Writing Accidentally Autistic Characters

Instigated by this Tumblr post, particularly the part where iridescent-enby asks what a writer can/should do if they realize they are writing an accidentally autistic character. How do they make the autism explicit without speaking for/over us (do they make it explicit?)

I’m responding as both a writer and an autistic person. Finding out that you were accidentally or unintentionally writing an autistic character is not the same as setting out to intentionally write an autistic character. When you set out to write an autistic character, you probably do research about autism. Hopefully, this research includes things written by actually autistic people, but... I'm well aware this isn't always the case. 

And advice about writing with autistic characters can be found. So can letters to writers about autism, examinations of common narrative methods for "showing" autism, analyses of problems like character development meaning "overcoming" autism or acting "less autistic," and discussions of behaviorizing vs. humanizing approaches to writing about autistic people and characters. I've even thrown my hat in this ring before, with "Who Gets to Stay Autistic?" In retrospect, I think I should have left the comma in the title: Who gets to stay, autistic?

There doesn't seem to be so much about what you do when you realize you're writing an autistic character. Which is kind of funny, because there are so many autistic characters running around who we're never told are autistic, who we recognize because we know ourselves. I definitely recognize characters as autistic while I'm reading. Alanna of Trebond and Olau, later Alanna of Pirate's Swoop and Olau. Annie Cresta, with the added dose of PTSD that literally all the Victors have. Hermione Granger, because if I am just like her, then she is autistic too. Emily, from Questionable Content. Dairine Callahan.

It's not hard to write an autistic character without setting out to do so, because we're people, and you'll see us around in life. We exist, and knowledge about autism is such that you'll often only realize that we're quirky or eccentric, not that we're autistic. Something is different about us, and maybe it's interesting to you as an author, but you don't have the word for it and therefore neither does your now-accidentally-autistic character. 

That doesn't mean you can't find out later. Most likely, you'll find out because all of a sudden autistic people are noticing that they have a lot in common with the character, and maybe we're even telling you about it. Somehow or other, you find this character you wrote is autistic. Now what?

If you realize a character of yours is autistic while you’re still writing things with that character, and they’re in a context where the diagnosis and some level of popular awareness of it exist, you can arrange for it to come up. They could hear that their accommodations request could get approved. (If it's approved, you don't need to devote a plot arc to making this needed accommodation happen FFS, what is the ADA anyways?) They could have a teacher ask, "I thought there was something in your IEP about that?" (The school social worker asked me this when I quit group. I never had an IEP.)  They could show that they've known all along by mentioning it off-hand. ("Not eating that. Autism thing." or "No, everyone is not a little bit autistic! If everyone were a little bit autistic, fluorescent lights [or other sensory issue for the person] would not exist!" if they get into a situation where someone makes the joke about everyone being on the spectrum.) They could show up in a T-shirt that indicates autism. (Shirts of mine which would work for this purpose: Autistic Party Giraffe by Sparrow, Autreats Amazing Annual Adulthood Accalamation from when Autreat still existed -- this one involves some verbal explanation since non-autistic people who went to Autreat as kids and then as adults could have this short as well--, and "I love someone lacking autism" from Tone it Down Taupe.)

They could run into another autistic character who does already know, recognizes them, and says something. (This is perhaps more realistic than you'd think: I have literally been approached by another autistic person and greeted with, “Did you know you’re autistic? Come have lunch with me!” Subtlety: not something we’re usually known for, and autistic people recognizing each other as similar is a thing that happens whether or not we have the word autism. If one has the word and the other doesn’t, this could be how the second gets the word.)

Whether or not it's practical to include a reference to make the characters autism explicit in the actual work, however subtle or obvious, you can respond with Word of Author (aka God.) Don't claim you were intending them to be autistic if you weren't, we generally don't like lies. But! You totally can (and should):

1. Be noticeably not-insulted by the insinuation you could write (or play) an autistic character. Yes, folks have gotten insulted by the idea that a character they wrote or played or were otherwise involved in was getting read as autistic.
2. Accept the possibility (probability) that the character is, in fact, autistic. We're pretty good at recognizing our own. 
3. Be noticeably not-insulted by the idea that fans noticed something about a character you didn't necessarily intend. It's super easy to accidentally write an autistic character if you don't know that the real people they resemble (who you may have borrowed some autistic traits from) are autistic themselves!

Perhaps counter-intuitively, I would suggest that you not immediately go research autism for the purpose of writing the character if it becomes clear you’re writing an accidentally autistic character. If we're reading your character as autistic, that means you are already writing a good autistic character. Reading what supposed experts have to say about us is not going to help you write a better character. It will put stereotypes in your head that you will then need to work to avoid.

Alyssa Reads Uniquely Human: Part 4

The saga continues! Part 3 is here, and if you want to go back to the beginning, that's here.

Chapter 3 is titled "Enthusiasms."

I feel a bit odd about the listing of "special" interests, here called enthusiasms, though it's mentioned that many call them "obsessions." (I tend to call my own "Autistic obsessions" but I'm the kind of twit who throws themself into a wall hard enough to shake the stage to protest the idea that indistinguishability/loss of diagnosis is an optimal outcome so take that with a grain of salt.) I've never felt weird about autistic people listing the interests themselves, which is fairly common: there's an entire Tumblr blog dedicated to sharing our interests! I think part of the difference is that when we do it, we get to explain how the interest makes us feel and why we have it and how we expressed it, and here it's just a list. Like in David's article for Knots. (You need to make an account to read the article online, but it is free.) I think that extra detail makes the difference for me between behaviorizing and humanizing when we describe the interest.

