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

Tuesday, April 30, 2013

Yes, That Too Celebrates 1000 Ausome Things #AutismPositivity2013

AutismPositivity is back!
I was pretty new to the blogging thing when it came around last time, but I did find out about it and write a thing. And some of the stuff I talked about then still fits now!
So in list format, cause I like lists, have ten of my Ausome things:
  1. As long as speech is working and I know the topic, I can do some serious damage in a debate. Like there was that time that I showed up to a debate in my Honors communication class not having done any of the research, not having any evidence to cite, nothing. I won that debate. I did so by explaining why every piece of evidence my opponent brought actually supported my opinion. I am not even joking, this is a thing that happened. When I got the rubric back, my opponent had more evidence, better evidence, was better prepared, but I still won the debate. That's what the teacher's grading said.
  2. Stimming is THE BEST THING EVER. It can just be made of awesome (ausome) or it can be a coping mechanism so I can manage even when everything else is made of bad. Either way, useful. Silky blankets are a really good example of this, since they can do both of these at the same time. Same goes for olives. The sensory processing differences that make certain sensations horrible are frustrating, but I wouldn't get rid of them if it meant losing the differences that let me stim. Sorry, no, stimming is too awesome (ausome.)
  3. Special interest, Autistic Obsession, whatever you want to call it. It's a hug for my brain. So math spent a long time as a hug for my brain, and I was able to get really good at it, too. Like, I'm twenty and I've already got a bachelors in math, I'm a first semester masters student in that major now. (Still an undergrad in mechanical engineering and Chinese, my other two majors. I didn't quite break eCampus, I just have two records in it both connecting to one account and confusing my advisers.)
  4. Pattern recognition! I find all the four leaf clovers, all the five leaf clovers, and some of the six leaf clovers. I also found a seven leaf and an eight leaf, but only one of each. It's quite awesome (ausome.) I actually think in patterns, but through language. If that makes sense? I don't know, it's how my brain works, which is kind of weird and kind of awesome (ausome.) Which finds me four leaf clovers, which is probably responsible for a good bit of my math ability, which is probably also relevant to my sewing ability. (I can't read a sewing pattern, but I can make clothes that fit me and look good.)
  5. Pattern making! That's where Because Patterns came from, after all! (BTW, ONE LAST PLUG FOR THE GIVEAWAY. Today is the last day you can enter and vote on entries. It's on Facebook, it's for an artist proof of my Autism Acceptance design, entry requires liking Because Patterns on Facebook and answering what Autism Acceptance means to you. Yes, you can hang a proof up. It's like a print in almost every way- same size, still signed. Coloration could be a little different, it says proof where the number would be. That's it.) Anyways, have a pattern! Because patterns are one of many Ausome things about my autism, and they are a pretty cool looking one too. I think that this pattern would totally be modifiable to make an infinite tessellation, too, which is a thing I've been getting into making mode of. Those ones work for fabric, after all.
  6. I can listen to the same song on repeat for weeks and not get sick of it. Talk about patience! Recently, it was Knights of Bostonia.That one started about a week before Patriot's Day, and I only switched to Amy MacDonald songs this past Saturday.
  7. I can eat the same food for years and not get sick of it. No, really, I brought the same lunch to school from fifth grade through tenth grade every day except Passover and some field trips and it was fine. I took a bagel with lox (lots of lox, it was almost like a roast beef sandwich amount of lox I am not even joking,) an apple or two, and a big thermos of milk to school for lunch basically every day. The thermos was 16.9 oz, and my cross country coach was annoyed that I still drank milk on meet days instead of switching to water, but switching my diet would mess with me more than milk that I am used to having in my system possibly could. Also, this was the same coach who thought that you shouldn't drink too much right before the meet because then you would get cramps. Which can be caused by dehydration... Anyways, I can eat the same food for a long time and it's fine. Which is useful when on a budget, since buying in bulk is cheaper. It's also useful because it means I don't need to remember as many recipes.
  8. My brain works really fast sometimes. That's what covered me for all my years of executive dysfunction, which is the same as all my years. Sure, I might not remember I had homework due first period until I was on the bus, but I could still get it done by then. I think my record was having something due in all five of my academic classes and drama (seven period day that day,) starting on the bus to school, and turning in everything on time. I can be that fast. I was close to that fast on a regular basis throughout middle and high school. I wrote a paper on 1984 in about 4 hours once, including the research for it. It's on my blog, somewhere, and it gets me hits from people looking for essays about 1984 every so often. 
  9. My writing is proof of "You can totally write good poetry without much of any metaphor." Because I don't metaphor much, but people still like my poetry. I won't claim all of it is good, but certainly some of it is. One of my poem-ish things is actually published in the Loud Hands anthology, which I'd say is a sign of some sort of good. I'd say making (one of many) proofs of this concept is pretty awesome (ausome.)
  10. I'm immune to culture shock. See, so far as I can tell, culture shock is "Everyone is doing stuff that doesn't make sense!" combined with "I feel like a foreigner!" and possibly a dose of homesick. I'm not sure why I don't really get homesick, but when the first two things are just a part of every day life, they can't really cause a shock. So I get to China, or I get to India. Sure, people are doing a different set of things that don't make sense, but it's not like it makes less sense or anything. I just need to learn this set of rules. It's nothing special, nothing particularly scary, nothing shocking. So I am immune so culture shock, and autism totally gets the credit for that. It's pretty awesome (ausome.)

Monday, April 29, 2013

1000 Ausome Things #AutismPositivity2013 Flashblog Announcement

This is tomorrow. Just saying.

AutismPositivity2013buttonWe know you have been waiting… and we have been working and organizing behind the scenes. Now we are ready and we are excited to announce the theme for the second annual Autism Positivity Flashblog Event on April 30th, 2013: “1000 Ausome Things #AutismPositivity2013″
Last year hundreds of bloggers came together in a show of support and solidarity in response to an anonymous person’s Google search “I wish I didn’t have Aspergers”. The posts that came flooding in from all over the world were a beautiful example of the power of strength in numbers. With so much negativity still surrounding Autism and the misinformation and misconceptions that continue to abound, we invite each of you to share one, or two, or more “Ausome” things!
We invite all of you, anyone who is Autistic, anyone who has an Autistic person in their life and all who blog about autism to share a message of support, wisdom, hope, and pride to this year’s flashblog by posting to
Please join with us on the last day of Autism Acceptance Month – April 30th, 2013 – in a Flash Blog of Autism Positivity.
To participate:
1. Publish your post on April 30th in the following title format: “ [Your Blog] celebrates 1000 Ausome Things #AutismPositivity2013″
2. Share your post on Twitter, Facebook, and any other social media site using that hashtag (#AutismPositivity2013)
3. Add your link to the Autism Positivity website and grab the badge.(submit here or above)

4. Share/reblog this message to your blog, page, etc.
cropped-autismpositivitybanner3.jpgThank you,
The Autism Positivity Project Flashblog Team, 2013
If you have any questions, please contact us at
Please also support this project on facebook, pinterest, tumblr, and twitter! AUSOME!!

Sunday, April 28, 2013


Ladle is a fun word, have some echolalia mixed with ladles. Also known as "Alyssa is echolalic sometimes, and mixed echoladling (echolalia of ladle) with songs sometimes."

I have a little ladle,
I made it out of steel,
I have a little ladle,
It needs to help me deal!

I have a little ladle,
I made it out of dreidles,
And when it's dry and ready,
Oh dreidle I shall ladle.

I'm a laaaaadle to you,
I laaaaaaadle to you,
Yes I'm a ladle to you.

