Note For Anyone Writing About Me

Guide to Writing About Me

I am an Autistic person,not a person with autism. I am also not Aspergers. The diagnosis isn't even in the DSM anymore, and yes, I agree with the consolidation of all autistic spectrum stuff under one umbrella. I have other issues with the DSM.

I don't like Autism Speaks. I'm Disabled, not differently abled, and I am an Autistic activist. Self-advocate is true, but incomplete.

Citing My Posts

MLA: Hillary, Alyssa. "Post Title." Yes, That Too. Day Month Year of post. Web. Day Month Year of retrieval.

APA: Hillary, A. (Year Month Day of post.) Post Title. [Web log post]. Retrieved from

Friday, March 17, 2017

Dear Well-Meaning Autism Mom Looking For A Surrogate Mom For Your Son, Please Don't Assume The Person You Approached Is A Girl Or Straight

Guest post by Elizabeth Rosenzweig. 

So I run an autism meetup. Parents of post-pubescent autistics are not invited. There’s a number of reasons why but one of them in particular has been making the blog rounds: well-meaning but misguided parents who, out of concern for their son’s (and it is always a son, isn’t it?) inability to fend for himself, look to set up a trust fund for him in the shape of a kindly woman savior who will cook and clean and pay his bills for him, forever and ever, amen. The guys themselves can be the problem, too; a person who should be a grown-ass man asks you out and is then shocked, SHOCKED, to discover that you’re just as shit at getting A Job, remembering to pay bills on time, and feeding/picking up after yourself as he is, if not worse. (I, uh, may or may not have very personal experience with that one.)

But I’ve already had two very smart friends I admire address that aspect in plenty of depth, so, well-meaning but misguided parent, let me address another one that you may not have considered.

That long-haired, girl-shaped, pretty, kind person you met, the one you think would look so cute on the arm of your precious manchild (or your precious self), might not actually be a girl. Or straight.
They could be asexual or aromantic - content and whole within themselves. They might be allosexual but gay. They might use she/her pronouns but feel utterly alienated from femininity as a concept. They might be a genderless android. They might be a trans man. You just don’t know!

It’s almost like that long-haired, girl-shaped, pretty, kind person is… hear me out for a second… a person. Not your personal insurance policy, or your uncompensated PCA, or your romantic-comedy-prize, or your glorified German Shepherd, but an entire human being unto themselves, with weaknesses and feelings and ambitions beyond saddling themselves to some cisgendered guy who wants things done just like his mom did them. *They* might be the one needing a PCA! They might maybe sometimes need someone to hold them while they cry hysterically because they foolishly expended all their energy for the day on folding three-quarters of the laundry. (I, uh, may or may not have very personal experience with that one too.)

How do I even address the sexual side of things with you? You, hypothetical mom, have almost certainly had experience with shutting up and taking it while a male partner got his rocks off inside you. Is that how you want your son treating his life companion? Is that how you would want to be treated? I’m certainly sick of it, or worse, being treated as deranged for exploding in frustration after having my own needs go unacknowledged and unmet for years at a time. I got so sick of it that I quit men and went monogamous with an assigned-female-at-birth genderless android. So far, so good. But how would you know that from looking, unless you saw me and my wife together? 

The point is, you don’t consider those things. You think about your own fears, which are visceral and immediate. What will become of my child after I’m gone? When will I have a chance to feel like a person and not a 24/7 PCA - won’t anyone please help me? And those questions resonate so loudly inside your own head that you don’t stop to ask yourself the ones I’ve posed here. That’s not my problem, though, nor is it the problem of any long-haired, girl-shaped, pretty, kind autistic. It’s not fair of you to put your anxieties on us, when we have so many of our own to contend with.

One of the side benefits of running an autism meetup is that you have the opportunity to meet a lot of people of all ages and genders and walks of life. I have quite a few lovely gentlemen who are regular attendees. Let me reassure you, dear, hypothetical mom, that almost all of them have turned out just fine, with the support of agents and agencies who are meant to do the work that you are looking for from that nice autistic at the meetup. It’s actually the ones whose parents have done the most coddling and interfering who are struggling the most.