I like how Dr. Prizant points out that our interests are a source of, well, interest, plus happiness, and that this is on its own an argument against discouraging them. Yes thank you we have internal thoughts and feelings and what makes us happy matters on its own merit. Glad you pointed that out.

I also like the example of how a teacher was able to use a students enthusiasm in order to design an alternate assignment involving reading and writing that he completed happily because it fit the interest. I like how he points out that most people have interests and hobbies (and admits that we tend to get more intense in ours, because we do, but it's not the act of having an interest that's autism-specific.)

There's definitely a problem with the idea of "splinter skills" or "savant skills" though, in dividing us up into the parts you find competent or valuable and the parts you find worthless, and frankly a problem of applying improper standards when you think the neuronormative "overall profile" or "developmental level" is going to be a useful measure for us to have abilities or support needs that stand out from a "profile" we didn't really fit anyways. I say this as someone who hasn't had a single coherent developmental level (as defined neurotypically) since I was about five months old. Possibly longer. Doesn't mean I'm a savant or have splinter skills. It means autistic development is what happens here, rather than accelerated or delayed neurotypical development.

The "Remarkable" tales of passion are stories with happy endings that come from having encouraged, supported, accepted, and sometimes taken advantage of our interests, which is cool. The accounts definitely lean behaviorizing rather than humanizing (if you haven't read the behaviorizing and humanizing link yet, it's to Disability in Kidlit and the idea applies just as well to describing real autistic people as it does to describing autistic characters.)

The use of an interest, bringing supplies to education meetings so the student can engage with the meeting when they want and engage with their interest when they'd rather do that, is a good idea, and since involving students in their own education is important, I really like that idea.

He does address times when an interest can get us into trouble -- the key is when pursuing an interest could violate someone else's boundaries/consent, we don't get to do that. (He doesn't put it in those words, but it is the common thread between the examples given.) Which is legitimate.

Teaching time and place can be useful, but I'd like to add one more piece: supporting us in our choice, if we make it, to spend most of our time in the places where our special interests are accepted and are how we connect with people anyways. In autistic spaces, taking turns sharing lots of information about our interests is considered social engagement. (The taking turns so that we all get to do it is part of what's great about it.) Plus we can find folks with the same interest. The other thing is that many interests will have clubs or interest groups: heck yes we may want to join those! Arranging to spend more of our time in the places where we already fit is very much a thing.

In the section on teaching time and place, Dr. Prizant notes that a common problem in people's responses to our interests (and how we express them, which absolutely can be in infodumps) is focusing on behavior to the exclusion of motivation. Yeah, that's an easy mistake to make when all you describe is the behavior, even when it's behavior that you think is OK, isn't it? (Yes I'm pointing out that you are narrating behavior over motivation in your book, Dr. Prizant. Please follow your own logic and suggestions better.)

The idea of using interests to support engagement in school I think is useful. I'm a bit wary of thinking a career might come out of these interests, for reasons Dani's expressed well. Turning an interest into work can burn the interest out, and besides, some things just need to be for fun. That doesn't mean it can never work -- he gives some examples where building an interest into a career seems to have gone fine, at least from the outsider perspective, but keep the caveats in mind before suggesting someone else do it.

You can read part 5 here.

Alyssa Reads Uniquely Human: Part 1

I'm reading Uniquely Human: A Different Way of Seeing Autism, by Dr. Barry M. Prizant, with Tom Fields-Meyer. I'm not entirely sure what the "with" means here -- did they write together? Did Tom edit for narrative, since telling narratives is apparently his thing? Dunno. I'd like to be able to like this book, since it's pointing out that trying to eliminate stuff we do just because it's autistic isn't a great idea, and since it was recommended to me.

Anyways, I know how my commentary tends to go, and I'm dividing this up. Part 1 is all the stuff that isn't in a chapter: cover, reviews that are printed in the book, book jacket, contents, authors notes, introductions, the index, that sort of thing.

The first thing I notice is that Temple Grandin loves his approach. That makes me suspect that the book is 1) going to be better than, say, Autism Speaks stuff, but 2) probably aspie elitist¹. 

On the book jacket: Everyone's using person-first language², and it's all children³ with, not people with. That's expected, but not a great sign. I know Michelle Dawson is good, but I'm not so familiar with Geraldine Dawson. Are they related? I don't know the Rabbi. I know Tony Attwood, and his appearance is not a good sign. Famous, claims to be an ally, and his comedy is full of jokes that really are at the expense of the autistic people in the room. Doesn't like having this pointed out. I'm not sure who Elaine Hall is, but I approve of her stating that the true experts are autistic people. I get very nervous seeing that she founded something called the Miracle Project and wrote a book about unlocking autism. 

Moving to the inside of the book jacket: We start with criticism of how autism is typically "portrayed as a checklist of deficits," which is a good sign because that's 1) typically what happens and 2) a big problem. The shift Dr. Prizant is suggesting, that we think of autistic behavior as coping methods for an overwhelming world, is not new but the idea of explaining some of what we do that way is reasonable. My isolation headphones, for example, are exactly that. 

The inside "advance praise" comes from some names I know and some I don't. The autistic people on that list are both white authors who run aspie elitist, and I still see the goal of "help" to "gain a greater social understanding," as in helping us learn to understand (and presumably imitate) how other folks social. Which is admittedly useful, but without helping other folks understand how we social too it's one-sided. I'm thinking back to "What would meeting you halfway be?" here. 

The table of contents doesn't have much that jumps out at me, though one chapter title does: The Real Experts. Since I totally just did the cover art and wrote a contribution for a book by the same name, I take a glance. Seems to be about actual autistic people/people with autism, which is good. I don't know the language preferences of the specific people so here's both just in case. (I also notice page counts: there are 12 chapters, and only 1 occupies fewer pages than The Real Experts. Hrm. If we're the real experts, wouldn't we get a bit more space?)

