May I have your attention please
- Holding down a job is not a measure of value.
- Attending school is not a measure of value.
- Whether or not you can “contribute” to society is not a measure of whether or not your life is valuable and worth preserving.
These are standards held up by a society values money and production over everything else. If you think life has any less value or worth because of an inability to do any of the above you re fucking wrong.
"So You Want To Work With Autistic Kids" Primer
Hi everyone, so I made a post a few days ago about putting together a list of links for my lab partner, who wants to work with autistic children. This is what I’ve come up with. Admittedly it’s more of an “introduction to neurodiversity advocacy” primer, but I think that should come with the job, really. If you’ve got any suggestions, do let me know!
(And sorry for the odd formatting- I can’t for the life of me figure out how to make nesting bullets, even when I enter the html)
TW: mentions (but no discussion in this post) of ableism, neglect, assault, murder, abuse, ABA. All links come with their own warnings unless otherwise noted. If you find one that doesn’t, or is broken, please tell me.
About Autism Speaks:
1. About autism
2. What it really means when someone says they’re autistic
3. Diagnostic criteria suggested by autistic people (more on what it’s like to be autistic)
4. Yes, That Too’s tips for parents
5. What I Wish I’d Been Made Aware of When My Daughter Was Diagnosed With Autism
6. Tantrums vs meltdowns and shutdowns
8. Not an epidemic
9. Empathy and the Empath Quotient Test
10. Functioning labels
11. Person-first language
“Classics” and others widely circulated among autistic self-advocates:
1. The Obsessive Joy of Autism
2. Don’t Mourn For Us
3. Quiet Hands and Grabbers (TW: ableism, abuse, R-slur in Grabbers)
4. The Cost of Compliance is Unreasonable (TW for teachers forcing a child to do something they don’t want to do, huge TW for link within post)
- Similar, but not so widely spread, is The Influence of Others, a parent’s reaction to “Grabbers” (TW: ableism, abuse)
1. An Analogy (TW: trying to force someone out of autistic behavior)
2. On forcing eye contact
3. Doing “Nothing”
4. The Good, The Bad, and The Ugly: my Assessment of Our Experience with ABA
5. More of Rose’s thoughts
- The post linked in the above (she changed her blog title, so “caffeinatedaspie” URL links don’t work)
6. An Open Letter to Parents Considering Intensive Behavioral Therapy for Their Child With Autism (TW: detailed descriptions of ABA methods, child’s PTSD)
- And Part Two (the link kind of gets lost at the bottom, so I put it here too)
- As disgusting as it is, a lot of people dismiss autistic voices on the topic of harmful therapy in favor of parents’ and child development professionals’ voices. The writers of this are both, so it may be useful to convince people with that attitude
Ableism (important to understand the prejudice autistic people face): (TW for ableism, neglect, assault, murder on this entire section)
1. Murders by parents and caregivers
2. Commentary on other people’s dismissal of murders
3. Transplant discrimination
4. Medical discrimination
5. The Pillow Angel (not autism, cerebral palsy, but important to recognize what people will do out of “concern” to a non-speaking person)
- And the video for it
Autistic Self Advocacy Network (ASAN):
1. The Caffeinated Autistic (also goldenheartedrose on tumblr)
2. Yes, That Too (also yesthattoo on tumblr)
3. Autistic Hoya
4. Just Stimming
5. Radical Neurodivergence Speaking
6. Tiny Grace Notes (AKA Ask an Autistic)
8. The Thinking Person’s Guide to Autism
Things recommended by people I follow (but that I haven’t really looked at personally):
1. The ‘askanautistic’ tag on tumblr- tag your post with this and autistic people who are willing to educate others will see your question
“Autistic Americans and individuals with other disabilities are no more likely to commit violent crime than non-disabled people. In fact, people with disabilities of all kinds, including autism, are vastly more likely to be the victims of violent crime than the perpetrators. Should the shooter in today’s shooting prove to in fact be diagnosed on the autism spectrum or with another disability, the millions of Americans with disabilities should be no more implicated in his actions than the non-disabled population is responsible for those of non-disabled shooters. ”—ASAN Statement on Media Reports Regarding Newtown, CT Shooting
Social skill: Noticing a consent problem
I’m not entirely sure how to describe this, but I know it’s a thing, and I know a *little* about how to deal with it:
Some people have been systemically taught that they are absolutely never allowed to say no to anything. That their boundaries don’t matter, and that they’re not really people.
For this reason, some things you’d normally do in order to establish consent and find out someone’s preferences don’t work *at all*.
For instance, asking “do you want to eat a sandwich?” is a totally useless question when you’re asking someone who’s been taught to interpret this as a command. Which a lot of people have been, because they’re in the power of people who don’t want to perceive themselves as having power over others. So they use lots of things that *look* like questions and polite requests, but aren’t.
And people get really, really good at correcting identifying orders and giving every outward appearance of consent. Because that dynamic punishes everything else.
