What i faxed to House Committee Hearing on Autism

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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.

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.

Orycon are liars

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

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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.

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.

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.

No.

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.

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 (http://thinkingautismguide.blogspot.com) Radical Neurodivergence Speaking Sole Proprieter (http://timetolisten.blogspot.com

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.

**WEDNESDAY MORNING EDITS!!**

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.