Looking at the author's note, I see that it addresses some of the language cues that made me nervous. He doesn't say why person-first language is his preference, just that it is. (Why?) That's not satisfying. The occasional reference to Aspergers I get. Given how publication schedules and writing work, he probably wrote a good chunk of the book (the draft submitted to the publisher?) before the distinction was dropped in the official release of DSM-5. But! The way he's using it lines up with an error that is a personal pet peeve of mine. Just because a person is tested as having average or higher cognitive and language ability does not mean their label was Aspergers under DSM-IV, or that it should have been⁴. *Waves hi.* Ding-dong, you are wrong.

In the introduction, Dr. Prizant expresses concern over the environment of fear and anxiety around autism, where parents are super scared. I'm glad to see that, because yeah the fear is a problem. Of course, he's not really saying anything about where this fear comes from. (Because doing so involves pointing at colleagues, at organizations where colleagues work, and at resources he suggests?) Also, when asking “which treatment will succeed?” can we also ask what success means?

I like many of his examples here: pointing out that everything he's seen an autistic person do, he's also seen neurotypicals do, if at a different age or under different circumstances is a move I approve of. (I also think it's important to get into the differences of when and why, but that's different from thinking similarities between autistic people and non-autistic people are irrelevant or shouldn't be discussed.)

I like the statement about learning from autistic people, though I have to question how “rare” the “ability to explain their own experience of having autism” really is. Is it that it's rare to be able to? Or is it that through experiences where professionals conclude our ways of being and acting are to be eliminated without concern for why, and through getting asked the same questions again and again from parents who want us to translate their children, treating us as resources rather than people, we learn not to explain this stuff. It's ignored because our supposed lack of theory of mind means we “can't understand what it's like to be ourselves,” and it's ignored because the parent really wanted to know how to get the kid to stop rather than what the purpose was, and it gets more repetitive than even we want to be. Remember that explaining why we did the thing the staff person didn't like can be taken as further noncompliance. Are you sure it's that we mostly can't?

I now turn to the back of the book. The resources guide looks like a mixed bag. A lot of the titles make me question the perspectives and goals of the authors – intervention “for autism” is rarely a good sign, for reasons that Dr. Prizant actually pointed out in his own introduction, please follow your own logic. Floortime is “gentler” but definitely about engaging with the kid in their way in order to try to draw them into engaging and acting in neurotypical ways. I would be shocked if anything with “unlocking autism” in the title is decent, and I know enough about the social thinking curriculum to run the other way, far and fast. Pointing to AAC resources is important⁵, though, and Paula Kluth writes good things, including You're going to love this kid. I follow PrAACtical AAC and they're mostly good.

Websites and organizations are again … interesting. Anyone who suggests Autism Speaks as a resource rather than as a group to avoid loses MAJOR points in my book⁶. If you're talking about the fear and anxiety around diagnosis in the same source where you suggest them, you lose points for inconsistency as well as for suggesting that organization. You don't get to have it both ways. Have you read the stuff they put out?? ASAN and GRASP are at least run by actually autistic people. Autcom has some autistic leadership but after parents who used to be board members wore badges indicated they still were while defending inaccessibility to autistic people, yeah, I don't trust them. Also Autism Society of America impeded an autistic attendee in contacting police after she was stabbed at their conference⁷. That's a thing that happened.

Without any explanation of what “meaningful progress” means, I can't speak to the SCERTS model. Maybe I'll see more about that in the chapters? I'm a bit nervous when social communication comes up.

Looking at the index now:

Huh. The names of autistic people I recognize look awfully white and middle to upper class. Also fairly aspie elitist, and none of them show up on that many pages. I wonder how much their ideas are actually getting used, then. Echolalia as communication gets quite a few pages. So does adults as a cause of emotional dysregulation. Trauma is mentioned. These seem like good things.

After reading the not-chapter things, my bet is on:

"Pulls decent to good ideas from autistic adults and repackages them to be palatable for a wider (parent-centric) audience, but chooses autistic adults who are white, middle to upper class, and usually aspie elitist. May or may not cite autistic sources properly, depending on how much he's really pulling from them. Also doesn't follow his own logic of re-interpreting things as not pathological as far as he could."

Part 2 here.

Footnotes!

1 When I say aspie elitism, I'm talking about something very like what Mel Baggs means by aspie supremacy, but without needing the claim that the “aspies” are better than the neurotypical people – it's just about the relationship based on perceived/assumed place within the autistic spectrum that isn't actually linear anyways.

2 This tells me Dr. Prizant is quite familiar with the parent and professional perspectives. In the authors note he says he understands and respects “why some adults with autism prefer the label 'autistic.'” Which, I appreciate the gesture, but no. Some autistic adults prefer the label autistic (and some adults with autism prefer the label “with autism,” this one isn't about language per se but respecting identity and choice.) As in, the ones who prefer the label “autistic” should be referred to as “autistic” even if you're going with person-first as your default. Here's hoping he got that right at the specific people level even though he missed it at the group level.

3 Treating disabled people, especially intellectually, developmentally, and cognitively disabled people, as forever-children is a big problem. So is acting like autism is some “new” thing that only affects children because of how new it is, as opposed to something where there are a ton of un- or mis-identified autistic adults running around … and a lot who didn't survive. He does point out in the authors note that things often apply to teens and adults as well, but why not just say "people" when that's the case?

