I am a deeply sensory person who cares about love and ethics. Hufflepuff to the core. The redwoods were my first home and my heart will live there forever. I live in the sensory world, I am only a visitor to ideas and words. Oh, and my alignment? Chaotic-good.
I Openers: Parents Ask Questions About Sexuality and Children with Developmental Disabilities by Dave Hingsburger
But someone sent it to me, and whoever it was, thank you very much. It must’ve been something I put on a wishlist and then forgot about. Not only is it strange to get a copy of it, but it’s strange to get a like-new copy of what’s clearly an out-of-print book that was printed in 1993. But it’s in absolute mint condition, wherever you got it from. And I’m always thrilled to get a book by Dave Hingsburger that I haven’t read yet, because even the ones that have a lot of things I disagree with, I always learn things from, because one of the amazing things about Dave as an author is he’s sharing his learning process over the years about ethics in general, and he does so with a level of honesty few people can hope to approach.
Also thanks to the two separate people (or same person twice?) who ordered Twirling Naked Through The Streets And No One Noticed: Growing Up With Undiagnosed Autism by Jeannie Davide-Rivera. I’m always looking to add things to my collection of books by autistic authors, and such books have exploded so much lately in terms of production, that there are as many books I don’t have as that I do, even though I have one of the largest collections of such books that I know of.
If anyone’s interested, this is my Amazon wish-list for autism-related books, nearly all of which are written by autistic people. Don’t anyone feel obligated to get anything for me, it’s just there if for some reason you have the desire to.
There’s also a few books on the list written by non-autistic professionals and other so-called experts that I want for research purposes. By which I mean, research into what experts think, not necessarily actually believing the experts. Sometimes I find it important to know what they’re saying, even if I don’t agree with them.
(And then this post got really long and rambling, so the rest is under a cut.)
Can we talk about how autism discourse often revolves around throwing people with intellectual disabilities (and other cognitive stuff) under the bus? Like I’m reading something and it involves literally saying “well at least autistic people can actually be really smart and not have cognitive/intellectual disabilities!”
First, autism and intellectual disability are not mutually exclusive.
Second, intellectual disability does not preclude meaningful lives. Intellectual disability does not mean people cannot have input on their own lives and choices.
Stop talking about it like autism is higher up on a hierarchical scale and that’s why autistic people are worth something.
People are worth something because they are people.
This gets especially intense around autistic people who use FC.
I got my head practically bitten off by a facilitator who told me that “motor planning problems aren’t cognitive impairments” and I was like “actually yes they are, they’re where thinking meets movement, that’s cognitive“. But he didn’t get it, didn’t want o get it, he just wanted to keep pretending (and passing along to his clients) this idea that autistic people’s cognitive impairments are just a myth, that autism is just almost like a form of cerebral palsy where your body doesn’t move how you want it to but you think just like everyone else.
Physical disability rights people are no better. I know someone who did a research project on disability pride in the mainstream disability rights movement, and she was shocked to find that most of it boiled down to “at least we’re not retarded”, sometimes in exactly those words.
And there are segments of the DD movement where autistic people are put at the bottom of the barrel.
From what I can tell, generally at the bottom are DD people of all kinds (including autistic people but not limited to us), and people with psychiatric disabilities, and different ones come out on top in different situations, often with people shifting around depending on the situation.
But yeah been speaking out against cognitive ableism in autistic communities since forever because it’s been a thing since forever, and a much worse thing than just about anyone is willing to acknowledge.
“If you didn’t know him when he was alive, you never will.”
—
Brenda, Six Feet Under, Season One Episode Six (s01e06) “The Room”
This quote is so false it’s hard to believe. I’ve started watching Six Feet Under recently because I’ve had so many people recommend it to me. So far it hasn’t lived up to the hype, but it’s far from boring either – well it started out kind of boring but it’s getting a little better now. I’m still giving it a chance. The story is about a family that runs a funeral parlor, and their father dies. One of their girlfriends says the above at one point, about their father.
But this quote, is definitely false. While I can’t say I didn’t know my dad before he died, I can say there are entire sides to him I didn’t know about, or didn’t know very well. And those sides? I’m getting to know better and better the longer he’s been dead. Because the effect he had on the world didn’t go away when he died, and you can read the effect someone had on the world, you can learn new things about a person, there’s all kinds of things you can pick up on after someone dies that you didn’t know before they died. You don’t have to interact with someone directly as a living human being in order to get to know them better. Sometimes their presence as a living human being even gets in the way of you knowing certain things that only become obvious after they die.
