Sunday, December 16, 2012

Plea from the scariest kid on the block

Yet another mass killing. Yet another tragedy. It is terrible. It is horrible. It is wrong.

People are scared.

People are looking for a group to be scared of.

Ladies, gentlemen, other august personages, I am the monster you are afraid of. For my entire life I have been. The reasoning changes, but I always come down on the wrong side of the line. I am always who the media, the talking heads, the papers, now the blogs, who the people you listen to tell me to fear.

And this makes being me terrifying. It makes being me unsafe.

First, it was being an abused child from what they call a broken home. Abused children commit all sorts of violence, you see. We are dangerous and unpredictable because we grew up with violence and that is all we know. We are ticking time bombs, we have no empathy, our dysfunctional unstable home lives have made us fragile at best, cold blooded killers at worst.

So isolate us. Keep your children away from us. Warn every one that we are dangerous because of what our families are like. Make sure that everyone knows that we-not our abusers, but we-are the scariest thing on the block.

Do you remember all the news reports and such emphasizing the terribility of home lives of serial killers and mass murderers during these time periods? I do. I do in great detail-because I remember relating. And I remember staying up nights horrified that they were a glimpse into the only future open to me. I was 9 years old and scared shitless that my only career option was as a mass killer-because the media had everyone convinced that's what happens to children with childhoods like mine.

And because the other adults around me made it very clear that I was the scariest thing on the block.

I was isolated. I was alone.

Then that went out of vogue.

For about 10 minutes I was safe.

Then another terrible tragedy happened, and they found a new scapegoat, and I was in an even more precarious position than before: the new problem was children and teens who were bullied.

I have been able to write about my parents. I have not been able to write about the bullying I experienced without being too triggered to function. It was that bad. Again, I was dangerous.

Again, people were telling their nice, 'normal' children to stay away from the bullied children. Isolating us-making us further targets. And making us more alone. Warning everyone that we were dangerous, the scariest thing on the block again-this time I was scary not just because of my family, but because I got locked into lockers by my peers. We are dangerous and unpredictable because we didn't have the skills and characteristics to not be at the bottom of the pecking order of middle school.

So obviously the answer was to isolate us more lest we 'snap', to fear us and let bullies to their thing, rather than to do anything about bullying. We are damaged, terrifying, violent, dangerous, irredeemable. We are the middle school monsters of your nightmares.

Again, I was the middle school monsters of my own nightmares, too. Literal nightmares, I'm talking. Still everything around me was telling me that because of things outside my control I was destined to go out in a blaze of violence and take as many people as I could with me. That was the career path being offered to me. Never mind that I knew (and still know) exactly nothing about weapons more volatile than bows and arrows, never mind that I am reluctant to physically defend myself, much less be the aggressor, this is what life had to offer me.

Because I was a target, because I was different, I was still what everyone feared. Everyone was telling you to fear me. No one even thought about the bullied kids seeing these news reports. They just knew about you normal folks, and that you needed to be safe from people like me. They couldn't tell you a single thing about the mass killers except that they were in this one category-so, literally, they told you a single thing-and that single thing was what made them dangerous.

It made me dangerous.

Isolate me. Make me alone. Fear me. Abuse me some more. Make me more dangerous. It doesn't matter, I am unsafe no matter what you do. The news-all the news-says so.

And now. Now I am 30 years old.

I am still literally losing sleep, wondering if or when that transformation is supposed to happen. I know logically it will not happen. I know I have no interest in hurting anyone. I know the statistics on who actually commits this sort of violence. I know my history is not going to magically impart a knowledge of guns or explosives or a desire to hurt a large number of people. My anger and hurt do not manifest that way, they never have, and that is not going to change.

But now autism is the scapegoat du jour. Now every time someone does something violent, they are speculated to be autistic. And, just as some killers who were speculated to have crappy home lives actually did, just as the Columbine killers actually were bullied, there is a possibility that there will be a mass shooter who is Autistic.

But that does not make all of us dangerous. The immediate speculation makes my blood run cold.

It brings bile to my throat and a panic to my chest.

Have we learned nothing? Have the bullied children and abused children and medicated children and other scapegoats who have done no violence learned nothing? Passing the hot potato is a relief, but it is wrong.

Passing the blame down to another group without power hurts people.

They will be isolated. They will be alone. They will be hurt.

I do not want another child, a single other child, to be hurt by their peers for being 'dangerous'. I do not want a single other child to be thought a 'ticking timebomb' by the adults in their life. They treat you with fear and they treat you with loathing when they are afraid of you.
I do not want another kid loathed because the media decided to pin the blame on their brain. I do not want another child being isolated, gossip about why to steer clear spread through whispers and subtle finger pointing.


I do not want another child to have nightmares like I did-like I still do-of being some sort of sleeper agent who has no other career path because of self fulfilling prophesies. I cannot even explain what this fear is like, and the fewer people who understand it, the better.

This has got to stop.

It's to late to stop for my sake. The damage was done by the time we got to “bullied kids are dangerous”. But it is not too late to stop for the sake of today's autistic children.

Friday, November 30, 2012

What i faxed to House Committee Hearing on Autism

Yesterday, I sat in front of my computer for several hours watching you have a discussion about people like me. For hours and hours I watched you talk about people like me as though we cannot hear you calling us an emergency, a crisis, a burden, a tsunami, hopeless, an unfortunate situation, poisoned, damaged. Always the horrific language. Always about children. Always children you claim to love.

All this talk of vaccines, of blame, of hate. I found myself asking again and again, why do you hate us so much? And why are we so invisible, that you can't even get past hating your kids enough to see that they hear you and that they grow up and that their adult counterparts are listening right now?

And then I heard Eleanor Holmes Norton speak up.

She asked about adults. She asked what happens to us if we are not in the system, if we are late diagnosed. She asked about people like me-autistic adults. People who the rest of the hearing seemed content to ignore the existence of.

And no one had an answer for Congresswoman Norton. But I do.

Congresswoman, I was diagnosed as a small child, but since I learned how to talk as a not much larger child your colleague Burton probably thinks I don't count. Since I could make it academically, and the goal of early intervention programs in those days (and many these days) is “mainstream kindergarten”, there are a whole lot of issues that were written off as behavioral, as choice, rather than as neurological.

Things like sensory issues.

Things like sequencing problems.

Things like inconsistent ability to functionally use language.

Things like not having a single friend in my grade.

Things like inability to remember and carry out auditory directions.

Things like an inability to get through a day in regular ed without melting down because I was so overwhelmed. Not when I was 5. Not when I was 8. When I was 15.

I am intelligent, I am academically capable, but there are things that I just. Can. Not. Do. And no telling me to try harder or just act normal or whatever was going to do it.

Congresswoman Norton, someone told you that our families thought we were quirky and took care of us. That person was incorrect. So incorrect.

By very early adulthood, my mother's war on autism (only since I can talk, I was “cured”, it was a war on weirdness, misbehavior, disrespect, what she perceived as willful faux cluelessness and laziness) had escalated to frank abuse, & she kicked me out of the house.

It was January. I was a statistic-a homeless autistic person. One of far, far too many.

I had read on the internet that services are a thing, that housing for people with disabilities is a thing, so I went to the local Arc to apply for services or at least get help applying for services. Do you know what they told me?

They told me that they had to talk to my parents. I was a legal adult, have never been under guardianship, and they would not talk to me, but only my parents. The parents who threw me out of their house after abusing me for years. THOSE parents. Those were the only people the Arc would interface with. They had no protocol whatsoever for working with adults with developmental disabilities who are independent but need a little help. Their one suggested resource, the local center for independent living, would not touch me with a 10 foot pole since I have developmental, not physical, disabilities.

The social safety net for all people is barely more navigable. It's more navigable in that it didn't require my mother. It's less navigable in that it required sitting in sensory hell for 4 hours waiting for them to call my number, every piece of documentation of income (or lack thereof) known to man, and it required making phone calls that never got returned on their schedule.