4 Yes, I know people who had speech delays that made them ineligible for the Aspergers diagnosis who got that label anyways because they learned to speak before the evaluation happened. Back in 2012 I saw an Australian study that suggested fully half the people who'd gotten either the Aspergers or the PDD-NOS label actually qualified for “Autistic disorder,” which means their diagnosis was wrong – you weren't supposed to give either of those two when criteria for “Autistic disorder” were met. And a lot of these incorrect labels? Are because people falsely assume average or higher performance on IQ tests and language tests implies Aspergers. 1) This is a pet peeve and Dr. Prizant just hit it with his description of who'll get referred to with Aspergers. 2) If anyone knows the formal citation so I can point at it instead of just “I remember seeing” that would be great.

5 I use AAC part time, and sometimes write about doing so. Also, Typed Words, Loud Voices exists.

6 I've got a whole “Problem with Autism Speaks” tag on my blog for a reason, folks. Sam Harvey's masters thesis also discusses some … issues with their rhetoric and the results.

7 Link is to a picture of the scar. Check the description and the comments of the photo from the story.   

The Worst Nightmare You Don't Know

I am your worst, I am your worst nightmare,
You, you will suck, the life out of me.
You're trying to save me, stop holding your breath.
I'm just a problem that doesn't want to be solved.
Tired of being what you want me to be,
I am your worst, I am your worst nightmare,
Stab me with your steely knives, but you just can't kill the beast!

I'm a failure to you, a failure to you, yes I'm a failure to you.
Can it be, I'm not meant to play this part?
Oh, my soul needs to be free
I'm through with playing by the rules of someone else's game.
Bury it, I won't let you bury it.
I won't let you murder it, I won't let you smother it.
All I want to do is be more like me and be less like you.

I am your worst, I am your worst nightmare,
You don't know what it's like to be like me.
Get along with the voices inside of my head!
I'm not drowning; there's no one here to save.
I'm through accepting limits cause someone says they're so.
The flaw you're looking for does not exist,
It's just a figment of the higher man's tongue.
All I want to do is be more like me and be less like you.
I am your worst, I am your worst nightmare,



This poem is echolalic, pulling from song lyrics. I used lyrics from:
Novocaine- Fall Out Boy
Monster- Eminem/Rhianna
King of Anything- Sara Berellis
Defying Gravity-Wicked
Hotel California- The Eagles
Bats in the Belfry- Dispatch
Strangers Fate- High Tide (now The Saturday Nights)
Reflection-Mulan
Welcome to My Life- Simple Plan
People of the Sun- PONS (now The Saturday Nights)
Numb-Linkin Park
Open Up- Dispatch
Time is Running Out-Muse

I may attempt to record this at some point, we'll see.

In this poem, "I" is me/autism/autistic me, and "you" would be the folks who for some reason think autism is the scariest thing ever, just to be clear.

Autistic Person Included is a Headline Because Reasons

Note: This is satire, or something like it. Also, yes, I use sie/sier/sier's as my pronouns when I'm writing about myself in third person. Everything else feels wrong saying it about myself, though other people saying it is usually not an issue. Now that this has been established, we continue!

The local woman's ultimate frisbee team looks and plays much like any other, but looks can be deceiving. You see, one member of the team is autistic, and we're therefore going to cite completely irrelevant and quite possibly deceptive information about the prevalence of autism in children, because of course this team member is actually a child despite sier status as a graduate student and teaching assistant.

Despite sier oh so inspiring struggles living while Autistic in an ableist society, sier teammates say sie is just a regular member of the team. "If sie weren't so open about it, we would never have guessed," one woman said, neglecting to mention just how little she actually knew about the developmental disability.

And yet, something must be different about this team, or the Autistic member, or the teammates treatment of sier. Otherwise, this wouldn't be news. We're pretty sure this is a feel good piece where the team is trying to demonstrate that they don't suck by acting like nothing whatsoever is different about their interactions with a disabled teammate. Because ignoring the reality of a teammate's disability is obviously the best way to make sier feel included.

Now that we are four paragraphs in, we're going to say that despite sier autism (which actually doesn't make it harder for sier to play ultimate,) Alyssa is a typical member of the team, and sier placement has nothing to do with autism. "Alyssa earned sier spot on the team fair and square," the captain noted, neglecting to mention that there aren't actually try-outs.

And now, in the final paragraph, we have some short comment from Alyssa sierself. "How is this news? This is my fourth year on this team, people." Clearly, Alyssa's impairments leave sier unable to understand that a feel-good piece on including a poor disabled person on a team is always news. 

Disability Fearmongering Rhetoric Disorder

DFRD

Terrifying statistics, epidemics, children stolen by an unknown foe,
No person stealing us away, an abstract idea of miswired minds,
Of lives gone awry when the menace struck:
Disability Fearmongering Rhetoric Disorder.
DFRD, it leaves families empty and lifeless.
The tricksters laugh on, they need not steal what we throw away.
No need to hide what's presumed gone,
No need to take what's ignored in favor of fear.




So um this one got inspired by Amy's post about Autism Speaks Rhetoric Disorder (ASRD). I used a different name because it happens with other disabilities too and because Autism Speaks isn't even the only offender for autism. It's the biggest one, best funded one, here in the USA, but it's not the only one and I don't want to let the others slip under the radar, especially not Generation Rescue, considering that they actively promote stuff like bleach enemas and chelation.

Autism Fearmongering Rhetoric Disorder (AFRD) is a subdiagnosis of DFRD, with the Autism Speaks specific Autism Speaks Rhetoric Disorder a subcategory of AFRD. April is the awareness month for the entire Autism Fearmongering Rhetoric Disorder subdiagnosis, with Autism Speaks Rhetoric Disorder perhaps the most widespread due to the organization's large reach.

Love, Not Fear

This is for the Love, Not Fear flashblog happening tomorrow, done by Boycott Autism Speaks. Figured I should start off with that. Also, I saw Neurodivergent K's post before mine posted and it's saying things I would want to add, so I'm just gonna leave you with that link... the Litany Against Fear is really cool, and the way she added other stuff in between with relevancy is really cool and I kind of wish I'd thought of it.

