beatrice_otter: Me in red--face not shown (Default)

Watching this episode, Maxwell Lord went from “douchey businessman” to CREEPY MCCREEPERSON.  Oh, wow, him alone with Bizarro, petting her and quoting poetry to her and manipulating her, shiver.  Then him talking about completely rewriting their genetics and personality as saving them … as an autistic, that hits HELLA close to home.  (When people talk about “curing” autism, that’s actually what they mean, re-writing our genetics and re-wiring our brains, whether or not we want to be “cured,” and then saying they’re helping us and we should be grateful.  I thank God that it isn’t actually possible yet.)

And then.  And then Alex said that they’re not people, they’re experiments, oh, shit, Alex, you did not say that.
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Oh, boy, has this been a fun couple of weeks to be disabled* in fandom.  Not!  And fortunately, other people have reported on it, so I don't have to, I can just point to their responses.

So, first up, we have the ongoing clusterfuck of WorldFantasyCon 2016.  Background: in past years, they technically were accessible, in that they passed the minimum requirements for ADA, but not actually accessible, in that they had a panelist in a wheelchair (author and blogger Mari Ness) and provided no way (ramp, lift, etc) for her to get on to the stage with the other panelists.  This is, apparently, not the first time this or similar things have happened.  Previous disabled panelists and con-goers report other similar problems at previous World Fantasy Cons.  (Thank you, File 770, for a writeup and for links to other commentary on the piss-poor quality of World Fantasy Con 2015's harassment policies, or lack thereof.)  (Further background: a writeup of all the harassment at World Fantasy Con 2013 and the 2013 concom's problems doing anything about it.)

For obvious reasons, various disabled people did not want to register for this year's Con until they had an accessibility policy stated, so that they would know whether or not it was worth it to go.  I mean, if you're deaf/hard of hearing and they don't have sign language interpreters, that means the panels aren't worth going to, for example; and if you can't get to where you need to go in a wheelchair, well, again, not much point going.  And they had been repeatedly requesting clarification and, in fact, any response at all, and getting bupkiss from the con organizers, when the early-bird discount expired on February 1, leading to a significant rate hike.  Then Jason Sanford got (and posted) screencaps from the con's organizing Facebook Page where the concom mocked the very idea of needing any sort of accessibility or harassment policy.  (Yeah, inaccessibility and harassment have only been major ongoing problems at World Fantasy Cons for years, so why should the concom care about the whiny jerks who want to actually be able to participate?)  Cue uproar.  The Concom tried to cover their ass and attack their attackers, and got justly taken apart for it.  (And a more general look at why accessibility is such a big issue at cons, sparked by this whole thing but not directly about it.)

After getting hit with all kinds of well-deserved crap for their attitude and (lack of) policy, they posted one.  Sort of.  It's ... better than nothing?  And still no word on whether people who didn't register because of the lack of policy will get the early-registration price break.

And then, when the dust was still settling from that, came a far more (to me, personally, as an autistic) infuriating thing: the horrifyingly ableist piece on SFSignals' "Special Needs In Strange Worlds" blog, "We Are All Disabled" (since taken down).  Folks, this is about the pinnacle of well-meaning Nice Lady attack on disabled people.  You can probably guess from the title what it was like, but I'll summarize.  The author talked about how everyone has something that makes getting through life a little bit harder, so therefore everyone is disabled!  (No.)  Her "disability" is that she's too "empathetic."  (Note that this "empathy" didn't lead her to do ANY BASIC RESEARCH ABOUT THE PEOPLE SHE WAS WRITING ABOUT.)  What followed was inspiration-porn tripe DRIPPING with just about every stereotype and ableist slur you can imagine, much of it specifically aimed at autistics.  And using pseudo-Christian "everything happens for a reason so you must be disabled to learn something from it" platitudes as well.  Some responses by tilisokolov, India Valentin, Lev Mirov, Kayla Whaley, David G, and Jim Hines.  SF Signal took the post down and apologized, and the author gave a sort of mealy-mouthed half-apology of her own, but good God, people.  That they would put up such an article in the first place shows an APPALLING lack of knowledge about the very thing (disability) they claim to be writing about.  That post was horrifying on so many different levels that anyone with even a basic knowledge about ANY kind of disability should have been able to go "wait a minute ..."  And SF Signal's first response (which I didn't see personally before it got replaced with a better one) was apparently to go "well, it's a guest writer, so Not Our Fault."  Yeah, but it's your blog!  You have a responsibility for the content on your own blog!
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Had a long chat with Mom this afternoon.  Apparently Dad's having problems with moodiness that he's never had before, and she's worried about him.