So please. Stop putting your cissexist, heteronormative expectations on people you barely know, in the name of providing for your own offspring. You’ll start working on real solutions much faster once you do.

Wednesday, March 15, 2017

Please, autism researchers, study these.

Quite a bit of autism research is what I would call, to put it delicately (as in, I am neither screaming nor swearing at it), abled nonsense. I definitely needed to know that my asexuality as an autistic AFAB is a testosterone-related disorder. I also needed to know that I only think I'm trans (nonbinary to be specific) because autism is an extreme male brain. And it is of the utmost importance that I know I am incapable of humor in any form, but especially sarcasm. Autistic satire is definitely not a thing, right?

Oh, wait. All of that is abled nonsense. So is the idea that the optimal outcome is a loss of diagnosis, by the way. I'm most able to do the stuff I care about when I am visibly autistic rather than spending energy on not being so. Dani briefly achieved so-called indistinguishability, an older "optimal outcome" and it was not worth it. (Also I'm the friend.)

I would like to see research that is not abled nonsense. I especially would like to see more of this research being done by autistic people, because no, I don't think we need neurotypical people interpreting the results in order for them to be valid. I'm with Nick Walker here: when we depend on less-marginalized researchers to "discover" our hard-earned truths, we're reinforcing the idea that the knowledge we've figured out for ourselves as a community isn't valid. Which communities get to have valid knowledge?

That said, there are things I'd like to see researched more. Not necessarily in the current structure (because let me tell you, I expect someone like, oh, nearly any non-autistic autism researcher who presented at the Coalition on Autism and Sign Language where I threw myself into a wall repeatedly, to make a complete mess of the topic.) And preferably by autistic people with experiences relevant to the topic.

  1. Inconsistent speech and AAC support for autistic adults.

    I'm an adult. I can speak (usually.) When I can't speak, I use AAC. AAC research seems to be focused on two groups: adults with neurodegenerative disabilities, and young children. Autistic adults who can sometimes speak and sometimes not are neither of those categories, but there's a lot of us. This might be more common than "always has speech" is, among autistic adults, but thanks to behaviorist approaches and the assumption that "can sometimes" is identical to "can consistently" given a sufficiently strong motivator, professional types tend not to get this. I would like to see research on what supports, including AAC, tend to make communication easier/more effective for us.
  2.  Employment supports that are neither sheltered workshops nor "we think they're all good at technology" start-ups that might pay well but are still pretty segregated.

    Sheltered workshops can (and often do) pay below minimum wage. Autistic people, like all disabled people, are more likely to live in poverty than abled people. Are these facts connected? You bet! Programs like Specialisterne, on the other hand, are founded by (usually parents) based on a stereotypical idea of "autistic strengths" that usually means technology work. Or Microsoft has a program to hire autistic workers now. These can be useful, if you're an autistic person who wants to be working in technology. I worked an IT job for a while. It was a good experience in many ways. I also never want to do that again. I like writing. I like teaching. I like art. I've earned money on all these things (mostly teaching) and would happily continue to. These are not the specific jobs you're going to come up with if you're a non-autistic person trying to provide employment support for autistic people.

    So maybe, just maybe, we need to take a look at employment supports that are not limited to a specific kind of job. (Or, you know, look at more kinds of jobs? Because the needed supports will vary based on what kind of job it is.)
  3. Burnout.

    After reaching some ideal of indistinguishability and hanging out there for a little bit, or just after the demands get to be too much even if we were never indistinguishable, we can hit a breaking point. Then everything is way harder, we have way less energy, and our abilities shift. Sensory overload might be more of an issue. What can we do to make this less likely to happen? What supports would help a person going through this? People dealing with this have written about it, both during and after. Getting some idea of what tends to help us vs. what tends to make things worse would be great for anyone who deals with this in the future. Even better if we can help people not have this happen. Burnout is not fun.