So if you lose a loved one without getting to know them first, or without knowing them as much as you’d like, that’s always going to suck, and there will always be questions you won’t be able to ask them anymore. But there will also always be more things you can find out about them, even if they’re not around to talk to. And sometimes that can even take the form of getting to know someone for the first time after they’re dead.
I think the hardest part is going to be for River. She was always the more rat-focused of the two. Less synched into communicating with humans or doing things the human way. But was always checking up on Mallow. The two were kind of inseperable. So I think it’s going to be rough for River.
(On the other hand she’s been cuddly and bruxing a fair amount. And every time she does something and gets the response she had in mind, she bruxes some, so I think she’s learning that humans can be good, too. And in the last few months, she picked up the “talking to humans” sounds Mallow made and is using them now. O.o )
one time in sixth grade i did my math homework and then because i was excited that i had grasped the lesson so well, i did the next day’s homework too
the next day in class i told my teacher, and she looked constipated for a second, and then said dismissively, “well, then you’re not very good at following directions, are you.”
Cause tags are truth. Maaan ,that one time a teacher stole my encyclopedia cause it proved her wrong.
when I was eight and in public school, we could do a report based on any historical character who had a book about them in the school library.
I picked Harriet Tubman because Harriet Tubman, and I wrote about how her master had thrown an anvil at her head, leaving her with a permanent dent in her forehead. I know that the anvil part was definitely in the school library book.
My teacher circled the word “anvil” and took off points.
“I HAVE SPELLED ANVIL CORRECTLY,” I roared in tiny confrontation.
“No,” she said, and it transpired that she didn’t know or care that “anvil” is a word or that “anvils” are a thing.
And so despite my helpful attempts to explain what anvils were, including references to blacksmiths and the Roadrunner, I had points taken off OH MY GOD.
YES, I AM STILL MAD ABOUT THIS TWENTY YEARS LATER. FUCK YOU, LADY. YOU ARE DOUBTLESSLY DEAD BY NOW AND I HOPE YOU KNOW YOUR STUDENTS STILL HATE YOU.
ANVILS ARE A THING.
By 7th grade I was pretending not to know words that I did if I didn’t want to hear something snide from a teacher about answering questions “in my own words.”
When people put their egos before your education, jfc
In first grade I picked up a book about bees and learned that bees keep their young in some parts of the honeycomb cells, so I enthusiastically told my teacher that. And he was like, “No.” And I kept arguing because look, I had the book right in front of me and I had JUST read it, and he started squeezing my shoulder and hissing through his teeth, because he could just not let me believe I was right about something he didn’t know. The book was in his own damn class, he could have read it.
I once had a French test where we had to translate French sentences into English.
Every time I wrote the word “no” in English, the French teacher (who spoke French as her first language) “corrected” it by writing “non” in a red pen and marking me wrong. Which turned out to be quite a bit of questions marked wrong, so that I got a fairly low grade on the test.
I wrote an explanation that in French it’s spelled non but in English it’s spelled no and that I did nothing wrong in spelling it no in the context of English.
I got in major trouble, was called out of class and had it explained to me that I was “condescending” and “rude” and “hostile” for explaining such a thing to a teacher, who should be an authority figure, and all sorts of other weird bullshit. They never paid any attention to the fact that she graded the test completely wrong, they made it all about me having a bad attitude. That was one of many times in my life where I got in trouble for not noticing and/or responding with subservience to social hierarchies. This response from authority figures has not stopped. They perceive hostility where none exists, just for not showing deference.
It’s extremely hot and I have thick, bushy hair especially in the humidity. Even with the hair oil (and the daily spray I made out of it) it’s still a lot of hair and it gets hot. So I did this:
Two side braids, ending in rubber bands.
Then I pulled them back until they met in the middle
Tied them together with a rubber band.
Unbraided all hair below that point, removed two rubber bands.
Began to divide up the hair into three pieces, below the rubber band.
Took off the rubber band.
Braided the remaining hair as tightly as I could manage.
Rubber band added at the end of the braid, now the only rubber band in any of this at all.
And now I have two braids going around the sides of my head and meeting as one braid down the back.
I used to do all kinds of strange things with braids, this is nothing. I used to make small braids and then bobby pin them into spiral shapes then hang earrings off them. That was during a time in my life when I considered my body to be a good place to hang as many stimtoys as possible, in the form of jewelry mostly.
It’s also the age when I started learning that when you alter your appearance, everyone else thinks you’re doing it to have some effect on them. Which seemed laughable but people would literally walk up to me and say “You must want attention really bad to wear earrings in your hair.” No, I just liked the way they looked. I had no idea the attention they would provoke and actually found that really annoying.