And all this time, he's apparently been handling the revelation that he's on the autism spectrum a lot worse than I knew.  My baby brother was diagnosed when I was in college, and I figured out right away from the list of symptoms that I was, too, and I struggled with it for a long time.  I figured out that Dad was autistic then, but he didn't until a couple of years later when baby brother was in school and he asked the teacher if he thought Dad might possibly be autistic, and the teacher kind of boggled that he was only just then figuring it out.  Anyway, when I've talked with him about it in the decade since, it's been mostly focusing on the "it's nice to know why I am the way I am."  So I thought he was handling it okay.  But apparently, he wants to be positive for his daughter; Mom gets to see more, and apparently there's a lot of "autism is horrible, I'll never be able to have friends or do anything."  (And, yeah, in his life he has only had ONE close male friend, who committed suicide like a year before baby brother was diagnosed.  But they have a decent social circle; he may have only had one "best friend," but he's got friends who genuinely like him and care for him.)  And I don't doubt there's a lot of midlife crisis in there, too.

I feel guilty, because Mom asked me for advice on therapy and stuff a year or two ago, and I didn't really brush her off but I didn't pay much attention because from what I could see, he was doing okay.  But, like, they didn't even know that ASAN exists, and there are two ASAN chapters within two hours of their home.  If nothing else, they'll know if there are any good therapists who aren't a dick about autism in the area, and if we're really lucky there will be a middle-aged man or two that Dad could maybe strike up a friendship with.  And I've known about ASAN myself for a while now, I could have hooked them up.

beatrice_otter: Poirot: Little Grey Cells (Little Grey Cells)
Hey guys, the Autistic Exchange signups are open for business. It is a fanfic exchange by autistics for autistics, about autistic characters (whether they're on the spectrum in canon or not).  There are a wide variety of fandoms in the tag set--87 fandoms from every main category AO3 has.

If you are somewhere on the spectrum (and questioning, self-diagnosed, and professionally diagnosed autistic people all count!) we would LOVE to have you join the fun.

beatrice_otter: Saavik (Saavik)

I was reading a Sentinel-AU fanfic, and it occurred to me that reading and writing such fics would be good practice for writing autistic characters.  Because Sentinel fics are all about the senses and thinking through what it would be like if you had hypersensitivity.

Guess what!  Hypersensitivity is a common symptom of autism spectrum disorders!  We’re not Sentinels, of course, but we are often really sensitive to things that allistic people don’t even notice, and we often have trouble filtering out the things we’re sensitive to.  That’s one of the more common causes of autistic children having meltdowns (which allistic people sometimes mistake for temper tantrums).  The world is a big, noisy, smelly, overly-bright place designed for people whose senses work differently than ours, and children especially have trouble processing it, and so they get hysterical because they Just. Can’t. Cope.  (Which is why one of the most effective ways of dealing with a meltdown is to take them into a dimly-lit, neutral room and have them lay down under a blanket you know they like the texture of, so you can block out all the overwhelming stimuli.)  Adults tend to have better coping skills and better ability to avoid the things that really knock us for a loop, but it’s no more pleasant for us as adults than when we were kids.