So you have to do it differently. You have to make more guesses (not the right word, but don’t know a better one). And you also have to ask questions differently. You have to ask in a way that *doesn’t* suggest an answer. And you have to remind people that saying no is possible. For instance “Do you want to watch TV now, or do something else?” is better than “do you want to watch TV now?”, but still probably not good enough.
But you have to notice this. And take it into account when you interact with people. I know some of my followers on here know more about how to do this than I do — comments anyone?
If I hear ONE MORE PERSON say “He was autistic, he didn’t know what he was doing” in regards to the mass murder I am going to SCREAM.
Autism has nothing to do with violence
- autism has nothing to do with violence
- autism has nothing to do with violence
autism has nothing to do with violence
autism has nothing to do with violence
autism has nothing to do with violence
to add to that
people with autism absolutely ARE NOT inherently violent
thank and goodbye
Very important: how to tell who is a real friend
I really, really wish that I’d discovered this list years ago:
It tells you how to tell a real friend from a hoax one or an enemy.
If I’d read this list years ago, I would not have got married to my abusive husband. He fitted every single thing in the enemy list and several things in the hoax friend list, but told me he loved me and was my best friend. He lied.
99% of the people I thought of as friends in my life fitted the things in the hoax friend list.
Parents, please teach your autistic kids what friendship is meant to feel like, how friends are supposed to treat you and how to tell a real friend from a fake one. Please tell me these things too!
ThinkGeek is a corporate sponsor of AutismAcceptanceMonth.com
This is the same company that sells their Neurodiversity shirts (which don’t appear to currently be sold) and donated part of the profits during last year’s autism month to the Autistic Self Advocacy Network.
In short, ThinkGeek continues to be a pretty cool site.
EDIT: ThinkGeek has a new Neurodiversity shirt up and is again donating the April profits to ASAN.
"But Isn't a Cure For Autism a Good Thing?"
I’m more frightened than I’ve ever been in my life, more than I ever thought was possible. More scared than I was before I graduated college, so afraid of failing at adult life that I considered suicide and extreme self-mutilation. More scared than I was in my freshman year of college, when I was so lonely and isolated that I spent months alone in my dorm room, fighting back tears. It feels like the bottom’s dropped out of the world and everything I’ve ever cared about is crumbling beneath me, and I’m hovering over the abyss, not knowing whether I’ll fall. And it’s the not knowing that hurts the most.
You see, today I found out that the FDA approved clinical trials using cord blood to “cure” autism.
Those of you who’ve read my previous posts on autism will know that I am not a supporter of the movement to cure autism spectrum disorders. Those of you who haven’t may be wondering why I’m being so melodramatic and pessimistic about such a good thing. Now those poor autistic children will be able to communicate, you may be thinking. Now they can make their needs known and they won’t be upset or overstimulated and they can go into mainstream classes. Now they can function in society. And Lauralot, no one’s going to force the cure onto anyone! Why are you being such a naysayer? Only good can come of this! Even if it fails, it can pave the way for stem cell break throughs to help treat cancer or AIDs! You should be happy!
No, I shouldn’t, and no, I’m not. It’s a horrible feeling, realizing that your culture, your community, and everything that makes you the person you are is just a few scientific discoveries away from genocide. My universe has a very real threat of complete annihilation and it’s terrrifying. It hurts to feel this helpless. It hurts more than anything I’ve ever known.
If you are the parent, sibling, other relative, friend, or caretaker of an autistic individual, and you’re reading this in indignation, disgusted that a high-functioning individual such as myself who can communicate and hold a job is daring to speak for the autistic community, please, please read this post to the end before you pass judgment.
I know how hard it is to have autism. I know how it feels to seem trapped in your own body, upset or in pain and unable to express it. I know the frustration of missing social cues or motor skills that everyone around you seems to grasp so easily, I know how much it hurts to be the odd one out despite your best efforts and the support of others. I know how it feels to see someone you love in pain, to wish that you could rid the world of obstacles for them and make their lives easy. I know how much it hurts to see someone suffer for things they can’t help.
But that’s the thing about autism. For all the things it makes difficult, there are also positives. They may not seem evident, particularly if the individual can’t communicate verbally, and they may not even be recognizable as a result of autism, but they exist. My attention to detail that helps me in writing and costuming. My ability to memorize which has given me a life long love of books and the skill to recite everyone’s lines in the class play. The seemingly endless amounts of knowledge I can store about things that matter to me. My wit, my humor, my passions. They’re all a part of me, and they’re all a part of my autism.
Autism isn’t like epilepsy or asthma, or other disorders. Autism literally molds a person’s mind. Everything about how I view the world is in part due to autism. Autism isn’t something that happened to me. I wasn’t a normal little girl until autism snuck into my crib one day and changed my life. I am autism, and it’s me. We are inextricably linked and we can’t be separated.
Which brings me to my greatest fear about a potential cure: Curing autism will effectively kill the autistic person.
Their life won’t end, of course. They’ll go on breathing and talking, they’ll go to work or on dates and take vacations to Disney World. But the person that you knew, the person with autism? That person is gone forever. Autism shapes everything about us, and to take us off the spectrum would be to take us out of our bodies entirely and put a new person in our place. Now, there are autistic individuals who are fine with this idea. They are so unhappy as they are at present that they would willingly become a new person before they would continue living as they do now. And that’s fine. If a cure is available to them, and they are willing to sacrifice themselves to reap its benefits, I have no right to stop them. But that’s their choice, and theirs alone, to make.
