Some things shift. Some don't.

This is coming from my personal experience writing for TPGA's dialogue series. This is extraordinarily, probably obnoxiously, me-centering rather than autistic community centering. It's not taking posts about the dialogues on other blogs into account even a little. Those other reflections may come later. They may not.

The post I wrote for TPGA is easily the most emotionally taxing thing I have ever written. There are a lot of uncomfortable associations with what I wrote about, and with the stories I decided to not tell yet as well.

I wrote that post with the full expectation that I'd be yelled at, accused of being unempathetic, have my words or meaning misinterpreted and misrepresented, told that I was "lucky" for whyever (because I could get into a Y? I don't know). That's my default assumption when I write, especially when I write for a mostly allistic audience, and even more especially when I am sharing uncomfortable truths. That's frequently what happens-I get yelled at a lot.

Mostly, my self-protective cynicism wasn't necessary, at least not in regards to my post and reactions to it. This is kind of overwhelming really-I'm not totally sure how to handle people being so nice to me. Don't stop or anything; it's a wonderful kind of unsettling to have people say they've got my back. I just don't really know how to deal with it.

A number of lovely people are encouraging a bit of a shift in my cynicism & knee-jerk wariness of autism community people who aren't autistic community people. It's a small shift for now, but what has to be a few hundred people didn't yell at me. I wrote something uncomfortable and difficult and no one yelled at me. This shouldn't be a big thing, but it is. A touch of the tarnish on humanity's reputation with me was wiped away, just a little.

But don't think for a second this means that I am going to change what I write about or how I write it. I know that I say a lot of difficult, uncomfortable things. I know the frustration from being an autistic in an allistic land and the frustration from living some truly hellish times shows. It's still going to. People are going to find things uncomfortable, but you know what?

It needs saying. Discomfort leads to growth. And barring specific triggers (which I do try to put warnings for), you can probably handle it. Many autistic people have dealt with similar things and said similar things to what I have experienced and what I have said. They know it is the way of things, for better or (usually) worse. Allistic people? You need to-yes, need to-know not just the "heartwarming" or "inspiring" or the nonthreateningly insightful or the sanitized autibiography stuff. You need to know the awful, uncomfortable things too. Those things need to be acknowledged to be abolished.

You acknowledged the ugly side of my truths, allistic allies and potential allies. You acknowledged that they're both ugly and truth. I make you uncomfortable not to be mean, but to create a more beautiful truth in the future.

Well-Behaved Autists Rarely Make History: Why "Bad Autistics" Are Good Activists

It's not difficult to figure out how to be a "good" autistic. Just preface everything you say with "this only applies to me, of course" or "I'm quite high-functioning, but," apologize for existing. A good autistic answers every question, no matter how invasive, that a neurotypical person asks. A good autistic is honored that parents give them the time of day, praises said parents regardless of how they treat their kid, never questions NT supremacy or authority.

I am a bad autistic.

Bad autistics demand to be treated as human. We are not afraid to call people out on treating us-or their children-poorly. We say that asking us intensely personal questions is inappropriate. We are not honored by being "allowed" to be universal translators or self-narrating zoo exhibits. We don't apologetically state our experiences, all wrapped in disclaimers that no other freak like us will necessarily experience the same thing the way we did. Many of us reject functioning labels entirely. We do not praise parents for not drowning us in childhood; we know that is not praiseworthy.

We want and demand more than that. We want more for ourselves. We want more for the "good autistics, who have stumbled on a way to be bullied less. We want more for the children of the very parents who vilify us. Where a good autie is told "I hope my child grows up to be like you," I am told "if my child could argue like you do, I'd consider them cured." This is not a compliment-it is a silencing tactic.

I and other uppity auties I know have received death threats. Our diagnoses are constantly questions; really real autistics are apparently unable to have our own opinions on autism. We are called delusional, we are told we are bitter, angry, too emotionally connected to the issue to be rational. Knives have been pulled on activists. We are told that there is no way we can actually like who we are. We are vilified and maligned constantly.

It's not easy. Most of us have PTSD from childhood bullying and abuse-parents have told me, incidentally, that abusing me was acceptable and understandable. And yet, we persist in fighting the good fight.

