The Intersectional Infinity Summit

Today, I presented at the Intersectional Infinity Summit. Twice, actually. 

First, I talked about "Exploring AAC as a Student & Educator--Communication Access & Accommodation." Then, I was on the panel, Why Autistic Acceptance is Essential. Spoken language was working for me at the first presentation, but not at the panel, which I think is kind of funny because it meant I used AAC for the presentation that wasn't about AAC. 

Because I used AAC for the panel, I have a record of everything I said during it. That's below, but slightly out of context: 

My name is Alyssa. My pronouns are they, them, theirs. I am a white human with dark brown hair in front of a blurred background.

 I am at yes underscore that too on Twitter. I can speak some of the time but not all of the time. I use augmentative and alternative communication when speech does not meet my needs.

I am definitely autistic and aphantasiac. I may be neurodivergent in other ways too.

If a question is addressed specifically to me, please wait. If it is addressed to multiple panelists, someone else can go first while I type.

I sometimes call April “autistic hell month.”

I do my best to ignore April. Last year my dissertation defense in April kept me busy. I could not pay too much attention to Autistic hell month because I was too busy trying to become Dr. Zisk.

This year I have a survey active during April so I do not get to ignore it. We started sharing it before April because I knew many autistic people would be too tired to participate once April got underway.

(BTW, the survey: Words matter. What words do you prefer when talking about AAC and the people that use it? Fill in this survey and tell us your preferences. https://www.surveymonkey.com/r/3NMXCHG
You can also help by sharing the link to the survey.)

 

If you are thinking about doing an awareness event but do not know where to find autistic experts to help you do it right or do not have the budget to hire one, remember that there is the option of Not Doing An Event.

 

I prefer resources that treat neurodivergent characters as human characters who do things for human reasons. Learning to understand the actions of different others and their reasons through stories is possible, if the stories give reasons beyond 'because they are broken in this named way.'

If you read a story about a person who acts for reasons, it’s easier to understand that story if you 1) might have similar reasons for action, and 2) would get similar effects from  similar actions. Both conditions can be violated in cross-cultural communication and in cross-neurotype communication, but you can still try.

 

No amount of evidence that an intervention can achieve a goal I do not have will magically turn into evidence that it can achieve the goals I do have.

 

I think about connections between cross-neurotype stuff and cross-cultural stuff: we can learn how to do cross-neurotype communication better from the parts of cross-cultural communication that are done well. And we can see that the problems are not unique to neurodivergent people.

I noticed overlap between my experiences studying abroad and my experiences as an autistic person. However, I got more leeway for my differences when studying abroad than when people assumed it was all about autism. This is common for white neurodivergent people.

We know we're different. You get a say in how we understand that difference, but trying to pretend we're the same won't go well.

Thank blob April is almost over

Today is the last day of April. For family reasons, I wasn't online all that much in the last week and a half of the month (this was good and I should probably arrange to spend as much of April as possible too busy to be online in the future, except for the part where if I'm that busy I am also working towards a burnout and I need to fall the heck over now.)

Even so, autism nonsense and attention paid to it tended to be at a high. Sometimes this is useful. Like when one of our own needs a social media crisis thrown against a discrimination issue: Niko won a competition for a trip but doesn't get to go because of his disability.

Sometimes it's frustrating: do I really need to answer for the n+1st time that I am an autistic person, not a person with autism? There exists a cat named autism because autistic humor is a thing, but I do not live with this cat. Do I need to explain for the n+1st time that no, I don't think organization XYZ can be reformed in a way that would make it helpful for autistic people? (Organization XYZ is usually, but not always, Autism Speaks.)

Sometimes it's scary: I don't really need to be reminded just how far many parents are willing to go in order to "get their child back" from this scary autism thing, or what they do when nothing "works." I don't need all the reminders of why I'm scared for (not of, for,) autistic kids today. (A lot of other people do seem to need the reminder, but they don't seem to be the ones getting it, or understanding why this is scary.)

And it drops back to somewhat normal levels tomorrow.

Presenting

Apparently my presentation at Autcom is the part that I'm able to write about. For the ways things were done wrong (and were they ever done very, very wrong) you can read Neurodivergent K's post, Turtle is a Verb's post, Mitchell's post on a blog I think he might have created just to be able to write this mess up, Beth Ryan's post, Expectedly's post, or the ASAN New York statement.

Let's just say that Neurodivergent K was my roommate and one of my co-presenters, and that Beth Ryan was our other co-presenter. And by "our other co-presenter" I might mean the one who got the panel organized? I'm not sure beyond "it wasn't me."

Because of what happened the Friday afternoon and early Saturday morning of the conference (see the posts I linked at the start,) my ability to speak was cutting in and out most of Saturday morning. I know from experience as a math teacher at my university that so long as I have speech when I go "onstage," I will retain speech until I go "offstage." I put the onstage/offstage in quotes because it's not exactly about a stage, at least not a literal one, though it is about a sort of performance.

However, what I did not know was what would happen if speech was already gone when I went "onstage." Since I put in some effort towards making sure speech is still around when I start teaching math classes at my university, and since that effort had always worked (it's not that hard to avoid things that'd cause speech to go kaput on me for the first 3 hours of the day when I have a single room and am just working on lesson plans and/or grading,) I had no reason to know.

Now I know. Thanks Autcom. (That's sarcasm, by the way. I am not actually grateful for this knowledge.)

If speech is already gone when I go "onstage," it doesn't necessarily come back. It didn't for my presentation.

I had brought my laptop with me for the slides, so I'd already been planning to hook my laptop up to the projector. This was good, since I was then able to open up Open Office on my laptop, make the font bigger, and present by typing into a text document. I switched the screen back and forth between the text document I used to write to the audience and the slides my co-presenters and I were using, as relevant. If I had something to say, I had the document up, and if my co-presenters were talking about something to match a slide, I had the slides up.

Before presenting, but after I had hooked up the laptop, I was working on a piece for The Autistic Exchange, which is a fanfiction exchange by and for Autistic people. I won't claim it was my best work, but the people who were in the audience waiting for my panel got a bit of a preview. If you want to read it, the authors for the collection have been revealed so I can tell you which one it was. Here it is!

The presentation went well, and we tied some examples from the Autcom mess into what we were talking about on the panel, which was how partnerships between parents of autistic people (who may be autistic themselves) and autistic adults (who may also be parents) can work. The Autcom examples were not the positive ones.

