what you'll find here: pictures of awesome people, fashion, social justice, history, art, quotes i like, articles i found interesting, fannish stuff, and other random miscellany.
warning: i post a lot of gifs. also, some content may possibly be triggering. i will put a trigger warning on some posts.
i co-mod queerautistics with tal9000, marikunin and gifoverit. you can check it out at http://queerautistics.tumblr.com
Paul Corby, a 23-year old man, has Left Ventricular Noncompaction, a rare congenital disorder that causes the heart muscle to appear spongy and makes it harder for the heart to pump blood throughout the body. As of now, only 20 percent of his blood is being pumped out of his heart and takes 19 medications a day, most of which are to try to stabilize his heart.
The only cure for LVN is transplant.
Paul does not smoke or drink and is an otherwise healthy man. Yet according to a letter from the transplant physician at PennMedicine, Paul has been denied the placement in large part because he is autistic.
Here is the response letter from the doctor:
There is a post on another blog that goes into more detail about the situation.
Here is the link:http://blogs.babble.com/strollerderby/2012/08/07/family-young-man-denied-heart-transplant-because-hes-autistic/I haven’t seen any posts about this going around, and it is very troubling that this man may very well die because of discrimination against autistic people.
So PLEASE sign this and reblog. You might help save a life.
Link to petition: http://www.change.org/petitions/help-my-autistic-son-get-a-life-saving-heart-transplant#
Again PLEASE sign and reblog.
Help save a life.
Signed and boosting.
We’re not operating in my generation, and yet it seems the disability parent community forgets that. So I keep coming back to it in comparisons, which doesn’t necessarily work because times have moved on. Maybe a lot of people are indeed stuck in their own childhoods when trying to apply life to their children. Maybe they just don’t think their children communicate. It’s probably a combination of both lines of thinking.
Example: Cell phones exist. Cell phones exist for discounted family prices. If your child is old enough to choose to go places unsupervised, or with older children or teenagers, then your child should have a cell phone. It doesn’t have to be a tripped-out cell phone, it just has to be a phone where necessary people like you can be spoken to or texted to. This is a basic safety measure in today’s world.
Autism $peaks promotes tracking devices for “wandering” autistic people. From the start, this caused such events as a gay teenager escaping abuse being tracked down, and of course his parents were praised. ”Autistic Wandering” was added to the DSM-IV.
People wander. Doesn’t make them lost, as the saying goes. At any rate, kids will get lost regardless of neurotype. What young child hasn’t wandered off in a mall or a supermarket? Does it worry you sick? Of course it does. But you did it, too. Your kid is probably hiding in clothes racks or eating free samples. It doesn’t need to be seen as pathological. It’s something children naturally do. You wouldn’t consider a baby or a toddler’s lack of danger awareness to be pathological, would you?
Now, I’m terrible at maps. But I’m good with directions if I’ve been to a place before on multiple occasions, even if I haven’t been there in years. We just moved to a new state this summer, and I’ve been lost and my husband and friend and sister-who-visited have been lost because we’ve haven’t been here before. Plus, my friends who have been cartographers say the maps here suck unless you already know where things are. Even I could see the maps here suck unless you already know where things are.
Everyone gets lost. Almost everyone who can leaves without telling people, and I’m not saying they should, especially if they’re younger, but it’s a thing people do. Pay phones used to exist for that purpose. Even in the rural mountainous south, pay phones existed. Pay phones were imperfect, and “nothing” was even more imperfect, and fairly useless for nonverbal people. But that’s not where we are now. We have devices that cost less than tracking devices, devices that people can use to call home. On their own free will.
The tracking devices are promoted mainly because of a belief that the number one death cause of autistic individuals is drowning. Autism $peaks says it accounts for 91% of said deaths. Autism $peaks makes up their statistics. (The 1 in 88 percentile of someone being diagnosed autistic stat comes from the CDC, not A$.)
Children have wandered and, tragically, drowned. The majority have not been autistic. Some have. They were young. When I was a baby, a family friend’s baby and I were outside and he wandered into a pool and drowned. I did not. If you think I have great self-preservation, I was an 8 year old girl who held metal over my head in a lightning storm on a mountain because my brothers jokingly told me to.