Sunday, February 19, 2017

Divergent, Gattaca, and limitations "for your own good"

Last night I participated in the #FilmDis chat about human gene editing and GATTACA. Which, even though it's been a while since I saw the film (I think the last time was in 2010), I have opinions about. It's a film about eugenics, and in a very real sense it's about eliminating disability in most people but creating a new genetically inferior (disabled) underclass that looks a lot like the old one, people who couldn't afford to have their kids genetically selected birth this underclass. So do people who leave their children's genes up to luck. (AKA, the protagonists parents, at least the first time.) But the only person we see in the movie (which is largely about disability discrimination) who we'd discriminate against today? He's got an acquired disability. It's not genetic. And he's the one who's genetically valid, selling his genetic identity and thereby allowing the protagonist to get in the door to his dream job.

And Divergent is a series I have opinions about. I loved what looked like neurodivergent representation in the first two books, except for the part where I knew what was coming: the Divergent are secretly neurotypical and everyone who really fits a faction has "genetic damage" making them neurodivergent. And sure, we build a city in the end where no one really believes in genetic purity vs. genetic damage, but all through the series we're shown the functional superiority of Divergent people: Tris, do your Divergent magic, think like the Erudite and tell us what they'll do! Tris, come in first in initiation and have it clearly be about your Divergence. Or ... your neurotypicality.

So it's probably not shocking that I want to connect them? They've both got genetic engineering and discrimination based on genetic makeup. And I do:

You see, the entire idea of factions in Divergent is about behaviorally conditioning people to behave in ways that takes their presumed "damage" to an extreme, in a way that's hopefully useful. This ... actually reminds me of Specialisterne? More on that later, maybe. They think it's the kindest thing to do, giving people a way to be useful while using their supposed strengths (that are secretly still defects.) It's still limiting people based on an idea of what their potential is, for what is supposed to be their own good.

And several times in Gattaca, we see Anton attempt to dissuade Vincent from his goals, in the name of "protecting" his "invalid" older brother. He should take the jobs that "invalids" can get, not try to go to space as he's always wanted. He should leave the company he works for. He should accept that his genetics really do make him inferior and work from there, for his own good (for his own safety.) And maybe it would be safer. (Isn't it usually safer, at least in some ways, to stick to the paths laid out for you as acceptable?) But this sort of limiting people for their own "good" and to keep them "safe" exists in the real world, for disabled people. And guess what? It's not actually safe!

So in both Divergent and Gattaca, we have people limiting others (or trying to) in the name of their own good. Adults who only want the best for us, hurting us because of what they do not know. (My fear is not of water, and now I remember Vincent and Anton competing in the water. He didn't save anything to get back.)

Wednesday, February 15, 2017

Alyssa Reads Memory Blunting: Ethical Analysis -- Divergent Thoughts

I read "Memory Blunting: Ethical Analysis" by the President's Council on Bioethics, excerpted from Beyond Therapy: Biotechnology and the Pursuit of Happiness (2003) and appearing in Neuroethics: An Introduction with Readings, edited by Martha J. Farah. I did so because I am taking a neuroethics class and we're supposed to show that we're thinking about neuroethics stuff at least a bit outside class. Also because I'm super-interested in how neuro-stuff (especially neurodivergence but really all things neuro-) is represented in fiction (especially young adult speculative fiction.) I'm pretty much chucking my notes (drawn parallels, expressions of annoyance, and the occasional "OK that's legitimate") on my blog because as important as a lab notebook is, I like notes that are typed and searchable. This part is just the connections I've drawn to Allegiant. More later.

The council starts by asking when we would want to reduce the emotional impact of an experience, and why we should/shouldn't in a given situation. Definitely good questions to consider.