I would have starved to death waiting for foodstamps had another autistic person who has better phone skills than me-which is not difficult, incidentally-not called the worker who was supposed to call me back several times when they were not returning my calls.

And, Congresswoman Norton, I was one of the lucky ones. When I got kicked out, I got into a nice shelter, if such a thing can be said to exist. I was safer there than I was in my parents' home. I had someone who would call social service workers for me. I had a doctor who would fill out paperwork to keep me on necessary medication even though it is a pain in the ass. I had a social support structure that a lot of my Autistic peers just don't HAVE. The parent-centric service model was detrimental to my life, but it ends the lives of others.

This should not be the good outcome story here.

I'll tell you what happens to adult autistics, Congresswoman Norton: we don't fall into the cracks. We are shoved into the cracks. Those who deny our existence, like your colleagues, are doing nothing but shoving harder.

Wednesday, November 28, 2012

How my language happens. (or: I'm not as articulate as you think)

One of the ways people try to tell me I don't count is to tell me I am so articulate.

But the thing is, I am not. Not under most circumstances.

To make really good, clear language happen, I have to be responding to a stimulus. Most of my blog posts? There is something strong I am reacting to. I have to react to it. The words are there. I have to get them out. I cannot rest until I get them out.

And once they're gone, they're gone. They will never be as good as they were the first time, because the urgent burning need to make myself heard & understood, to express those words? The words don't get that they weren't heard. The words happened. They're gone.

Without something to react to, I'm actually not all that good at words. Give me something to feel passionate about, something that needs to be responded to, & enough things are firing that what comes out is good, maybe even beautiful. But without all that? Not so much. I'm not going to give you a full rundown of the things that are weird with how I word here, because no, but I assure you, my day to day nonprovoked language use is not anything like how I write.

I'm only articulate when the words are desperate to be heard & be free. Then & only then.

Monday, November 5, 2012

Orycon are liars

...or else they're so incompetent they can't find their asses with 2 hands & a map.

For those of you playing along at home, Orycon told Dora that they would be cancelling the no Autistics involved autism panel.

What happened instead? According to someone who was actually there, the following events:

-The door of the panel still references autism. The people who elected to go against con staff instructions (if I am being charitable) or who were asked by con staff to ignore the cancellation (if I am not) are Joyce Ward-Reynolds, her son (who she offered up as a token), and G David Nordley.

-A friend of mine walks in wearing a neurodiversity shirt. Joyce-Ward Reynolds starts squirming & looking very uncomfortable and apologizes for using person first language. A note here: this is kind of like totalling someone's car & apologizing for scratching the paint.

-When asked why the panel was cancelled, Ms. Ward-Reynolds said it was “because there were some in the autistic community who were concerned about the panel not having any autistic people on it and when I offered to bring my son they said that wasn't good enough.”

-When my friend's NT friend went to registration to complain that the schedule still said “Autism Spectrum”, registration said it was a mistake. Not “Oh, they shouldn't be there”, but “it's a mistake, now I'mma go back to picking my fingernails”.

-Halfway through the hour, some guy (friend did not see who) opened the door, looked in, and said “Oh right, this room does not exist.” Ms. Ward-Reynolds laughed and said “Yeah, this panel never happened.”

-Therefore, official bullshit is that the panel was cancelled & this woman was using a vacant room to have an informal discussion, becoming the first person in the history of ever to use space rented by a con to do something she was explicitly told not to do by the con without the con noticing.

Now, I have been involved with organizing con like things before. And I am telling you one thing, nothing happens that con staff doesn't know about. And I am telling you another thing: if there is something that got cancelled because of controversy, con staff is especially watching the participants in that-if they care, of course.

If your goal is to do whatever you were going to do anyway, you happen to not notice that someone is in the space you paid for, doing what you said you wouldn't do. If your goal is to actually respect the people who raised the issue, you make DAMN sure that the cancelled event stays cancelled.

The dishonesty shown from Orycon is really disgusting. We made overtures, we made efforts, and contrary to what people who are used to having their asses kissed believe, we were all polite. Every one of us. Orycon didn't dislike our “tone”-there was nothing there to object to. They disliked being called on their oppressive bullshit.

Orycon told Dora that they learned, that they appreciated being told where they went wrong, that they wanted to make it right. Taking advantage of people wanting to work with you is not making it right. It will get back to us. We see your bullshit and raise you a “you did bad things and should feel bad”, Orycon. It is bad enough to go right ahead and do exactly what you are going to do anyway, but to lie about it? No. That multiplies the offensiveness exponentially-it WILL get back to us, and we WILL be pissed off.

Orycon staff & panelists have been disrespectful, dismissive, & dowright ableist from beginning to end. It's good to know that a couple of neurotypicals feel that their wish to share what they learned on Teh Googles is more important than what actually autistic people think about it, and it's fantastic to know that Orycon gives no shits.

The people who had the power to stop this did not.

So, let's recap the steps Orycon took in fucking up spectacularly (sorry, I'm sorry moderating my language and tone for y'all, it clearly does nothing good):

First, they scheduled this panel in the first place, clearly with little to no research on the subject in the first place.

Secondly, they condesplained at me when I inquired, and indicated that it was totes cool because you don't have to be gay to be for gay rights (they had no answer as to whether or not a panel of straight people talking about the apparent increase in homosexuality would be even a little acceptable-spoiler alert, y'all, it'd be fucking terrible don't do that).

Thirdly, when they met with another Autistic activist they told her they were completely ignorant & would be putting up an apology & cancelling the panel. That's not actually the bad part. The bad part is that they, here, were lying.

Fourthly, the apology they put up is a sack of crap. It is not an apology. They were told that the first thing they needed to do in their apology was acknowledge that they fucked up. If they have done this, I have yet to see it, but it sure as shit isn't in their nonpology-which is nothing but excusing themselves & pleading ignorance as though that's a get out of jail free card.

Fifthly, they still held the panel. If people are joking about the room not existing, it is damn well staff sanctioned, even if not officially. When Orycon allowed it to happen-and they knew, not only that, but my friend's NT friend's inquiry should have been a pretty big hint to check on it if they were serious about cancelling it-they spat in all of our faces. This is basic stuff here, guys.

If Orycon is serious about wanting to work with autistics, they're going to need to do a hell of a lot better than this. Apparently the chair is telling other people they're oh so sorry, that they feel like a failure of a human being, that they didn't know, that they didn't mean for this to happen, but I don't believe them.

If they were actually sorry but ignorant, they'd be doing some serious naming & shaming, because this isn't acceptable behavior, no matter how oh-so-important the NT panelists fancy themselves. IF they were actually sorry but ignorant, there should be a much longer, much better apology up on the website. If they are actually sorry at all, they owe an awful lot of people personal apologies in addition to owing the Autistic community some pretty significant groveling.
Joyce Ward-Reynolds, I don't know what makes you think you are above honoring promises made by a con that is paying you, but nothing does. You directly contributed to a world that devalues your son-not for being a furry, but for being autistic. Good job. Are you proud of yourself? I know, all that googling and maybe even reading a book was oh so hard, and you are oh so important, you couldn't possibly listen to someone who wasn't you, because you are an expert.

And no, throwing your son on the panel wasn't good enough, because this isn't his thing. He's a member of the furry fandom, good for him. He is not an autistic activist. This is not an area that he wants to talk about. Offering him up as a token was disrespectful to every autistic person who actually had things to say on the subject-and many of us have well researched opinions on the subject, by which I mean “we read scientific papers and we made comments on the DSMV criteria”. It was disrespectful to him as well. You may have him convinced that I'm a meaniepants, but at least I have enough respect for him to know that using him as a get-out-of-trouble shield is disgusting & dehumanizing. So I'll take being a meaniepants every time.

