Monday, November 18, 2013

What autism really is.

So Suzanne Wright from Autism$peaks sent out more of the same hatemongering that was tired before her grandson was even born, about how autism is terrible because the faaaaaaaaaaaamilies and we might eat food from the fridge or something and that's the worst thing ever.

That is not what autism is.

This is autism:

one very fair skinned female presenting person with light brown hair & a pink hoodie and a pink and purple haired fair skinned person with glasses, an orange shirt, and a white shoulder riding cat

Autism is friendship, the kind you can only have when you meet someone who is like you. Allistic people don't so much understand what that is, because they expect that most people are on their wavelength. But Autistic people know how special that is, because it is rare and it is precious. Someone who understands intuitively, who speaks your language, is worth their weight in something way more valuable than gold.

And autism is community that comes together. There's this idea that we can't do that, but that idea is wrong. Never have I ever seen another community that takes care of its own so much. We have our issues, as all communities do, but we also have fierce loyalty and ferociously fight for and care for our own. We know what it is to not have that. Again, we know how beautiful that is once we find it.

Autism is adventure. Or craving it at least. Jumping into that freezing cold water because it was there. And then jumping in again and again because it was freezing but it was a delight every single time. It may not be the normal thing to do, but it was better than normal. It was exhilarating.

Jumping into that water? I felt more alive than I think most people ever do. It was just me, the air, then the water. The sensation of my stomach rising? Stopped time until the water woke me up. It was actual perfection in an experience.

black and white photo of a dark haired fair skinned person doing a leap. their back foot is up by their head and their front knee is bent at an acute angle

Autism is focus. This leap is called a double stag. My focus was right on the sole of my foot, visually speaking. Internally speaking it was only on what I was doing. There was no thought as traditionally described. There was me, music, the mat, and movement. That's it. I can do that. I cannot meditate in the usual sense, but I can become one with movement. Everything else goes away.

So it is when I am focusing on something that I love. The way I love? It is deep. Autism is deep love. People write it off as special interest or obsession, but even if it's not something I can excel at, I can excel at loving what I love, loving what I do, loving who I love. Autism is being able to be consumed by love and interest, it is giving 100% because it is an insult to the thing one loves to give any less. Autism is going big or going home.

Autism is finding myself and losing everything else while jumping, flipping, spinning. And this is the best thing ever.

dark haired fair skinned adult female presenting person and dark haired fairer skinned boy presenting person on a couch. they are smiling and the boy is pressing his forehead and shoulder into the adult

And now we are back to autism is love and community. Autism is also sharing. Autism is knowing people because of autism. My young friend, Leo of Squidalicious fame, shared with me. He shared his iPad and his stims and his love. And he and his family are just a few of the many people I care about deeply who I would not have met if there was no such thing as autism.

No one ever said that being Autistic is easy. But we do say that it's worth it. We're okay. We love and deserve to be loved.

Thursday, November 7, 2013

The tyranny of indistinguishability: performance.

A consequence of everything being about "children with autism": no one thinks about the adults. They desire desperately to make us indistinguishable from peers (using a very interesting definition) and then as soon as we meet that goal, we're allbetternow. No one spares a thought for the adults who, years ago, were declared to have made the goal, hit the holy grail of "normal enough".

Indistinguishability isn't a moment though. It is an unending job, and it gets more and more complex as you age. Demands keep increasing: academic demands, including those that require figurative language and abstract thinking, increase. Time management demands increase. As we grow up, we are expected to take on more responsibilities at home and eventually move into our own homes. We're expected to get a job, do that job, maintain our own homes, all at once.

And maintain that visage of normal. We always say autism is developmental delay, not developmental stasis-and indistinguishability cannot be static either. The Allistic Emulator software we run on our Autistic operating system needs constant attention. Have you ever run an emulator program? Like all of them, mine is slow, it is buggy, and it takes up processor power that'd be better off being devoted to another task. And it constantly needs upgrading to perform anywhere close to spec.