With this hairstyle, I likewise do it because I like how it looks. Not for other people to look at. The selfies are obviously for people to look at, but more as a means of self-expression than a statement that I’m “trying to be different on purpose” or something.
I have talked to other auties who did the jewelry-as-stimtoys thing and to a one we all had people assume we did it for its effect on other people, rather than because we personally happened to like it. It always struck me as weirdly self-centered that so many people assume that every random person is vying for their attention so badly that they’d risk ridicule to get it. (This goes double when the people assuming that are institution staff whose attention everyone is trying to avoid. They seem to assume a lot that everyone wants them to pay attention to us, which is bizarre given the power dynamics involved.)
Oh and the heat right now? When I’m not in front of a fan, my entire body gets sweat pouring down it, everything but my armpits themselves (strong antiperspirant, I know it’s considered bad for you, I still do it because otherwise my BO is intolerable, and it’s not like it stops sweating anywhere else besides my armpits). I think I got heat exhaustion tonight (because I got a thing so I can now watch Netflix and Amazon Instant Video on my TV instead of my computer, and I stayed out there too long as a result), and I definitely started showing signs that caused a staff person to administer dexamethasone in a hurry. Which helped. She says whenever she sees me drooping, shaking, and panting, she knows I’m probably having cortisol problems in addition to whatever just happened. And so far I always feel better after she gives steroids, so I feel lucky she’s around so often. She notices before I do when I’m starting to have trouble.
Last time she did this was the time I bruised my ribs really badly. Minor injuries like that can still trigger adrenal crisis, in fact one of the common ways adrenal insufficiency is diagnosed is when someone has a relatively minor injury, but collapses, and ends up either diagnosed in the ICU or the morgue. I was told I should have been in the ICU sometimes, that I’m lucky to have survived those times, and that had anyone been paying closer attention I would’ve been diagnosed a lot earlier. By the time I was diagnosed, I was collapsing every night in my sleep and waking up too limp to move and unable to stay conscious very well, and very glad that my bipap’s central apnea mode (AutoSV, see link for details) kicked in whenever this happened and acted as basically a makeshift ventilator.
Anyway, hair. I like this hair. I like that the hair that isn’t in the braids is mostly the really obviously curly hair, that is normally hidden by the rest of my hair.
As for the heat, one of the other things I want to do is crochet myself a vest with lots of big pockets the size of ice packs, and then wear that. I can’t do air conditioning until my house is much cleaner than it is and I’ve unpacked everything, and realistically I won’t manage that in the kind of time I could manage to crochet a vest in.
I’m autistic, I went to a group that was supposed to help me with autism-related issues, and they gave me some social skills advice that I honestly think was terrible. And the group was pretty terrible in general.
I ended up quitting for various other reasons, but it’s still sorta bugging me ‘cause what if they’re RIGHT.
The advice went like this: It’s okay to disagree with someone, but it’s never okay to explain WHY, because that’s pushing your opinion on them and that’s wrong.
realsocialskills said:
That rule is way too oversimplified to be useful. It’s true in some circumstances, and completely wrong in others — and completely useless at helping you to understand when it is and isn’t ok to contradict people.
The truth about social skills is that all rules are approximations at best. And often, as in this case, rules taught in social skills classes are completely useless and misleading.
Learning to be good at social interactions isn’t a matter of Learning the Rules; it’s a matter of learning to develop your judgement. Approximations and rules of thumb can help with this. They can’t replace the need to think for yourself and rely on your own judgement.
Social skills classes often teach people really destructive things about themselves and about social interaction. Here’s one way that can happen:
They tell you that autism (or whatever else) is preventing you from understanding social situations
They tell you that there are rules and that everyone else knows the rules naturally
They give you some simplistic rules and tell you to always follow them
The rules might sometimes be plausible-sounding or half-truths
Following the simplistic rules does not actually get the results they claim it does (because life is more complicated than that)
This can be really confusing
If you express this confusion to them, or say that it isn’t working, they attribute it to your autism and tell you to try harder or trust the process or something
They sometimes say this in a harsh way, they sometimes say it in a gentle or encouraging way. That difference is mostly aesthetic.
Either way, it amounts to the same pressure to believe them unconditionally and stop thinking for yourself
I suspect that something like that is going on here. The rule itself is useless. There’s no way to use it to tell whether or not it’s a good idea to explain your reasoning to someone you disagree with.