So you know how in Sentinel fics, clothes feeling like sandpaper is a major clue that Character A is now a Sentinel?  It is super-common for people on the autism spectrum to have that issue with clothes feeling like sandpaper.  And yet, at the same time, that same person might not even notice getting a cut–it’s a different sensation.  It’s not all things relating to a particular sense, for us; we tend to be hypersensitive to certain things.  For example, my nose is normally pretty bad, I’m not good at picking up and determining odors, but the “new car” smell makes me nauseous and I JUST CAN’T STAND IT.  Most textures don’t bother me to feel (and a few I really, really love), but there are a couple that freak me out.  So if you’re writing an autistic character, and you want to get into their head, pick a couple of sensitivities and show the reader why the autistic person doesn’t like them (or, conversely, really really likes them).

Of course, one of the differences between Sentinels in fic and autistics in reality is that when a Sentinel has a sensory issue, most people are sympathetic.  When an autistic person has a sensory issue, we’re told to get over it and stop being so weird.
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Stubborn Mouths: Humans In Translation (62938 words) by Hannah
Chapters: 23/23
Fandom: Star Trek: Deep Space Nine
Rating: Mature
Warnings: No Archive Warnings Apply
Relationships: Julian Bashir/Elim Garak
Characters: Julian Bashir, Elim Garak, Jadzia Dax, Odo (Star Trek), Kira Nerys, Quark (Star Trek), Miles O'Brien, Keiko O'Brien, Benjamin Sisko, Minor Characters
Additional Tags: Disability, Disabled Character of Color, Autism, Canon Character of Color, Neurodiversity, Implied/Referenced Child Abuse, Alien Cultural Differences, Judaism, Jews In Space, exploring replicator limitations, Literary References & Allusions, Neko Case - Freeform, Alternate Universe - Canon Divergence, Autistic Character
If you’re sending yourself out to the edge of civilization, people expect it to be done for fame and glory – but then, Julian Bashir has never been what’s expected of him. He’s quite happy to agree with the reasons other people provide, because he isn’t sharing the private whys and wherefores when people are more than happy to fill in the gaps themselves. There are other, better things to worry about, work to be done and friends to be made – possibly even a lover, if he’s lucky…

...all while fighting to maintain his worth, and remain exactly who he’s always been.
This is an awesome story, taking an AU premise (what if Julian’s parents had been caught before they could have him genetically altered?) and exploring it.  I love the characterizations, I love how three-dimensional everyone seems.  But if you might be triggered by parents “treating” their child to make them “normal,” you might be bothered by this fic–we never even meet them, but it deals with what they tried to do to him.
beatrice_otter: John Watson and Sherlock Holmes, from BBC's 2010 Sherlock miniseries (John and Sherlock)
As someone on the spectrum, I knew right off the bat that the Sherlock Holmes in the BBC Sherlock series is not on the autism spectrum, despite vague comments from the actor and/or directors and writers that maybe he was supposed to be.  But when you try to point out all the reasons why not, you get all kinds of crap.  [ profile] wellingtongoose (on both LJ and Tumblr) has done a series of excellent meta posts about Sherlock (everything from Britpicking to John's probable career history), and for one entry asked four professional psychiatrists whether Sherlock was on the autism spectrum.  All four of them said "no, absolutely not."  There was all kinds of furor and pushback and "how dare they, obviously they can't have any idea what they're talking about!" (because of course actors, writers, and TV watchers who have read three blog posts and a news article about the horrors of autism know better than people who deal with it every day on a professional basis).  So they have written a further explanation.  I bet it results in people flinging the same kind of crap; hopefully at least one or two people will read it and go, "oh, maybe they have a point."

