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

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

Wednesday, October 31, 2012

Everybody, someone in NYC who uses a ventilator to breathe is using a backup battery because of the power outage. If you know anyone in the NYC area, have them read this and this. Keeping the battery getting switched every three hours is keeping this person from dying, and they have other needs. Spread this around!

Halloween Costumes

Anyone who knows me offline knows that I pretty much don't do the "revealing clothes" thing, so I have made a decent number of my own halloween costumes since I got old enough that "sexy X" was the norm for girls. Actually, that wasn't even the first time I made my own costume, since Blue from Blue's Clues didn't go up to my size back when I was probably eight and I insisted on being Blue anyways, but the point remains. It's really hard to find a costume meant for a woman (well, I'm actually androgyne, but very few offline people know that since I'll still wear skirts and I don't shout it from rooftops and all) that isn't really revealing.
I have no issues with people choosing to wear revealing costumes, by the way. I am worried that something might happen and that they might get victim-blamed over it, but that's an issue with rape culture and victim blaming, not a problem with the costume itself. What I have issues with is that it's nearly impossible to find something that isn't revealing. Both options should exist, and usually the sexy version is the only one designed to fit women.
Which is why I wound up making for myself. I've been a generic witch using a ground length black skirt, T-shirt, and robe. I've been Hermione by using a Hogwarts robe instead of plain black. (And I made all three Hermione from fabric for the HP7 midnight showing, landing me on the Shanghai news, which the school I was abroad at STILL HASN'T SENT ME THE LINK FOR. I was Alanna the Lioness from the Tamora Pierce books, homemade except the red wig. And then I was a knight using homemade chainmail. It was awesome. It was also a lot of work, and not everyone can do that. It was a lot of time, too, also something not everyone can do. The inability to find a costume that isn't revealing is a product of sexism. (Personally wanting one that is revealing may or may not be related to sexism, but the near non-existence of ones that aren't is very much related.)
(Sorry if you thought you were getting something about Halloween costumes that work with sensory processing issues. I make my costumes using fabrics I can comfortably wear and that's really all there is to it for me.)

Tuesday, October 30, 2012


Look at me!
Look at me when I'm talking to you!
Look me in the eye!
Look, look, look.


That's what people do.
So I know you're paying attention.
Just because.
Look, look, look.


You're a person, do it!
Pay attention. Look at me.
Look, look, look.

I can't pay attention and look at the same time!
Too much, too much, too much.

Don't be a liar.
You can. Everyone can.
You have to.
Look, look, look.

Why is it so hard to listen to what you hear?
Why am I the one with the problem when it's you who won't listen?
Why does you not understanding make me a liar?
Why, why, why?

This is my 200th post. Woohoo!

Monday, October 29, 2012

If They Had Known

Trigger Warning: This is about what I think would have happened if people had known, which means I'm talking about therapies that are abusive.