But it sounds just-plausible-enough to fuel self doubt, because there are some situations in which it really is mean to explain things to someone. (An example that’s been circulating on Tumblr recently: It’s ok to dislike Minions. It’s not ok to hassle kids about liking Minions or try to convince them that it’s bad and they shouldn’t like it.)
It can be hard to remember that these tiny kernels of truth aren’t actually meaningful. But they’re not. Kernels of truth in a simplistic rule don’t make it useful — and they don’t make the people pushing simplistic rules right.
Also - people who are wrong aren’t always wrong about everything. They may have told you some things that were true. They may have told you some true things that you didn’t know. And they may have told you some true things that you *still* don’t know. That doesn’t mean that their overall approach was ok, and it doesn’t mean you should trust them or doubt yourself.
I think, push come to shove, you have to think for yourself and develop your own judgement about these things. And sometimes that will mean that you make social mistakes — but they will be *your* social mistakes, and you will learn from them. It’s ok for autistic people to make social mistakes. Everyone has to learn this stuff, not just us.
tl;dr Social skills groups can really undermine your ability to trust your own judgement. They give you simplistic rules that are impossible to follow, then blame you when it doesn’t work. It’s not your fault if this happened to you, and it’s not your fault if you’re having trouble recovering.
This is good.
Abuse cw for the following:
Also, some people act like they’re teaching you social skills, when actually they just find you annoying, so what they’re trying to teach you is to shut up, and take up less space, and don’t have strong opinions, and don’t ask for anything, and don’t assert your preferences. They try to teach you to be excessively polite, more polite than neurotypical people are ever expected to be, and to defer to everyone you meet. This can set you up to be vulnerable to other abusers and bullies in the future, if the bulk of your ‘social skills’ lessons have been how to avoid annoying people and stepping on any toes.
Sometimes it’s hard to avoid ticking people off when you’re on different wavelengths, and sometimes that’s because being neurodivergent makes it harder to learn social cues and etiquette. But if someone trying to teach you social skills never teaches you that also, sometimes people are going to be offended and annoyed for unfair reasons, and it’s not your job to accommodate them or pacify them, then they are not giving you a balanced view of things, and they might actually be teaching you anti-skills.
I had that experience in the psych system, they taught us ‘social skills’ that translated to meek subservient social skills. (In particular they used the idea of “nonviolent communication” to take all the power out of anything we said.)
And of course some nurse reblogged that post lecturing me on why we ~have to respect choices~ if someone decides death is preferable to a life of pain.
Which has absolutely nothing to do with the point I was making that if you’re really talking about choices *you talk about a range of them*.
Otherwise choice is just a euphemism for refusing treatment for treatable conditions and dying.
Yes that.
And it’s always nurses and doctors who think they have all the answers that ~mere laypeople~ could never understand – and all seem to be indoctrinated in the same direction, somehow.
Oh, and nobody ever talks about how the ~burnout~ that, for instance, ICU and hospice nurses experience, shapes their view of who should live and who should die. And how maybe we should be looking for signs of PTSD in people who work in these professions, instead of assuming that once they get PTSD (which is what ~burnout~ often means) then their judgement about what happens to patients is ~oh so informed by experience~ rather than informed by fear and burnout and sometimes even wishing that patients would die so they wouldn’t have to witness suffering and death (no it’s not logical but it’s what happens).
And all of that somehow turns into being the ones who ~really understand and care unlike mere mortals~ or something.
Refusing chemo/radiation for incurable cancer is also a broader category than people are usually willing to acknowledge.
There are situations in which cancer treatment has the potential to cure or create stable remission.
There are situations in which cancer treatment has no realistic chance of either cure or improvement, but keeps things stable or slows them down — and people live longer.
There are situations in which treatment doesn’t extend life but does make cancer symptoms more tolerable (eg: palliative radiation).
There are situations in which it’s very unlikely that treatment will have any benefit at all.
And life-extending non-curative treatment gets discussed as though it’s the same as probably-futile treatment. And it *isn’t*.
Yes, all of this. Cancer, and its treatment, is way more complicated than people who haven’t had to deal with it have any idea about. And even more complicated than a lot of people who have had to deal with it know about. (Don’t get me started on pain management and the dogma on both sides from people who know nothing about how it actually works. And the times that pain management gets used as a euphemism for euthanasia, and the other times that badly-done pain management gets seen as proof that nothing can be done to manage pain, and the times that pain management is done right – which isn’t nearly as often as people think it is, even doctors – but it’s not enough and someone just wants to die already, and on, and on, and on.)
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4:27am
August 2, 2015