Do rhymes with clue!
Do clue do clue do clue do clue do clue do clue do clue do clue do clue do clue do clue do clue do clue do clue do clue do clue do clue do clue do clue do clue do clue do clue do clue do clue do clue do clue do clue do clue do clue do clue do clue do clue do clue do clue do clue do clue do clue do clue do clue do clue do clue do clue do clue do clue do clue do clue do clue do clue do clue do clue do clue do clue do clue do clue do clue do clue do clue do clue....
(My friend who was watching as I rocked, flapped, and repeated do clue probably about that many times maybe more, commented that we should record that and inform every parent who wanted a gifted kid that this is what they were volunteering for. Which is amusing. And kind of true, since they only specified gifted, not that the kid had to be just gifted and nothing else.)

Some things are meant to ladle,
Some things mean more than they ladled to meee
Last year was incomplete,
This game will end the same unless I ladle,
Found the ladle frame,
No ladles there just a lonely spoon,
If I still felt the same it'd be a ladle....

None of the songs I modified are originally mine. Two are old PONS songs (like, from when their website was on kind of old,) two are variations of the dreidle song. 

Saturday, April 27, 2013

Reflection On A Day and Autistic!Annie

Yesterday was my diagnosis day. I didn't get a cake, sadly (the only bus I could take to get to the bakery before it closed would have involved getting back to campus late for Ultimate,) but I got ice cream. And I got to hang out with an Autistic friend of mine. I also got to write the beginning scene (or most of a scene) from an Autistic!Annie fanfiction for the Hunger Games universe. Specifically, it's covering Annie's Games. And a little bit before. I am horrible to my characters, by the way.

So here's what I have so far.

“Annie Cresta.”
No. Sometimes she heard stuff wrong. This had to be one of those times. It had to. She closed her eyes, held her breath. Around her, her classmates pushed at her.
“Annie, open your eyes.” “Annie, move.” “Annie, that’s you.”
She couldn’t process it all, but that wasn’t a new feeling. Autopilot. One foot in front of the other, to the platform.
Or dais. I could call it that too. Dais is a fun word. Dais dais dais. Maybe if I just keep repeating dais I can stay calm. No outbursts in front of the whole nation, I’m going to need sponsors if this isn’t just a nightmare. A really realistic one. I’m probably awake. No outbursts, no outbursts.
“Kellun Cresta.”
Her younger brother. Please be a nightmare, please.
He walked towards the platform (dais dais dais) as if in shock.  He probably was in shock. She was probably in shock too, come to think of it.  And reacting would be a really bad idea
Angela, the woman from the Capital who read the names, was talking again. People were clapping. It was loud. She and her brother were to shake hands as fellow tributes. They did, but couldn't look at each other. How could they?
An hour. That's how long their parents had to say goodbye to the both of them. They split it, half the hour for each child.
And then the train.
"The names. That's not a coincidence, is it?"
"No," Kellun said. "Annie is my older sister."
"Try to get him out alive, please."
"I'm supposed to protect you, I'm your brother!"
"I'm the older sibling. I'm supposed to protect you."
He didn't say anything more. Neither did she. Either was willing to sacrifice themself to save the other, but neither wanted the other to do so. They would work it out in the arena, one way or another. She hoped that they wouldn't be the last two left.

Friday, April 26, 2013

Diagnosis Day

I have seen some Autistic adults who were diagnosed as adults celebrating their diagnosis day as a sort of a second birthday. Well, this is my diagnosis day. One year ago, I got confirmation, officially, from a licensed professional, that what I've known/suspected for a long time really is the case. I actually am Autistic.
There's a community. I'm a part of it, now, and it's wonderful, truly. We do things like take April and put our own things in it, we do things like Autism Positivity, we just hang out together and be Autistic.

Trigger Warning for abuse/murder on JUST THIS PARAGRAPH.
I wish we could do that more often. We are drawn together by the necessity of people attacking us, attacking our rights, denying our humanity, abusing or killing one of our number, far too often. But we do come together for that, and it's important.
End Trigger Warning

We make plans. Fun ones. Like an Autistic Encyclopedia, like consulting groups, like anthologies, like websites of art and literature, like an Autistic Literary Journal. (Possibly to be called "The Spoon Knife and Bladle." I think that would be a good name.) Like communal living where Autistic people help other Autistic people, since our exact strengths and weaknesses vary enough that it would totally work. (And contemplating the idea of advertising it as a residential placement so that we can get Autistic kids from the next generation that way too and keep them out of the real institutions. It's win-win-win: We get money, the people getting placed get a community that thinks Autistic is totally fine, the parents who didn't want to deal with their kid don't have to.)
And we even make some of these plans happen. Loud Hands happened. Autreat is a thing. AutismPositivity is a thing. We got Google to remove the autocomplete suggestions that were hate speech. (WE did that. Autistic people made that happen, don't ever let anyone tell you different.) We have a culture, and we have traditions. And we take our diagnosis days to think, when we can. (I've got a take home exam due, a project due, and two online quizzes, none of which I started or prepared for, so iffy on my "can," but blast it I will do something for my diagnosis day. Maybe I'll track down an Autistic friend and some cake or something. Maybe ice cream.)

Thursday, April 25, 2013

Draw ALL The Patterns!

I'm tired. I'm plugging for Because Patterns today, it's a thing that I do and it's art stuff and it's cool and I make stuff.

I've got an Autism Acceptance album, and every day I'm adding another way that I drew an Autistic person flapping. This will go past the end of April, it goes until I'm out of ideas and then I add the old ones colored in. By then maybe I've got some more ideas!
So far, these are the pictures in it:

There will be more.
And I'm running a giveaway, too, using an Autism Acceptance design.
It's this design:

All entering requires is answering what autism acceptance means to you. There aren't a lot of entries right now, not a lot of people voting either. I'd like to see that change, please?

Oh, and I totally do stuff that isn't autism-related, too.
Like this, it's meant to be a trim at the edge of a skirt or something.
Starting to work with designs that will tessellate to cover the plane, too. Here and here are the two I've got up so far.
And I made a CafePress, a Facebook shop, and a Spoonflower, though I can't sell anything from the Spoonflower yet since I haven't proofed the fabric.

Wednesday, April 24, 2013

For Ashley, And Those Like Her

Trigger Warning: Mentions of abuse, murder, neglect of people with disabilities, presumptions of incompetence.