So, what does "Love, not fear" mean to me?
Um.

I think love and fear can exist together, actually. Love of, fear for. Fear of autism and love for autistic people don't go together, certainly, but fear of what others do to autistic people can totally go with love for autistic people. And I'll admit it: I'm often afraid. I'm scared of the ways people limit our language use, and I'm scared of the things parents apparently think it's acceptable to do to autistic people, and I'm scared of a whole lot of other things too. Because love, I stand and fight these things that I am afraid of. Not autism, I won't fight a part of a person, that's not love for the person. But the terrible things that others do in the name of fighting autism? Because I love autistic people, I will fight those battles.

Love sometimes leads to fear that others will hurt the ones you love, and it sometimes leads to anger about the ways others have hurt the ones you love. But it also gives the courage to stand up and fight against those horrible things. Love gives the strength to say "I am afraid, and I will love anyways."

Am I afraid of the effects of autism's demonization? Yes. I am.
Do I fear autism? Do I fear autistic people? No. I don't. That's not love.

And I will close with a thing I remember from a series that I think was called Fearless. The idea was that courage doesn't mean "I'm not afraid at all." It means recognizing what it is you're afraid of and doing what needs to be done anyways because we love. Feel like Nita from Young Wizards would do that too. (Yeah I'm apparently in a book reference mood.)

Sources. So Many Sources

I finished writing my paper: "The Erasure of Queer Autistic People."
These are a list of all the sources I either cited in the final paper or made notecards for while doing research. [Some things I did both, and some things I only did one or the other. Yes, I cited a couple things I didn't make notecards for.]
Have fun. [No, the swears are not censored in the actual blog titles. Or in the actual paper!]
The source list should be fine, but assume trigger warning for any sources you track down.

Ali. "Addendum to Latest SBC Rant." Web log post. The Polite Yeti. 2 May 2011. Web. 3 Apr. 2013.

Ali. "So Glad You're Writing These." Web log comment. B*tch Media. 6 Jan. 2012. Web. 20 Aug. 2013. 

Ali/Eliot. "The Very next Day Was My Birthday." Web log post. The Alternate Lexicon. 1 Apr. 2011. Web. 20 Aug. 2013.

Amialone. Web log post. This Is Not a F*cking Thinspo Site. July 2013. Web. 24 Aug. 2013. <http://amialone.tumblr.com/post/56116672621/throwing-in-one-or-two-female-pronouns-when>.

"Any Other AS Transwomen Scared That You’ll Be Socially Forever Male?" Web log post. Queering Autism. Apr. 2012. Web. 20 Aug. 2013.

Anzaldúa, Gloria. "La Prieta." This Bridge Called My Back: Writings by Radical Women of Color. By Cherríe Moraga and Gloria Anzaldúa. New York: Kitchen Table, Women of Color, 1983. Print.

"Autism and Transsexualism." Transsexual Roadmap. 6 Mar. 2012. Web. 21 Aug. 2013.

Autism Survival Manual - Autism and Sexuality. By Craig (weaveintothewin2). The Autism Survival Manual. Youtube, 12 Aug. 2010. Web. 26 Aug. 2013.

Baggs, Amanda. "Please Violate Only One Stereotype at a Time." Web log post. Ballastexistenz. 16 Dec. 2007. Web. 24 Aug. 2013.

Baggs, Amanda. "This Is Not the Post I Started out Writing." Web log post. Ballastexistenz. 19 Nov. 2009. Web. 22 Aug. 2013.

Bascom, Julia. "Whose Stories Get Told: Regarding Feeling Unsafe In The Glee Fandom." Web log post. Just Stimming. 14 Oct. 2011. Web. 24 Aug. 2013.

Becker, Corina. "The Beginnings of Autistic Speaking Day." 2011. Loud Hands: Autistic People Speaking. Ed. Julia Bascom. 1st Ed. Washington, DC: The Autistic Press, 2012. 70-74. Print.

Bedard, Cheryl, Hui Lan Zhang, and Kenneth J. Zucker. "Gender Identity and Sexual Orientation in People with Developmental Disabilities." Sexuality and Disability 28.3 (2010): 165-75. Springer Link. Springer, 20 Mar. 2010. Web. 29 Mar. 2013.

Bev. "The Ever-expanding List of Neurotypical Privilege." Weblog post. Square 8. 29 July 2009. Web. 22 Aug. 2013.

Brown, Lydia M. "How They Hate Us." Web log post. Autistic Hoya. 19 Aug. 2013. Web. 21 Aug. 2013.

Bryce, Landon. "John Elder Robison on Autism and Sexual Orientation." Web log post. ThAutcast. 20 May 2012. Web. 3 Apr. 2013.

"Call for Submissions: TFW Forum on Disabilities, Ableism, and Disability Studies." The Feminist Wire. 26 Aug. 2013. Web. 26 Aug. 2013.

Cat. "Meet Your Moderator: Cat." Web log post. Nonbinary Autistics. 10 Jan. 2011. Web. 20 Aug. 2013.

"Database of Sexuality and Disability Resources." Ed. Grace Kelly, Lorraine Hone, Zoe Hughes, and Adrianne Pullen. Connect People Network, 2012. Web. 1 Apr. 2013.

Ditz, Liz. "Vigil for George Hodgins and Other Disabled People Murdered by Their Families." Web log post. I Speak of Dreams. TypePad, 16 Mar. 2012. Web. 3 Apr. 2013.

Doetsch-Kidder, Sharon. Social Change and Intersectional Activism: The Spirit of Social Movement. New York: Palgrave Macmillan, 2012. Print.

