I Feel Like People Forget That Pediatric Illnesses Generally Last Into Adulthood Like…childhood Cancer

Aspie supremacists: autistic people are actually smarter than allistic people.

My friend: *helps me remove the handle of my cane from my mouth after it got stuck*

i just wanna say, as a feeding tube haver, that it's so much more possible to get used to invasive medical devices than you might fear.

i grew up horrified by even being reminded organs exist. i was just so severely grossed out by human anatomy. i got a lot better about it through years of chronic illness, since you just have to get used to it. but that's the baseline i started from originally, in case you are also squeamish and wonder if it's possible for that to change.

so when i needed a feeding tube, i was pretty distressed by the idea. having a tube sticking through a new hole in my abdomen was a seriously horrifying concept, and i couldn't imagine coping with having a stoma (the hole) and caring for it etc. i did it because i needed it to survive but thought i might never get used to it.

and yeah, it freaked me out at first. but eventually i did just get used to it. it just feels normal now. i even feel affection towards it, because it is keeping me alive.

you have any fucking word in the dictionary to describe your abuse. please stop using the one that describes a personality disorder

Gods, the Storm post makes me so unbelievably angry. I think it says something about the community that we're erasing one character's extremely dangerous powers to act like she's being a dick to someone with powers that aren't anywhere near as dangerous just because people don't want her to be right.

Like, this is a crystal-clear example of y'all refusing to listen to people with higher support needs. I'm just saying. The parallels are crystal clear.

"i say the r-slur as reclamation" Ohhh okay then. Goodbye

Heads up: If you consistently CANNOT do tasks unless they are at the “Must Happen Right Now” stage, then you have a disability. 

Most people CHOOSE to put stuff off sometimes, but abled people do not consistently feel UNABLE to complete tasks without threat of consequence.

Maybe it’s an executive dysfunction issue, maybe it’s fatigue, maybe it’s chronic pain– doesn’t matter why, what matters is acknowledging it so that you can move forward. Reach out to resources that are there to help disabled people! Ask for accommodations! They’re there FOR YOU, BECAUSE YOU NEED THEM! Understanding and accepting that you have the limitations you have, and learning what can be done about them, will lead to a much more fulfilling life which you absolutely deserve. 

I just had a migraine visual aura stop as a tiny little speck and in literally a few seconds I would not properly see out of either eyes because the aura filled my vision that fast. I am not exaggerating, I noticed the tiny speck of aura and in the few seconds it took for me to grab my meds from my bag the aura spread to the point that I could not read. I think that's a world record and in related news, I am visiting urgent care as so as I am able to because what the fuck. That should not happen. I think is has something to do with my eye photophobia suddenly getting so much worse so quickly over the last few months. There might be something wrong with my eyes and I'm very worried

I see you disabled people who don't know your family medical history because your family members couldn't/wouldn't/weren't allowed to go to the doctor and never got diagnosed, or don't know your family.

I see you disabled people who didn't know you were disabled growing up, physically or mentally, maybe because your parents didn't have insurance and couldn't afford it/wouldn't take you seriously/didn't think it was a problem because they had it/doctors couldn't figure it out.

I see you disabled people who have bouts of an issue that you grew up with, that are/were infrequent enough that you never really thought about it and dealt with it on your own, and when you have one in front of people who weren't medically neglected, you wonder why they look so horrified as you describe it.

I see you disabled people who didn't/haven't had any amount of care or accommodation for their disability since it started, because you couldn't get diagnosed.

I see you disabled people who grew up thinking everyone had the same problem as you and that it was normal and so you accepted it, because you didn't understand how the human body worked and had no real frame of reference nor the language to ask for help, or the people around you saw it and just ignored it.

I see you disabled people only now understanding that what you experience is abnormal, and that there are things that can be done to help it, make it easier, or at least help you understand yourself better.

I see you disabled people that will never be able to get diagnosed or get the help you need, whether from being poor, lacking insurance, or any number of reasons.

This shit is hard, and there are people who will never quite understand your struggles. It doesn't seem to get talked about as much, but I wish it was. Please know I love you, and you aren't alone.

My cousin is noncompliant diabetic (type one,) but not by choice.

So, she's six. Her parents do not listen to her doctors and will not follow her diet plan. She stays part-time with another one of my cousins and he does his best to follow her diet and make sure her needs are met, but he doesn't have her at all times. There have been a lot of times where she gets dropped off at his house only for him to pretty much immediately need to take her to the ER because she's in ketoacidosis or her blood sugar is extremely off. There was one time where things got so bad she was in the PICU on a ventilator because her lungs stopped working, it was a miracle she survived and he's worried that it will be too late if nothing changes.

I don't know. I'm just worried about her and I'm venting about it. There's no way to help her without trying to go to CPS, but there's no family in the immediate area if she gets removed from the house who can take her and if they don't take her, her parents might retaliate and move somewhere else or stop letting her stay at my cousin's and then she's in even more danger. I wish I knew what to do. She deserves better than this

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.