G David Nordley, what makes YOU so damn important that you don't have to honor the people you are talking about or the convention's promise? Seriously, I want to know.

This is the panel that is oh so autism sophisticated (their words) that they don't see it necessary to talk to autistic people. These are the folks who are so hell-bent on having their say they will put their reputation and that of Orycon on the line, damn what the people they're talking about have to say about it. That's how important they are (and people say autistics are self centered!). I'm reminded of a line from one of the parents in the ableist emails-something about how their son would be a shitty panelist unless you wanted to hear him talk about what he wants to talk about. Who went and did exactly that-talked about whatever they wanted to talk about without regards for other people? Oh it was these non autistic panelist. 'Scuse me, my irony meter exploded.

I'm waiting to see how you'll unfuck this up, Orycon. I know that this year's chair is telling other people that they feel like a failure of a human being, but is failing spectacularly to act towards being less of a failure-generally stopping failing is a good way to get past that feeling. I also know they're saying that nothing could be worse than what's going around on Tumblr (challenge accepted, btw). Things do get back to me.

Orycon has a lot of fixing to do before I will consider giving them my money, I will not be attending any cons where either Ms Ward-Reynolds or Mr Nordley are speaking, and I have a pretty steady crew of friends who are right on board this plan with me.

If it was your plan to deceive us all along, it is high time you put on your big kid undies and admitted it. If it really was panelists casting Forget on you & going rogue, convince me.

Friday, November 2, 2012

Orycon's "apology" sucks.

A fauxpology!

This is not an apology. This is trying to get out of trouble with no actual acknowledgement that you fucked up. There was no acknowledgement, publicly or privately, of the egregiousness of their behavior (documented here & on my tumblr).

It isn't our fault you didn't do your research, Orycon. We shouldn't have had to find you & explain "our voice" that you were so intent on excluding.

You are not the wounded parties here, & this isn't even a real apology. You rewrote the manual on fucking up. That means you should rewrite the manual on apology--and you didn't. It's yet another not really apology.

I remain unconvinced and unimpressed.

Wednesday, October 31, 2012

Autistics Speaking Day: This is why we need it.

The past couple days I have been talking about the Orycon having an autism panel utterly devoid of Autistics panel situation. And I will likely be talking about it the next couple days as well.

This situation is proof that we need Autistics Speaking Day-that our work is not yet done.

It should be a given that when people talk about us, they should instead stand beside us and talk with us. It should not be a novel idea that Autistic people have things to say on autism. The idea of Autistic advocates, or Autistic adults, or Autistic people who are not directly related to the neurotypical who decided that they're an autism expert, that shouldn't be a novel idea.

They should never have planned a panel without Autistic representation. If for some reason they had made the oversight, they should have been apologetic and done their best to fix it.

They would not have doubled down, derailed, and tried to tell me why non autistic parents of autistic children are better representatives of autism, the Autistic experience, than actual Autistic people are.

That is the sort of behavior that, in a world that doesn't need Autistics Speaking Day, would be socially disadvantageous in the extreme.

Maybe one day we won't need Autistics Speaking Day.

That'll be the day that not a single presentation on autism is given without an Autistic point of view strongly represented.

That'll be the day that not a single book or article on autism gets past editors without notable Autistic input.

That'll be the day that everyone understands that knowing an Autistic person doesn't mean you know what it is to be an Autistic person.

That'll be the day that everyone-and I do mean everyone-knows that not all autistic people are exactly alike.

It'll be the day that general society knows that Autistics grow up-the day that not every piece of media is about autistic children.

It'll be the day when we are finally acknowledged on the experts of our own reality, as the primary stakeholders in autism discourse, and as the people who have the ultimate perspective on the Autistic experience.

We won't need Autistics Speaking Day when our voices are heard every day.

Orycon just showed me how far we have to go.

More Orycon-Pointing out some wrong

I am going to be stuck on the Orycon thing for quite some time. Why? Because they screwed up, and then they went down every path except “we screwed up. How do we fix it?”.

So, Orycon, this is the ways you stepped in it. Not all of them. Just some.

First, the initial screw-up. You planned a panel about autism without autistic people on it. Full stop, this is a problem. You don't do that. I don't care what about autism you are talking about, there is an autistic person or a dozen autistic people who are qualified to speak on it. We're just cool like that.

The secondary screw-up: I asked if this was, indeed, a panel about us without us, politely (since allistics care so much about that), and if so why? Then when I asked to follow up if the answer was indeed “nope just parents” (it was) you said it wasn't and got pissy at me for clarifying. It isn't an assumption when 5 of you have told me you're parents, not autistics. It was a legitimate point to clarify.

Tertiary-Nthary screw-ups: Now we get to start getting into some justifications.

All of the correspondence is linked to from my last post, for reference: Orycon doesn't want autistic money

I am not going through each email line by line at this point because I do not have the time or the spoons, so this is mostly going to be the real stand-outs.

First, we're going to start with “not answering the question I asked”. I asked if there were any Autistics on the panel. This is a yes or no question. The answer is yes, or it is no. When I get a flurry of emails saying that “I'm a parent” then the answer is not “yes”. The answer is “no”. This is not me making an assumption. This is me drawing a conclusion from the information I have-a correct conclusion at that.

As a correllary to the first, Orycon informed me that they don't ask presenters that question. And they had the gall to say it's ok because straight people can be for gay rights.

Guys, don't do that.


If you think that an analagous situation (a panel about the incidence of homosexuality with a bunch of straight parents of gay offspring) would be acceptable, go all the way home. It would not be. It would be unacceptable. Don't. If you are not a member of a marginalized group, even if your identical twin sibling you grew up with and shared a room with and now share an apartment with is, you may not speak for that group. You are not an honorary member of that group. End of discussion.

Orycon tried to assure me that they're oh so autism sophisticated, and that brings me to point the second:

If you are actually autism sophisticated you know a few things. One is that your autistic child is not the only autistic person on earth, and that autistic people are not a monolith. You also know that while some autistic people do not like standing in front of crowds, others are ok with it or even like it. True autism sophisticates know where to find autistic people (you know, the ones that aren't their children or their student). The “but my autistic 6 year old couldn't do this” or “my autistic nephew wouldn't like to”, it does not fly. Not if you're presenting yourself as experts.

Telling neurotypical people about autistic people may fly with them because they don't know anything either, but it does not fly with me. That thing you did where you told me all about autistic people? That's splainin'. I know about autistic people. I am an autistic person. I am friends with a whole lot of autistic people. I am not-so-friendly with some more autistic people. I do not need you to 'splain to me about autistic people-especially not with stereotypes and gross generalizations based on the one or two autistic people you know. Don't do that. It's a logical fallacy and it's condescending as all get out.

Which takes me to another derail that went on. “You don't go to a sci fi convention for a panel about autism”. No shit I don't, but if there is a panel about autism, it had best meet standards for quality. No, I do not go to a sci fi con and expect to meet autism experts—but if someone is presenting themselves as an expert they best bring it.

Orycon, “I've read a lot” does not make you an expert. Again, having an autistic child does not mean you understand the autistic experience—nor does University Of Google make one an expert on the rate of autism in a population over time. There is no reason that the conjecture of parents is any more valid than the conjecture of autistic people, & that is what we're talking here. It is conjecture. You don't know, though you have your thoughts. I don't know for sure either, but I have mine.

And. Orycon, if you were truly “autism sophisticated” you would know that being a geek does not mean you at all grok what it is to be autistic. If you think they're the same thing, or too similar for the difference to matter in such a discussion, you have a severe case of Dunning-Kruger effect goin' on.

“Are all autism researchers autistic?” was a delightful red herring, Orycon, given that none of these folks is an autism researcher. Just sayin'. You don't get one standard for parents and another for real autistics.