If they had known, everything would have been a symptom. When I bubbled over with math (yes, my longest-running special interest is math) in the car, asking and asking and asking questions into multiple digits, it would have been a sign of perseveration, of the dreaded AUTISM. Fixitfixitnow! When I played with the same person every day, unless she played with someone else, in which case I played alone? Difficulty forming peer relationships- AUTISM. Fixitfixitnow! I may well have been dragged away from my friend and made to socialize with the others.
People would be told to be my friend, which doesn't work anyways. I would have been resented for it.
When, in first grade, I said that five was the cube root of 125 instead of one plus four or two plus three or six minus one or even ten divided by two like the "showoff" did (yes, I really did say cube root of 125) it would have been a failure to pick up on social cues (AUTISM. Fixitfixitnow!), which yes, that was part of it, but it was mostly because I was bored. Even less than the nearly nothing that I got would have been done to deal with the fact that in math, I was bored.
There would have been therapy to help me do what I wasn't really interested in anyways.
My preference for Tinker-Toys and Legos and Lincoln Logs (but mostly Tinker Toys and Legos) over dolls would have been (take your pick)
  • Failure to learn gender roles because I don't get social cues, so it would have to be taught. 
  • Lack of varied and spontaneous social imitative play (not sure how one fixes this or why we need to)
  • Inappropriate play, since I mixed the Tinker Toys with the Legos and that's not how they were designed.
  • Lack of interest in social stuff, since, well, girls play dolls with other girls, so it's social.
You know what that means- AUTISM. Fixitfixitnow!
And we haven't even gotten to the flapping yet.
In third grade, when we played Round The World, when I answered, I jumped and flapped. It wasn't intentional. It just came out, and thinking about not doing it would have slowed me down in answering, so I didn't, mostly. I actually did get bullied over this, since it was obvious and different, but I didn't have therapists and teachers "working on it" with me. No one did therapy to try to make me stop, and they would have, I'm sure. Because it's AUTISM.  Fixitfixitnow!
The hiccups that still make me jump sometimes would have been somehow my fault, I'm sure. (Perhaps they would have been the reason I went gluten free? That would have stunk- I practically live on pasta and milk right now.) It's actually a matter of physics- my hiccups are unusually forceful, and still change my momentum significantly now, with twice the mass I had then. No amount of therapy can override physics, but I'm sure they would have tried, and I'm sure they would have denied that it is, in fact, a matter of physics. No, it would have been AUTISM. Fixitfixitnow!
When I fidgeted (and oh, did I fidget!) they could have done more than just take my fidget toy (which they did, once up to an including my pen!) They could have done therapy (read: abuse that they call therapy) to make me ashamed of my fidgeting, to make me feel like it was wrong, and to probably still fail at stopping it.
There would have been accommodations, but not the ones I wanted, not the ones I needed. They would not have included being allowed to do something with my hands during class so as to pay attention better, nor would they have likely included what essentially amounted to ignoring prerequisites in high school so as to skip Geometry, Algebra II, and Physics II and take the higher level stuff I really wanted to take. They would have started that later, if at all, as opposed to the earlier I wish I had gotten. They would have cared more about my trouble with social skills. Because it's AUTISM. Fixitfixitnow.
And it wouldn't have helped. People having known that I'm autistic would have been actively bad, and I know I'm not alone in this.

Sunday, October 28, 2012

Memorizing the Sears Catalog

Once upon a time, there was a girl named Hillary. She didn't learn to talk when people expected her to, and so her school put her in a special classroom and didn't even try to teach the girl who didn't talk. At home, she carried around a Sears catalog. This is from the time when Sears catalogs had everything and were about the same size as telephone books, but no matter what word she wanted, she could find it pretty quickly. That's how she "talked"-she flipped through that catalog and pointed to words, and it was clear that she had either memorized the catalog or come close to it.
The school still did not try to teach her. They assumed she could not be taught, that she was unintelligent, simply because she did not speak. She was made to feel like she was not one of the "real people." They ignored the evidence that said otherwise, that a girl who could independently figure out that a Sears catalog had the words she needed and then learn it well enough to quickly find words had to be smart. Can you imagine memorizing where to find those random words that are only in the catalog once because of an advertisement well enough to build a whole vocabulary and communicate everything you want? She did it.
Eventually, she did learn to talk. I think she was eight? She had other disabilities, including a variant of hemophilia that landed her in the hospital on a semi-regular basis, and as far as I know she was in some sort of special education for the entirety of her schooling. (Presuming competence was not something that schools tended to do at the time, and recent events show that educators still have pretty significant problems with this.)
She learned sign language and braille, spending much of her life advocating for people with disabilities. She's the reason that my middle name is Hillary. We can't know for sure, but it seems likely that she was autistic, which would be another thing we have in common. (We know she had some sensory processing differences that led to her disliking loud noises and that she had a speech delay, which is enough for me to be suspicious given that autism often runs in families and I am definitely autistic.)

Saturday, October 27, 2012

(Not) Helping

How would you feel about someone who did that/said this to you?

I’m going to help you with a jigsaw puzzle except what I’m actually going to do is eat the pieces and you’re going to be like “Hey please stop you’re doing it wrong,” but I’m not going to stop because I’m HELPING YOU and you should be GRATEFUL.
 The tags on it suggest that it's making an analogy to some allies, and, well, it's a good analogy for a certain autism charity...