I also cracked jokes while presenting. I told people about how I got a teacher to tell me to "be quiet!" when I wasn't actually able to talk. Without context, this seems like it'd likely be bad, but with context, I was amused and I think the teacher was too, considering that he was laughing while telling me to be quiet. I was correcting every single board typo and that the teacher would have been treating my writing to communicate differently from other student's speech had he not told me to shush. He was just imprecise with his terminology, in a math class where he talks about how important precision is. Therefore, I found him telling me to be quiet most amusing.

Post panel, Neurodivergent K and I were kind of cornered together by this Sandi person. I wound up typing to her about stuff that would have been an OK conversation if it weren't for the part that she was totally trying to pretend everything was cool without actually doing things to fix the things. That made it a very stressful conversation instead.

After the panel and cornering were both over, I found out that I "inspired" someone. Before you do the spit-take and wonder who is about to get verbally eviscerated, the answer is no-one. This was one of the few examples of "inspired" where I totally agree with the word choice. I apparently inspired another Autistic adult who would benefit from using augmentative and alternative communication part time to do so, and more openly. I'm cool with serving as that sort of inspiration.

Be Brave (Revolution)

Say what you wanna say and let the words fall out.
They say war is necessary,
But we say war is child abuse.
Find the new ways that we must be king,
Instead of leading the young to our suffering.
I wanna see you be brave.

Sign what you wanna sign and let the words fall out.
Don't let them pretend they're saving you!
Don't bend, don't break, baby, don't back down.
There's no one here to save.
I wanna see you be brave.

Write what you wanna write and let the words fall out.
Start a revolution at the break of day.
So we're calling all the crows, they're coming in slow
It's gonna be a showdown, said the rebel to the revolutionary follow me,
We tell the court, you tell the king,
That we ain't listening to you no more!
I wanna see you be brave.

Type what you wanna type and let the words fall out.
You could cut ties with all the lies you've been living in.
It's time to try defying gravity.
Unlimited, together we're unlimited
As someone told me lately,
Everyone deserves the chance to fly.
I wanna see you be brave.



Another echolalic poem. Lyrics (sometimes slightly modified) from:
Brave- Sara Bareilles
People of the Sun- PONS
King of Anything- Sara Bareilles
White Flag Warrior- Flobots
It's My Life-Bon Jovi
Jumper- Third Eye Blind
Calling all Crows- State Radio
Knights of Bostonia- State Radio

On #WAAD I...

Check the calendar.
It's really today.
Can it not? Can we not?
Please.
One year, one day, someday.
But no. Blue is here.

I sigh, and don my armor orange.
April 2 is still a Thursday, still a long day.
Flap my way to class,
Rock in my chair,
Look a foot to my teacher's left.
No hiding today of all days.
No letting people think autism is only children.

In class, we are asked of stresses and strains.
(I'm an engineering student, and a math student.)
I flap for words.
I speak.
I flap for words.
Fewer words come.
I flap for words-No words.
They're gone.
I flap for words-No words.
Dare I type instead?

Don my armor orange.
No hiding today of all days.
Out the iPad comes, to speak.
Autism doesn't speak unless autistic people are speaking.

The Worst Nightmare You Don't Know

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

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

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



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

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

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

Autism... something Month

Not awareness. Awareness is scary because people who think they're "aware" of autism are mostly folks who are working off a whole lot of fear-mongering and Not Like My Child and all kinds of yucky stuff.

Not sure about acceptance, because I'm not sure that's enough. Acceptance and tolerance often feel similar, with a "well, fine, we'll deal with you as you are as long as you're close enough to normal" vibe to them. And I can't help but remember that acceptance is listed as one of the stages of grief. I think Autism Acceptance Month has actually been used that way, in a co-optation. The people I like and trust and work with on this sort of thing go with Autism Acceptance Month, and I won't argue with them over it while they're actually doing good stuff. (Language is, in fact, not the most important thing to me, even while words mean things. Language is imprecise sometimes and connotations make things tricky and that's OK. Language changes, too.)

There's already an Autistic Pride day, and it's in June.

Realistically, I'm just going to stick with Autism Acceptance for the time being. I'm also going to do stuff. National Poetry Writing Month is April, and I'll be writing a poem a day for the month. I'll be putting them up in chunks again so that I can post other things as well, but that's a thing that's happening. I'm considering putting some echolalic poetry in again this year. 

And I'm making my short stories with autistic characters in them free for 5 days apiece in April. First up is "The Beginning of Her Hell", which is free for April 1-5. Warnings for ableism and threats of institutionalization and violence in this story. (Ok, so as of right now there are two such short stories, but I'm hoping to get one more up this month.)

Image of the cover for "The Beginning of Her Hell" by Alyssa Hillary. A pair of blue eyes stares out over a typewriter.

#AutismSpeaks10 Aren't #AutismChampions.

I've been fairly active on Twitter the last few days with the Autistic and allied takeover of the #AutismSpeaks10 hashtag, and now the new tag, #AutismChampions (the s at the end is important, because without it you wind up in a different tag.)

I've also been super-busy offline, and I've been working on some cool advocacy, activism, and art stuff that's not ready yet, so I've not had enough time for that and blogging typically. In lieu of a more typical blog post, here's embeddings of all my original tweets to those two tags. :)

I seriously recommend looking at both tags, though, and maybe retweeting some stuff or adding your own! Warning, though: Some of the stuff Autism Speaks has done is really triggering, and we are talking about it.

#AutismSpeaks10 spreads the idea that our families are not living, just existing... and doesn't seem to worry how saying so affects *us.*
— Alyssa (@yes_thattoo) February 21, 2015

#AutismSpeaks10 style "awareness" is why TNJU didn't want an autistic student (me) to study abroad at their school.
— Alyssa (@yes_thattoo) February 21, 2015

(The Chinese tweet is a translation of this.)

#AutismSpeaks10 tries to teach autistic children to act normal (hence, speak) and then adults to STFU. Interesting turnaround.
— Alyssa (@yes_thattoo) February 21, 2015

#AutismSpeaks10 helped me realize just how much people are afraid of anyone who thinks and acts differently. By spreading that fear.
— Alyssa (@yes_thattoo) February 21, 2015

由于 #AutismSpeaks10 的“帮助” 和 “提高认识”，天津师范大学恐怕自闭症，不要接受自闭症的留学生。
— Alyssa (@yes_thattoo) February 21, 2015

(This is Chinese for the TNJU (Tianjin Normal University) tweet.)