The email from the chair was 3 kinds of bingo all on its own, starting with what about the parents?, proceeding through “MMR!!!!”, moving on to more about the parents, and sprinkled with all sorts of derailing tactics. Let's talk about those.

Orycon, you don't have to like my tone. But you know what? I asked over 2 dozen people. My tone was fine. I was polite. I was nice. I was patient in the face of a lot of patent bull. There are a lot of smartass things I wanted to say and did not because everyone has lied to me and told me that if I am nice, people will do what is right.

People are full of it.

My tone was fine. You not liking that I was right, Orycon, is your problem, not mine. “I don't like your tone” is a lazy rhetorical strategy, and that's where you chose to go-”what about the parents” and “don't take that tone with me young lady”. Tone is not a valid argument when you're talking down a power gradient, folks. Tone is not a valid way to excuse your own errors. And you have confirmed for me what I always expected: that people say they don't like your tone when what they really mean is they don't like being wrong.

The projection was nice as well. Orycon representatives, I was not defensive at all. Quite the contrary. I had nothing to be defensive about: for one, I'm not wrong, for two, I approached you with questions, thus automatically I was not the one having to defend anything. You were defensive-both in the 'defending my position' way and in the 'defending my position not with facts but by taking it personally way'. That is what defensive means. Since you jumped right to getting mad at me for daring to challenge you, I had no opportunity to be defensive in either meaning.

See how that works?

Finally, in pure “you have got to be kidding” is the “you should have told us in person”.

Back to being 'autism sophisticated': if you know diddly squat about autistic adults, you know that we are, on the whole, not exactly rich. Most of us live below the poverty line. This is not news.

I emailed you to see if I wanted to spend some of my very limited leisure cash on your con. I am not spending my very limited leisure cash to jump through yet another hoop, to be told that I am being correct in a way that hurts your sensibilities yet again. I don't have that kind of time, cash, or spoon reserves.

You got your friendly suggestion. It was via email. You chose to respond with anger, defensiveness, derailing, and what we in social justice call splainin': you, able people, told me, autistic person, all about autism as though I am not aware.

I gave you a lot of chances to un-screw-up. You could have answered the original question. You could have answered the original question & then asked if I had any suggestions for how to fix it. You could have taken a different route anywhere along the way.

You chose to 'splain, condescend, derail, dogpile, and demand my money.

And that is the quick rundown of the egregious issues.

Tuesday, October 30, 2012

Orycon Doesn't Want Autistic Money. Also, I won ALL THE BINGOS.

You know, I was really hoping this isn't what this post was going to be. I was hoping it would be "so I was pleasantly surprised". It isn't. This morning someone texted me to tell me that Orycon (a local sci fi & fantasy convention) is having a panel about autism & whether there's an increase or not. Ok, that's a weird thing to have at a scifi con, but whatever.

The panelists:
-Janet Freeman
 -Kamila Miller
-G David Nordley
-Joyce Reynolds-Ward
-Karen Black

 I have never heard of any of these people. When we're talking autism, that's actually a very not-good sign. I know all the big names, I know all the local people, I know a fairly large proportion of the not-so-big names. This is what I emailed them. I want you to note how nice I was:
Good morning, I hear with trepedation that y'all have a panel on autism. I hear with more trepedation that I do not know a single one of these people (I know a lot of Autistic people). Are any of the panelists Autistic? If not, why?
(Full Name Redacted)
Thinking Person's Guide to Autism Associate Editor ( Radical Neurodivergence Speaking Sole Proprieter (
The short answer to my question is "no". I still don't know why, though it seems to be "because fuck you that's why" or "because parents are honorary autistics right?" or "because our one Aspie board member hates public speaking & we couldn't be assed to find an Autistic person who doesn't mind public speaking". Their stated reason was "we can't ask potential panelists if they're autistic!" Except, um, yes you can. If you're talking about a disability, it is absolutely appropriate to ask you if you have that disability. They gave the example of "someone can be straight and be for gay rights"-which is true. But you can't have a whole panel of straight people talking about queer issues! No! Nor can you have a whole panel of white people talking about PoC issues, or a whole panel of men talking about women's issues, et cetera!

 All of these emails came in & were sent out again while I was in class. Please have your Bingo cards ready.

 I would like you to note, again, that my initial question was "Are there autistic people on this panel?" and that this query has 2 answers: yes and no.

 Response the First (Summary: Panelist confirms she isn't autistic but her kids are).

Response email the second:(summary: more parents)

Response email the third(summary: yet another parent)

This one is my favorite for the sanctimony and arrogance with one's own "autism savvy": Response the fourth

I share my perception of the answer (and was nice, ish): My First Response

Dudeguy didn't like my response, also alludes to an email that he never sent me: What that Rickguy said

The email he was alluding to. Which is still a steaming pile, since asking people talking about autism if they're Autistic is actually totally legit: The email alluded to

What I had to say to that: But...what

The chair weighs in, also has no idea what defensive means, and makes a laughable comparison to gay rights: What does defensive mean?

And my response to them: Nice try but no

And some splainin: We're geeks so we totally grok autism

My response to that: Um. No. again.

Allistic person tells me ALL ABOUT AUTISM YOU GUYS: Splainsplainsplain

And then the splainin' privileged tears bingo all in one email: ALL OF THEM

Kind of a let down after the last one, but last panelist confirms he also isn't autistic: But stepdad is totes the same amirite?

Sooo Orycon doesn't even want my money badly enough to give a simple yes or no answer or to do anything about it but to tone police me & give me BS reasons that people who are not like me can talk about people like me without any oversight.

I am disappointed as fuck in Orycon, but I guess I'm glad that they made it very clear that they do not see me as the kind of person worth talking at their event.


Too little too late in the trying to not suck (summary: maybe my autistic kid will talk): Nice sentiment, I guess, but you shouldn't have to be shamed into it.

And some more splainin, with a side of "you should come and be niiiiiiiiiiiiiiiiice to us": Condesplainin'

Look, Orycon, you don't get it. I am not giving you money. Because of this. You got your 'friendly suggestion' in email-like many Autistics, I don't have the money to drop on a con where this sort of oversight was made. I am a fan of stuff, but not enough to bargain my commitment to nothing about us without us. 

Tuesday, October 23, 2012

New blog feature: This Week In Apparently Impossible Standards

Hello and welcome to my new feature, This Week In Apparently Impossible Standards. This feature is inspired by all those people who consider themselves good people, or even allies, and their astonishing ability to hit new and exciting lows. Apparently my standards for "not a disappointment" are exceedingly high, so here we are.

Although this is called "this week", not all featured stories will have occurred the week of the post. Some may also be amalgams of several situations if the method of sucking is the same.

Inaugural post:
As people who have been here a while know, I enjoy swing dancing-but Portland Lindy Society essentially paid someone to assault me in 2010, & Mindy Hazeltine of Stumptown Dance fancies herself above the ADA and prefers lawsuits to  banning flash photography. So, dancing not happening so much with the deadly weapons. 

Today at school someone I know from those dances asked why he hadn't seen me out lately-and I told him.

Here's a protip, pal: If your reaction to exclusionary bigotry is "that's too bad", you fail to meet decent human being standards. The correct responses include "That's terrible, why am I giving my money to those asshats?", stopping your support of said asshats, & passing on relevant resources if you know of any and have that capability. 

Decent people don't knowingly support people and businesses who chose to be bigots. Decent people don't knowingly support people who choose to hurt people.

My standards: too high.

Friday, October 5, 2012

"forgiving" people who aren't sorry. Not gunna happen.

This has been the theme of this past week or so, and an intermittent theme of my entire life thus far: some person or group does something shitty to me, I am angry about it, that does not change because the shitty people don't care to make amends, some random, usually privileged asshat comes by on their high horse and tells me to forgive the original shitty person/group/whatever.