It's what's happening.

(Not) Helping

We're raising awareness and you should be grateful for this.
We're telling the world about what you go through, and you should be grateful for this.

You're making the world fear me, and I want you to stop.
You're telling the world how hard it is to deal with someone like me, and I want you to stop.
You're saying little to nothing about how to actually help me.
You're saying little to nothing about what I need.
You're trying to fit me into a mold I was never meant for, and I want you to stop.

We're helping you, and you should be grateful for this.
We're doing what's best- you just don't understand what's really best for you.
You should be grateful.

Friday, October 26, 2012

Calling People The R word

I did write this myself, but this is not the original post of it, which can be found on the ASAN site here. (Yes, I'm that Alyssa.)

Trigger Warning: R-slur as an insult, discussion of such (censored except in quotations and in a screen shot.)
This is how we begin, sort of:
Ann Coulter's tweet reading, 'I highly approve of Romney's decision to be kind and gentle to the retard' which was posted shortly following the final 2012 presidential debate.

I say sort of because this isn’t really a beginning, it’s a reflection. It’s a reflection of what we as a society think of people with developmental disabilities. If people didn’t think that having an developmental disability made you inherently worse than or less than, we wouldn’t have the problem we currently have (that developmental disability is consistently used as an insult).

This isn’t an isolated incident. Ms. Coulter has a history of using r—– as an insult in tweets, and she is not alone in doing this sort of thing. has an article called “Top 10 Most R—– People of All Time,” for example, or we have Rush Limbaugh, who we can always count on to say something offensive, commenting about the firestorm around the chief of staff calling someone r—– that “calling a bunch of people who are r—–s, r—–s” isn’t a giant insult, using r—– as an insult yet again in defense of the word.

Or we can look at our current President, who said he bowled “like it was the Special Olympics or something” back in 2009. He has long since apologized, but the fact remains that a comparison to people with developmental disabilities is seen as an acceptable insult by many, including Ms. Coulter, who said “The only people who will be offended are too retarded to understand it,” in response to criticism of her recent tweet.

Of course, that isn’t true. As John Stevens, a man with Down Syndrome, notes, using r—– as an insult assumes that “people would understand and accept that being linked to someone like me is an insult.” People, then, are expected to understand that having an developmental disability is inherently bad. That’s what using r—– as an insult says, and that’s the real problem, I think. It’s not that comparing or linking a person without an developmental disability and a person with one is bad, it’s that the societal assumptions which make this an insult (the ones that say people with these disabilities are inherently less) that are bad and make using these comparisons as insults both possible and horrible.

And as a society, we do hold this group to be inherently less.
People with developmental disabilities are treated as less than. Guardianships, where a person is considered perpetually a minor, exist, and many states allow for people in guardianships to be prevented from voting, be it by judicial order or by decision of the guardian. Having been ruled mentally incompetent (often for reasons like developmental disabilities, including autism, though mental illnesses are also used as ways to take away control of  a person’s property or life decisions) is an automatic disqualification from voting in some states, while in others inability to vote is a separate decision. All in all, thirty of fifty states plus Washington, DC have regulations that allow a person to be disenfranchised on the basis of “mental incompetency,” which includes for developmental disabilities.

People with developmental disabilities are also more likely to be abused, more likely to be denied organ transplants (until recently, a developmental disability was listed officially as a contraindication for transplants!), more likely to be denied other life-saving care, more likely to be victims of hate crimes.

When we call people r—–s as an insult, we are reinforcing the concept that people who have developmental disabilities are inherently less, that being compared to them is insulting, that they deserve to be treated with the sort of ridicule we are attempting to treat our insultee with. None of these concepts are OK, and that’s why calling someone a r—– isn’t OK.
This post has been added to the February 2014 T-21 Blog Hop.