#AutismSpeaks10 has taught people that without normalization therapy, autistic people can't have a good life. But here I am, and here we are
— Alyssa (@yes_thattoo) February 21, 2015

#AutismSpeaks10 years lobbying to mandate therapy to match the guy who thinks we don't start with basic rights as people. See Lovaas: (1/2)
— Alyssa (@yes_thattoo) February 22, 2015

"With responsibility, the developmentally disabled individual takes on dignity and 'acquires' certain basic rights as a person."-The ME Book
— Alyssa (@yes_thattoo) February 22, 2015

#AutismSpeaks10 seem pretty sure that natural autistic body language and coping mechanisms are scary behaviors to eliminate. They're wrong.
— Alyssa (@yes_thattoo) February 22, 2015

Well, the Autistic tradition of flipping off the #AutismSpeaks10 offices when we pass them in NYC or Washington, DC is kinda fun, at least.
— Alyssa (@yes_thattoo) February 22, 2015

Like, JER left #AutismSpeaks10 essentially because they weren't listening. He already tried the nice thing. It DOESN'T WORK.
— Alyssa (@yes_thattoo) February 22, 2015

Be sure also to thank #AutismSpeaks10 for saying autism works faster than cancer and muscular dystrophy. #IamAutism @Privetine
— Alyssa (@yes_thattoo) February 22, 2015

Just a reminder that for an additional #AutismSpeaks10 backfire gift, you can totally leave a 1 star review here: https://t.co/wqKnUAjTZc
— Alyssa (@yes_thattoo) February 22, 2015

Y'know, without #AutismSpeaks10 years of fear-mongering, fewer #actuallyautistic would have so much time for twitter. #irony.
— Alyssa (@yes_thattoo) February 22, 2015

Given what #AutismSpeaks10 has for stated goals, I'm GLAD they're inefficient. Eliminating autism is eugenics, folks. #ActuallyAutistic
— Alyssa (@yes_thattoo) February 22, 2015

Reminder that #AutismSpeaks10 tried to sue an autistic minor for parody. Talk about silencing autistic people! http://t.co/OwheWn5gjn
— Alyssa (@yes_thattoo) February 23, 2015

Also a reminder that #AutismSpeaks10 has a history of plagiarizing autistic adults, white-texting, and lying about it http://t.co/1hmhMMd65X
— Alyssa (@yes_thattoo) February 23, 2015

But seriously, I have a "Problem with Autism Speaks" tag. http://t.co/7MTJPKDq0W #ActuallyAutistic #AutismSpeaks10 @autismspeaks
— Alyssa (@yes_thattoo) February 23, 2015

So @alannarwhitney made an #ActuallyAutistic alliteration acrostic of #AutismSpeaks10 here: http://t.co/C8XlhKVnDw Poetic truth to power!
— Alyssa (@yes_thattoo) February 23, 2015

#AutismSpeaks10 years of acting like autistic people are complete burdens and writing us out of our own stories.
— Alyssa (@yes_thattoo) February 23, 2015

#AutismSpeaks10 years of actively spreading fear of autism and #ActuallyAutistic response got covered on @BuzzFeed http://t.co/bpjqRlHQ4z
— Alyssa (@yes_thattoo) February 23, 2015

Just occurred to me that "The Beginning of Her Hell" is an argument against the "therapies" #AutismSpeaks10 suggests. http://t.co/XaCmPFlI9D
— Alyssa (@yes_thattoo) February 24, 2015

#AutismSpeaks10 years of every cool thing an autistic person does being "despite" or a sign of "overcoming" autism. :(
— Alyssa (@yes_thattoo) February 25, 2015

. @GMA Consider covering the #ActuallyAutistic responses to #AutismSpeaks10 Autistic people are speaking, listen to US.
— Alyssa (@yes_thattoo) February 25, 2015

#AutismSpeaks10 years insisting that barest acknowledgement of good things from autism is "false hope" of sunshines and rainbows...
— Alyssa (@yes_thattoo) February 26, 2015

#AutismSpeaks10 years of frank eugenics. That's what trying to eliminate those deemed "burdens" is. #ActuallyAutistic #RightsNotElimination
— Alyssa (@yes_thattoo) February 26, 2015

#AutismSpeaks10 speaks over us like we're not here and calls us #MSSNG. And also can't do math: 3 million Autistic Americans=total. Not kids
— Alyssa (@yes_thattoo) February 26, 2015

#AutismSpeaks10 uses our numbers to spread fear then denies we exist. #Autistic adults know what's up. #ActuallyAutistic #MSSNG #NotMSSNG
— Alyssa (@yes_thattoo) February 26, 2015

So remember that #MSSNG campaign that #AutismSpeaks10 ran? And how that's legit saying we're missing (stuff)? We're #NotMSSNG. We're here.
— Alyssa (@yes_thattoo) February 26, 2015

#AutismSpeaks10 lobbies to mandate a therapy that shares its history with gay conversion therapy. Lovaas-ABA. Look it up. #ActuallyAutistic
— Alyssa (@yes_thattoo) February 26, 2015

#AutismSpeaks10 lobbys to mandate a therapy with a stated goal of indistinguishability, at unreasonable cost: http://t.co/a2lHk0XWoR
— Alyssa (@yes_thattoo) February 26, 2015

Dude. If you get run out of your own hashtag by the population you claim to help, you are NOT #AutismChampions. #AutismSpeaks10
— Alyssa (@yes_thattoo) February 26, 2015

#AutismSpeaks10 is the problem, making it harder for #ActuallyAutistic #AutismChampions to get anything done.
— Alyssa (@yes_thattoo) February 26, 2015

Some REAL #AutismChampions are @UVGKassi @dkmnow @autistichoya @CorinaBecker @AutismAcceptDay @Aut_Love_Accept @Autism_Women
— Alyssa (@yes_thattoo) February 26, 2015

.@DeannaNMc Autistics speak, it's time to listen TO US. ( @autismspeaks can shut up now, they aren't #AutismChampions.)
— Alyssa (@yes_thattoo) February 26, 2015

#AutismSpeaks10 as #AutismChampions? More like #EugenicsChampions, get real. Eliminating autism *is* eugenics.
— Alyssa (@yes_thattoo) February 26, 2015

As an #ActuallyAutistic person, I'm grateful for @AutismSpeaks inefficiency, not their work- a sign they aren't #AutismChampions after all.
— Alyssa (@yes_thattoo) February 26, 2015

I am Autism

I am Autism

Here I stand, the epidemic, tsunami.
Here I stand, in your classes, on your streets.
Your teachers, your classmates, you neighbors.
Do I look so fearsome as I stand?
Maybe I should.

Strength you won't know, from bearing the world
Too loud, too bright, too close,
What's a moment's discomfort to me?
Tired of running, I stand my ground.
I am autism, hear me roar.