It wasn't an isolated incident when a nonspeaking woman was left in a hot car while her caretaker gambled. It wasn't an isolated incident when a court found that keeping autistic children in a cage wasn't illegal. It wasn't an isolated incident any of the times a person with a disability was neglected or abused or murdered by a parent, by a caretaker, by the very people who should be protecting us from those things. And what happened to Ashley isn't an isolated incident either.
She was beaten up, rather badly. Seven people were charged. They are out on bail. Some of those charged are living with Ashley's grandmother. There is an ongoing investigation. Details. If we get too caught up in them (you can find them in either of these two Facebook groups,) we can lose sight of two very important things, the two things we need to be focusing on.
In the big picture, we need to treat this like the broad issue it is and find ways to stop it. In Ashley's specific case, we need to make sure that she is safe and happy and that her rights are being respected.
When disabled people are abused, it is often ignored. Ashley's case has not been ignored as completely as many cases are- we know about it, and arrests were made. But it is often ignored. The broad change we need is that these cases are not ignored. The small scale change is that this time, there is an active investigation, this time it is not ignored. This is important.
When autistic people do not have oral speech, they are often assumed to be incapable of any communication, to have the cognitive ability of a much younger person. The broad change needed is presumption of competence and making AAC part of everyone's plans. The small change needed is finding a way that Ashley can communicate in ways others understand. If that means we learn her language, if that means we remember that behavior is communication, if that means that she gets an AAC device, it needs to happen. (I think all these things should happen, starting all of them now.)
When incompetence is presumed, rights are lost. Ashley is 22, but she is not allowed to choose who she lives with because she is considered a minor. Her guardians can make those decisions for her. Legally speaking, abuse by a guardian seems to follow similar paths to child abuse by a parent, so that needs reforming too. On the broader scale, it needs to be easier for anyone in any abusive relationship to get out, even and perhaps especially when the abuser is a guardian or is being protected by the guardian. In Ashley's case, she needs to be protected from the people who abused her and those who allowed it. Remember, it is likely that she was also neglected before her case came to light. There are so few pictures of her smiling and happy before, which is, at the least, a sign of problematic attitudes towards her.
In the big picture, the alternative to living with parents is often assumed to be an institution, a residential placement, a group home. (Different names, different trappings, similar ideas.) Incompetence is assumed, control is everywhere. This needs to change. There need to be more options than parents who may be abusive and residential placements that are designed to be manipulative and controlling by their very nature. In the smaller picture, Amy Sequenzia lives with a friend. In the small picture, living with an employer who is also a friend is what Jenny wanted. In the smaller picture, Ashley should be allowed this sort of option- living with a friend who cares, who will presume competence. In the bigger picture, that sort of thing should be on the list of options that everyone hears about.
For Ashley, the smaller picture things, the things specific to her case, have to happen. For those like her, we need to change the big picture. The ideas that make this sort of abuse seem justified or make people think of these as isolated incidents need to change. No one else should have to go through what Ashley is going through. 
These aren't rare and isolated incidents. They should be, but we can't treat them as such until they are.
This is about Ashley, and this is about everyone like her, and it is about everyone who could be like her.

Tuesday, April 23, 2013

The Autistic Eagle Survey

Autistic Eagle did a survey thing over on Tumblr.
And I'm going to answer here because why not?

  1. Are you autistic?
  2. Do you know autistic people socially?
    Yup. I was friends with Lydia of Autistic Hoya back in high school, actually before either of us were in activisty stuff. I'm also friends with an autistic person on my university campus. There was also another Autistic person in one of my girl scout troops, who I am still friends with. And then there are all the Autistic people where we are sometimes social and sometimes activisty and sometimes both at once. That's a pretty long list.
  3. When did you get your diagnosis (if diagnosed)?
    I was nineteen. My 1 year anniversary of diagnosis is coming up. (Differences in presentation in girls+ "gifted kids are weird" made it take a lot longer.)
  4. What is your genetic gender. Remember, this is optional. You don’t have to answer if you don’t want to. XX, I assume. I never actually had my chromosomes checked, but I haven't got the phenotype for any of the chromosomal abnormalities I've heard of. So XX seems like a safe bet.
  5. What gender identity do you identify as?
    Good question. I'm still trying to figure out if agender or androgyne fits better. Some days agender fits better. Some days androgyne fits better. Maybe I'm a bit fluid?
  6. What sexual orientation label, if any, do you apply to yourself?
    Gray-ace, pan-romantic I think. I dunno. Sex and gender are complicated. Maybe I should go with "I'm Queer" and leave it at that.
  7. Have you ever  experienced depression that was not linked directly to autism?
  8. Have you ever had a meltdown in a public place that was almost entirely or entirely populated by strangers?
    Yup. Train station. In Shanghai. Alone. I was sixteen. Did you know that Chinese sticks around longer under stress than English does, at least for me?
  9. Did you ever attend a school for children with mental conditions (that is, in lieu of going to a more traditional school)?
    Nope. I was always mainstreamed, never in any kind of special school or special education. Closest thing was a social group thing one hour a week in high school, 10th and 11th grade. I quit when it and chorus moved to the same time slot.
  10. Do you parents or grandparents have any mental conditions (not including Alzheimer’s, Parkinson’s or the like unless they were early-onset)?
    My parents are not diagnosed with anything mental. My grandparents are not diagnosed with anything mental. My mother's sister had a range of things, and it is likely that she was autistic. I've written about her before. My mother's father is also likely autistic. As was his mother and his mother's sister. And some other folks I won't mention specifically.
  11. What is your favourite food?
    Either olives or pizza. I think. Or maybe the falafel wraps with everything I can get on campus.
  12. What is your favourite season?
    Probably summer because swimming. And not school, which means more time for Autistic obsessions.
  13. What are your special interests and when did you pick them up as special interests?
    Currently autism and nanotechnology. Nanotech has built up slowly to special interest status since I was about 10, autism is within the last two years or so. Math was my longest running one, and I still love it, but it seems to have run its course as an Autistic Obsession and is now just a thing I like. (Yes, there is a difference.)
  14. Have you ever collected something, such as stamps, coins, ticket stubs etc?
    I was a coin collector for a while. I've also got a box of clovers with 4+ leaflets.
  15. What is the longest time you have ever spent on the Internet, and what were you doing in that time?
    Probably my waking hours of a day, and blast if I remember.

Monday, April 22, 2013

April 19-21 NaPoWriMo

Trigger Warning: References to shooters and the Boston Marathon Bombing.


I will not learn his name.
I will not learn his face.
Nor where he is from,
Nor what he said on Twitter,
Not if I can help it.
Let him fade.
We do not need to know him.

The MIT police officer,
The runners who continued to the hospital,
Those who lost limbs or lives,
Those names, those faces.
They are the ones we should know.

Something New

I do not watch.
I know what I will hear,
And truly, I'd rather not.
I've seen this dance, I know the steps,
I've better things to do than watch,
Than listen, than spend my day in fear.

They will be racist, if they can.
They will be ableist, if they can.
They will be bigots, one way or another.
I do not need to see it.

So I will write,
And I will draw,
And I will stay away.
In this time, I will create.

I can not replace what has been lost,
But I can make something new.


We come together,
As knights of Bostonia,
All together,
And we will not fall.
Too ornery, too stubborn.
No lone wolf can break knights.
The lone wolf should listen up,
For all together, we are Boston.

I have had State Radio's Knights of Bostonia on repeat all week. I might be a bit echolalic. Maybe. ;)

Sunday, April 21, 2013

The Advertisements of Autism Eye

Trigger Warning: Ableism, institutionalization, curebie nonsense

I reference Amanda Baggs piece on institutions a few times, you can and should read it here. 
Actually, you should probably read her whole institutions tag. And maybe her whole blog.