Why we wrote: Sherlock does not have autism, thanks, from 4 Psychiatrists.

beatrice_otter: Me in red--face not shown (Default)
Journeys with Autism: On the Matter of Empathy

One of the worst, most damaging, most incredibly false stereotypes of people on the Autism spectrum is that they lack empathy. This is absolutely untrue in the sense that most people mean it; most people on the spectrum are at least as empathetic as neurotypical people, if not more so, we just don't know how to express it in ways that most people understand. Scientists measure our ability to manifest emotion in socially appropriate ways and even knowing that difficulties in learning social cues is one of the major signs of the disorder, assume that a lack of social cues implies a lack of emotion. And then to add insult to injury, scientists dismiss out of hand the testimony and critique of people who actually have an Autism spectrum disorder.  Rachel Cohen-Rottenberg does an excellent job of refuting the stereotype and explaining her own empathy/emotional responses as a person with Autism.  I highly recommend it: go read!

Journeys with Autism: On the Matter of Empathy

My own experience is similar.  I am highly empathetic.  Part of my job is to visit people who are ill or injured.  Obviously, you have to connect with them, but my supervisor says I get too emotionally affected by/invested in them.

This is true in other places in my life, too.  For example, I don't enjoy watching comedies, because I empathize too much with the characters.  I can't separate myself from them, gain emotional distance.  So much comedy is based on uncomfortable or embarrassing things happening to a character and the audience being expected to laugh at it.  I can't; I feel as if I were the person in that predicament.  It's not funny to me, because I empathize too much with the characters.

But expressing that empathy has always been a problem for me, although not so much any more.  My natural body language doesn't express my emotions in ways people not on the spectrum might expect.  For example, you know how teenagers are so emotional?  The world's horrible one day, their life is ending, and the next life is awesome?  Yeah, that happened to me, but when I was having horrible days no one noticed, and on days when everything was fine I occasionally had teachers coming up to me to ask me what was wrong.  My physical and facial responses to emotion didn't match what they were looking for.  This is a problem when it comes to showing empathy: people don't always (often don't, actually) notice the things people on the spectrum do to show empathy, so they assume they don't feel it.  I remember one incident in particular in high school where a friend of mine was going through a bad breakup, had problems at home, and one day it all came out as we were eating lunch together in the cafeteria.  She was crying, sobbing her eyes out.  I felt so bad for her, I felt her pain.  What did I do?  I sat there eating my french fries for a few minutes while I tried to figure out how to comfort her in a way that she would understand, how to express my emotional response to her pain in a way that would support her.  It took me a few minutes to figure out that what I needed to do was get out of my chair, walk around the table, and give her a hug.  From the outside, I'm sure it looked like I was completely heartless: there my friend was, right across from me, crying her eyes out, and I sat eating french fries.  But it wasn't that I didn't empathize with her, the problem was simply that I didn't know how to express that empathy.

In the years since high school, I've learned to read social cues a lot better.  And I've learned to project body language, facial expressions, and tone of voice that match my emotional state and are socially appropriate.  Those are skills I can learn.  I didn't have to learn the emotions, those have always been a part of me.

And people buy into the stereotype, and assume I'm cold and unfeeling.
beatrice_otter: Me in red--face not shown (Default)
Over at [ profile] sherlockbbc they've had two posts in as many weeks about how "OMG, you guys, Sherlock totes has Aspergers!  They're bad with people and are brilliant in weird ways!"  I'm probably going to put together my various comments to that when I have enough spoons and write a post on "Why Sherlock Holmes is absolutely not on the autism spectrum in any way, shape, or form.  No, not even if Benedict Cumberbatch has said that's how he's playing him."

But there's one comment that won't fit in there, and it's in response to a sensitive subject, so I'm reposting here just to vent.  The person I am responding to (the OP)r said (about strong responses to the topic) "I am always surprized by strong reactions to particular issues or themes. It seems perfectly natural to me to openly discuss all manner of things--But then I'm a particularly extroversial individual so yacking about things is simply what I do."