This sanctimonious asshat, again, always has privilege I don't have on at least one axis and always tells me to forgive for my own peace of mind. That it'd make me feel better, and don't I want to be the bigger person? Let bygones be bygones, et cetera.

And you know, at first I thought these people just didn't understand what they were asking me to forgive-that they didn't know the kind of abuse I went through as a child, that they didn't know that a board member of a big supposedly good autism charity assaulted me with flash for an entire weekend, that they didn't know, didn't know, didn't know.

They ran out of benefit of the doubt, though, when they started commenting immediately after I shared the story that I need to forgive "for myself." Then I started thinking, what's it to them if I am pissed off at my dead mother or at AutCom or whoever for the rest of my days?

Do you, forgiveness pushers, see my mother in yourself? Do you see any reason it was acceptable for a board member of AutCom to follow photosensitive people around with a flash camera? Do you see any reason it's acceptable for students to lock another student in a locker? Are you relating to the villains of the story? Is that what's going on here? Do you need me to forgive them in case you are accidentally just as toxic? How does that even work?

Maybe this for your religious reasons? I still don't get it, though: I'm an Atheist, but I was raised with "you sin (fuck up), you go to confession (apologize), you do your penance (make amends), then you go and sin no more (do your best to not fuck up again)." Only after that are you absolved (forgiven). That model works pretty well for us secular folks too. I highly recommend it.

The thing y'all are failing to understand from way up there is that you are asking me to go against every hard won survival instinct I have. You are demanding that I betray myself as deeply as possible so that you feel better. You say it's "for me". You lie. It isn't at all. It's for whatever convoluted reason you have.

Here's the thing: these people aren't sorry. Not one of the people or groups I've been sustainedly angry at has made even a perfunctory, much less sincere, apology. If someone isn't sorry, I sure as shit am not forgiving them. No. You work for that. If you done fucked up, and I assure you, these groups or people have all done fucked up in concrete ways and know what they are, you apologize and you try to fix it if you want forgiveness. That's how it works.

If you forgive someone who isn't sorry, then you are giving them license to hurt you again. It took me a long painful time to learn that "good people" aren't always good people and that people who others say are looking out for my best interests often are against my best interests. Every single iota of self preservation and self respect I have says "if there is even the slightest chance they will do it again or will escalate, never forgive." Forgiving would be deep self betrayal.

Not forgiving people or organizations who aren't sorry, no matter how great y'all sanctimonious privileged equestrians think they are, is self care for me. And it's not like it's a secret-they know where to find me if they're actually sorry and actually want to be forgiven. But they don't. Take it up with them if you think forgiveness is so important.

Tuesday, August 28, 2012

On role models, and who can and cannot be one.

First, the good thing: people are (finally) coming around to the idea that Autistic adults are logical and appropriate role models for Autistic children and teens. 

Now the not good thing: some organizations and individuals are applying ridiculous standards to who can and cannot be considered a role model. One group is defining acceptable Autistics as "those who have a degree and are working full time in the field they studied." People who meet those criteria are Autistics it's acceptable to look up to. A spokesperson for an organization using these criteria opined that "anyone can get a degree, but not everyone can work full time," while reiterating that to be a role model an Autistic must be doing so.

Can we see the problems with this?

First, no, not everyone can get a degree. They cost money, they cost time, and universities and colleges are not places that accommodate everyone. Yes, they are required to have a Disability Services department. However, there are some people who are not capable of earning a college or university degree with the offered accommodations-they might have cognitive challenges or learning challenges or an inability to function in the environment. Or maybe some people don't wish to-maybe the stress and the thousands of dollars of debt aren't worth it for them. We don't all have rich families.

Secondly, the criteria of "must be working full time" excludes people who are really worth emulating. Some people, for whatever reason, cannot do 40 hour weeks. Maybe, again, they don't have the stamina to power through an entire week of sensory hell. Maybe what they are qualified for is by nature not a full time gig, or perhaps they are juggling 2 jobs like so many people are lately. Some people make other life choices-some Autistics have children & choose to devote some of their time to raising them. Other Autistics choose the self employment route. And some Autistic people partially or completely rely on SSI or SSDI. Contrary to apparently popular belief, not being able to work (or work enough to support oneself) is not a moral failure. People who get assistance also have worth by virtue of being human.

By the criteria of "working full time in the field one studied to get a degree", almost no Autistic is a role model, and a large number of the next generation won't be either. We are very much an unemployed and underemployed crowd. This criteria set is extremely ableist and classist.

Not only that, but it excludes people not just from the position of mentor, but also mentee. A lot of Autistic kids, right now, they are not going to be getting a college degree, and that's ok! There are a large number of Autistic kids who are going to grow up to receive SSI payments, and that's not a moral failing on their part! There are things some people are not able to do, and that is how it is.

Don't these Autistics also deserve role models? It's so important that our youth who aren't Temple Grandin see that they can have a good, full life within their capabilities. It is extremely frustrating to be told that there's 1 or 2 'appropriate' role models, only to realize that their capabilities and circumstances are nothing like yours. A role model is someone you can look at, say "I want to be like them when I grow up," and then actually be able to do it. 

Don't do our next generation the disservice of leaving them out. Role models come in all kinds, not just traditionally economically successful varieties. Acknowledge the diversity of our stories, embrace the different kinds of success. Not everyone can work full time or have a degree, it's true, but everyone can have a life that is full and meaningful.

Friday, August 24, 2012


At Autreat I learned that my anxiety & my difficulties with doing things that need done (hereafter referred to as “adulting”) are not things that I have to just live with. Internalized ableism says I just need to try harder, & the attitude of “you're an adult & should act like one” says that too, but let's face it: I am an adult, and that does not mean “I magically have everything together without reminders,” it means “you aren't the boss of me! I can eat ice cream for dinner! I do what I want!”

In keeping with the second, realistic definition of being an adult, I set out to make my apartment and my life accessible to me. I've tried systems like google calendar, and a paper and pencil planner before that, and these just aren't things that work for me-there's too many steps, what with having to remember to put things in there and then having to check it later. If I cannot see it at all times, it does not exist. If it requires me to be able to access a pen or other extra pieces to use it at all, it will not get used because I can't always find a pen. Using what I know about what I need help doing and how my brain works, I set up a set of visual supports. See them below the cut.

Thursday, August 9, 2012

There is blood on your hands.

A young man named Paul Corby, aged 23, was just denied a spot on a heart transplant list petition here. It is probably your fault.

If you donate to Autism Speaks, you are helping them kill him. If you support "awareness," the denial is in part your fault. If you are not actively combating the family centered tragedy & despair model of autism that Autism Speaks, Autism Society of America, & the other Big Autism organizations promote, you contributed to this violation of human rights.

I'm sure you are very offended right now. You're hurt & don't understand how I could think that awareness kills. You are genuinely shocked, apparently, that someone was denied life saving medical care because he is Autistic. I'm not. I can't believe you're surprised, honestly. So let's break it down.

As I have said before, awareness creates a sense of urgency and fear. People are plenty aware of autism. They know that we're 1 in 88-and they have been taught to associate that with things like lightning strikes and car accidents. They hear, from our so called advocates, words like national emergency, tsunami, public health crisis, epidemic. They hear our parents tell the media that we are soulless, that their real child was stolen from them, that we are damaged. The biggest organizations "for autism" fundraise with footage of our parents fantasizing about killing us, and they collect with promises to prevent and cure us. Everyone, everyone, is "aware"-this is what autism awareness is.

They are aware that when one of us is killed, the other unfortunates who are subjected to us rush to defend the murderer. They know that the people who claim to love us, those that claim to know us, those that claim to be experts in us call killing us an "act of mercy", no matter how loudly we protest. Then they move on to demand more services, to declare how expensive and how difficult we are, and yet you are surprised?

