.  He always had a messy desk, but he had so many great teaching ideas.  He helped us bake bread and muffins to learn about math.  We made cells from Jell-O.  The neatest thing about Ed was that  he had a learning disability too.  He told us that he was picked on when he was a kid.  And everyone told him that he was going to sit at home and not do anything with his life.  But he became a teacher.  And I thought: ‘If I have a learning disability, and Ed has a learning disability, then that means I can be Ed.’”

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Let us once again give a good old fuck you to Autism $peaks. 

Reasons why autism is great (as a way of saying fuck you to Autism $peaks)

Let’s or reblog/respond with reasons why autism is fucking great and isn’t something to be cured or looked down upon. Like to support.

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Question

Would anyone be interested in me posting spoonie college content? Like how to approach receiving disability benefits, resources, dealing with administrators, studying with chronic illnesses, etc? 

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Okay, so college results came back and I ended up getting into even more schools (Stanford + All six of the Ivys that I applied to). I’ll announce more when I decide on the final one. 

I also want to say thank you to the spoonie community. When I first started having seizures and getting sick, this sense of community on Tumblr helped me find the right path even when things got really hard. 

Guess where your disabled fav is going to college?!?!

Columbia University!!!!!

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🍵🍵🍵🍵

lets talk about how the gender neutral wardrobe is boyish clothes because feminine clothes aren’t considered neutral

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Guess where your disabled fav is going to college?!?!

Columbia University!!!!!

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IBD problems

Me: *eats anything*

Intestines: are you kidding me

Intestines: are you FUCKING KIDDING ME?

Intestines: DO YOU KNOW WHAT YOU'VE JUST DONE??

Me: dude chill I'm just trying to eat--

Intestines: NO. NO. NO.

Intestines: YOU WILL PAY FOR THIS

Me: NOOOOOO