Disability Fearmongering Rhetoric Disorder

DFRD

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




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

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

Words of War

They come again with their words of war,

Awareness, vigilance, combat this new menace!

This stealthy thief of lives,

No need to take what you believe already gone,

The trickster-gods have their laughs.

And I, whom they seek to “free”?

I prepare to meet their charge.

Don my armor orange, sharpen my pointed words,

If it's a battle they want, it's a battle they'll have.

The tricksters, the tricked, and the living.

This is autism

I've actually talked about this sort of thing before. On Tumblr, I have a "This is what autism looks like" post from about a year and a half ago. I'll be reblogging myself to get it out there again. I've written some poems that are relevant, too. They're copied and pasted at the end of this.

Anyways.

What is autism?
It's always a person or a group of people. There is no autism detached from the person- there's no way to split off "this is the autism and this is the person." Any metaphor that tries is going to be a bad metaphor. So I'm not going to do that.
It's also probably a lot of different things, because seriously this isn't specific. There were a lot of ways to meet criteria in DSM-IV-TR. There were 3129 different ways before getting into single criteria that can be met in different ways and known traits that aren't on the DSM list.
Even when the core bits are the same, presentation isn't always going to be the same. It might not even be all that similar.
Autism is better understood as a foundation everything else gets built on (kind of like a neurotypical makeup is a foundation that a neurotypical person's mind/personality is getting built on) than as... probably most of the things I've seen it understood as. Environment and experiences and such are going to affect what happens from there, just like with neurotypical folks (and with allistic folk who aren't neurotypical.)
So what's autism?
It's all the A/autistic people and the people with autism and the undiagnosed who think they're just broken or wrong and the undiagnosed who've gotten along OK. It's all the people whose minds and thoughts and experiences are built and reacted to using an autistic foundation instead of one that's close enough to "average" or "normal" to get called neurotypical.
Autism is people. It's not an outside force stealing them away. It's people, right around 1% of people.

Now have the poems woot.

Anniversary

I stand in front of you.
I tell you exactly who I am.
I am a college student,
And I am Autistic.

And yet, and yet, and yet you assume,
I must be a parent,
I must be writing about my child,
An anniversary of diagnosis must be for my child.
No, it's for me.
An anniversary of diagnosis must bring back sadness.
No, it is a victory for understanding and hope.
An anniversary of diagnosis is a difficult day.
No, I want a cake. (Or ice cream. Ice cream is good.)
An anniversary of diagnosis is a day to reflect.
That much, at least, is true.
But what to reflect on, what to think?
Autism: 0, You: 1?
This is not zero-sum
Defeating autism?
We're not separate.
Remembering that my child (what child? I have no child yet) is still my child?
How could I forget that?
How could a different neurology cause anyone to forget that?


Autism Is

Autism is a word for the ways I will never, can never be normal.
It is also the word for "why this doesn't bother me."
Autism makes me a foreigner in my own country.
It also protects me from culture shock, as I am accustomed to being "other."
Autism makes it harder for me to find friends.
It also keeps false friends away.
Autism makes it harder to take notes in class.
It also means I don't need to.
Autism makes mint, strobes, sirens painful.
It also allows me to stim.
Autism makes oral speech less natural to me.
It also provides my abundance of words.
Autism means challenges.
It also means solutions, if only I am allowed to use them.

Explaining in ENGLISH

Ok, so I've been in Tianjin for about a month now. Just over a month, actually. A lot of cool stuff has happened. Including...well, I said in My Problem With Homework that I'd never managed to explain my problem so a teacher understood? No longer true. I've still yet to manage it in English, but I've now done it.
And now I've translated my side of the conversation, edited a bit to make sure there is enough context for people to understand what I'm talking about, if not always why. Original Chinese here.

Trigger Warning: Reference to euthanization, Description of ableism (by teachers.)

You know how when I'm having a problem sometimes I can't talk? Now I know that if the problem happens when I'm using Chinese, I have the not able to talk thing in Chinese too.

Euthanization is the reason for this time that I can't talk.
During class, the teacher showed us a picture.
If you had something a lot of people thought was a good reason for euthanization, you'd probably be uncomfortable too.
I know the teacher doesn't agree with it. The picture is still scary and makes me uncomfortable.

It's really hard for me to start anything on my own. (Eating three meals a day and showering daily can also be a problem.) Ever heard of executive dysfunction? I still don't have a good method. If I find one (or you help me find one) then I should be fine.
This weekend I tried not doing my math stuff until I finished studying for Chinese. That failed: the result was that neither Chinese nor math was done. I'd thought that if I couldn't do the homework I wanted to do until I finished the Chinese that might help. (I'm interested in Chinese, but more interested in math.)
Starting stuff is the problem. (For example, it can take me 2 or 3 tries boiling water before I manage to add the hot water to the ramen.)
I can forget I have stuff I need to do, or I can know I need to do it and have trouble starting. Switching activities is also hard.
[The teacher asks me what I did before to get my homework done.]
That's the problem! In the USA, I'd choose classes where if I payed attention in class, I could pass the tests. I had problems in the classes where there was daily homework/previewing. I had the same problem in the USA, I was just able to choose different classes.
I know I need to do it. That's not the problem. In middle school, I mostly did my homework during other classes. One day, I got seven classes homework assignments done during class. This is bad. I know it's bad, but it was better than not getting the homework done.
My older methods:
1) Choose a different class (no good)
2) Do homework in class (no good.)
I need a third method. I need help.
Before, teachers always said because I was smart, I should be able to find a method. No one taught me to do it. Teaching me could help.

Wow. So this happened.

Ok, so I've been in Tianjin for about a month now. Just over a month, actually. A lot of cool stuff has happened. Including...well, I said in My Problem With Homework that I'd never managed to explain my problem so a teacher understood? No longer true. I've still yet to manage it in English, but I've now done it. 

I translated this into English- it's my side of the conversation, edited a bit to make sure there is enough context for people to understand what I'm talking about, if not always why.

Trigger Warning: Reference to euthanization, Description of ableism (by teachers.)

