I’ve mentioned before that I wanted to write science fiction starring an autistic character. I’ve written the first manuscript, though it still needs work. As a plot out the series and more ideas come to mind, there’s research I need to do. In this case, a question I need to ask my fellow autistics.
I’d like to repurpose the term ‘quiet hands,’ filled with so much negativity to so many of us, and use it for something else. In my sci fi universe there are a group of neurodivergent people who hide, sometimes in plain sight, to protect themselves from those who would want to erase them. Starting with autistics who pass very successfully (hence the use of Quiet Hands) they formed a group that works to protect other neuroatypicals from erasure. They work within the neurotypical population, finding others like them, giving them a home, ensuring that their needs are met. Throughout the history of my universe they’ve grown as a group, encompassing other neurodivergences and other disabilities.
I like the double meaning of calling them the Quiet Hands, but I wanted to know what other autistics thought about the idea. Is it too much? Would it bother you, or do you think it works?
Maybe? I don’t know. I mean, if there’s something I’m not good at, but I really want to be, I’ll focused a lot of energy and determination into getting good at it, but I don’t know if that’s an autistic trait, or if I’d be like that anyway.
I do think sometimes we can feel pressured by society to be good at things so people won’t act like we’re worthless, so I wouldn’t be surprised if we’re a bit more prone to putting effort into things we’re not very good at. Beyond that, I’m not sure. Anyone else have thoughts/experiences on this?
One’s place on the spectrum can change from day to day, sometimes even from hour to hour. It’s not at all a static thing.
Many things affect our coping abilities. It may be that the past year has been more stressful for you in some way that is depriving you of coping skills, thus requiring you to stim more, causing more meltdowns and making you more sensitive to sensory stimulation. Speaking as someone whose been under a lot of stress this year, I’ve had a number of problems including such raised sensitivity to sensory stimulation that there have been foods I can’t eat.
Spending time passing can also lower your ability to cope. Really, anything too stress, too traumatic, too painful—all these things can potentially cause heightened symptoms. It can help to find ways to combat the overstimulation: Carry something to stim with if you have any sort of tactile stims (I keep a satin ribbon with me); use an iPod or sound-dampening headphones to cut down on noises that bother you and stress you out; choose clothing that you’re as comfortable as possible in; eat foods with textures that comfort you. (If any of my hedgehogs have any other useful coping methods, hit up my inbox.)
I wouldn’t worry about whether this is some other disorder at this point. It’s perfectly within the nature of autism and we all go through up and down phases when it comes to dealing with everything life throws at us.
Well, I can only speak for myself, but not only do my interests tend to shift, they come in different levels. Like, I get very surface fixations, and then I’ll want stuff to do with that fixation, and that can be as simple as buying a bunch of things in a color I’m fixated on. Other things run much deeper, and I’ll continue learning about them and being interested in them my whole life.
Like, for example, there was a period where I was fixated on owls, and wanted to collect lots of owl stuff. That waned. But I’ve been interested in history and archaeology for a long time, and though sometimes I don’t spend a lot of time on it, it always comes back. (I also have a very special place in my heart for maritime disasters.)
Very few of my interests go away, but the intensity of them changes. I’ve heard of other autistics who, for example, learn everything they can about a special interest and then aren’t interested anymore. Based on what I know about my followers, my guess is that there are a lot of different (and perfectly normal) ways that we interact with our special interests. So I’d guess that your experience is no more unusual than any of ours.
No problem! :)
I said I’d do it, and I did. Still got my cold, sadly. I’m in bed with my laptop, my favorite Faith Erin Hicks comics, and some tea.
As I mentioned before, I’ll be closing the inbox if/when it reaches a point where there’s more than I can handle and will then reopen it when it’s cleared out. Hopefully that should make things easier.
He’s literally using the petition email system itself to defame, harass and threaten one of our own with sexual violence.
So please don’t spread that petition around anymore. Wait for a new one to be made that isn’t in the hands of a misogynist piece of shit who preys on more vulnerable members of the autistic community.
I am, in fact, alive. And I’m finally, slowly, beginning to recover.
Back in April I was hit very suddenly by a depression, and a damn bad one, too. So bad that I found myself crawling back into bed and sleeping for hours on end. Medication helped, but slowly, and in the meantime I was going through a pretty stressful situation.
Just when I was getting on my feet again, I was hit with a diagnosis of fibromyalgia. I’m still coming to terms with this and learning to deal with it, but in the grand scheme of things I’m feeling much better and I have more good days than bad now. My stress levels are still somewhat high, and I’ll be fairly busy at times, but things have cleared up enough for me to reopen AH.
Starting Monday, I’ll be opening the inbox again. However, instead of keeping it open constantly, I’ll close it once it builds up to a certain point to give myself time to answer without more coming in. I’ll also go back to posting submissions, so feel free to send any Hedgehogs you might have.