Why? Because it's important, that's why. No one should treat anyone that way. They do it because it is socially acceptable. I want better for me. I want better for their children. I'm idealistic enough to think that they probably want better for their children. I want a world where "good autistics" are not afraid to contradict a parent. I want a world where my humanity is a given, not something I have to fight for. I want a world where people who bully and abuse people like me are seen as the monsters they are.

First they ignore you, then they laugh at you, then they fight you, then you win. I'm a bad autistic and I intend to win.

"What Would Meeting You Halfway Be?"

My friend asked me this after class with an "aware" teacher. And I was flabbergasted.

I have no answer to that question. I don't even have the shape of an answer, much less words, a description.

Meeting us halfway just isn't done. No one considers it as an option. It's a tidbit of ableism that is so entrenched that I never considered it; autistics do all the work is just how it is. We give 95%, everyone else complains about the 3% they grudgingly give & then they demand that we meet them halfway-because 97% is the new half.

It never occurred to me that they are fully capable of giving more. I don't know why, just that they don't. A communication problem must have at least 2 sides, yet "I have a communication disorder, so this is my problem" is the way it is. It's how it has always been. It's how things will continue to be for the forseeable future.

I still don't have an answer to my friend's query. I guess part of meeting me halfway would be ditching preconcieved notions that I can (or cannot) do something based on my skill-or lack thereof-in another area. Part is not assuming or using communication between the lines. Take stims as they are. Take me as I am-everything I do has a reason, but fretting about that odd thing I do isn't meeting me halfway; it is othering. Don't other me.

But really, I do not have an answer. I could not tell anyone how to meet me truly in the middle. I don't know what it feels like. If it's like my social experiences at conferences, it's both a freeing level of acceptance and something the NT majority will never achieve in my lifetime. It's not something they can or will do.

I don't know where halfway is, and I quite likely never will. There, I guess, is the answer.

Be aware of THIS

This was my 2008 Autism Awareness Month post.

Ah April, the true cruelest month, at least if you are autistic or sympathetic towards autistics and what we really think. "Autism Awareness Month", they call it. Awareness of what? It seems more and more to be awareness that many parents feel cheated because they didn't get the typical or supertypical child they feel they so richly deserved, a month of awareness of how the PARENTS feel they suffer, a month of awareness of all the things they are putting the child through to put themselves out of their misery. Quackery awareness month, even, but of course no one will come out and call a spade an effing shovel because autistic people don't count in this society. That's right, it's a f*ing shovel.

With that in mind in this vomitous puzzle piece bedecked month, here are some things to keep in mind if you intend to "do something for awareness" or are bombarded by people who are (or are asking you why you aren't):

1. "Awareness" is not the same thing as information. I can get 10,000 people to wear a puzzle ribbon pretty easily but that doesn't mean they know a blessed thing about autism. "Awareness" is crap.

2. "Awareness" is a vague goal, in addition to being crap. Awareness of what? Awareness of what autism IS? No, no one exactly knows and that's too much like information. Awareness that adults need services too? No, we don't look cute on their posters. Awareness that autism is more than just people smearing shit and banging their heads? No, that makes us sound too much like people. Awareness that many parents think that ohnoesvaxxeenzeetbabeez and they need to follow their GooglePhD protocol to rescue them and need YOUR MONEY to do it? That particular faction shouts the loudest. Note how few autistic people are served by "awareness".

3. Please be AWARE that autistic people are just that, PEOPLE. We don't need the dehumanization that nearly invariably comes with the "human interest" stories. Even if we don't talk, we can hear and pick up on the attitude that exudes from these pieces.

4. Please also be AWARE that we are AWARE of autism year round, and thus don't necessarily feel the need to do more than we do every day-namely, being ourselves. Conversely, if other people happen to notice us being ourselves more during April, that isn't necessarily us "acting out", but so called awareness making people more aware or self conscious or whatever. The rest of the world can suck it up and deal.

5. Consider that we may not want to read every article on autism, go to every (or even ANY) autism event, or watch every program. See dehumanizing, above. This holds especially true for anti cure folks and those of us who have more than had our fill of the dehumanizing vomitous pity party garbage.