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I've been at SDS

SDS is the Society for Disability Studies, and it had it's annual conference. I'm actually still there, I get home Sunday night, but the presentations are done. It's been cool.
There was stuff on disability rights, there was a panel that I was on about intersectionality stuff and Autistic culture, I got a chance to talk to a bunch of scholarly people. Robert McRuer doesn't actually hate me. [I have anxiety issues. My first presentation at a conference ever, I criticized the use of the word "crip" in his book because of historical exclusion of cognitively disabled folks from the broader disability community, and how choosing a word that needs stretching to apply to a group that has historically been excluded isn't awesome, even if it is stretchy and mostly has/is starting to stretch. He... was at the conference. Not on my same panel, thank goodness, but at it. 太尴尬了！(SO awkward!) And I was thus convinced that he hated me. Which is totally not how it works in academia, but still. Turns out he actually thinks I'm pretty cool.] There was a silent auction. I'm coming home with three books, two T-shirts, and a pile of papers I didn't have when I got here. I learned stuff. I made connections. I may have gotten myself invited to participate on a different panel for next year. One where the title and description is less self-narrating zoo exhibity. (The stuff I actually talked about wasn't self-narrating zoo exhibit. But the title was a little bit like we were representing Autistic people to the broader disability community.)
There was some cool stuff. There was a paper about the representation of autism that was pretty cool, critiquing the whole "unimaginative genius" and "savant" set of representations. There was the panel I was on. A friend of mine was on a panel for emerging scholars (students, generally) who were doing disability studies research. His presentation was good, and I have a copy of the paper he's writing with an associate professor. Dr. Grace offered to help me get my paper on the erasure of Queer Autistic people finished up and to help me find a place to publish it, too. Since I don't have much in the way of organization or remembering to keep working on a thing that I don't have in my face, that could be very helpful. It depends on if my paper gets accepted for the Inspire virtual conference, I think- that would give me a solid deadline to get it done by, which means it would happen. Without that, I could forget about it and then it would be not a thing. That would be bad, since I think it's important and I think it fits in well with disability/queer theory. There's a lot of places the problem comes from, and I want to cover all of them. Caretakers, parents, staff, queer communities, sometimes even the disability community. It's... complicated.

On Easter Seals

Trigger Warnings: Ableism, anti-vax, silencing of autistic people using functioning levels and discussions of such.


Easter Seals:
I heard that you sent an apology and chose not to call autism an epidemic anymore. I'm glad you did it. It was a big step in the right direction. Huge, really. You moved from "It's an epidemic!" to "People are finding out, and we're going to help them get the services they need." One of these is scary. The other is honest. Yes, it can be hard, but help is there, and that's the big thing. (No, I don't like the way services look. But you're not the service provider or really the policy maker, so you're not the one who needs to hear about those issues. It'd be nice, since groups that are getting money have power, but that's not what this response is about.) And you know what? Employment training for adults is one of your things too! So that's another thing that's good. You're putting the focus where it belongs, on actually doing the things rather than saying scary things that increase stigma.
And yes, you're taking a lot of flack for it. It looks to me like a lot of it is from people who think vaccines and autism are related. Going to put it out there that I am fourth generation autistic, at least, direct line of descent. Yes, I'm fully vaccinated and autistic, but genetics. Genetics is a thing, autism runs in families, the big study everyone likes to point to blaming vaccines was found a fraud.
But you know what? That's besides the point too. The point is that autistic people are here, right now, and that referring to autism as an epidemic and a public health crisis does increase stigma. That means that for people who want their autistic children/children with autism to have a better life, calling it those things would be counterproductive even if it were true. (It's not. I really, really wish I hadn't lost the link to the study that found an autism spectrum rate right around 1% in British adults. Not "people living in institutions." General population, adults, 1%, right around where the kids are, no epidemic.)
They're also saying that you "sold out to high functioning adults." No. You listened to autistic people. The people who have the closest relationship to autism there can be for anyone. And it's not as if the people who were asking for the change and thanking you for it are all given the "high functioning" label. (No one ever gave me any functioning label, FYI. High is probably the one I'd get, but there is that whole self-inflicted scars thing, and the can't drive thing, and the can't actually do most activities of daily living thing... they seem to care more about verbal ability, though, and I usually speak well?) Anyways, functioning labels aren't as great as they seem because there are too many variables on what kinds of support needs people have, and some of the people asking for and thanking for the change wouldn't get the "high functioning" label by the standards of anyone who uses them. The idea that only someone considered to be "high functioning" could care about language is a fallacy, and one that comes from the old idea that autistic people wouldn't have thoughts or opinions. We do. Saying otherwise is just another way of denying the right of autistic people to speak about autism, claiming that anyone autistic enough to matter is too autistic to speak- that way, only parents matter. Which is, of course, wrong.
So thank you. Thank you for choosing language that doesn't add to the stigma and focusing on actually giving help. Fear tactics tend to work short term but cost a lot long term, and the cost of epidemic language is one the children will pay and that autistic adults are paying. Thank you for deciding not to add further to that debt.



This is the text of the apology they sent, just for reference:

Dear [recipient]

On Tuesday, we sent you an email about autism and we owe you an apology. We called autism an epidemic and some of you called us out on our language. You're right.

Autism is not an epidemic. Autism is not a public health crisis. Simply put, more people today are living with a diagnosis of autism, in large part because our diagnostic tools are better and more available.

In fact, in the next 20 minutes, a family will be told their child has autism. They'll have questions. They may worry about the future. They may feel lost and alone, unsure where to turn for help. This is where Easter Seals comes in.

Every 20 minutes, a child is diagnosed with autism. To help a family living with autism or other disability, make your gift to our Urgent Fund Drive.