The public image that you have very likely contributed to is that autism is about our longsuffering families, about financial burden, about people who are so Other as to not even matter in our own stories, to not even get mentioned in stories of our own murders-when our murders are acknowledged by Big Autism at all. Usually ASA, Autism $peaks and the rest are silent on the matter.

So why are you surprised? This is the natural result of the narrative of burden and tragedy. By convincing them through your fundraisers and charities that we are so difficult that fantasizing about killing us is natural, you have convinced them that denying life saving treatment is the thing to do. That doctor may think he is doing the family a favor because of you. This is the awareness you pushed for in action. Thanks to autism awareness, the general public is convinced we do not have lives worth saving.

Blood is on your hands if you support this narrative. If you have donated to Autism Speaks, ASA, or any other rhetoric of tragedy institution, some of the blame right here is yours. If you actually are one of these organizations, you are using your funds and your publicity machine to feed this poisonous attitude to even more people, and that makes you a mass murderer. I hope you're proud of your "awareness".

Monday, July 23, 2012

Open Letter to the Media in the Wake of the Aurora Shootings

Dear Media,

I am an Autistic adult. In the wake of the tragic shootings in Aurora, Colorado, my community was sitting not only in the sadness that all such tragedies bring, but also in fear and anticipation that once again, we would be your scapegoat. Once again, you would start declaring that we and the killer had the same neurology before the bodies were even cold, before the initial tears had dried.

And again, you did not disappoint. Again, you went to declare the killer mentally ill or Autistic before you even possibly had a chance to talk to anyone qualified to make those calls. Again, you cast yet another layer of suspicion on my community. Again, you made me someone to be feared.

Here's the deal, neurotypical folks of the media: You are far more dangerous to us than we are to you. The mentally ill and the developmentally disabled are far more likely to be your victims than you are to be ours.

Some stats for you, taken from this UK source:

  • 10% of convicted murderers had mental health problems.
  • 25% of the population has mental health problems.
  • 95% of homicides are committed by people without mental illnsses.
  • People with psychosis are 14 times more likely to be attacked than to be the attackers.
  • 25% of patients with mental illness have been the victim of violent crimes.
Clearly, people with mental illness have more reason to fear those without mental illness. Now, let's look at some developmental disability statistics, shall we?

From The MA government:

  • More than 90% of developmentally disabled people will be sexually abused.
  • 54% will be sexually abused 10 times or more.
  • Developmentally disabled adults have a 4-10 times greater likelyhood of being physically assaulted. 
  • 3% of these crimes will be reported.
There are no easily available statistics on developmentally disabled perpetators of crimes, in spite of the media's efforts to paint any and every violent criminal who gets national attention as Autistic.

Let's make this a bit more stark for you. Here is an incomplete list of disabled people killed. Most of the victims on this list are Autistic or otherwise developmentally disabled.

Peter Eitzen, 16, stabbed by his mother, July 2009.

Jeremy Bostick, 11, gassed by his father. September 2009.

Tony Khor, 15, strangled by his mother, October 2009.

Betty Anne Gagnon, 48, tortured to death by her sister and brother-in-law, November 2009.

Walter Knox Hildebrand Jr., 20 years old, died of a seizure induced by his brother’s physical
abuse. November 2009.

Laura Cummings, 23, tortured to death by her mother and brother, January 2010.

Ajit Singh, 12, forced to drink bleach by his mother. February 2010.

Gerren Isgrigg, 6 years old, died of exposure after his grandmother abandoned him in a remote
area. April 2010.

Leosha Barnett, 17, starved to death by her mother and sister, May 2010.

Glen Freaney, 11, strangled by his mother. May 2010.

Payton Ettinger, 4, starved by his mother, May 2010.

Christopher Melton, 18, gassed by his mother, June 2010.

Rylan Rochester, 6 months old, suffocated by his mother because she believed him to be autistic.
June 2010.

Kenneth Holmes, 12, shot by his mother, July 2010.

Zain Akhter, 5, and Faryaal Akhter, 2. Strangled by their mother, July 2010.

Rohit Singh, 7, beaten to death by his father, September 2010.

Zahra Baker, 10, murdered and dismembered by her stepmother and perhaps her father. October

Chase Ogden, 13, shot by his mother along with his sister Olivia. October 2010.

Kyle Snyder, 9, shot by grandmother. October 2010.

Karandeep Arora, 18, suffocated by his parents, October 2010.

Julie Cirella, 8, poisoned by her mother, July 2011.

Noe Medina Jr., 7 months, thrown 4 stories by his mother, August 2011.

Benjamin Barnhard, 13, shot by his mother. August 2011

Jori Lirette, 7, decapitated by his father, August 2011.

George Hodgins, 22, shot by his mother. March 2012.

There have been murders since the compilation of this list. There have probably been a number  that we will never know about. Nearly without fail the perpetrator is treated as the victim of the person they killed, as a hero for killing us. 

Yet you persist in putting forward the cultural narrative that we are the dangerous ones, both with your speculation that all killers are on our neurological team and with your treatment of our killers.

It is journalistic irresponsibility to do this, and it affects real people. We are the ones who have to live with the stigma you perpetuate. I am at risk of being killed because you tell the population that I am dangerous-despite that I am one of the 97% of developmentally disabled people who has been the victim of non mentally ill, non disabled violent perpetrators. You make the world more dangerous for me every time you do this. You make it more dangerous for my entire community.

We are not your scapegoat, and the trope of the dangerous neurodivergent is not only irresponsible, it is sloppy. Do some real research instead of lazily reaching into the bag of tropes every time someone does something terrible. Statistically speaking, we didn't do it, and spreading the idea that we did has very real consequences that can mean life and death for us. 

Terrifiedly yours,


Tuesday, July 17, 2012

The Things You Want People To Do To Your Kids

Dedicated to the parents I've come across this week. It's supposed to make you uncomfortable.

Ok, y'all. Let me say this for you, again:

The way you treat Autistic adults, you are condoning people to treat your Autistic kids just like that later.

So, apparently things you want people to do to your children in 10 years or so are as follows:

You want them to hear again and again that only parent perspectives matter.
-That what they have to say doesn't matter because they're too high functioning.
-Or too low functioning.
-Or too "emotional" about issues that effect their every day lives.

You want them to hear that they are a burden
-A disease
-A tsunami
-An emergency
-A threat
-And you want them to sit there & take it, if not flat out agree.

You want them to hear that they are the worst thing that can happen to a parent
-Life destroying
-Worse than cancer, AIDS, car accidents, lightning strikes
-cause of combat stress

You want them to hear that they have no empathy so they don't matter
-Other not-exactly-accurate stereotypes too
-Because reading your mind is the only meaningful empathy
-Because what is going on in our minds does not matter
-But not agreeing with you is more evidence that we are monsters
-And we must agree that we are monsters
-Otherwise it's more evidence that we have no empathy.

You want people to tell them, time and again that hurting people like them is understandable
-You want people to defend stories of extreme abuse to them
-Even abuse of people they care about
-Or abuse they went through
-Because, you see, being around them is so difficult it drives you to it.

You want them to hear how killing other Autistics is understandable
-"Don't judge" you say
-"Walk in the parents' shoes you say
-All while not even acknowledging that Autistics have shoes
-Much less feelings
-Or ability to see exactly how little our lives are valued.

You want people to treat them as less than human.
-Get a grip, you say, when we have opinions on our lives.
-You're just paranoid.
-You're crazy.
-You don't know what you're talking about.
-Gaslight, gaslight, gaslight.
-But they're Autistic, so they can't interpret their own feelings, you say.

You are giving the world permission, nay, encouragement to physically and psychologically abuse your children. Every time you do that to me, you do it to your child. If you love your child, why are you perpetuating a world in which they will be abused every day just for existing?

Is your sense of self righteous superiority and martyrdom really more important than your child's future?

Monday, June 18, 2012

By Request: Neurodivergent K's Kitchen Adventures!