Guess you can’t keep a good hedgie down. :)
- Kaia
Kelli Stapleton attempted premediated murder of her Autistic Child by locking her child in a van with the windows up and lighting two charcoal grills inside the van. The police foiled the attempt however Issy likely suffered brain damage. We ask that the United States Department of Justice prosecute this under the Matthew Shepard and James Byrd Jr. Hate Crimes Prevention Act of 2009 as the crime clearly targeted Issy due to her disability.
Sign this petition to get justice for Issy!
If you’re going to be a douchecanoe to the people you claim to be allies of, you’re not an ally. You’re a douchecanoe.
Sorry to be cheeky, but do you think you could signal-boost this?
I’m an autist who is absolutely sick of my autistic and neurodivergent friends who want to raid being pushed out of raiding guilds/groups for being “too sensitive” about ableist language/sentiments, or being too stressed out by what the raiding schedule demands of them.
So I’m helping to set up a neurodivergence-positive raiding group. We need more support to get it off the ground.
We’re EU only but other server groups (US, Oceania, Asia) are welcome to copy the structure.
Additional caveats regarding neurotypical people who wan to join here: http://p-3a.tumblr.com/post/49511361075/additional-caveats
I’m closing the inbox for now. I know I still have stuff to answer in there, but I can’t deal with it right now. My life is being somewhat eaten alive by the depression monster. I’m getting some help with it and hopefully I’ll be back in my feet before too long, but I don’t want more building up in there in the meantime.
Yeah, I think even those of us who are good at sarcasm miss it in some cases. I definitely struggle with it online, and even with my husband sometimes I have to double check with him, to see if something was sarcasm or not. I know autistics struggle with this a bit more than usual, but I definitely don’t think it’s just us.
Well, here’s the thing: The necessity of a charity for autism depends, I think, on where that charity is located and what it’s trying to do.
In the US, where social support structures are absolute crap, charities are often an unfortunate necessity. They are an opportunity to raise money, support and awareness so that autistics of all ages can get what they need out of society to make life more comfortable.
That’s part of what makes Autism $peaks such a crappy charity. It focuses on things like cures, which have very little relevance to the daily life of any autistic. When I see cases where, for example, a mother kills her autistic child because she can’t afford the special schooling he needs, I hold Autism $peaks doubly responsible. Their fearmongering and misinformation is bad enough, but as a charity, this is what they should be doing: Giving support so things like that don’t happen, and raising awareness of why society should change so there’s more support built into it.
They’re such a big charity that their Light it up Blue campaign is worldwide, and yet, why don’t they have funding programs to help autistic people get the kind of education, health and career help they need? Why don’t they run ads and make videos about how social security and universal healthcare are necessary infrastructure to help autistics (and all people) live happier, healthier lives? They could do that, and a good charity would do such things.
I guess what I’m saying is, having a charity for something doesn’t necessarily make that something a “charity case.” Rather, it can potentially be a force for change in the world, doing its part to help make the world a less harsh, inflexible place for autistics, and showing others why they should do the same. Such charities would definitely be worthwhile, and I can’t imagine most of us would be offended by them.
Considering that humor is a very subjective thing in the first place, I think the claim is hogwash.
Some autistics don’t understand some jokes, just like some allistics don’t understand some jokes. Because to those people, those jokes might not even be funny in the first place, and it’s hard to understand the point of something one doesn’t find funny. But like with so many other things, for us, it’s a stereotype and it’s been pathologized all to hell.
It’s true that in some ways we have slight disadvantages. Some of us struggle to understand sarcasm or other tones of voice, and if the person telling the joke doesn’t have very good delivery in the first place, it might make it even harder to get the joke (I have this problem with every single joke my brother-in-law tries to tell). But it’s important to keep in mind that allistics can and do have the exact same preferences and problems. If it’s not a stereotype for them, it certainly shouldn’t be for us.
If you really need to help, then it might well be worth it. Though I wonder, do you have a psychiatrist or a doctor you see on a regular basis, who would be willing to change the wording of your diagnosis to fit the new DSM, so you wouldn’t have to go for reevaluation? If you have someone already who might do that for you, talk to them first. If not, do what you need to do to make yourself comfortable.
It’s really unfortunate that this is affecting people like this. By all rights, anyone with a diagnosis that is being rolled into the autism spectrum ought to have their diagnosis changed automatically, but it doesn’t seem like that was planned for. I suppose it’s too much to ask that the American system be efficient.
(p2) strictly to autism, just in life in general. I would always prefer someone to ask exactly what they want or what they are curious about or if I do or do not want something.
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Honesty and straightforwardness generally is preferable to me, as well, and under most circumstances I really just want people to say what they mean.
Though, in terms of things that are autism-specific, I don’t like it when people use it as an excuse to poke and pry, either. Asking if something offends me is one thing, but going through a laundry list of possibilities one right after the other tends to feel a bit skeevy.