6. Be AWARE of not just the "valiant struggling parents", but also the children and adults who are doing well, the ones who aren't doing well, and the ones who are doing what THEY consider well and are happy.

7. Be especially AWARE of the autistics who's parents, caregivers, and others bought into their own self pity and have done terrible, often irreversible things to them. NEVER EVER forget those who are no longer with us, for the crime of being autistic.

I really hate Autism Awareness Month. For my part, I will be being myself and perhaps breaking out a couple of my more pointed neurodiversity shirts. That's about it. I don't do big bursts of awareness.

Alternative Autism Awareness

This is a repost from April 2006. It's one of the first blog posts I ever wrote ever.

Autism Awareness Month?

Or is it "Fundraise for cash to get rid of autistics month"? Anyone who isn't AWARE by now lives under a rock. So. What do we do about it?

I propose an alternative way of celebrating. Forget the fundraisers. NAAR, CAN, DAN!, MOMA, AutismWeeps, all those organizations can piss off. Let's make people REALLY aware of autism.

When April rolls around, I make a point of stimming in public. A LOT. Not hiding the lack of eye contact. Wearing shirts that I made myself and the one I have from ANI that have autism-positive wording. I've been known to make people "talk" to me in writing. Sensory simulations for NTs, done well, will make them aware all right, but it's important to emphasize that it's the world's turn to change, not ours. We've adapted to their world since the beginning.

If I could get the gig, I'd talk to school kids about autism and how it isn't bad, just different. Get them while they're young. Teaching autistics about their unique brains is another one I want to do on a larger scale. We need more "unique", "talented", "what a great kid!" and less "emergency," "epidemic," "tsunami" language.

The most important thing isn't getting rid of the ghastly puzzle ribbon (though I sure wish we could!). It is making people aware of what we are good at, as a group and individually, instead of just where our weak spots are. Educating people that being autistic is OK. Even being nonverbal is OK (alternative communication anyone?). Teaching them that cure isn't the answer, but instead meeting us halfway. Teaching them that abuse isn't necessary to for us to learn skills.

We don't need Autism Awareness Month. We need Autism EDUCATION Month. Educating educators, parents, other professionals, random kids and adults in public, and educating OURSELVES. This is what we should be doing. If only the big organizations could see it...

Loving Lamposts

"He knows he used to have autism and that makes him sad."

This statement in the documentary Loving Lampposts has been haunting me. It is among the most tragic sentiments I've ever heard. My heart aches for that child-not because he 'had' autism, but because who he is is seen as shameful. His brother was described as "having some of the same thought processes as autistic children...but if anything, he's gifted."

And attitudes like that, attitudes that autism is a horrorshow and we're all doomed to utter incompetence, is why Loving Lammposts gets happy flappies from me.

Why?

This documentary leaps in where angels fear to tread: Todd Drezner interviewed people on all fronts of the autism wars. He talked to Jenny McCarthy. He talked to people selling quack treatments. He talked to cure-oriented parents buying those treatments. He talked to true believers in the vaccine hypothesis. He talked to scientists, experts, and 'experts.' He talked to acceptance-focused parents. And he talked to autistics.

Representing all factions in the often heated discussion about autism is no easy task. How can it be, when one group is convinced another is malignantly misguided, and another is convinced that their opposition wants their kids to fester, and more people are convinced an autistic isn't an autistic if they have an opinion on autism? It's hard enough to wrap your head around the idea-now try presenting all viewpoints in a respectful manner in a fairly short documentary. Yeah, like that's possible.

Except apparently it is, because Loving Lampposts is exactly that. Everyone has their say. Even we have our say, which doesn't happen in the autism world much.

Through interviews, Drezner put human faces to all the views on autism. That's something that gets lost in the heat around autism-that everyone involved is a human. The parents who are frantic to fix their 'broken' kid are human. Those kids? Also human. The parents who are striving not to fix but understand? So human that I wanted to reach out and give some hugs. And their children? And the autistic adults? Three dimensional really real people.

I've been anticipating this documentary since I met the production crew at AutCom in 2007. It was worth the wait-I've been recommending it to everyone who wants to know about the autistic community, the autism communities, and their relationships to each other.