People think I'm exaggerating when I say I cannot cook. But really, I cannot. Between not noticing I'm hungry until I can barely stand up & difficulty sequencing tasks & a penchant for weird things happening around me, the kitchen is not a safe place for me to try to do shit. I can microwave things. And that's about the extent of what I can do consistently.

For your laughing at me pleasure, here is a selection of stories of my kitchen mishaps.

Anecdote 1:
When I was about 16, I was making macaroni and cheese, because fuck yeah macaroni and cheese. I was taking the pot across the kitchen to strain the pasta & had a partial complex seizure. Somehow during this I managed to spill the water alll the way up my arm, giving myself 2nd degree burns. There was nothing going on to trigger the seizure, I didn't feel it coming, it just couldn't wait 10 more seconds. I still have a bit of discoloration on my forearm.

Anecdote 2:
Many years later I lived at a Y, which had a fairly decent kitchen, and no microwave. We (my friends from the shelter and I) were going to watch a movie in the common area, so we chose to make some popcorn.

Um. So. It's absolutely possible to burn half of the popcorn while the other half doesn't pop at all. Putting butter in? That does not help. I would say it hurts. Setting it on fire may have been helpful in terms of cleaning out that damn pot.

Speaking of cooking at the Y. We tried to make s'mores over the stove (yeah, I'm a rebel...). My marshmallows would not catch fire. The one thing I wanted nice and toasty wouldn't burn. Go figure, right?

Anecdote 3:
My first apartment! The Pit of Despair! It was not a nice apartment, but it was mine! I had a toaster oven, a stove, an oven, and it was kind of a terrifying place. But it's hard to screw up too badly with a toaster oven, right?

Things to add to the list of things I have set on fire: Frozen chicken legs. While otherwise still frozen. It was utterly inedible, because the parts that weren't charred were frozen. This is when I started mostly getting prepackaged food, because seriously? This is getting to be a bit much.

Adventure 4:
Did you know plastic bowls, even those marked microwave safe, they melt.

It wasn't even in there that long-I like to put frozen potatoes, cheese, butter (high fat needs ftw) and bacon in a bowl & let it all melt together.

I don't like it so much when the bowl joins in the melting fun.

And 5:
Other things that can catch fire and be raw at the same time: PANCAKES. Usually I can make a decent, if slightly wrinkly, pancake, but apparently not always.

I posted this one on facebook. Cookies, like pancakes, can be on fire and undercooked at the same time. They were supposed to be chocolate chip, but the chips all melted so they were just chocolate, & it was an extremely smokey fire. Oh. And potholders? They can and will ignite.

This is more like 7-77. I've set the teapot on fire. I've set the burner the teapot was on on fire. I've set a pot on fire. I've set a burner in no way related to the water I was trying to boil on fire, too.

and the most recent:
I am decidedly a firebender, or alt universe Katniss (the girl who set things on fire, rather than the girl who was on fire), or something.

I set a potlid on fire trying to make hardboiled eggs. Granted, the potlid was on the stove. I kind of suck at getting the dial to burner thing right. It was before I had coffee.

Had it just cracked with the heating up and cooling again thing, I'd understand.

But nooooooooo. GIANT EFFING FLAMES! And then it cracked and, while it was supposed to be shatterproof glass, it decidedly shattered, albeit all in one place. None of the shards flew more than 18 inches.



Activities of Daily Living, ladies, gents, and others: I fail them, unless making fire by boiling water is the newest ADL.

Friday, June 15, 2012

I mentioned a couple posts ago my emoting/sick/other flow chart. And I threw it all sloppylike on my computer. It's sort of this:

Thursday, June 14, 2012

That ChipIn thing-Help me with autreat

Some of you may have noticed that there is a ChipIn widget on the sidebar, asking for help sending me to Autreat.

The dealieO is this: TPGA paid my transit, I paid my registration, it was spendier than anyone anticipated, & it kind of financially hurt everyone a bit (more than a bit). But it was very much a "now or never" situation, so worst case I'm very economical about food for the next forever & sloooowly pay TPGA/myself back out of teeny widdle SSI checks/tutoring/etc. TPGA is not requiring me to pay them back, but the travel costs were expensive like woah & I'd like to be able to do so.

The lovely Amy Sequenzia, a non speaking Autistic poet & self advocate, has graciously offered (I cried, not gunna lie) to send one of her poetry books to donors of $20 or more. She offered 30 of these books. Because she is an awesome human being. And yet another example of why I love my Autistic community.

Tuesday, June 12, 2012

"But you're soooo high functioning! If you had other problems you'd want a cure too!"

I hear that all the time, and what you are saying when you say that is:

"Neurodivergent K, I have never listened to anything you have said ever. I have never met you in person, and all I know of you online is that you say things I do not like, so I made assumptions about you based on your ability to use the Oxford comma."

Cuz here's the thing: you don't know what I am like in person. Even if you could define functioning labels-protip: you can't-chances are pretty good that I'm not what you are assuming. You don't get to say what my experiences are.

 This past weekend I was at an adults mentoring teens event. After, I mentioned that I had not disclosed that I am Autistic to anyone at work. For some reason this is the most hilarious thing any of them has ever heard--something about my closet having glass doors. I am noticeably different. I'm awesome, but I am a weird weird kid with obvious sensory processing issues & obvious language processing problems. So there's some evidence that your "all you neurodiversity types are indistinguishable". I'm not.

 Nor am I without the other lovely autistic addons. You know, like sensory processing problems. Like face blindness. Like very high pain threshold and the accompanying difficulty localizing pain. Like alexithymia. I have a flowchart on my wall to help determine if I am having an emotion (and if so, what) or if I am in pain or if I am sick. But I am indistinguishable from peers, because I can write well.

And, you know, when you go on about other health cooties meaning autism needs to be cured, first: you're wrong. Those other cooties aren't autism. Second: it's mightily presumptuous for you to assume that because I do not want to be cured of autism, I've never experienced a health issue in my life. Cuz I have. And I do.

 I've got recalcitrant (ok, the doctors call it "medically intractable") epilepsy. I've got adrenal insufficiency of unknown eitiology. And I have other cooties that are none of your damn business, but I assure you, I have had health problems, and I have had to fight to get them acknowledged as NOT just autism, because of the BS people spread about autism being some part of some sort of systemic thing. I assure you, endometriosis is not an autism symptom, but thanks very much for the delay in proper treatment since they decided that abdominal pain means that, since I am autistic, I just need to poop more. It was a great 10 month delay.

 If you disagree with me, that's fine. But actually disagree with what I am saying, not with this false idea you've built in your head of who I am, who I must be to not agree with you. I am not who you want me to be. I am far more like the Autistic who would "obviously want a cure" than I am like the sort-of-quirky shiny Aspie you've built in your head. Most of us are.

(edited bc my formatting got lost. I forgot where I had had paragraph breaks so this is probably not how it started)

Wednesday, May 30, 2012

Guest Post: Why We Fear for Your Kids

This is another guest post from the always insightful & delightful Gen Eric:
Okay, so those of you who have read my previous guest post know my “don't hate parents for being parents” credentials. I want you to keep that in mind for the rest of this post, because I'm going to say things some of you don't want to hear. And it will be all too tempting for some of you to play the “just hate parents” card.

No, I don't hate you for being parents. I don't believe that having an Autistic child makes someone automatically abusive, but there's sure one hell of a correlation. Far too many parents of Autistics develop a damn strong sense of entitlement. They feel robbed of the child they were entitled to, and so they feel entitled to wallow in self pity, treat their child like a burden (and encourage the child to feel like one), talk about their child in front of them like one would a piece of furniture, abuse them emotionally and/or abuse them physically and/or abuse them in other ways. For all that, they then feel entitled to a crown of sainthood. For some parents out there, here is why we fear for your kids.