Little ones have bad senses of self-preservation on the whole. They’re to be protected. They’re to be equipped for learning better. A tracking device and a wandering diagnosis is so often used to instead stifle teaching and squash any semblances of dependence. Repeated “wanderers” are often described as showing signs of abuse. Hmm, wonder why that is.
My 17 year old daughter and 17 year old niece spent last week unsupervised in Cincinnati. They have cell phones and had a place to stay. This was good fortune for them. I would have worried a lot more than I did if they didn’t have cell phones.
I wouldn’t want either of my nephews to do this, not at this time. I don’t think they have enough adult skills for this type of adventure yet. I agree with my sister that the autistic nephew should have clear identification on him, because he does not pass - and because he has brown skin.
But I’m not going to say never. They can learn. Quite differently from each other, but they can both learn. And heck, the 7 - 17 year old girls wander waaaay more than the teenage boys, and that’s part of why I trust them. They’ve shown the worst that can happen, and it’s not so bad. One of the 3 year olds goes off, too, and we have a swimming pool and used to live near a stream soooooo we’ve kept doors closed and are teaching her to swim.
I am sure most parents love and want what is best for their children. The Rapunzel method isn’t what is best. That’s been proven over and over and over. The Rapunzel method only brings about distrust on both sides.
The wandering issue is one of the methods people use to paint Ari Ne’eman as something he is not. He is not a villain out to let your kids drown. All he really said on the matter was that wandering ought not to be pathologized. He is a lot more like parents than many parents think, in that he wants to help all autistic children as best they as individuals need help. The media intentionally portrays him as a very selfish yuppie who is only looking out for so-called “high-functioning” people, and this caused a lot of folks, myself included, to see him as such. The ploy? To make neurodiversity look wrong, of course. He’s not what people say he is, and the slander he gets is darn cruel, ageist, and untruthful.
(tw: ableism from adjectivelyamber)
THIS IS WHAT AUTISM LOOKS LIKE.
Made up, sexy and thoroughly unimpressed with your bullshit.
Surprised? Then maybe you should stop listening to Autism Speaks and their ilk!
Autism is a huge part of our identity, and we would not be the same without it. However, it is not some huge pitiful disease, and we are people above and beyond it, with it and within it, on it’s good days and bad days - and every single one of us is different.
Try seeing us as people for once.
(Incorporating dramatic make-up into protest art is hard femme, right?)
No, this is what autism looks like FOR YOU— for some people.
Autism is a spectrum disorder, and not all people with autism are high-functioning, make-up-wearing, job-holding individuals. For a lot people with autism, it comes with a lot of debilitating medical problems. Trying to get your kid out of pain and to a place where they are able to function as a member of society is not ableist.Just because you or the other autistics you know are not physically ill and are well enough to hold a job/function in society, does not mean all autistics are so lucky. If you’re happy with yourself and your life, good for you, continue living it however you would like, but the fact is that what we call ‘autism’ varies so widely in what it looks like that you cannot possibly speak for all autistics. Autism is not an identity like being trans or queer is an identity. It can be part of your identity, sure, that’s not for me to judge. However, I can say with certainty that autism is medical.
1) ‘This is what autism looks like for you’. I’m sorry, did I not make that point clear enough? That’s what I’m saying.
2) At which point did I say that I wasn’t physically ill? At which did I say that other autistics weren’t?
3a) Because obviously autistic adults don’t exist. Just people’s kids. Obviously.
3b) I’m not ‘lucky’ by your standards then - I can’t hold a job at this time, or function in society. What the Hell does ‘function in society’ even mean?
4) ‘autism varies so wildly’ THAT’S WHAT I’M SAYING. The whole point of this set of images is to point out that autism is not one disorder that makes everyone autistic person the same. I refer back to my original post ‘every one of us is different’ and ‘try seeing us as people’.
5) Who are you to say what people’s identities are? And that trans* should really have an * after it. I’m queer, I’m autistic, I’m trans* - all are my identities.
6) ‘autism is medical’ LOL when did I ever say it wasn’t?
autism is medical
autism is medical
well fucking obviously
I didn’t do this shit to myself
Didn’t wake up one morning and re-wire my brain for shits and giggles
‘Hey! Why don’t I make my posture so terrible it twists my body up and give myself anxiety and fuck around with my speech centres so it gets really hard for me to speak and be actually understood?’