The first inside page is an advertisement for Acorn Care and Education's new house in Lincolnshire. It looks like it might be one of the institutions that Amanda Baggs wrote about, talking about how they build the institution in your head instead of drugging and physically restraining you. It might be a little better since they are talking about achieving increasing independence as an explicit goal, but I'm not convinced. I think that the mention of behavioral improvement and the fact that they are talking about the grounds as how autistic young adults are maintaining active bodies and minds is nudging me in the "not good" direction, along with "the community in which they live" possibly meaning the house community, not a neighborhood with actual inclusion. I don't really trust that the people who live there will get to make uncoerced and decisions about their lives without being constantly guilt-tripped, either.
Next I see an advertisement for the Sutherland House School, which is run by a Nottingham reigonal group. It says there is an emphasis on communication, interaction, and emotional well-being. Communication is good, though I worry that it will be conflated with speech. That happens a lot, and it's bad. AAC is communication, behavior is communication, speech is communication, writing essays is communication. If they understand that there are lots of different kinds of communication and are just working to get any kind of consistent communication up, this could be good. Otherwise, we could be looking at people taking away AAC devices in an attempt to get oral speech to happen or just never having provided them. Both of those are really, really bad. Interaction can be nice, but I don't think it's a smart place to put the emphasis because forced interaction is horrible and meltdown-inducing and needs to stop being a thing. I know of places that have demanded a person spend time with their abusers in the common room because it was interaction, so this worries me. Emotional well-being is important, and I like that place of emphasis. It can be messed up because of people assuming that the prerequisites are different than they really are and then gaslighting the autistic person who has different needs, but if we're actually talking about real emotional well-being, this is good. The commitment to working in partnership with parents and other agencies is nice, but I notice that they don't say anything about partnerships with the students. Which is bad, because that's important.
Then advertisements for tough furniture, which is useful with any kids in the house because kids are kids and for some books (The Panicosaurus, which I have not read but sounds like it might be OK, The Asperkid's (Secret) Book of Social Rules, which could be very good or very bad, leaning towards decent since it talks about standing out in addition to blending in, Inside Asperger's Looking Out which I read and found very cute, and It's Raining Cats and Dogs, which would have been useful for me as a kid and might be useful now if it is what it sounds like it might be.)
The next ad if for assessment software that looks more applicable to professionals. It's a half-page ad, and below it is an ad for Sunfield, yet another residential program. Seriously, what is it with this magazine and advertizing residential programs (an institution by any other name is still an institution, folks.) This one brags about a working farm and a sensory integration studio. It also talks about family focus and how it can do family visits and family members can stay overnight when they come for visits. Which is a nice touch, but it's just another coat of paint.
The next pair of ads is once again assessment software (this one is apparently focused on things like checking readiness for colleges and employments, which is potentially useful) and a fourth residential program. The Whinfell school is for boys age 11-19, and there isn't much to distinguish it in the advertisement. It says it's dedicated to autism, which is content-free.
HELLO, quack cure. The headline is that 15% of us can now eradicate autism using GcMAF, which is supposed to be a director of the immune system that autistic people lack. (Yeah, I'm going to want some citations on that. All of it. That it's got anything to do with the immune system at all, that all healthy people have it, that autistic people generally don't have it.) It claims that this GcMAF rebuilds the immune system and that the immune system then eradicates autism, which doesn't even make sense since autism isn't a virus or a bunch of foreign cells or anything that the immune system has the ability to target. They have a website, and I'm going to have to check that out since I am still thinking about my "None of your cures work, people" thing and that one is in dire need of logical destruction.
Below that is a fifth program, which can be residential for up to 17 people and have 23 total students. It's called iMap, which stands for "individuals Making autism postive." I wonder what Apple would have to say about their capitalization choices? This one doesn't say much either, and it only shows people in half the pictures, all in therapy settings. I'm going to go with institution trying to brand itself as good and send you back to Amanda Baggs piece.
SpeechNutrients is supposed to be a supplement that provides "nutritional support of verbal and motor skills." It's also supposed to reduce oxidative stress, which isn't a great sign. (Remember, oxidative stress is the "cause" associated with the hyperbaric "cure" and it's mentioned as a factor with the miracle mineral solution "cure," also known as bleach.)
Below it is yet another ad for a program. Prior's Court is both day and residential, like iMap. It lists that it is developing independence and life skills, with the young adult program supposed to be a transitional step towards a more inclusive life. Which is a nice statement with no meat in it. No, seriously. None of this has much meat to it. These advertisers really like their content-free and low-content marketing for these autism programs. Probably because they don't really want to say that they are institutions by another name.
And now we see an ad for the Royal School for Deaf Children. Um, why a school for Deaf children in an autism magazine? It sounds like they are specifically trying to advertize to parents of autistic kids, since they are talking about supports for communication problems and "additional needs." Makes sense for Deaf autistic kids, but not as much for autistic people who are not also Deaf...
And an ad for Autism Anglia, which seems to be a local autism organization. One of the services they feel the need to advertize is... you guessed it, a residential program. They also have day programs and weekly programs for younger people and supported living for people who need some help in their own homes. This is the first time I've seen anything about supported living, independent living in this magazine (I've just been looking at the ads, so far,) and we're about two thirds of the way through it.
Conferene ad. "Inspiration for independent living." It's a must-attend for parents, carers, and healthcare professionals, but apparently not for the people who would actually be doing independent living, autistic people ourselves. Which is sad, because it looks like the stuff they are presenting there could be useful. Innovations and tricks for independent living are useful, but apparently they are for the parents and carers who are helping us to live independently. (That makes so much sense /sarcasm.)
Oh hey, finally an ad that is potentially relevant to me. Well, it would have been if I lived in the right country and hadn't missed the deadline. I like deep pressure, and a giveaway for a deep pressure vest would have been cool. The company is called Squease, and they even used a girl for the picture, which I think is nice since a lot of people don't think about the fact that autistic girls exist.
It looks like the next thing is for a transition service, aiming to transition people to residential placements (seriously how many residential placements have we seen here...) and supported living. This one does seem to be actually looking at people over the age of 25 as part of their audience, but still. Everyone seems to be getting tracked into residential programs (institutions) from a young age as far as this magazine suggests, and that's creepy.
And... yet more residential programs. Portfield School is run by the wessex autistic society, and yeah, they offer boarding for up to 52 weeks.
Kidz in the Middle, which already happened, seems rather focused on the children, but that's to be expected since this is a parenting magazine. They actually list children with disabilities as part of the target audience, so that's something. Their exhibitions sound like there could be some useful stuff there too.
A DAY PROGRAM. Oh, my goodness. A school that is not offering to take your kid all 52 weeks of the year. This shouldn't be shocking, but it is. Maybe the hope is to actually teach the kid as opposed to segregating them off to the institution for the rest of their lives and calling their increased compliance (and skills of certain types) independence. I'm not sure, but it's possible. Maybe. The upper school has access to the national curriculum, which sounds like trying to let the students learn the same stuff everyone else learns.
Of course, we needed to offer a ninth residential placement advertisement. This one is run by parents, which actually... kind of scares me that they think that's going to ease worries. Like, "Oh, we're worried about letting our daughter out of our sight, so we made a residential program ourselves and our daughter is in that now." That's not comforting.
And two more schools. Possibly residential, possibly day. It doesn't say. At the end of this magazine, which is only 48 pages including both covers, there were advertisements for at least nine and possibly as many as twelve different residential schools or homes, with some other ads mentioning preparing people for residential programs offered by others, too. Talk about segregating people when they fail to magically turn neurotypical. I'm reminded of one of Julia Bascom's essays from the Loud Hands Project. A child is sent to a residential program, everything is packed away, and she says that thirteen is too young to die.

Going Through Autism Eye

Trigger Warning for curebie nonsense.