Early diagnosis for young children. Behavioral therapy for school-aged children. Employment training for adults. These are just a few of the programs Easter Seals provides that help people with autism learn, grow and live their lives to the fullest. With your generosity, we can be on the front lines, helping as many people as possible get the support they need to achieve their dreams.

Across the country, all of us are doing more with less.

Not every child with autism receives appropriate services, not every adult can find residential and employment services, and many older adults still need assistance to live in their own homes.

With your financial support, we are able to provide essential services to children and adults living with autism so they can live the lives they choose. But there's so much more we could do.

Thank you for your support and I hope you accept our apology.

Sincerely,

Easter Seals

Massachusetts State House Hearing Part 4 (H78)

I was at the Massachusetts State House for the hearing on May 21, 2013. This is essentially my liveblogging of the testimony on H78, except that it gets put up later. This is in four separate posts, the others can/will be found here:

H75
H76

H77 and S23

Lydia Brown's written testimony can be found here.

Trigger Warning: Suicidal ideation, ableism, tragedy/burden talk

H78: An Act to permit the DDS to provide services to developmentally disabled adults. 

 

1^st testimony, same as 3^rd person from H77. They currently can't do much for adults with IQ above 70 (yeah, I'm doomed if I ever want help.) 46 other states have already made changes that are similar to the ones this bill would do. Broad bipartisan support for this bill. Talks about families struggling to get by and parents worrying. (Meh.) People are meeting criteria for developmental disability, and needing help, but are not eligible for services due to IQ over 70. 

 

2^nd testimony: People can lose skills, people can go from 5 days of full time activities to nothing at all. Parents sometimes wind up quitting jobs to supervise (WHY is constant supervision so often assumed to be a thing/people not taught things to not need it? Yes, I get that some people really will need it because of various reasons, but most autistic people can and do get to a point where they don't need it and can be home alone for the day if, say, food is prepared and out. There is generally a workaround for any specific skills.) The bill would determine eligibility based on adaptive functioning instead of on IQ, meaning that there would be more to do with actual needs than before. 

 

3^rd testimony, from I think 1^st person to testify on H77, the database bill. He's on the board of directors for Aspergers Association of New England, and it's one of their top priorities too. He is autistic himself. His resume is good, but it's a veneer that glosses over many issues. He needs and gets help, now, and wishes he had gotten it earlier. It's never too late- one can teach an autistic adult new things, just as one can teach anyone new things. Services, including the ones that helped him, are hugely important. 

 

Note that ID=intellectual disability, DD=developmental disability, I use the abbreviations because I'm not actually a super fast typist. I'm typically using only one or two fingers on each hand, my right hand is just using the index finger most of the time.

4^th: Disability law center person. He's talking about a narrow issue relevant to this issue- where we stand relative to other states in providing services to DD adults. Massachusetts is still trying to fit DD adults into the hole of ID to get services, which causes people to fall through the cracks. Don't just define ID to make it so DD can get in more often, make it so that DD but not ID is still eligible! Found that the eligibility standards for other states were only this picky about ID when there were services meant for those with DD who did not also have ID. Which, if he is correct, means that MA is way the heck behind. Whoops. Considering that disability law is his thing, I'd believe it. (Vermont requires ID or autism, if I recall.)

5^th testimony: Aspergers/HFA can and does still need services. Can meant that showering feels like shards of glass to the head, people understanding words but not intent. Can't cook, clean, etc. It's a thing that happens. 75% not working. It's not "mild." It's just a different set of challenges. Even basic services, helping keep the house together, have food, get employment and keep it, could be the difference between homeless and productive taxpaying citizen. I'm pretty sure that this person is not autistic, but is saying mostly reasonable things, I think.

 

6^th : Addressing needs for supports in DD but not ID, it depends on the state and is kind of a big issue. There are no services for autistic adults without ID in Massachusetts. We often have awesome skills and just needs a bit of help to be marketable with our skills. Except there is nowhere for us to get this help. We age out and that's it. Age out and transition to nothing. A whole lot of people want to be testifying for this, but can't for whatever reason. Some are autistic themselves, some are family members who are full time caregivers. Everyday living skills are a thing. IQ doesn't mean you have them. And someone needs to help when we don't have them. Heck, there are services I could really use help with that fall under developmental disability stuff. (Doesn't mean the way she's saying the things is great, she is kind of tragedy talk in saying this stuff...)

 

7^th: Autistic person. Now only works 3 days a week, looks like it costs money to work, instead of him getting paid. Well, that's an issue. There was a thing that used to have funding, but not anymore as of 2011. If something were to happen to his mother, who is the one paying that money, he doesn't work anymore. Plugs for his show, www.ablevision.org. It apparently did a thing interviewing Temple Grandin. 

Oh, and can we talk about it costing him money to work instead of getting paid to work? THAT'S NOT OK AT ALL. 

 

8^th: Also autistic, started off in public school but needed a tutor. School stopped providing the tutor in 4^th grade, sat in the back. Eventually wound up in a school for emotionally disturbed children, though not emotionally disturbed themself. No one knew what to do with autism. Went to a residential school for a while. Then community program, graduated HS, takes 1 course at a time in community college and gets help living in own apartment. Says they want to die before parents do because they will have no support. (But if getting actual supports could be a thing? That could be different. Please, I hope it could be different.) IQ tested at 71, so no ID support, but the bill would get them supports. Which they really really need. Seems to feel like a burden, and the whole wanting to die before parents do makes me want to take an axe to society for being a load of ableist fails.