Okay, maybe I was confused. I’ve just been seeing a lot of “treating autism is ableist! and parent of autistic children are horrible people for trying to change their special snowflake children!” lately, and maybe I misinterpreted this. Let me respond to each of your bullet points.
1) Actually the point wasn’t clear to me as you wrote “THIS IS WHAT AUTISM LOOKS LIKE” in all caps and nothing else. Now, I think you just wanted to say this is what autism can look like. This is going to sound convoluted, but I think our main disagreement here is that I think most people think of autism as Asperger’s- higher functioning and you think that most people think of autism more like the autism I am familiar with- nonverbal, self-injurious and/or aggressive, repetitive behaviors, etc. Is that at all the case here? I reacted to what appeared to me as a generalization/misleading statement (I’m sorry, I don’t know how to word this) “THIS IS WHAT AUTISM LOOKS LIKE” because for my family it looks like a very sick teenager with bruises up and down his arms from biting himself and a huge, distended belly.
2) Okay, I guess you didn’t I just thought that when you said, “It is not some huge pitiful disease,” you were implying that autism is more of an identity/personality quirk than it is a medical condition.
3a) That was not what I was trying to imply, and I’m sorry it came off that way. But frankly, I think it’s a little silly that that’s what you would take away from that sentence. Most of the conversation in the media about autism is about children with autism right now, and that’s because there are more children than adults with autism at the moment (because the rate of diagnosis has been skyrocketing over the last 20+ years).
3b) ‘function in society’ was a poor choice of words here. By that I basically mean 1)Be able to leave the house 2) Be able to enjoy life to some extent and eventually live on your own and get a job. 1 and 2 are both things that my brother struggles with on a daily basis.
4) Okay, you’re right, you did say that much. Also, just curious, what do you have against Autism Speaks and similar organizations? I’m not a fan of autism speaks either, but I have a feeling it’s for different reasons.
5) I guess you’re right here, it’s not my business to judge (as I said earlier) and yes, I should’ve had a * behind that trans*. However, at least for me, having it as part of your identity is like… saying you embrace it— it’s a part of you. And I’m sorry if this offends you in any way—it’s not meant to— I spend a lot of emotional energy trying to separate my little brother from his autism in my own head. So it’s hard for me to accept that autistic is, in itself, an identity. Would you say Lupus, bipolar disorder, or any other kind of illness is an identity as well? Like, I just don’t get it, and that could very well be my problem. I’m not trying to say you’re wrong, I’m just trying to say I don’t understand.
6) Refer back to point number 2)
1) It doesn’t matter what society at large thinks autism looks like the point is that this is a series of pictures about what autism can and does look like. The point is that this picture does not look like either type of autism that society likes to believe exists.
2) Autism is not a disease, nor is it pitiful. It is a disorder.
3a) How is it silly to point out that the focus on kids with autism is wrong, misleading and factually incorrect? There are as many adults with autism as there always had been, the only difference is that they are diagnosed.
3b) Cool, I’m the same. Well, it’s not cool, I’d like to go out, but I do know what your brother goes through. I am autistic. They’re shared experiences.
4) http://goldenheartedrose.tumblr.com/post/17644810872/why-i-am-against-autism-speaks-made-rebloggable-by
5) Yes, I do embrace my autism. It’s a part of me. It’s the part that got me where I am now. It’s the part that actually has me stand any chance of getting a job because it gave me my high English results and ability to remember word for word nearly anything I hear more than three times.
Why are you trying to seperate you brother from his autism? He is autistic, and nothing in the world is going to change that. I appreciate that it’s none of my business, but I cannot understand why you would - or do you only focus on the bad parts of autism?
Autism is not an illness, it’s a disorder. Two different things. Cancer is an illness. Various forms of mental illness are illness. I don’t have cancer, but I do have mental illness. I can’t speak for those with lupus or bipolar, as I don’t have them. I don’t speak for those who’s experiences or identity I do not share. I can speak about autism because I have, I can’t speak about bipolar because I don’t. However, autism is a part of my identity because it impacts every single thing I do - moreso than my gender, or my skills, or my religion, or just about anything. Maybe if I compare to another not-illness I have? I have migraines, and they suck. They do nothing but suck. A lot of time and energy is spent attempting to not get them. However, they do not influence my personality or the way I see the world, other than make me dislike summer. Autism, however, has good points and bad points and made me the person I am today - without migraines I might not worry about making sure I carry pills around in my bag, without autism I would not be who I am.
and autism is a disability, not a disease.