Since I was able to get issue number 8 (that's Winter 2012 for reference) of Autism Eye for free off their website, I'm reading everything in it and providing a commentary, a review, corrections, whatever it is I think it needs, per article. It's actually a lot like what I'm doing with Autism Parenting Magazine, except I don't have any plans to repeat this with later issues since it looks really curebie and biomed heavy. (Autism Parenting Magazine reads to me more as a magazine that is trying to be good but has some work to do. They list Autistic parents as part of their target audience, which is a very strong sign that they are trying. Still going to be blunt about the ways they mess up, though, since if they are trying to be good they would logically want to know about that.)
Anyways, here's my reactions to the cover and the table of contents.
Good food to go nuts over seems OK at first glance. Dairy-free isn't a universal autistic need, and I don't know how common it is, but lactose intolerance, sensory issues, etc are all things. It worries me that this is what they are advertizing as a big important thing, because it suggests they might think it is a universal thing or that it will somehow make autistic people not be autistic any more. It's a flag that there will likely be more wrong, but it's not red alert on its own.
Christmas ideas doesn't look like it has anything to do with autism, but it seems OK from what it says on the cover.
Therapy with a touch of magic. That is a BIG freaking red flag. Alert, alert, this is actual curebie nonsense as opposed to a thing that is useful for some people and assuming use for everyone is the nonsense. It's also probably going to be racist, since we're talking about calling an Indian massage magical. Being massage, as long as we're not setting off sensory meltdowns this probably isn't going to hurt the kid, but again, not a good sign.
The cover image is a mother dragging a kid in a sled, and the headline is about embracing winter fun. That seems fine. No, really. That's typical parenting stuff, and the magazine says right on it that it's for parents and professionals, so typical parenting stuff is typical.
Primitive reflexes: a piece of the puzzle sounds pathologizing and is calling autism a puzzle, which I don't appreciate.
Spotting silent seizures is useful. If they conflate the seizures as being the same thing as the autism that's going to be bad. Autistic people also having seizures is a thing, though. It's pretty common, too, so learning to spot a seizure that isn't a Grand Mal is smart.
Now looking at the table of contents: The first article is talking about a problem that Autistic activists also talk about, restraint and seclusion being used and abused. I am cautiously hopeful about their ability to get a few things right in that piece. The subtitle on the seizure article doesn't look as good as the one on the cover, but it still has the potential to have some good information among the nonsense since seizures really are a thing.
Legal Eye could be anything, recipes still look like just recipes, the Christmas thing is apparently about finding therapy "toys" that can be given for Christmas. The reflexes thing is now very clearly about therapy, which isn't unexpected but isn't a good sign. Winter activities still looks like typical parenting. Computer stuff might reinforce the computer stereotype about autistic people, or it might talk about actual good access things that computers can do for us, and it looks like it's going to talk about ways that computers should be being used for education or therapy. Which could be very good, very bad, problematic packaging of reasonable things, or anywhere in between. The head massage looks just as bad as it sounded before. Floortime gets a mention, which I am cautiously hopeful about since most of what I've heard makes it sounds like playing with your kid. I'm not that hopeful, since anything can be messed up, but it has a hope of containing useful things among the nonsense. Library corner could be anything. 
(Having looked at it, the only book I recognize from Library corner is one that I liked. The rest I'm not familiar with.) 

Saturday, April 20, 2013

Your Next Installment of... NaPoWriMo Poems!

April 16-18


Large hands, loud hands,
Flappy flappy happy hands,
Spread arms, flapping arms,
Telling the world of my joy.
An obsessive joy, you say?
But JOY.
Do not begrudge my happiness.
Do not prevent its expression.
I will flap.


A place I have not yet been.
A place I have not yet seen.
I will be a foreigner,
But not alone,
No more than I am here.
Not isolated,
No more than I am here.
There will be no culture shock.
Just the realization:
For once, I should feel like a foreigner.

 If Only/But Really

If only we could be ourselves.
But really we are afraid.
If only we had the nerve,
But really we are cowards.
If only, if only, the woodpecker sighs,
But really, the world is as it is.
If only is all well and good,
But really is life.

(I took creative writing three times in high school, and this was a pattern that we played around with for poetry on occasion.)

Friday, April 19, 2013

Autism Acceptance is NOT

Trigger Warning: Mentions of cure, ableism, mourning for autism diagnosis.

As March ended, I wrote a few things that Autism Acceptance is. And it's important.
We also need to be aware of what Autism Acceptance isn't. And that's what I'm talking about today.
"I love my child, but I hate his autism." That's not autism acceptance. It's not even acceptance of who your kid is. Because some of the things you claim to love are also closely intertwined with autism.
Acceptance as in the stage of grief is also not autism acceptance.
By the way, that's what Autism Speaks is talking about here:
Ultimately, you may feel a sense of acceptance. It's helpful to distinguish between accepting that your child has been diagnosed with autism and accepting autism. Accepting the diagnosis simply means that you are ready to advocate for your child.
The period following an autism diagnosis can be very challenging, even for the most harmonious families. Although the child affected by autism may never experience the negative emotions associated with the diagnosis, parents, siblings and extended
family members may each process the diagnosis in different ways, and at different rates. 
That's not autism acceptance. That's going through mourning for a kid because they have a different neurology than you do.
(Most of the things Autism Speaks has tagged with autism acceptance are nothing of the kind. Just so you know.)
Biomedical treatments for autism are not autism acceptance. Medical treatments for the other conditions that an autistic person might have are good, but completely irrelevant to the question of accepting autism or not, just like the those conditions aren't actually autism. (No, really. Whatever it is that's up with my stomach isn't autism, nor is my history of asthma, nor was my shellfish allergy. No, I don't know how a shellfish allergy going away works, but it happened and I don't really care how it happened.)
Insisting that autistic people must learn to pass for neurotypical while also claiming it's fine to be autistic isn't autism acceptance.
Telling Autistic people who have learned to pass because they had to that this means they aren't really Autistic isn't autism acceptance either.
Insisting that you can speak for all Autistic people isn't autism acceptance no matter who you are. That you can say some things which could help all Autistic people and trying to do so? That could be autism acceptance if the things you're saying fit under it. (Remember, we all communicate for ourselves, you can speak for the benefit of someone else, but not for them unless they have said you can.)
Demanding eye contact is not autism acceptance.
Demanding quiet hands is not autism acceptance.
Setting "indistinguishable from one's peers" as the goal is not autism acceptance.
Conflating life skills with passing for neurotypical is not autism acceptance.
Speaking of cures is not autism acceptance. (Cures for things that aren't autism are kind of irrelevant to autism acceptance, so this still holds.)
Comparing rates of autism with rates of cancer, AIDS, other things that are actually diseases? Not autism acceptance.
Being proud of your own Autistic self, then turning around and insisting that a certain other group of Autistic people needs a cure? Not autism acceptance. 

Thursday, April 18, 2013

And... That's a Year.

Today is April 18th, 2013. The first post on this blog is from April 18th, 2012. That means today is the one year anniversary of my blogging. (Ok, technically I had a Tumblr that I never used for anything except following I think it was High Tide. They don't even go by that name anymore, and they didn't when I started this blog.)
So, what's happened in a year?
I went from having a blog where I basically talked into thin air and hoped to have a reader or two in a day to having 20 people following this blog, 321 following my Tumblr, 185 on Twitter, 605 people on Facebook and a decent pile of pages too. One of the pages is a Japanese Asperger's Society. Which is kind of random, considering that Chinese is my second language, not Japanese, and I'm not actually Aspergers...
I learned a ton about autism and Autistic people in that year. I went to my first conference, the Autism Summer Institute at University of New Hampshire. I crashed on a friend's floor when I was there- she was presenting, and I went to her presentation. I got my laptop set up for text to speech, and I got an AAC program on my iPad after I got one for graduation. (Oh yeah, I "graduated" from math. I don't walk for a little over a month still, but I've got my degree.)
And then I presented at a conference. I talked about the erasure of Queer Autistics, and I... kind of criticized a word choice as having been initially exclusive to a whole bunch of people in front of the author who chose it. I'd met him before. I just didn't recognize him because faceblindness. It's a thing. And I'm supposed to be on another panel today.
I wrote a piece for the Autistic Self Advocacy Network's blog. I contributed a poem to the Loud Hands project. I wrote a piece for Autism NOW!, which then got reprinted on the Thinking Person's Guide to Autism. I made Autism Acceptance designs that got linked to from Paula's original Autism Acceptance Day blog, which then got shared on the TPGA Facebook. They've been talked about on three other blogs too, just in the last week (One of those is using one of my prints for a giveaway of their own, you'll have to check them all to see which!) Because Patterns made its first sale to someone who is not a family member, and the Autism Acceptance designs are why. They're also what I managed to sell. I came in second at a Chinese speech contest talking about neurodiversity. There's a neurodiversity committee at my university now, because of me. I organized a few flash blogs (Autistic People Should, Autistic People Are, Autism Speaks, I Want To Say.) I'm helping plan the AutismPositivity flash blog for the end of this month (That one is a team effort, I'm not alone or working with just one other person there or anything, and E of the Third Glance is definitely the one running that show. She's pretty awesome, by the way. I got accepted into the year abroad for my Chinese program. I'm still doing research in nanotechnology.
Last year, I was pretty new at this. This year, I'm still pretty new at this. I've been learning fast, though, and I plan to continue doing so.
Oh, and I joined Spoonflower.