These questions remind me of the ending of Allegiant. We have the protagonists wiping the memories of everyone at a government agency in what boils down to self-defense -- the agency was going to do the same to their entire city "experiment." Not that the experiment was particularly experimental, nor was it particularly based on how genetics actually works, though it was certainly eugenic as all heck. So here we get memory wipe as government control over a eugenic project and as self-defense against said government control.

We also see individual level decisions about memory elimination: Four brings a vial to the city with the plan of using it on one of his parents, who are leading opposing factions in what has become a civil war. He believes that if one of them will stop, so will the fighting as a whole (and then maybe the government won't memory wipe the entire city.) He gives his mother a choice instead of using this vial (he doesn't like memory wipes as an act of war/control/defense/greater good) and this winds up working. She agrees to leave the city.
Or Peter: He is cruel. He knows it. He wants to change. He knows people are the product of their experiences and choices to enough of an extent that he'd have a hard time doing this (and therefore just ... wouldn't) without the aid of wiping his memories. He wants to forget himself. Interestingly, he's the only individual-level memory wipe that we see go through. He forgets himself. In the epilogue, we find out that he's still not the nicest of people, but he's not the person he was before, either. He did make a (slightly) different self, and the difference matters. (Things like not stabbing rivals in the eye while they sleep are just slightly important.)

Four/Tobias, again. After Tris dies, he takes a truck and goes into the city with a vial of the memory serum. His friend Christina stops him, because "The person you became with her is worth being. If you swallow that serum, you'll never be able to find your way back to him." And with eliminating the memory entirely of who he had been and what he had done, I even think I might buy this argument. I will, however, note that this would be a complete elimination of memory. This isn't blunting the emotional impact, making a thing you can remember be less traumatic to recall. This is making the event gone, like it never was, instead of softer, so you can look at it instead of needing to bury it. 
And why do I read and understand the neuroethical arguments in dystopian science fiction?

Maybe it’s something you have to be Autistic to see, but all of their storytelling is 
Every writer is making a narrow and overly specified claim about
the nature of social pressure, taboo, deviance policing, human fulfillment, and
the methods by which a person located in a certain sociological position might resolve
     the needs inherent in their system.
When I read, this is what I examine. A writer’s inability to fully represent society
is simply a way of stating their warrants to me, and the individual scenes carry
not only emotional value, but grounds for the conclusions drawn in the depiction
of the change in the main character’s state. All of your fiction is an argument about a
     time and place. (Monje 29)

That's why.

(That's also from The Us Book, which I read and which you should read. Specifically, it's from "Reintroducing Art to the House of Rhetoric.")

Monday, February 13, 2017

Jewish Protest Thoughts

So. Bannon is anti-Semetic. We know that. Threats and vandalism on Jewish community centers and synagogues are up. We also know that. Jewish folks may not be the primary targets (I'm thinking Muslim people are the big-name target of the moment what with the travel ban that is definitely a Muslim ban let us be real, though there are seriously a lot of targets) but swastikas are on display. Which means Jews are on the list.

A thought I am having, therefore:
Drown out Nazi and Neo-Nazi slogans with clearly Jewish sounds:

  • On Tumblr I saw a suggestion of the Shehechiyanu. Which I am probably transliterating terribly, because Hebrew. It's a prayer thanking God for your making it to this moment, used on the first night of many holidays and at Bar/Bat/Bnai Mitzvot.
  • Songs for holidays of the genre "They tried to destroy us. They failed. Let's eat." I'm thinking Hannukkah and Purim, especially. Bring your gregors and drown out Trump and Bannon's names with those, to be especially Purim-like. Maybe give out Hamentashun?
  • Really any song that's in Hebrew or Yiddish that it makes sense to perform at full bellow. 
You see, doing slightly silly things that really piss off the bad guys while making us laugh is a way of (hopefully) keeping morale up. And singing about how some schmuck who tried to have us killed was swinging from the gallows he had built for us, and now we're going to eat pastries? I think that fits the bill. (And nosh some Hamentashen!)