Abjectivelyamber, STFU and listen to teastainedcpt. It’s really gross that you’re missing the point of zir excellent post and spewing ableist bullshit.
- Family member of Autistic person.
- Family member of Autistic person.
- Family member of Autistic Person.
- “Hay guise donate to my autism walk CURE AUTISM NOW!”
- Family member of Autistic person.
- Family member of Autistic person.
- Puzzle piece.
- Puzzle Piece
- CURE AUTISM NOW
- Something actually relevant to Autistic people.
- Puzzle piece
It’s been almost a year and a half since I visited the Jenny McCarthy Body Count. In that time, it looks like over 250 unnecessary vaccine-preventable deaths and over 20,000 illnesses have occurred because of Jenny and her ilk spreading brain-meltingly frustrating misinformation about the safety of vaccines.
Sure, she’s not the only guilty one, but she’s the leader of a dangerous movement that’s still quite active today.
This from a woman whose website has the following headline up today: 21 Benefits of Enzymes and Why You Need Them … oh I dunno, maybe to complete basic biological functions and literally BE ALIVE?!?!
A society that cares about science more will be a society that cares less about Jenny McCarthy. Keep up the good fight, and keep sharing science with your friends. Someone’s life may depend on it.
(TW: ableism, abuse)
A lot of you might have heard about the Judge Rotenberg Center, which abuses disabled people under the guise of “aversive therapy.” The UN has even said that they are torturing people. If Amendment 548 in Massachusetts is passed, aversive therapy will be banned. Please sign this petition if you get a chance.
White privilege is when the white CEO of a “charity” organization can talk about killing her autistic daughter in public and get nothing but money and sympathy thrown at her
but a poor WoC who loves her autistic child has him taken from her
Help a Single Black Mother Get Her Autism Child Back
This is Ani Lacy and her son.
She’s a rather unusual single mother (one may call her a hippie), but her son means the world to her. Her son has autism, so she opted to be a stay at home mom leaving within her means. She also educates her child while trying methods which is not unusual if you’re a freelancer. She’s poor, but not suffering. She decided to leave out of an RV while still maintaining her freedom using freelancing methods.
On May 30, 2012, we posted this story to help her get funding for an RV to go on a roadtrip with her son. However, unknown to us, her home was broken into by Child Protective Services (CPS) and they took her child away. Amazingly, the only people that shows concern for the child well being isn’t even local. While they are related, they are literally hundreds of miles away. They have sent in CPS to look in and finally capture her son while injuring Ani.
We ended up posting this update and we thought this was the end of the story. Then we logged into our account Saturday evening… and noticed A LOT OF NOTES. We figured to follow up on this matter. We reached out to Ani Lacy (under our real name) and this, along with other people’s encouragement, made her return to blogging to tell her side of the story, especially since she did nothing wrong.
We feel that because she’s a poor Woman of Color (WoC) who refuses to partake in the government system that she’s been looked at differently than other mothers. The system does not have the right to take away a child based on survival tactics, especially since CPS may put kids in foster care where they will fare less better. Her child is already suffering underneath the forester parents care.
Here’s how you can help.
Reblog this story (make sure to include all the text) and make a donation to her blog (donation button is on the right side of her blog). Her twitter account is @AniKnits.
Help give this woman and her son a Happy Ending.
![autisticproblems:
Autistic Problem #124: Having to hold eye contact for a whole conversation.
[submitted by http://undercoverturtle.tumblr.com/ ]](http://25.media.tumblr.com/tumblr_m57tptw3Ts1r3mkwoo1_500.png)
Autistic Problem #124: Having to hold eye contact for a whole conversation.
[submitted by http://undercoverturtle.tumblr.com/ ]
What’s wrong with my stimming?
What’s wrong with my withdrawing from social situations?
What’s wrong with my not understanding sarcasm?
What’s wrong with my autism?
What’s wrong with me?
These questions are all differently worded ways of saying the exact same thing; what is wrong with autism, and autistics? I’d like to know. I don’t understand why you hate us. I don’t understand why you want to fix us. Tell me. Please.