Wednesday, April 17, 2013

And Yet Three More Poems

April 13-15


Rebellion opens with a single flap.
A refusal to look you in the eye.
An iPad used for AAC,
Rather than pretending I am just quiet today.
It says that I am what I am.
Asserts that I'm a who, if I'm lucky.
That I am not ashamed.
I reject your ideals and substitute my own.

Do you see what I see?

Do you see things others do not see?
What do you mean by that?
I see things others do not see.
But if I point them out, others see.
What I see is there.
They look.
Their eyes take in the same things mine do.
And yet.
Do you see what I see?
I'm not sure I want to.


One Ausome Thing.
Autism Acceptance.
Loud Hands.
Do you hear my Loud Hands?
Do you hear me tell you I'm fine?
Will you listen?
Because I am.
I'm fine.
Different, certainly.
Not better, not worse,
Not more, not less.
Not all sunshine and rainbows,
Not all doom and gloom.
But today?
Today I speak of sunshine,
Today I speak of rainbows.
You can't forget the rainbows are there.
I won't let you forget.

Tuesday, April 16, 2013

The Neurodiversity Committee

A while back, there was an "Open Space Conference" at my university. It was supposed to be on a general theme of diversity. I got in line, grabbed a microphone, and announced that I would run a room talking about neurodiversity. I hoped to get a few people, educate a few people.
I got more people than I expected. One came from Disability Services.
We talked about stuff related to neurodiversity. It was good. Universal design came up, different ways of running classrooms that make it so that some of the things we currently see as accommodations wouldn't be accommodations anymore was mentioned. (Seriously. Just have a note-taker be a standard position for classes where the teacher doesn't make their own notes, and that takes care of needing it as an accommodation. Make the files you upload be screen-readable. Include transcripts for audio files by default. It will mean less work for people whose needs are documentable and save the academic hides of those who don't have documentation for whatever reason. Different methods of assessment being available, choose some number minimum out of the total ways that are to count. It's going to help everyone, and it could save someone's academic hide.)
Action points were brought up. Getting a working definition was one of them, doing some education for the campus, was another. And we put them up on a wall. Everyone was allowed to vote on which ones would get committees and get worked on. (There were something like 20 presentations given over the course of the day, 10 were going to get worked on.) I missed the vote because I had a class and a lab, but Neurodiversity did get voted for. Apparently Universal Design and Inclusive Pedagogy also got voted for. I think that Neurodiversity should be talking to both of these groups, but Inclusive Pedagogy seems pretty focused on racial inclusion and I don't want to derail them. I do have my own committee, after all. Talking about the intersectional stuff would be nice, though. Things like issues that people of color face in the diagnostic system, issues in disability services, how to have Inclusive Pedagogy stuff be inclusive for multiply marginalized people, how Inclusive Pedagogy is useful for Neurodiversity and how Neurodiversity fits in with them. For Universal Design, though, I really, really think that's a collaboration that can and should happen. A lot of the things that would make the school more neurodiversity-friendly also fall under Universal Design, and that part of things we could work on together.
Anyways, the committee has action points and things it needs to present. We've got a working definition of neurodiversity, though the disability services person on the committee is convinced that something about the legal frameworks belongs in the definition of neurodiversity. I... don't think so. Neurodiversity is a paradigm, we're not defining "what disability services does," we're defining "the lens we're looking through."
We're also hoping to get some training stuff for faculty back up and running. There apparently used to be one, and it did talk specifically about Aspergers. Which is about to not be a thing under DSM-5, plus there is the issue of there being people on campus who are neurodivergent in ways other than just Aspergers. It needs to be more inclusive. (Also, Disability Services needs to get it through their heads that properly accommodated Autistic people can and do go to college, and are just as qualified as everyone else. AAC devices do not mean incapable of college, they just mean that AAC works better than oral speech at least some of the time. They keep talking like it's just people with Aspergers who would be coming to college. To an Autistic person who isn't Aspergers.)
So that's kind of what's going on there. It's bureacracy, and it's slow, and the people need a decent bit of education. But they are willing to learn, and they think the idea of looking at this stuff through the idea of diversity rather than of being broken or wrong makes sense. Oh, and they liked the whole "Add neurodiversity to Diversity Week" idea. Which means I might actually participate in Diversity Week stuff once I get back from China.

Monday, April 15, 2013

Three More Poems

I think that putting out the rest of my NaPoWriMo poems in sets of three seems good. Gives a good post length on poem days, still gives enough days for things that are not poems.

April 10-12, 2013


Silent, rocking.
I know what I saw.
I know what you said.
What you said.
I thought you were safe.
I was wrong.

The Lie

You don't want to know.
Not really.
Most likely case?
You don't want to believe.
Not really.
You don't want to see the world we live in.
You don't want to know how this works.
You want to think differences are celebrated.
You want to believe the lie.
I wish I could.

Lone Wolf

Not lonely,
Just alone.
Do you know the difference?
In a crowd, where no one understands.
Lonely, not alone.
In my room, writing.
Alone, not lonely.
The lone wolf needs no pack.