内容包括：安乐死，残疾歧视

你知道我有问题的时候可能说不出来？我现在知道，如果问题是用中文的时候发生，中文也有说不出来的问题。

安乐死是这一次说不出来的原因。

上课的时候，老师给我们看一张图片。

如果很多人认为你有的一个问题是安乐死的好原因，你也会紧张！

知道老师不同意，而看那张图片还令我紧张，可怕。

我很难自己来开始做什么事情。（在每天持三顿饭，每天洗澡也有问题）。执行功能问题听说过吗？我还没有找到好的办法。如果我找好办法（或者你会帮我找好办法）应该没问题。

这个周末我试一试做好了中文以前不开始数学的。失败了：结果是中文，数学都没有做好。我以为如果我决定做好了中文后才可以做我感兴趣的课会有帮助。（对中文也感兴趣，而对数学更感兴趣。）

开始做什么事情是我的问题。（例如说，我做方便面的时候，2，3次开水才记住把热水放在碗。）

我会忘记我自己要作什么或者我知道要做什么，而很难开始。从一个活动换到另外一个活动也很难。

[老师问我以前做好作业的方法是什么。]

这是我的问题！在美国，我选的课都是上课的时候注意听就会记住，考过。我在每天要预习这样的课从来都有问题。在美国也是这样，而在美国我会选别的课。

我知道我要做。那不是我的问题。在初中，我大多是上另外一门课的时候做作业。有一天，上课的时候做好了七门课的作业。这样做也不行！我知道这样做也不行，而那时候比不做作业好一点。

我以前的做法：

1）选另外一门课（不行）

2）上课的时候做作业（不行）

我要找第三个做法。我需要帮助。

以前，老师只说因为我聪明应该会自己想到怎么做。没有人教我怎么自学。教我怎么做会有帮助。

Bad Idea.

Trigger Warning: Mentions of hate crimes and discrimination against autistic people. Includes murder. Also, lots of "but the family!" stuff.

There was a post to my page, on Facebook. It was marked automatically as spam and I deleted it, so I doubt you saw it, or who it was by or where it linked to. And it was at least a week ago by the time you see this. I could have rearranged my queue to fix that, but... I'm about to rip the post to shreds in many ways, and I suspect the page owner would prefer you not know who they are. (If they show up here and tell me they want the shreds-ripping linked to their page, I'll do it. But I doubt that's the kind of publicity they want.)

Dear Admin I invite you to visit my page I made for my 19 year old Autistic brother, could you please like it and share it with everyone, if you don't mind.

Dear Admin. I know this isn't personal, then. Probably stuck on as many pages as possible. Not a great sign, but eh. I did the same when trying to draw attention to Autistics, not Monsters. I didn't write "Dear Admin," though, and I gave each page a few moments glance to see which pitch would work best.
I made for my 19 year old Autistic brother. You capitalize Autistic, and it's identity first. That's a good sign. But you made it for? I am a bit worried, here. Because, you see, I know how often family members make this sort of page and then share things about their autistic relations they really have no right to publicize, without the consent of the person they post "for." So I worry. 

I'd be grateful . The purpose of my page is to spread awareness about this disorder among common public too.

Awareness. I know that awareness ranges from great to horrible, and I don't trust it because the people doing good awareness tend to also be aiming for acceptance and nowadays often say "autism acceptance." But there are enough who don't know. So, I'm trying not to be too hard.
And I know there are many who still know nothing, or close to it. I disclosed to one, about eight months ago. It was the smoothest disability disclosure I've ever had, and by far the best- he had only my word to take for what being autistic means for me, and no insistence that he knew my disability better than I. (People who have gotten good awareness are fine; people who have gotten bad awareness are far harder to disclose to or talk to than those who know nothing.)

People with Autism are as much a part of this world as we are.

Um. This seems kind of othering. And "we." Um. Hi. I'm Autistic. This is one of my super-huge pet peeves. You do not speak to me like I am a neurotypical family member, you do not write to me like I am a part of some "we" that is different from autistic people. You now get no benefit of any doubts going forward. None. Because you just assumed that the person you wrote to was allistic, and you probably don't even know you did it. You probably never thought of the possibility that an autistic person would read this, but you should have.

About 1 in 88 children has been identified with an autism spectrum disorder (ASD).

OH GOD YOU WENT THERE. No. Stop. Stop right there. Children? I know children is the age group where we've got 1 in 88 diagnosis, but we've got a British study finding 1% autistic spectrum in adults living in households. Not institutions, not group homes, plain old households. So that means that at least 1% of adults are autistic too, stop talking about freaking children like it's just kids who are autistic you are part of the reason people think we're all kids when we're not. You are adding to this problem. And people will ask where the autistic adults are and even with your brother an adult (19>18, he's an adult even if someone decided on guardianship and he's never allowed to use that fact) you probably won't know where we all are because you don't see us and you don't think of the idea that we are here.

The high prevalence of autism is of major public concern, especially for families like mine who are already affected.

 I mean, it is, but not for the reasons I suspect you're going to go for. Especially when you're going "families like mine who are already affected." Know what we need? Civil freaking rights. Medical freaking rights. For people to stop deciding our lives are not worth living. For people to stop giving sympathy to our murderers. For people to quit trying to neglect us to death. For them to stop succeeding. Those things need to be of major public concern. So does education- real education. That doesn't need to mean intensive academics for us any more than it needs to for anyone else, but that same academic rigor needs to be an option if we decide we want it, and not a "you'll have to fight for it and make a national level fuss for it" option. A "here, it's right on the list of paths we're suggesting" option, with accommodations as needed. Just like vocational schools should be, for everyone.
I mean, yes, things like respite care (called babysitting when the kid's not disabled...) are important. Maybe, just maybe, if people weren't fearmongerers with their awareness campaigns, there would be more babysitters willing to learn to work with autistic kids? More extended family members willing to watch their autistic relations?

It's stressful for them and stressful for parents to come to terms with seeing their child change from "normal" to a withdrawn silent stranger who adopt unusual behaviours throwing tantrums, in frustration and depression at not understanding the bewildering world around them.

Ok. So you use the ou, not just the o. Which means you might actually be in Britain. Maybe not, but it's at least possible. If so, that study was in your country, in your newspapers. CHILDREN?! CHILDREN?!
And the whole change from "normal" thing. That's not how it works. Neurotypical kids don't suddenly become autistic. And conflation of meltdown with tantrum is not OK. I was a small child once. I threw tantrums. Not often, but I did. I also had meltdowns. I still have meltdowns and shutdowns both. I have no clue how you would mistake either my meltdown or my shutdown for a tantrum, but apparently people can't be bothered to learn the difference. Either that or they think pushing and pushing and pushing a person in meltdown until they do push back in order to toughen them up or something is smart.

With patience and love we must try to get at least a glimpse of what their world is like.