Whenever an Autistic person is murdered by a parent or caregiver (and seriously is it possible to keep count? I doubt it!) the “autism parent” community comes together to express their sympathy and sorrow, for the murderer. You can see it in the comments section of any associated news story. You can see it in the official comments of any “respectable” (meaning no Autistics allowed) autism organization. A lack of services is blamed. The killer is regarded as a good person pushed over the edge. Some of you don't shy away from saying that “every parent of a child with autism feels that way sometimes.” Someone really needs to call social services on every “autism parent” who's ever said that. We need to start a registry on people like you, so your neighbors can be warned of what kind of scum they live near.

Yes the lack of services is atrocious, and the services typically fund the wrong things (behavioral interventions rather than communication and self advocacy), but having someone else harm us to draw attention to our needs is no better than needing to harm ourselves to draw attention to our needs.

Many of you openly talk about how you wish you had a “normal,” acceptable child. What you're really saying, as Jim Sinclair told you nearly 20 years ago, is that you wish the child you have didn't exist; you wish a “stranger you could love,” would “move in” behind your child's eyes. You also don't feel the least bit guilty about expressing this wish in front of your child, letting them know just how unwanted they are (and don't even try to mince words about this matter). I started feeling guilty for existing before I was eight years old; at thirty, maybe someday it'll go away. Have you checked our suicide rate lately? In case you were curious, it's through the roof, and this is where it begins.

Some of you go even further than that. You all know what this blog owner has experienced at the hands of “loving and devoted” parents; and no, it's far from uncommon for a parent to treat their Autistic child as a release valve for all their own anger and frustration. Some of you claim you'd never ever dream of harming your child, but the next moment you're running for the acid injections, chemical-castration drugs, and bleach enemas (yes all of these are used, yes they kill, and yes there are plenty more). Others swear they don't go in for that pseudoscience, and that they only use “scientifically proven” and “effective” treatments, like behaviorism. Here's a news flash for you: sitting a child down for forty hours a week and telling them to “touch nose” or “pick up red crayon” is abusive. Teaching an Autistic child to suppress their autism permanently is sadistic. Teaching a child that it's wrong to refuse a hug, or a touch, when an adult wants to initiate, leaves them permanently vulnerable to anyone who chooses to take advantage.

And you get especially high and mighty when called out on your “behavioral problem.” When Autistic adults, who have PTSD issues because of what was done to us, tell you about the harm you are doing, you again make yourselves the victims, and we all know victims can do no wrong. In your “self defense,” you become again downright abusive. You gleefully trigger people who have the same disability as your children, and who have survived things similar to what you're doing, and then you blame us for having a “tone.” Still, you insist that it's all in self defense.

You excuse the murders of people who have the same disability as your children, who are murdered for their disability, which raises obvious questions about your intentions. You publicly shame your children for being born. Some of you add physical abuse to the emotional, whether for your own gratification or in some “crusade” to “save” your children. You personally abuse adults who have the same disability as your children, making sure to set an example that it's okay for others to abuse your child when/if they grow up. For all these reasons, we fear for your kids.

Sunday, May 27, 2012

How to fail your autistic child without even trying: A guide.

Autism parents, here's the deal: Every shitty thing you do to me, you are giving the next generation a pass to do to your kid. So, here are some brand new techniques, in case your current ones were getting boring.

1. YOU AREN'T LIKE MY CHILD! Yes I am. Suck it up, buttercup. I am not exactly like your child, because I am pushing 30, but chances are good I'm more like your child than you are. Deal.

2. YOU'RE JUST ANGRY! Um. Yeah. I am, actually. See, I have shitstains like you tell ing me to shut up (and more!) when I tell them that, you know, doing X thing isn't helpful, it's actually harmful and may cross the line into abuse. You'd be angry too if the majority of the people you came into contact with alternated between using you as a decoder ring & verbally abusing you when they didn't want to hear what you decoded.

2a) GET SOME THERAPY FOR YOUR ANGER PROBLEM! Fuck you, buddy. You are my anger "problem." I am still on this earth out of plain spite some day, against all of my mother's best efforts.

 3. YOU'RE JUST SELF DIAGNOSED! a) No I'm not, actually. b) That's irrelevant. Lots and lots and lots of adult autistics are self diagnosed. That doesn't make them not autistic. There are a lot of barriers to diagnosis of adults. Financial barriers. Lack-of-experts barriers-did you know lots of so called experts are laboring under the idea that all autistics were caught in childhood? Even though a lot of autistic people would not have been classified as such until 1994? Even really blazingly obvious ones? That doesn't make them not autistic. It makes them overlooked. And of course People of Color & people with other diagnoses are even less likely to be accurately diagnosed because of medical prejudice.

4. YOU ARE BATSHIT LOONY LOL. Psychobigotry on line one! Mentally ill people, contrary to your oppressive beliefs, do in fact have rational thoughts! You are not required to be neurotypical in all ways to say things that are correct! Someone arguing with you is not indicative of their mental status-maybe you are just wrong! And even if they do have a mental illness, that doesn't mean you aren't wrong.

5. MY CHILD WOULD NEVER SAY WHAT YOU'RE SAYING! Your child is eight. Think it through.

6. YOU ARE TOO HIGH FUNCTIONING TO COUNT! People who say this should have their internet access revoked. They are clearly only capable of handling interactions face to face; they don't understand that someone's writing ability is the only thing you can see on the internet. Yeah, I can write. A lot of the time, I can even push words out of my mouth in an order that makes sense. I fail adulthood pretty hardcore, though, not like it's your business. I also have sensory issues that have to be seen to be believed, again not your business.

6. YOU HAVE A JOB AND FRIENDS! YOU'RE WRONG! Heh. You've never met my friends...

 7. YOU AREN'T AUTISTIC, YOU HAVE AUTISM. KATHIE SNOW SAYS SO! Kathie Snow can kiss my ass. It's disrespectful as hell to tell me what to call myself. I don't give a whiff of a shit what you think I should call myself, because you are not me.

7a) WELL MY KID HATES TO BE CALLED AUTISTIC! Gee. I wonder where they got that one, angry mom on the internet.

 8. I KNOW ALL ABOUT AUTISM MY KID HAS IT! One of my best friends has a pilot's license. Does that mean I can fly a plane? This is among the least rational things y'all tell me, yet you do it every day.

8a) NO I DON'T HAVE TO READ ANYTHING YOU POST TO EDUCATE ME. BUT YOU NEED TO READ EVERYTHING I SAY. Yeah no. You want me to empathize with you? It's a 2 way street. You're going to tell me that parents are always saints and angels and want what is best? Then you best get your ass on explaining my mother, & explaining the hate mail I get. I'm waiting.

9. YOU NEED TO BE NICE AND LISTEN TO PARENTS AND NOT SAY THINGS THAT WAY! Did I say fuck off yet? No? If you think this is a legitimate argument, fuck off. Being nice has been proven to not work. You don't get rights by saying "please, could you consider acknowledging that I'm human and maybe treating me somewhat as such?" You get rights by demanding them.

9a) MARTIN LUTHER KING AND GANDHI WERE NICE! No they weren't. White people think they were nice because history class said so. They were every bit as demanding as I am, perhaps more so.

10. INSERT DEATH THREAT OR WISH OF DEATH HERE! *yawn* You don't scare me. You annoy me. At least be creative. And know that my local police get copies of all this shit. Before you get all abusive at me, think about someone doing that to your kid. They will. They will.

11. I'M NOT LIKE THAT! STOP SAYING YOU HATE PARENTS! Well, then show me you aren't Like That. Most people who insist they aren't, are.

11a) I'M COMING TO YOU IN PRIVATE TO TELL YOU THAT I HATE THAT THEY'RE LIKE THAT! Not helpful, no matter how well meaning you are. You need to tell them to not be Like That. They don't give 2 fucks if I think they are, but they do care what you think.

edited to add a couple that I forgot