Friday, April 12, 2013

Going Home and Crashing

I got asked a question, I got asked a question! (Picture me doing a little dance and singing that. I'm a tenor second, long brown hair in a braid, brown eyes, glasses, roundish face, if you feel like being accurate in your picturing.)
No, really, I like answering honest questions.
Anyways, from Traci in the comments on Functioning Labels:
Honest question - what is it about coping with social situations that makes you go home and shut down. Is it an emotional reaction to feeling that you might make mistakes and be judged because of it, is it simply exhausting to have to try to function in such a challenging environment, is it a cultural message that if you cannot function adequately (I have no definition for adequate) in that kind of setting that discourages and defeats your ego. Several people in my family are introverts who react similarly whereas I am an extrovert and I probably don't really do the whole social cues thing that much better than they do but it doesn't leave me feeling distressed to the same degree. I am trying to understand and learn more about autism.
Hi Traci!
I'm pretty sure all of those things are part of it to varying amounts, and I think that "interacting with people takes energy, regardless of environment or desire" needs to be part of it. I am introverted, I think. Not all autistic people are, but I think I am.
Point by point, each piece and how I think it is relevant.
  • An emotional reaction to feeling that (I) might make mistakes and be judged because of it.
    Well, more knowing that I will. Because I will. Judgement varies, my friends tend not to care, some family members do, some don't. Strangers I usually have no cares to give as to what their judgement is because social interaction is tiring. Since this is a crowded gathering, I assume there is at least one person there whose opinion I care about. If not, I just wouldn't go, because these are exhausting. I think this one only comes into play with the kinds of gatherings where I am expected to fake neurotypical, since I'm actually pretty good at Autistic-style social interaction. Among other things, we count "parallel play" as totally being socialization. I'm not sure why you neurotypicals disagree. (Jokingly threatens behavioral therapy to make you get it. But I wouldn't actually do that because it's not ethical at all.)
  • Simple exhaustion from trying to function in such a challenging environment.ALL THE YES. No, really. This is huge. At the noisy, crowded gathering that I mentioned, I can tell you 100% that I am experiencing sensory overload. After presenting at a conference recently (Debilitating Queerness, specifically,) there was a dinner at the home of an organizer that was open to presenters. I went. I had a good time, mostly, but that place was loud, and it was crowded, and everywhere was people, and I have trouble focusing in on one conversation and tuning out the others, and I was already tired. I... actually crashed at the party. Like, a complete crash, fell asleep there and everything, and it took my friend about 10 minutes to wake me up so I could leave. It was that exhausting. Other things I need to worry about at parties include finding food that I can eat and something that I can drink. Sensory issues can make that harder too, since I can't drink anything carbonated, scrambled eggs are a texture issue, and anything minty is a nightmare. (Oh, and did you know that people like to have minty breath at parties? AAUUUGGGHHH) Seriously, this is an environment that would exhaust me even without having to handle social interaction.
  • My addition: Interacting with people takes energy, regardless of environment or desire.It takes less energy to interact in an Autistic fashion than to try to interact in a neurotypical fashion (I can use gchat, Facebook chat, Tumblr, and similar things with much less energy expended than I can for going to a party. Talking to one person face-to-face is somewhere in the middle, phones harder than face-to-face but not as hard as a party, generally. Though if it's an Autistic party, the party is going to be easier than the phone. But regardless of exactly how I am interacting, the energy needed is not zero. Use too much energy, and when I get to a place that it is safe to crash, I will. Use up too much beyond that point, and I may just crash wherever I am. 
  • A cultural message that I can't function adequately in that kind of situation that discourages and defeats my ego.That message it out there, but I grew up with the people around me generally not knowing that I'm autistic, so I didn't get all that much of that message. I get it online more than anywhere else, and it tends to send me into angry tell everyone why they are wrong and exactly how they are hurting people mode. Which is a tiring mode to be in so I shut down afterwards, but it's not the message itself directly shitting me down. The message I got tended to be that I was able to do it and that everyone knew I was able to do it (only half-true. I can do it for a limited amount of time and then crash,) so I was just being bad when I crashed. Or people were just confused. It depended on who I was with. But the message I got was more that I was bad because I didn't care enough to do it than that I was broken because I couldn't. Neither is true, of course. I can for limited amounts of time, then I'm done, and that's OK. 
In order of smallest effect to greatest effect for the crowded, noisy gathering that I referenced in the functioning labels post, I think that it would be the cultural message, then the fear that I will be judged, then the fact that interaction is tiring, with the environment as the biggest thing. Dealing with my teachers, the cultural message is still smallest, but the environment is almost as small, and then interaction being tiring is a thing. The fear of messing up and being judged is the biggest one there, since teachers actually have the ability to mess things up for me and some have tried (not recently, but that's not the kind of thing you forget.) Hanging out with a few close friends, the interactions being tiring one is basically all that is in effect, which is why I last much longer with them than I do in basically any other social situation. It helps that they know I'm autistic and don't much care how autistic I act. When I told them I had finally gotten an official diagnosis, some of my good (high school) friends reacted with surprise... at the fact that I hadn't had one before. It wasn't a big deal to them because they liked me for the person I am, and I am autistic.

Thursday, April 11, 2013

Wait, What?

When I was nine, my school had me sent in for a neuropsych evaluation.
From then until my eventual diagnosis, the fact that this evaluation did not give me a diagnosis was the strongest argument anyone had that I was not, in fact, autistic. It was a meh argument at best, considering that there are papers written about the reasons that girls don't get diagnosed, but nothing based on how I actually act was going to hold anything resembling water, so that's what they used. Because even with those things, apparently I shouldn't have spoofed a neuropsych evaluation? (Yeah, no, it's totally possible to spoof a neuropsych eval by being female, verbal, and gifted, even now. When the person is trying to show their Autistic traits so they can get a diagnosis, and I was not.)
I might not have even spoofed the person evaluating me.
They might have just decided not to write down the diagnosis anywhere.
I was talking to my mother about autism stuff, and, well, one of the things that came up was the evaluation I'd had when I was nine, with the school trying really hard to get me labeled with something, anything. They had been pushing for that for a while, too. Because they could tell something wasn't typical. (They were right, too. It's called being Autistic.)
And the person evaluating me knew that the school was pushing for a diagnosis, that I wasn't actually struggling in any of my classes. They picked up on the part where my mind works fast, and I think they noticed the pattern recognition. Two things that really stick out to me from my evaluation were the fact that they commented on my need to snack during the evaluation and one test where they asked me to use a key that matched each of ten symbols with a digit and to decode as much of the page as I could in a set amount of time. I started, trying to fill in all the "1"s. And they stopped me to tell me that I had to go in order. Which made no sense to me. I think I told them so.
But what is running through my mind now is what my mother told me.
The person who did my evaluation asked to talk to my mother afterwards. They told her that there were some "findings" they wanted to talk to her about, that they were not putting in the report they were sending to the school. And every finding that they mentioned to her? I wasn't the only one in the family to do it (Not shocking, since I'm not the first Autistic in the family. My aunt almost certainly was, my great-grandmother probably was, her sister almost certainly was, they aren't even the only ones.) Also, the ones that she specifically remembers line up with "this kid is autistic!" pretty well. Stims, generally. The fact that my motor skills had some (stated to be subclinical but considering that I know they left things out...) differences lines up too.
I won't say that the neuropsych person knew exactly what label it was that they were choosing not to give me because I don't know that, but I've talked to some people who did neuropsych stuff since I found this out.  Findings that they don't quite know what to do with go in the report, with further action suggested. Consultation with an expert suspected to be relevant, further testing in general, something. And that's not what happened. They talked to my mother about them, told her they were leaving some findings out of the report, and did so. I don't know what they knew or suspected, but that sounds like a conscious choice to keep me hidden.
Yes, I hid, but I may have had some help from a neuropsychologist who left some autistic traits out of a report when I was nine.