My response:

As someone on the spectrum, here's why talking about Aspergers triggers a strong reaction in me: the Autism Spectrum Disorders (of which Aspergers is one) are the trendy "new" mental health issue. So people see them in anyone who is anything other than perfectly 100% "normal" and find all kinds of ways to twist the actual diagnosis so that it will fit. And they tend to assume that watching Rain Man or reading a single book makes them greater experts in the subject than someone who actually has the disorder. And then try and lecture me on how I don't know what I'm talking about. Then there are people who want to talk with me, not because they want to talk to me but because they want to talk about what they heard about Aspergers on daytime television or from their second cousin who's got a kid with autism etc., and I'm just the most convenient stand-in. It's not destigmatizing, it's emphasizing the stigma by trying to figure out every weird/unusual trait I have and categorizing it, as if I was a disorder and not a person. As if you could just put certain behaviors/thought patterns in a box and say "this is the Aspergers, and that stuff over there, that's [info]beatrice_otter." And I don't always have good enough social skills to figure out how to turn the conversation to other tracks, particularly if I'm tired and stressed. Sorry, this is my life here, not your amusement. I do not exist for the purpose of educating you.

There are a lot of people on the spectrum who like talking about it. Sometimes that's even me, when I'm not tired and stressed. I just wish that I didn't always have to start at ground zero with everyone. It's difficult and stressful, particularly for someone who finds dealing with people in general to be very stressful.

I can't tell you the number of job interviews I've been on in the last year where the subject came up (for the kinds of jobs I was applying for, prospective employers needed to know) and we spent most of the interview talking about Rain Man or Temple Grandin or whatever new book just came out instead of the job and whether or not I was qualified for it and would be a good fit.

So that's why this type of discussion strikes a nerve with me.

If you would like to educate yourself on the subject of Aspergers, there are many fine books on the subject.  I would not recommend novels about people on the spectrum unless written by someone on the spectrum, because chances are good the author is just jumping on the bandwagon and doesn't know what zie is talking about.  Most experts--and people with the disorder--tend to write non-fiction.  Anything by Temple Grandin is great, of course, but for a beginning resource for laypeople I would recommend So Odd A Mixture: Along the Autism Spectrum in Pride and Prejudice by Phyllis Ferguson Bottomer.  In the first chapter she gives the clearest description of the underlying causes of ASD and the resulting symptoms I've ever seen, and in the rest of the book she takes each character from the book that she identifies as being somewhere along the spectrum and analyzes their words and actions to show you why and where they're coming from.  It's thoughtful, well done, and easily accessible for laypeople, particularly if you happen to be an Austen fan (although you don't have to be to find it a useful book).  It's also available on Google Books, with "Autism Spectrum Disorders for Janeites" beginning on page 25.

beatrice_otter: Me in red--face not shown (Default)
Tuesday I saw a neuropsychologist. (Recap: I had to resign from my internship a few months ago mainly due to poor social skills caused by undiagnosed Aspergers.) I was diagnosed with Aspergers, which was not a surprise (I've known I had it since we started researching my brother's autism), but I was also diagnosed with Face blindness, which was a surprise but explains a lot. I've always been bad at pairing faces and names. When I was at camp in middle school, on the last day when we were getting ready to go home, one of the girls from my cabin came up to me and I didn't recognize her because she'd changed her clothes from what she'd been wearing in the morning. I can recognize people I know, but it takes me a while to learn to recognize new people, particularly when I meet them in a large crowd. From the testing I got, apparently I can memorize about three new faces at a time, and any more than that forget about it. I've never thought much about it because my Mom's the same way, and lots of people talk about being bad with names and such. But apparently I'm much, much worse than most people, which doesn't help social skills that are already pretty bad because of the Aspergers.

Apparently, they're in the middle of reviewing and updating diagnosis criteria as a prelude to a new edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM). So she evaluated me on a version modified by current discussion on the issue.

Aspergers criteria that fit me )

What this is like from the inside )


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