I think that was pretty much how we all felt about that…thing. And sadly, every now and then there’s a post in the autism tag from someone who works with autistic kids, that’s basically a condensed version of the same kind of nonsense that was on that blog. I fear it may not be that rare an occurrence, sadly.
(p2) strictly to autism, just in life in general. I would always prefer someone to ask exactly what they want or what they are curious about or if I do or do not want something.
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Honesty and straightforwardness generally is preferable to me, as well, and under most circumstances I really just want people to say what they mean.
Though, in terms of things that are autism-specific, I don’t like it when people use it as an excuse to poke and pry, either. Asking if something offends me is one thing, but going through a laundry list of possibilities one right after the other tends to feel a bit skeevy.
I know there’s Queerability which deals in queerness and disability, for starters. It’s not just about autism but autism is one of the disabilities covered.
As to whether I have gay followers…I’d be downright shocked if I didn’t, actually. Every now and then someone goes into the autism tag and asks if there are any other LGBTQ+ autistics, and it so happens there are a lot of us. I’m bisexual myself.
Any of my followers know of any good blogs or forums or the like?
My mom did me the unfortunate service of not telling me until some years after my diagnosis; had I been, oh, three when I was diagnosed, this wouldn’t be so bad, but I was nine, and she waited until I’d been badly bullied for some time to tell me. So I think it’s good that you’re talking to your kids about it and that you’re open to them asking questions about it.
I really wish my mom had been willing to learn more about it, and helped me learn, and I hope you’ll take the opportunity to do that with your children. There will be struggles and self-doubt and all manner of questions as the years go by, and it will be so much easier for them and you if they always know they can turn to you, that you’ll be there to help them. If you find yourself explaining again, a little in the future, about their autism, don’t be surprised; it may take time for them to fully absorb what that means. But your understanding and willingness to help and learn will make the road all the smoother.
That, I think, is what I would have wanted. Not someone with all the answers, as such, but someone who would be there to help me find the answers.
Hedgehogs, what say ye?
Testing doesn’t always come out with the right answer, so if you really feel you need it, by all means, try again. It may be that you just ended up in the hands of people who weren’t very good at their job, and if you’re really having problems, you shouldn’t ignore them. Mistakes get made and, unfortunately, when it comes to autism, even the so-called experts can be really ignorant.
Geez. Definitelyseek a second opinion. Wow. I just…I think I need to go sit in a corner for a little while and try to cope with how mind-bogglingly ignorant people still are about autism.
I prefer to be called autistic or an autistic person. I’ve addressed my feelings on the matter on my blog as well as addressed one of the major issues of how allistic people use it here.
To be clear, this is my personal preference; what other autistics choose is purely up to them.
Oh my dear goodness. Having recently learned about how France treats autism, you have my deepest sympathies. I’m glad you’ve found somewhere you feel comfortable and welcome, though. :)
My opinion is that this doctor is ignorant, ought to be fired, and you should definitely seek a second opinion, preferably from someone who doesn’t need both hands and a road map to find his own ass.
In point of fact, people with Aspergers are very often diagnosed later in life, specifically because it’s perceived by allistic people as being a higher-functioning form of autism. Far from being “so severe that it’s obvious,” it won’t necessarily express as strongly at a young age; the signs can be more subtle and easily missed, especially in children designated female at birth, because autism “science” is a hotbed of cissexism and gender essentialism.
I was diagnosed when I was nine. There are a number of people on Tumblr with an AS diagnosis that were diagnosed around that age or even later, sometimes much later—especially since AS only went down in the DSM in 1994. I couldn’t have been diagnosed AS at one because the diagnosis didn’t officially exist when I was one, and that goes for many, many Aspies or just those with some form of autism considered “high-functioning.”
It’s really sad and frightening to me that I feel like I, someone without training or even a complete college education, could do this job better than the people supposedly trained to do it.
“Neurotypical as fuck” here. Just wanted to add that I love my friend not “in spite of” her autism but really *because* of it. It’s a fundamental part of her personality and she wouldn’t be *her* without it. And losing *any* part of her would be absolutely unbearable. She’s one of the people I love most and I would never *ever* want to take away part of what makes her *her*. A$ is full of *despicable* people who want to change someone I love. She doesn’t *need* changing. She’s awesome.
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Well, there may be those who will take it offensively. We’re all different, and some of us more easily get when something is meant figuratively rather than literally. You’ll also find that some of us get it most of the time but not all the time, or half the time, or any combination. Since a lot of us are exposed to the internet these days and various forms of “whatever as fuck” I think you’ll find that most autistics understand what you mean, but it’s hard to know for sure ahead of time.
If you’re really concerned that you might hurt someone’s feelings, err on the side of caution and try to only use it around your friend. If you do find yourself in a situation where you’ve offended someone with it, apologize. While I do think the majority of us will get what you mean (we really are so many levels of spectra, and that includes things like literalness and sexuality) a little care for our feelings doesn’t hurt.