Or, you could, I don't know, read the things we write! I can't with this. I just can't. With the patience to sit down and read a freaking blog post or book or to sit down and listen to what your autistic relative is telling you, even if spoken language isn't (maybe never is) how they tell you. I can't always talk. Amy Sequenzia never talked. Evie talked a little bit, when she was younger, but she stopped (possibly because seizures, I don't know.) Henry Frost doesn't talk. There's a lot of us who don't talk, or who talked late, who are still saying things, and your autistic relative can tell you things too.
I mean, yes, there is some patience involved in understanding what we want and need, but that doesn't actually require understanding what our lives are really like. I hope "glimpse of their world" isn't a final goal, and the implication that our world is not your world (same world, we just perceive it differently) is kind of creepy. 

The disorder varies from mild to so severe that a person may be almost unable to communicate and need round-the-clock care.

There's a lot more variation than that. It's not a strictly less disabled to strictly more disabled continuum, and it's not a strictly less autistic to strictly more autistic continuum, and even when you can get a general sense that one person is more "obviously" autistic than another that doesn't correspond with generally more disabled, and there's situational differences too. That's before we get into "my child is lower-functioning autistic because of all these conditions that aren't autism." Functioning levels really don't work well. Amanda Baggs wrote about that, a bit, and how dangerous it can be when a person thinks they are strictly more disabled in every way. I imagine family members who think their relative is strictly more disabled in every way are just as dangerous.

I would also like to mention that a large percentage of Autistic children live at home and are supported by their families.

CHILDREN. Want to know the percentage of children in the general population who live at home and are supported by their families? It's pretty big. It is, in fact, considered the normal way for children to live. Shocker.

There are several challenges and hardships faced by such families.

Ok. There are. And you do need more. You're asking in the wrong place. I don't know if you've ever seen the diagram of who you vent at and who you comfort? Disabled person can vent about their disability issues (ableism generally to blame for most of them) to pretty much any close relation. Close relations vent to further relations, friends. And outward it goes. You are a relative of a disabled person. I am Disabled, same disability even. You do not vent to me. You vent elsewhere. You get your resources from further outside the circle, or you take what is offered freely.

Showbiz is a very powerful media and unfortunately used mostly to exploit Autism and to make more market value.

I'd like to know what they are doing to exploit autism and autistic people, according to this person, but my guess is that they're upset about autistic characters on TV because "stop romanticizing autism" (on their page) doesn't sound much like "Autism Speaks, stop fearmongering for money!" to me. It sounds like "You're portraying autistic people as real people with lives but also as the butt of jokes! Stoppit!" Which, um, no. We need to be in stories, we need to see people like us. Do it better, yes, please, but keep us in your stories. The accidental autistic characters shouldn't be better characters than most of the purposefully autistic characters (Dan Harmon's Abed may be an exception. Michael's Clay definitely is.) 

Families with Autistic members are in need of social support and awareness and the fastest way is through media.

That's true enough. But what autistic people need and what you want? Somehow I doubt they are the same.

Please support my page and cause to utilize showbiz to prevail awareness about Autism.

Basically what I said last sentence. I don't think you know what actual autistic people need. More of the same awareness most organizations try to spread isn't it. More family members talking about how hard it is to be related to us isn't it. More people complaining about autistic characters being actual characters isn't it,

My Ransom Note Spoof

I was reading the Disability Studies Quarterly articles that I'm supposed to have read before the ASAN Autism Campus Inclusion thing started (I'm typing this from DC, already there, since I wound up finishing the readings on the plane. Yes, the one that inspired this post was one of the ones read on the plane.)

Reading about the "Ransom Notes" campaign of 2007 and the Disability community/Autistic community response to it, I saw that one mother wrote a bit of a spoof of the ransom note used for autism in the ill-written campaign. So, six years late, I made my own version:

Dear Autism,

You don't have me. I don't have you. You are a part of me. An important part, but not the only one. I will make sure to use the useful parts of you, and I will work with or around the harder parts.

Oh, and you're coming with me on the fight for our rights.

This is only the beginning.

Alyssa

Now I'm going to talk about it.
Autism having me would be kind of silly. Autism is a label that we apply to certain kinds of different brains, and a label having a person just seems silly to me.
Me having autism? Well, I'll use "has autism" in jokes on occasion, like "I have autism and I'm not afraid to use it!" or "I have ALL the autism and you can't have any," but I am very strongly (capitalized) identity-first (and sometimes identity-only) for how I refer to myself. No, really. Calling me a person with autism because you don't know my preference just gets you politely corrected and I'm not even annoyed. Kind of annoyed if you correct someone else because you think they're messing up by calling me autistic, but I'll still be pretty polite. Correct me on what I call myself, though, especially if you keep trying after I tell you that I am well aware of person-first language and choose not to use it, and you are only entitled to as much respect as you're giving me: That's zero, by the way.
As for useful parts, I am hyperlexic/hypergraphic, and I have really good pattern recognition. All your four leaf clovers are found by me. Well, not all, but I find enough that I can and do sell four leaf clover bookmarks and such. I'll probably get them offered in the etsy store crowdsourcing Autreat trips for Autistic people once the store exists.
The harder parts are things like sensory issues, not always being capable of oral speech (but mostly other people being bad about it, since I have text to speech on my laptop,) difficulty with open-ended questions that can be meltdown-inducing at times, some trouble figuring out where I am in space, things like that.
Rights is things like self-determination, being able to get organ transplants, being able to demand and actually get access to public places, and just general not being discriminated against.
And of course, this is only the beginning. Later stuff includes writing an Autistic musical. I already have a decent number of ideas, and I'm fleshing out some of the characters a bit. Rights are important, and we need culture too, with the space to develop it.

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:

Acceptance
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. 

Aware

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?

April is Here- Things You Can Do

Trigger Warnings on some items, listed at relevant items.

No, you're not getting an April Fools post, not unless I get inspired today, and it will be well marked as such at the top if that happens. April is Autism Awareness Month as celebrated by many groups, Autism Acceptance Month as celebrated by Paula, ASAN, TPGA, and large swaths of the Autistic Community, and Autistic Awesomeness Month as called by one Joe Martin at Rhode Island College's Anchor. And that means that the world will be full of autism things, ranging from great to terrible. If the originator of a thing is Autism Speaks, Generation Rescue, or similar, bet on terrible. You're going to want to remember those red flags I listed out a while back, because there is a lot of bad stuff out there.
But here- here is a list of things you can do that will actually help someone.