Thursday, October 25, 2012

Checkers part 2

I actually played out this checkers versus chess thing. Checkers played "white." Checkers also got creamed. Badly. It took 16 moves for chess to take 12 pieces.

checker g3->h4        e5
checker h2->g3        c5
checker c3->b4        xb4
checker a3 jumps to c5    bxc5
checker e1->d2        Qa7!
checker c3->d4        xd4
checker e3->f4        Qxa1
checker d2->c3         d3
checker f4->g5        Qxc1
checker g3->f4        Qxf4
checker b2->a3        Bxa3
checker g1->f2        Qxf2
checker c3->d4        Qxd4
checker h2->g3        Qxh4
checker g3->h4        Qxh4
checker g5->f6        Qxf6 wins

Basically, it looks like my analogy is reasonable. If an autistic and a non-autistic go in with the non-autistic aiming to hurt the autistic in the social dance, it's probably going to work.


Never, never, never.
It's all I ever hear.
Never live a normal life.
(Normal is overrated.)
Never have friends.
(But I do.)

Never, never, never.
That's why I must be a tragedy.
Never go to parties.
(Loud. Crowded. Why do you lot think parties are so great?)
Never go to college.
(Triple major. You were saying?)

Never, never, never.
I couldn't understand unless I knew him.
Never have a girlfriend.
(Does he want one? Would you even let him try?)
Never have a boyfriend.
(You do realize that gay autistic people exist, right?)

Never, never, never.
It's why we need a cure (for ignorance!)
Never live on his own.
(Why are we obsessed with living alone?)
Never have a job.
(You don't know that.)
Never, never, never.
It's all I ever hear.
Never be independent.
(And you are? Truly? I doubt it.)
Never be what was expected.
(And that's your fault, not his.)

Wednesday, October 24, 2012

Apparently I am on the first page of Google results for a few things

 Trigger Warning: Some of the search terms are triggering with ableism/cure stuff. Most of the linked posts also have trigger warnings.

Basically, I am amused by statistics. Also sometimes by how people find me.


Sometimes, when I let people know that something they did was probably not a good idea, they react badly. That's probably more than half the time, actually. But sometimes? Sometimes people are actually willing to listen. Right now, that's what I'm looking at. It's not to give them cookies- there will be no names here, good or bad. It's to give proof that reacting properly really is possible and really has been done.
  • One person posted a picture of their young cousin, talking about how great he was, but included the full name and mentioned the fact that her cousin is autistic. I let her know that the right thing to do would be to get rid of the full name, since you can't possibly know what a six year old will or won't someday be able to do, and that Google being able to out him could some day be a problem. I used the example of "If I judged what you could ever do off what you could do when you were six, you'd laugh, right? So why does it make sense when the six year old is autistic?" and she listened. She actually deleted the whole post and let me know that she fixed it and understood why it could be a problem.
  • Another had been planning to do a walk for Autism Speaks. I showed them a budget report, explained that no matter what they thought was the way to help autistic people, if they wanted to help autistic people who were already here, Autism Speaks was not the way to go. They were genuinely shocked to see the anger at the group, and if I recall they signed up to do a 5k for Doug Flutie instead.
  • A friend of mine had been raising funds "for autism" and hadn't made a final decision on what charity to give to. He had been leaning towards Autism Speaks, since they are the best known. Here we had another case where I explained what was wrong, and he listened. He didn't call me "too high functioning to understand," and I think he went with Doug Flutie as well.
  • The person who grabbed my hands when I was flapping and had the conversation about how I didn't have to flap? I did wind up explaining what my reasoning was as why grabbing the hands is a really horrible thing to do. She apologized. She hasn't said a word about my flapping since. 
So yes, there really are people who can do the right thing when the problem is explained. That's what gives me hope, and that's a big part of why I try.

Tuesday, October 23, 2012

Wish for Autism to not Exist? That's a Problem

I saw a post on Tumblr stating that you should reblog if you wish autism did not exist, and it basically said that you were a bad person if you didn't reblog. On the same post talking about how cool her autistic brother was. 


And no, autism is not a detachable something where I would be the same person without it. And that means that a "cure" would include a price I am not willing to pay, even if it did mean that I never lost speech at a critical moment again in my life and I didn't ever melt down from sensory overload again in my life.
Wishing for autism not to exist is wishing for autistic people not to exist. It is wishing that you had a different brother. 