Wednesday, April 10, 2013

Airports, Airplanes

One of those "Alyssa answers a question" things:
iamthegps posts:
On April 25th, I’m traveling to Costa Rica with a school trip and while I am very much looking forward to it, I’m not so much looking forward to being in an airport for the first time, much less two airports within a couple hours of each other. So I decided to search the internet for advice on how to manage getting through airports when you’re autistic and I found exactly nothing. All I could dredge up was a couple of articles on how to travel with your child and one about how embarrassing it was for somebody when her kid had a meltdown on the plane. Nothing about how to deal with crowds or TSA or getting your tickets or anything (also known as advice I’d really appreciate being given). So yeah, any advice would be greatly welcomed, and thanks in advance.
I've studied abroad four times, the first and third times I did my traveling/airporting alone, with the second and fourth done in school groups.
When alone, you need to actually pay attention to stuff. With a school group, one person will take care of finding all the things, so make sure you don't volunteer to be that person, then bring whatever you use when you want to tune out the world and do so. Make sure one member of the group is aware that you are tuning out to the best of your ability and ask them to make sure you don't get left behind. If that is the case, skip the next several things because someone else is taking care of it for you. They may ask for your passport, and you may need to follow them for one piece if you are checking a bag.
If you're alone, just arrive early enough that you can take a few tune-out breaks if needed.
If you can pack everything you need into your carry-on allowance, you can do electronic check-in for most flights, even many international flights. This reduces the need for interacting with people, but requires packing very light. It can be done- I packed for two months in China within my carry-on allowance, but that doesn't mean it's easy.
There will be signs pointing to where things are, check-in is generally near the entrance. Read the signs on the check-in booths, because different booths are for different airlines.
Use all rolling suitcases except for a possible backpack. Just do it.
Make sure that at least one rolling suitcase is packed in a way such that you can sit on it. There will be lines you need to "stand" in, and this suitcase is your new portable chair.
Bring communication cards with things like "where is the bathroom?" and "where is security?" and "where is check-in?" just in case.
Bring entertainment. Delays are a thing. I wound up with an eight hour delay alone in Toronto when I was sixteen, and I have never traveled without laptop, book, notebook, and pen since.
Know what the contingency plans are for overnight delays at middle points if you have to transfer. Knowing what happens if the first thing goes not as planned is helpful for avoiding meltdowns and also because you don't want to sleep on a hotel couch in the basement when a six hour delay on one end (Shanghai) gets you stuck (Toronto again) alone in a country that won't let a minor get a hotel room alone. It is not fun.
Don't use Air Canada for international flights unless you have time for major delays.
If you can smile at security and ask how their day is going, they will be nicer to you. (Might only apply to white and white-passing.)
If you pack too light (backpack only, for example), people get suspicious and might pat you down. Have a carry-on suitcase in addition to the backpack, because patdowns are not fun.
There are metal detectors, which are not optional if that is where they send you. There are also millimeter wave things and X-ray things, some of which you may refuse, but you will be patted down if you do so. If you are sensitive to touch, don't refuse.
Noise cancelling headphones are your friend. Or earplugs. Assuming you can use them, that is.
Some people can sleep on planes, some can't. Go ahead and try, but do not base "getting enough sleep" on the assumption that you can unless and until you have experience that says you can.
If this is your first time flying, try to get a window seat. It's worth it. I've flown a lot, and I am still a nose-to-the-window flyer. It also gives you control over open/closed in case of airsickness.
Don't ask for details about how security works. You can (and should!) look them up online beforehand, but asking while there will make people suspicious. Suspicious TSA (Transportation Security Administration) agents give pat down searches.
Do not bring a full water bottle through security. They will throw it away.
You can bring an empty refillable water bottle through security, though.
You can also bring food. Bring a comfort/stim food.
Have stim toys in your carry-on, preferably in the smaller backpack that you put under the seat in front of you so you can access it during the flight in addition to while in the airport.
At security, they will make you take your shoes off. Wear shoes that you can take off and put on quickly and  easily. They will let you keep your socks on, so wear socks if you don't want to be completely barefoot for that part. If your socks having touched the (admittedly kind of gross) airport floor at security will bother you, pack a spare pair of socks in an easily reachable spot in your carry-on.
Liquid that you can bring through security is limited. If you aren't picky about shampoo or won't be going for long enough for a 3oz container to run out, this isn't as big a deal, but otherwise, make sure it is in a checked bag. If this and/or sunscreen is the only reason you need to check a bag, you may be able to stick to carry-on by asking a friend to put these two things in their bag and offering to carry an equivalent amount of stuff of theirs in your bag. (That won't work travelling alone, unfortunately.)

Tuesday, April 9, 2013

Three Poems

I've been writing for NaPoWriMo, but I haven't managed to put them up here.
So here they are:

Today, April 8, 2013, Yom Hashoah: Trigger Warning: The Holocaust


I remember you.
Some I am related to by blood.
Some I am related to by religion, even if I am not religious.
Some I am related to by neurology, by disability.
Some I am related to in other ways, ways that were not what cost them their lives.
Some I have little in common with.
I remember them too.
I remember the Jews, with my relatives among them.
I remember the gay men made to serve out their sentence.
I remember the dissidents who dared to speak up.
I remember the Romani.
I remember the disabled, whose murders became mercy.
I remember the priests, I remember the Witnesses.
I remember the nameless, the forgotten, the lost.

Yesterday, April 7, 2013:

Finding Words

I hear, I know, I speak.
In the silence, I watch.
Quietly at times, louder at need.
Speaking when I can,
Sharing when I can't.
Writing because I must.

Sitting, typing, I find my words.
Words I did not know I had
Until I sat to write.
Words I had somewhere, but could not reach.
Now I can, now I write, now I am heard.

Saturday, April 6, 2013

The Day

A sign.
It says "Autism Doesn't Speak Unless Autistic People Are Speaking."
Another sign.
It says "Autistic and Proud."
A third.
It tells of the blood on their hands.
Three Autistics, one to a sign.
Sitting, waiting.
Spotting one who moves like us.

A used book store.
A bin of free books, to look at, to bring home.
Shelves, shelves, books upon books.
One purchased, if only so that others do not read it.
Perhaps to be used in debunking.
Perhaps just to keep away from the innocents who don't know better.
Worth it.

A barbecue.
Meats, vegetables, sauces.
Udon noodles.
Three Autistics and a parent,
Eating together, happily.
A gong.
Loud, painful.

The day ends.
Had ups, had downs, was good.

Saturday, April 6, 2013




Or do I dare refuse
The statements
Of what makes writers?

Am I not the writer I think I am?
Or are the rules not so hard as you believe?

Friday, April 5, 2013


Trigger Warning: Judge Rotenburg Center, Quiet Hands

I am aware.
I am aware that there is a thing called autism.
I am aware that it is diagnosed more than it used to be.
I am aware that people are scared of autism, and of autistic people.
I am autism aware.

I am aware.
I am aware of how we are treated.
I am aware of the Judge Rotenburg Center.
I am aware of "Quiet Hands."
I am aware of discrimination.
I am aware of abuse called therapy.
I am actually aware.

Notice the difference?

Thursday, April 4, 2013

There are things I should be telling you about.

Trigger Warning: Ableism

I should be telling you what's going on with Amanda Baggs and how they are screwing up her treatment again.
I should be telling you about how awareness and stigma helped cause that.
I should... and I don't have enough energy left to do anything more than ask that you take my word for it, and that you go yell at the hospital.
Contact the hospital:


 And I can copy and paste my poem of the day, for NaPoWriMo. 

Silently, invisibly,
I scream "I am here!"
Walk by, brush past, ignore.
Louder. "I am here!"
What does it take to be real?   

Wednesday, April 3, 2013


Life is busy.


I'm on Abilities of the Arts with my Autism Acceptance designs.  I happen to think that is pretty cool. Also, it might give a bit more exposure for the fact that I'm selling prints of my Autism Acceptance designs over at Because Patterns. I sell other stuff there, too, and I'm running a giveaway for two of the artist proofs. During April, 25% of Autism Acceptance sales and 10% of all other sales go to ASAN. I'll be writing that check at the end of the month, already owe them $37.50.
Oh, and for that giveaway, how it works is that I asked what Autism Acceptance means to you, people answer. At the end of the month, the answer with the most votes and my favorite of the other answers both win an artist proof. So you should totally go look at the current answers, vote, and maybe add your own.
I'm trying to do National Poetry Writing Month. A lot of you probably know I use a queue for my posts- well, I'm writing this about two and a half hours before it goes up instead of the day or three lag time I tend to average, and I haven't written my poem for the day yet. I'm probably dumping it onto the end of this post.
I found out today that I got accepted into the Capstone year for my Chinese program. That means that come mid-August, I'm going to be heading off to China for nearly a year, and I'll be taking classes conducted in Chinese that are relevant to my math and engineering stuff. I'll be going to the new Tianjin site, so that's pretty cool too.
I'm supposed to present at Debilitating Queerness this Friday. The paper isn't done yet. I know what I'm doing tomorrow.
My friend Brandon is raising money for a photography project that is pretty freaking cool. He's taking pictures in Chinatown and in China, and he's doing a Kickstarter, and you should totally help him out. He shared my giveaway, I'm sharing his stuff. We've been friends for a long time.
I might be using one of my autism acceptance designs for an autism walk to benefit ASAN. We shall see. Among things yet to determined is if we can actually get a walk benefiting ASAN to happen.
I'm tired, and everything is a ladle because ladles. Also, I am getting really echolalic.

Now for the poem and I'm going to sleep.

Echo ladle,
Echo dreidle,
Echolaling my echoed ladle.
The words repeating, time and again.
Echolalia sounds like echo ladle.
Echo, echo, echo,
Words and words and words and words.
Or just one word.
Echoes ladle.