1. An autistic person in the Philippines is trying to raise the money to present at an autism congress. He only needs about $500 US. Exchange rates are in our favor here, if you're from any of the countries most of my readership comes from. Help him out here, and spread the word.
2. TW: murder of disabled people: A gay autistic teen was lit on fire on his 18th birthday. The sentencing judge described it as a harmless prank gone wrong. There is a petition demanding an apology and that the judge commit to protecting disabled LGBT youth here.
3. I'm just going to put it out there that every petition I have in the sidebar right now is current and relevant. Go sign them, all of them.
4. Amanda Baggs, a nonspeaking autistic disability rights activist, is in the hospital. They started out trying to talk her out of getting a life saving procedure (yes, really.) Since there has been more attention on the hospital about this from things like calling Not Dead Yet and other disability activists spreading this around, they have been better. However, this could change the instant the hospital thinks we aren't paying attention. Amanda is youneedacat on Tumblr and webmuskie is her power of attorney- when things happen, one of them would post it. The hospital phone number is 802-847-0000, and they have online contact forms here, here, and here.
5. Educate people on the very real issues with Autism Speaks. There are lots of resources around for this, including my "Problem with Autism Speaks" tag, the "Autism Speaks, I Want To Say" flash blog, and The Caffeinated Autistic's post about Autism Speaks, which includes links both to other resources and to other good organizations. And remember- Light it UP Blue is an Autism Speaks campaign, so if you see someone doing that, they're one of the ones who needs to be educated.
6. Check out some of the Autism Acceptance efforts. There's Autism Acceptance Day, autismacceptancemonth.com, Thinking Person's Guide To Autism's events... lots of things, and then we have Tone it down Taupe, Shut it up Grey, Light it up BOO, and B-WEAR as counters to Light it UP Blue.
7. Because PATTERNS! is selling prints, with 25% of the proceeds of Autism Acceptance prints sold in April and 10% of the proceeds of all other prints sold in April and Autism Acceptance prints sold after April being donated to the Autistic Self Advocacy Network. Remember, Because PATTERNS! is me, so the other 75% goes into the pocket of an autistic person too. (Any design that is square in shape can be a print, $25 for an 8x10 with the design a 7x7 square, a number and artist signature at the bottom, and Autism Acceptance captions on relevant designs by default and other designs by request, $15 for a similar 4x6 print, design at 4x4 square. A custom caption is an additional $5.) There will be a storefront, or you can use my PayPal account of becausepatterns@gmail.com with your shipping address, what design you want, and which size print you want in the note.
8. Think Geek is selling Neurodiversity T-shirts again, and a portion of the proceeds is going to go to ASAN, an autism organization that actually does useful things.
9. CafePress let people vote on which autism organizations would get money from the autism awareness month things. Autism Speaks and ASAN will both be getting 5% each, which is better than most (but not all) autism awareness things in that not all of the money goes to Autism Speaks. Because PATTERNS does have an Autism Acceptance section on CafePress, by the way. 
10. Backstage Humor is aiming to be a neurodiversity-friendly entertainment site, and they will be raising start-up funds. I'll update here with a link as soon as it's up.
11. If you want to give money directly to a group, my recommendations would be Autistic Self-Advocacy Network, Autism Women's Network, or Doug Flutie. (Yes, Doug Flutie uses fear rhetoric, but the money that goes to them actually does good things, so I'm willing to deal with them.)
12. Go find things that other autistic people want you to do to help them and do them. 
13. Assume that any autistic people in your life understand the things you say about them in front of them, and take the time to listen to what they tell you, even if it takes time and work.
14. Spread this list around so that other people can see a list of things that are actually helpful.