A specific autistic person wishing to not be autistic is a specific autistic person deciding that becoming a completely different person is a price they are willing to pay in order to not deal with the things autism makes more difficult, and that is a completely different issue than someone who is not autistic wishing to make someone else a completely different person. The person wishing to cure themself has the right to that, and the person wishing for autism to completely not exist is speaking over the MANY autistic people who would not pay that price, which is not something anyone has the right to do.

Everyone has the right to not wish for autism to no longer exist, because guess what? The statement goes much to far! Wishing that an actually voluntary cure existed, that autistic people could refuse without fear of losing the help they are currently getting, without fear of the refusal being used as evidence of being mentally unsound with which to take the choice away, and without fear that a family member (including a parent if under 18) could override the refusal? That's fine. Under those circumstances, I don't think there would be much argument from the actually autistic. Wishing for autism to not exist? That would require curing people like Amy Sequenzia, like Neurodivergent K, like Autistic Hoya, like Just Stimming, like Henry, like (insert any other autistic person who has ever expressed a desire not to be cured), and like me, whether they would rather refuse or no. That is entirely unacceptable. Wishing for autism to not exist is unacceptable to many, many actual autistic people.

Autism is not like cancer. Autism does not kill. (Epilepsy is not autism. Many autistic people also have epilepsy, but epilepsy is not autism, and there is no reason to believe that curing the autism would cure any of the other medical issues some autistic people have by extension.)

Monday, October 22, 2012

Night of Too Many Stars

No, I'm not watching it. (Or I didn't watch it? Apparently it will have ended by the time this posts.)
I know what it is.
It's a night when lots of stars will go on stage. They will raise money for an autism group that isn't actually Autism $peaks, but does work closely with them. This group doesn't listen to autistic people either.
They might get another couple autistic kids on stage with them, but these autistic children will all be cute little kids.
They will talk about curing these kids of the way their brain is wired.
They will talk about wishing autism did not exist. That's highly problematic. I talked about it in what will be tomorrows post. Suffice it to say that wishing for autism not to exist is wishing for a whole bunch of people not to exist and ignoring the desires of quite a few autistic people.
Basically, this covers it:

(Image is the Brace Yourselves meme. Says “Brace yourselves, the inspirational porn and curebies are coming.”)
So, have some explanations of why that is accurate:
"Inspiration porn" is kind of insulting to actual porn, which, while the industry surrounding it is messed up, I don't have a moral issue with it as long as the people pictured within have consented to being so pictured and no monogamy issues are coming up because of it. Inspiration porn, however, is a problem.
Basically, it's when someone without a disability uses a picture of a person with a disability doing something that's usually pretty normal and captions it with something about how inspirational it is that this person with a disability can live their life (not really the point of living our lives, and makes us feel obligated to be inspiring all the time) or talking about how the only disability in life is a bad attitude (blatantly false and very shaming to people who actually have disabilities, especially invisible/hidden/unnoticed ones.) The problem is not with going "oh, hey, this person with a disability is doing something cool." The problem is with the ways that the perspective on disability that it supports is problematic. Very problematic.
"Curebies" are a (derogative) term for the people who love their autistic (insert relation here) oh so much just the way they are and think they are perfect, but talk loudly in the same post about how they want to cure autism and how they wish autism didn't exist. Cureby also tend to invoke functioning arguments when autistic people state that they do not wish to be cured, generally also ignoring statements that contradict the idea that these autistic people are the stereotypical high functioning blogger. And, of course, these are the people who support Autism $peaks. That person who Neurodivergent K had her wonderful (sarcasm, by the way) experience with while protesting at an Autism $peaks walk was almost certainly a cureby. Curebies and autistic people who do not personally wish to be cured tend not to get along.
And with the Night of Too Many Stars having just played and apparently airing again several times from now until Wednesday, there will probably be many, many posts that are one or both of those two things in the autism tag on Tumblr, where I found this. There have already been a lot because Katy Perry sang with an autistic 11 year old girl before the main event and will apparently be doing so again. Since plenty of actually autistic people call out people who post problematic stuff in the autism tag (one of the few tags where people can "tag their hate" and somehow think they won't get called out for it,) there is now a Brace Yourself meme for it. I did not create it. Tee-m-kris did.