9^th: Son has PDD-NOS, does not qualify for services by 2 IQ points, but not fit enough to get services to help him get a job. So he's between the cracks. He needs some sort of support, and doesn't get it. He lists as the first of his good qualities that he's "good at improving," and wants the chance to do so. It's his mother testifying, and I don't think she quite gets the whole "Autistic people can hear you" thing. It's a pretty common issue. Can we stop calling us burdens, thanks? 

 

10^th: Has a 12 year old daughter with Aspergers. High IQ, wants to go to MIT and study neuroscience, ability to function in the world is not so great but she can't get services because high IQ. Social skills are also a difficult area for her, so I'm a bit worried about the social skills training that she's probably gotten and that may well have made it worse. Social skills classes tend to do that, setting us up to get abused and all. UGH SHE JUST CONFLATED MELTDOWN AND TANTRUM IT IS NOT THE SAME THING NO NO NO STOP NO NO NO THESE ARE DIFFERENT THINGS. There was one person who says his life is miserable, he can't get services because his IQ is too high, but he can't work without services. Another bright, articulate person, no services, can't work without services. It's a thing. Maybe it's getting an interview, maybe it's executive functioning, maybe it's cooking, needs some sort of help is a common thing.

11^th testimony is from a mother who is coming in out of order because she is her son's sole caregiver and he's calling her. He's autistic. IQ tests at 71, functioning, social, self care are all things he needs help with. (She said it was at the 2-3 year old level. Um, can we not do the whole mental/functioning age thing? It's creepy.) But his IQ is 71, so he doesn't get services. She's talking about "managing" him and searching for answers, searching for a way to get him help. And there isn't any, because his IQ is one point too high. Talking about "managing" him is also creepy. This mom creeps me out. 

 

12^th: Single low-income parent of two working towards a bachelors degree, her 14 year old son doesn't get services because his IQ is too high. He participates in sports and gets some minimal services, but he needs real services that she can't afford to get. She's trying to keep her GPA up so she can eventually pay, but that's not the current reality. He'll be 18 by then and there will be no supports, joining the 75% of their adult clients who are unemployed. He's awesome, but he needs services to be able to stay out of that 75%. Wow, she's pessimistic about what her son can manage. Sports are better than formal social skills training if he's enjoying them, life skills can be learned later as long as there is someone to teach them. Services are important, yes, but the assumption that he will automatically wind up in that 75%? Working while living at home is a thing that can be done, and it gets around some of the potential issues. 

 

13^th: Commission of families and advocates representative, thinks it's a tragedy that this is a huge problem not being addressed, so many of us need services and can't get them. References a November hearing that he says is much like this one. I hope he's not talking about the federal one. Ok, looks like it might not be because there was apparently not media coverage of that one. Meh. I guess that's a good sign, because he seemed to think that hearing was important instead of being a complete mess. Which the House one was... actually, what kind of coverage did that have? Oh crud, it might be that one, all the coverage I remember seeing was in autism or disability media. I guess I'm not surprised, he did seem to be calling us a huge problem that wasn't being addressed, and that it's tragic how the problem that is us isn't getting addressed.

 

14^th: Shows a picture of a kid, who has a pile of cool traits and is a computer wizard. Also autistic. Needs services. Sounds like he's bolting from his program- I am not so trusting of the program as his mother is, because I know how widespread abuse is in these programs, and people don't bolt from places where they feel safe. Also, his statement was that he was being abducted for one of these- if he doesn't realize that "abducted" is the wrong word for "These people have the legal authority to take me, but not my consent and I don't want to go," that would be pretty telling. Actually, I don't think we have a single word for that. Because it's not considered to be a thing that's wrong, it's considered to be a thing where the person who doesn't want to go is in the wrong. 

 

15^th: Wow this is a lot of testimonials on this bill. Has 3 autistic people in a program with IQ over 70 (Out of 200 autistic people in the program). One of them is 14s son. Still needs help with life, did jump out of a moving van. He just said "mental retardation," which, um, isn't actually a diagnosis anymore. Yeah, little bit not good. It could just be because he's old? Ew ew ew ew ew ew he said it again. Not a fan. I... am a bit more suspicious of the program now than I even was before, listening to him and knowing that he runs it.

16^th: LYDIA of Autistic Hoya yay yay yay. She's Autistic. I know her. Is here in support of all 4 put fouth by ASNE and Disability Law. Notes that she works with ASAN. National standard is to use developmental disability definition, which is what H78 would make happen. It would allow people who need the services to get them. Not broaden the kinds of services that exist, but allows more people to get them, improving standard of living. Urges the committee to report favorably on the bill due to its importance in getting more people access to things they need. The fact that she supports it means more to me than any of the other testimonies I've seen, honestly.

17^th: She's got a son and a brother. Son with formal dx, brother does not. It's a big thing. Typical development and autistic development are different. And supports are needed. He can miss nonverbal stuff. It's not intuitive, and it's hard. Asks "can you imagine?" Of course I can, I live it. It's hard, but it's not unimaginable. Missed part of her and 18^th to talk to Lydia. The thing that squicks me here is the whole "can you imagine?" thing. We are right here. We can hear you. We can do a whole lot more than just imagine it, you're talking about this in a room with a much higher rate of being autistic than the general population and we can understand what you are saying. Why is this so hard for people to get? 

 

18^th: Says we can't fend for ourselves is what I notice as he finishes. We're not poor defenseless creatures, sir, we just have a different set of needs. I know we need to sound oh so impaired in order to get services and all, but really? Do we have to be tragedy talk and pity talk instead of just being frank about what the impairments are, what access needs and what service needs we have?

This bill is important. I want it passed. I also want people to remember that we can hear them and understand them. No, really. We can. Intellectual disability doesn't prevent that, and neither does autism. It just messes with how fast we can process it/which things we notice more, seriously how many times do we need to tell you this?