But if a cure were to be available, it won’t be just their choice.
I’ve been told that no one will force this cure on autistics. But in these clinical trials, they already are. The 30 children being tested range in age between 2 and 7. I don’t know where others draw the line, but I say that to consent to a procedure that would completely alter a person’s brain structure and absolutely everything about their personalities and how they perceive the world, they ought to at least be eighteen years of age. Instead, they are guinea pigs for the government and for parents wiling to subject them to unproven, potentially dangerous treatments.
But those are their parents, you may be thinking. Parents have the right to make medical decisions for their children. Yes, they do, but that doesn’t mean they will always make the best or most informed choices. Organizations such as Autism Speaks love to frighten parents into believing they need a cure by painting autistics as burdens who will tear families apart, as helpless children who can never care for themselves. Parents are so frightened of their children “catching” autism that they are willing to skip vaccinations - buying into a proven false myth linking immunizations to autism - and potentially let their children catch fatal diseases as a result.
Just because a parent can make a decision doesn’t mean they should. If I had a child, I could choose to have the child’s legs replaced with prosthetics on the chance that he may develop arthiritis when he grows up, but that wouldn’t make it a reasonable thing to do. And if you find that comparison ridiculous, well, I think rewriting a person’s brain so they can have an easier chance at life is just as absurd as replacing limbs so they can have an easier chance in case they develop arthiritis.
Still, the fact that an autism cure is being sought proves that my opinions on this topic are not the mainstream view, and so if a cure is found, many parents will cure their children. Autistic people will become a dying breed, and autistic parents who choose not to cure their children may have their ability to provide for a child brought into question. Government accommodations for autistics will dry up, because why should valuable money be wasted on those who refuse to be fixed? Attempts at integrating and supporting autistic individuals in society will be abandoned, leaving us even more ostracized and feared than we already are.
My question is, why should money and limited medical resources be wasted to “cure” something that people can live long and fulfilling lives with? Why are we as a society so afraid of autism? This isn’t a hypothetical discussion for me. It’s my life. It may not be perfect, and sometimes it may be hard and painful, but it’s the only one I’ve got, and I still love it, rough edges and cracks and all. It is not that I don’t acknowledge that autism can make life hard and painful. It’s not that I don’t acknowledge that some autistics want a cure.
But I don’t want my life and community to die to make things easier for others. I don’t want to have to destroy who I am or watch people like me be destroyed in order to better “fit in,” to make everyone’s lives easier. And the thought that these things are all too likely chills me to the bone.
Please listen to the autistic community. Please take our considerations in mind before you hope to cure your loved one. Please remember that, autistic or not, we are still people, and this choice should be left up to us, and only us.
And please, please, contact the FDA and let them know that the autistics should be the ones making this decision.
Edit: I’ve revised this post to change the metaphor I made regarding altering a child’s mind/body without consent. My original metaphor was hastily constructed and I was informed that it could be read as cissexist. I apologize to anyone I insulted with the original post.
Parent vs. Parent
Let’s take two allistic parents. One has a child with autism. One has an allistic, neurotypical child.
Allistic parent of the allistic, neurotypical child loves dance. The parent has always wanted to be a dancer. They never had the chance. Now, they have a child. A child that they will force into dance.
The other parents hear things such as:
“I don’t care how tired you are! You will practice for an extra two hours because if you don’t, you’ll be a failure!”
“It hurts? It hurts? Don’t cry like that! The fact that it hurts is a good thing. It means your doing it right! I don’t care how much it hurts!”
“Stop that. Stop that right right now! You’re doing it all wrong. It’s such an embarrassment!”
Other parents, watching would feel for the child they would say what a terrible parent they had. How it was wrong to force a parents dream on their child.
They would whisper. They would gossip. They might try and help the child, in some way. They might talk to the parent.
The above is what autistic children, young adults and adults go though. Every day.
Every day, an autistic’s exhaustion over “therapy” is ignored.
Their pain? Ignored.
Every day, an autistic is told that what they want to do is wrong.
Every day, a parent complains about how embarrassing their child is.
Every day, the parent of an autistic child cries about how much it hurts to see their dream for their child…”crushed.”
And yet, it is accepted. It’s encouraged. It’s praised.
A parent who cannot accept their child who doesn’t want to dance? Abusive
A parent who cannot accept their child that is autistic? A hero.
Casual ableism is not listening to autistic people when they tell you Autism Speaks is an awful organization that contributes to the murder of autistic people through their depiction of autistic people as burdens, and wants to eliminate us with pre-natal testing.
Casual ableism is how you think you can speak for your autistic family member and say that, they were helped by Autism Speaks, even when they’ve never told you that.
Casual ableism is how you buy a “live loud” t-shirt from Autism Speaks, not even realizing the irony of such a t-shirt when many autistic people have noise sensitivities.