Loving Lampposts is a slice of getting it that exceeded my expectations. A++, would watch again (and again...and again...and again).

Thoughts for Budding Advocates

I've been around advocacy for a while-long enough that I'm baffled that people don't know what neurodiversity is & can't believe that people don't know why r*tarded is offensive, but not so long that I really expect to be 'known'. I've been called a firecracker, a force of nature, & the irresistible force meeting an immovable object-those are my qualifications to write on the matter.

This is directed at those of you who are just finding a passion & something worth speaking out about.

Know that it isn't always easy. Know that it gets harder before it gets easier, & that's not necessarily change, but you getting used to the work.

Know that people tend to hold to their prejudices. They may not take kindly to their behavior being called out. It's up to you whether or not that's a part of the battle you wish to take on-I do, but I'm not going to think less of you if it's not something you're taking on at this time. Do what you can do, y'know?

Know that as you get involved in causes-particularly social justice sorts of causes-you'll pick up on more things as unjust. You can try to save the world, but you'll burn out. We all do what we can, right?

Don't be afraid to get angry. Effective activism and polite activism are mutually exclusive. Harness your anger for what you are trying to accomplish. It's ok to offend people sometimes--they can't be offended if they aren't listening.

If you need to take a break, do it. This isn't always an easy thing, activism. That's why it's best to do what you really mean, what you really believe in.

Other people are fighting your fight too. They're your allies. They may not be your friends, but they are on your side.

Good luck changing the world, even a little.

Inaugural Post: Autistics Speak Day

I believe AEIOU had the best of intentions. I really do.

The road to hell, however, is paved with said good intentions. Good intentions are behind many, if not most, efforts "on behalf of" a group that's frequently othered. Autistics in many way are the ultimate other--our nonverbal cues are different, our use of language is often different, our sensory processing is different and often inconsistent, we look like everyone else and yet are so fundamentally NOT that many of us are pretty squarely in the uncanny valley. People just don't know what to think of us, but they don't see us as 'same' enough to just ask us.

As an autistic, I implore you: Ask us what we want. Ask us what we need. Ask us what it is to be us. I can't answer "what's it like to be autistic", because I have been nothing else, but I can tell you what I am experiencing. I can tell you that I cannot tell the difference between pain and nausea consistently, I can tell you that I discovered dizziness recently and it fills me with as much joy as flying, I can tell you what my eyes see when I look where you're looking, I can tell you what your words mean to me.

I can tell you what it is to be constantly regarded as broken. I can tell you what general society does to reinforce this. I can tell you what it feels like to be assumed incompetent in areas where I am brilliant, and I can tell you what it feels like to be assumed brilliant in areas in which I am completely incompetent. I can tell you what your assumptions do to me. I may not get the hidden meanings you are intending, but I can tell you what hidden messages you reveal.

I can tell you what it means when I stare at the lights. I can tell you what it means when I jump up and down. I can tell you what that squeal meant. I can tell you why I sat down in the middle of the street. I can tell you what my behavior means. I can tell you that all that behavior, it's communication of some kind. It all has meaning.

And I can tell you absolutely that my communication issues are not just a failure on my side. Communication is a process in which people both send and receive messages. I send messages. I send a lot of messages. They may not all be in your language of saying one thing and meaning something else as indicated by body language and tone of voice, but I send messages. Even when I'm so postictal I do not remember where I am or how I got there, I am sending messages and trying to receive yours. Even when I am so fried that words just aren't happening, there are messages.

The message that the communication shutdown and similar initiatives gives me is one of profound misunderstanding of what it is to be in my brain and brains like mine. Initiatives like that say to me that they believe the communication issue is all my problem. But it isn't. Not speaking isn't the same as not listening. Not speaking isn't the same as not communicating.

If you really want to know what it is to be autistic, don't take a break from Farmville. No one even cares about Farmville. Ask an autistic specific questions about what it is to be us. Spend a day having everything you say challenged because you aren't the right kind of...something to matter. Spend a day experiencing outside of the box.

Instead of shutting off communication, open up the lines with an autistic. Receive our messages instead of assuming. That's way more for autistics than a facebook charity app ever could be.