Autism Speaks, I Want To Say

Before I even watched the documentary, reading your description on your site gave me a pretty good idea about what I want to say.
From it:
Autism Speaks, I want to say that for something "about" AAC, the described focus is all wrong. It shouldn't be about the parent's emotional struggle to communicate because it's about the kids. It shouldn't be highlighting the increased diagnosis because that's not the point of AAC at all. The hope and promise of AAC is potentially good, though knowing your organization, I wasn't convinced the hope and promise that you described would be the one of "how this actually helps AAC users."
Watching it, in the first minute I had to pause, cringe, wait to calm down. There was SO MUCH touching of the kid, and there was no way to get his permission because he didn't have his AAC out to answer or anything. Yes, I know that she's probably his mom, but... I'm Autistic. I have touch sensitivities. That kind of constant light touch drives me nuts. Then they got him set up. (He's using what looks like FC?! Was not expecting Autism Speaks to use that, I'm... actually kind of impressed by that, but, like, why "I am excited"? That's not actually telling us what he wants to say, which is the title of this...
And then they call autism a nightmare. NO NO NO NO NO.
Autism Speaks, I want to say that you need to stop using that kind of rhetoric because it is actively hurting the population you aim to serve. I don't care why you think calling autism a nightmare is OK, I don't care what context you think you have to justify it, you need to stop doing that, and NOW.
Autism Speaks, I want to point out the irony in having your autism expert say on camera that other's ignorance is responsible for some of our suffering when it is your brand of awareness that causes it. Yes, you. I have dealt with the ignorance of "never heard of autism before" and I have dealt with the ignorance of "educated on autism by Autism Speaks." The latter is far worse. Autism Speaks, I want to say that you are part of the problem by your own description.
I don't know if the things that we see on the screen next were things that the featured AAC users actually typed, but if it was not by them, another person with autism, or an autistic person, then it should not have featured. It's dishonest to mix things AAC users actually typed with things that we only imagine them to have typed, so it needs to be clear which is which. (I could see those things having been typed by a person bearing the education of Autism Speaks on what it is to be autistic, what it is to be non-speaking, so I could believe that this paragraph is moot. But I could also see it not being moot, since we know that Autism Speaks has written in first person about things that they are not in the past.)
And then we cut to kids doing things that I have done, some of which I still do. I suppose it is supposed to be illustrating how different and tragic we are? I don't know, they just look like kids to me. Autism Speaks, I want to know what the purpose of that was, because different and bad are not the same and either that scene was pointless or you're using the merely weird as evidence of bad.
Almost 3 minutes in, we see an AAC user typing a thing that has substance. "I am ready to change the way people view us." So am I, so am I. Autism Speaks isn't going to do that in the way I'm guessing and hoping you would like to see, always viewing you as a cut below normal, but goodness do I want the way people view us to change. It's part of why I'm here.
Now we get to the part that highlights the increasing diagnosis.
Autism Speaks, I want to say that you really need to quit it with comparing autism to AIDS, diabetes, or cancer. Not that those are particularly great to compare to each other, even, but they all have "has the ability to be fatal on its own" in common, at least if left untreated. Autism can't do that. Autism Speaks, I want to say that you need to stop comparing autism to death, stop calling autism a nightmare, stop making it about the parents, stop focusing your conversation, well, anywhere except the autistic people and what will help us most. (Hint: Actually giving nonspeaking people iPads and other AAC devices and paying for them to be taught to use them is a better use of your money than pretty much anything else you do, including making this video.)
"He's really sweet for being an autistic child."
Autism Speaks, I want to say that if you have provided the education that leads people to think that is a compliment, rather than the statement that autistic children, autistic people, can't be sweet, then you are Doing It Wrong. And yes, I feel safe saying that you're the group that provided the "education" leading there. Acceptance does not mean thinking we are sweet... for autistic people. It means understanding that we have the full range of sweetness and meanness and happiness and sadness and anger and frustration that all people have, realizing that anything ending with "for an autistic person" is stereotyping us and going to be wrong, going to be bad.
Autism Speaks, I want to say that leading parents to believe that they know for sure that curing their childs autism would lead to them having a happier life is not autism acceptance. I want to say that it is, in fact, the opposite of acceptance, and it isn't even true. Being autistic doesn't prevent happiness. It is a failure of this "theory of mind" so many claim we lack to assume that we must view our lives as you view them. Remember that we have never lived another way, remember that autistic people have this tendency to not like change, remember that our life of experience will still be of things that line up with autistic, remember that there is no way to make everything as if we never were and that a neurotypical mind with autistic memories is not a combination that is going to work well. It is one that will lead to all kinds of confusion, all kinds of pain. Happier? I doubt it. More normal seeming? I'm sure of it. And I think that conflating normal with happy is one of your main rhetorical issues. Maybe it always has been, that and conflating different with bad and the specific difference of autism with death and despair and nightmares of your own creation.
And Autism Speaks, I want to say that speech and communication are not the same thing. In a piece about AAC, you should know better than to have the two conflated. It's not the same. Some autistic people will develop speech "on time," others later, others never, some speak and then stop, and keeping speech linked to what we want to communicate takes a lot of work for many of us. Keeping our AAC linked to what we want to say is often easier, even for those of us who do speak. Typing is more reliable communication than oral speech for many of us.
Autism Speaks, I want to say that the purpose of AAC is communication. It is not, was not, should not be to make us more normal, but to let us express ourselves as we are.
Autism Speaks, I want to say that conflating whatever it is that means a kid is in constant pain with the fact that he is autistic? That's not responsible. Like, at all. Because, yeah, sensory issues are a thing, but "failing to accommodate sensory issues" isn't autism, assorted chronic pain conditions aren't autism, autism on its own doesn't do that.
Autism Speaks, I want to say that "swallowed by his autism" isn't an OK way to describe anyone. Ever.
Autism Speaks, I want to say that not being able to communicate in ways that others understand does not imply a disconnect with the world as a whole, just with the people who can't understand. There is a lot of world besides just other people. And there are a lot of things that can be communicated through behavior, even negative behavior, if only you know how to listen. "Autism Speaks, it's time to listen." Sound familiar? Well, Autism Speaks, it's time to listen to the behaviors in front of you, because behavior is communication and part of meeting us halfway is understanding that, even if it takes longer to figure out exactly what it is communicating.
Autism Speaks, I want to say that oral speech and communication are not to be conflated. Even in a video about AAC, you are making that conflation. It needs to stop.
Autism Speaks, I want to say that realizing that every autistic person whose hands you got communication into could, in fact, communicate, was, in fact, competent and thinking, should be a step. It should be a step towards presuming competence for all autistic people, for getting communication into the hands of all autistic people. If you are truly out for our best interests (I know you aren't but hey, let's offer up what you would do if you are,) the thing to do is to make sure that every autistic person has access to AAC, that AAC meetings are one of the first things done. Maybe the first. Because an autistic person who communicates in ways that others understand can and should take an active part in deciding what to work on and how. An autistic person who types can speak for themself.
Autism Speaks, I want to say that "these children are normal!" is not the proper follow up to the glimpse of understanding that they are competent. They are wired differently in fundamental ways, they experience the world differently in fundamental ways, just as I do. They are not your illusion of normal, and they never will be, and that's fine. They don't need to be. They are human, and they are autistic, and they are completely distinguishable from their peers, and all of these are fine and good and none of them contradict each other and normal is an illusion that no autistic person should be forced to emulate.
Autism Speaks, I want to say that normal isn't the point. Normal was never the point. AAC is for communication, not for normal. If it were for normal, I would have let people thought I was "just quiet." No, I am a part time AAC user, and my friends have, by and large, seen me use it. I've gone out and socialized beyond what I needed to do, using AAC, because I wanted to spend time with friends. If normal were the point, I would have gone home. None of them had realized speech had gone kaput on me until I pulled out the iPad. But communication is the point, along with everything communication can lead to. Socialization, writing things that move others, telling others about your decisions and, if so chosen, why you made the decision you made. Wants, needs, hopes, dreams. AAC lets us tell of those. It's not about normal, it's about showing the unique and completely distinguishable selves that we are.
"I want to say I think technology has changed my life. I can communicate with the world, and I have choices in my life." Yes. She gets it. Most of this video suggests to me that you don't get it, Autism Speaks, but she gets it. She knows what this is for, she knows how this makes her life better, and those words are the sign of a self-advocate blooming. (Yes, self-advocate. Right now, she is advocating for herself, though if she does as she says she plans, the activist is coming.)
That's not to say there was nothing good here. They showed a range of people. They showed boys and girls, they showed people of color. They showed what looks like reading off what they had typed, which is related to how AAC helps people develop oral speech. (Yeah, AAC use makes nonspeaking autistic people more likely to develop oral speech and to do so faster. Also, for part-time users like me, I find that "reading things I have already typed" lasts longer than "just speaking" when speech is going kaput.) They showed Kayla, the same one who typed about technology changing her life, being at what seems to be college. Yes, college.
But those good things don't make the video as a whole good.
Autism Speaks, I want to say that your metaphors and rhetoric for autism are just as damaging as ever, just more manipulative and better hidden. I'm not sure that's actually better.
Autism Speaks, I want to say that your videos about us aren't even really about us, but about our parents and teachers speaking about AAC as if it is some sort of magic.
Autism Speaks, I want to say that making it about others views of what we do is part of what's wrong with this.
Autism Speaks, I want to say that you need to do better, and I want to say that doing so will require fundamental changes, not just surface paint.
And Autism Speaks, I want to say that I will keep saying these things, and that I and my Autistic brethren will keep typing and speaking.
Autism Speaks, it's time for YOU to listen, and to hear, and to answer. For real.