When I was 6, I could play a board game with only slightly more meltdown potential than the other little kids. I could make reasonable, if messy, facsimiles of the art projects we did for every season in my first grade class. In structured activities-and so much of a 6 year old's life is structured-I could kind of pass. I was on the sloppy, reactive, and odd side of the bell curve, but I was on it.

At 30? Board games have largely given way to to unstructured conversations, where turn taking is marked not by handing over the dice but by nonverbal cues. The length of turns and what a turn includes varies moment to moment. Talking too much, not enough, oddly? Gets noticed. Not catching nuance? It shows. Echolalia? Stands out. Auditory processing problems are interpreted as not caring. The skills that make you slide by in first grade are not enough in adulthood. There's nowhere to hide.

If there is anything I learned from How To Be A Real Person In 1000 Data Sheets, it's that hiding is essential. Being noticed is the end of the world. When I gave a shit about my safety & about the people who taught me this--which was everyone in my life in my youth, as that's how these things tend to work--I was constantly upgrading my emulator. Constantly relearned more in depth performances. It made me tired, anxious, cranky, and it failed frequently. The failures were distinguishable in the worst kind of way.

Failures were marked in tears. In full on meltdowns. In self loathing and self injury. Inability to do anything--eat, sleep, move--because of exhaustion and inertia. Did I mention self loathing? Severe anxiety. Self isolation (if I do it first they can't!). Intimately detailed, ritualized recitations of all the ways I failed at being a human being. Because keeping up the act of humanity is what is required to be thought of as human. How very Lovaas.

So much energy was put into being a real person that I didn't have the cognitive capacity to do as well as I could at any of a number of things. Between the day to day facade and flat denial of my visual support nerds, all my learning bandwidth was diverted into running my shitty, self defeating emulator. My shitty shitty emulator did not help me do well in school. It is so stilted that it actively impeded my ability to socialize. But the whole "normalcy as top priority" stuck, even as my mother was hitting me for my grades or the disaster that was my room.

Because it was a condition of being treated as an almost person? I thought everyone worked this hard. I didn't know it was effortless for most people. I didn't understand how they did it and everything else. I didn't know why society picked this as it's normal, as the standard. The refrain of my childhood, "just be normal!" ingrained itself that far. They had me convinced that everyone has to choose that, that everyone is putting in all that effort all the time.

I was 20 when someone finally told me that I could be a kickass autistic or a shitty fake NT. It hadn't completely occurred to me that it was an option! It had to be an option shortly thereafter, because everything went to hell at once, but "be your true self" had never even crossed my mind. It took a while to find my true self. It takes effort to make my true self stand tall and proud.

Real me has friends--something I was told that I had to keep the act going to make happen. Real me has a bit of a job. Real me is getting good grades in school instead of spending energy on figuring out all sorts of interpersonal things. Real me functions better, albeit weirdly, because real me acknowledges and acommodates support needs.

Indistinguishability is tyrannical, because once you achieve it, it is the goal of every moment-to not be distinguished. That is no way to live a life. That actually isn't a good goal at all. If the best prognosis you can possibly get is "will spend life hiding and exhausted", you need to rethink your plans for that individual. Hiding is no way to live.

Friday, November 1, 2013

Autistics Speaking Day: truth to power part 7

This Autistics Speaking Day, I am going to speak truth that certain folks with power in the larger Autistic community would rather I kept to myself. An access fail went down at Autreat 2013. The official incident report is a) not an incident report and b) utterly devoid of "having consulted with the person it actually happened to". Now it's my turn to report on the incident, and the ugly underbelly that was revealed in the immediate and distant aftermath.
Or, what could have been.

This is a fractally fucked up thing. The initial incident was a fuckup: Something the planning committee should have noticed was going to cause a problem for Autistic people at an Autistic-safe event was not noticed. Then an allistic member of said planning committee was using said access violation, creating multiple kinds of access barriers (sensory and seizure). And then said allistic planning committee member, instead of fixing it immediately, instead started being even more terrible.

Then the handling was a fuck up: She then told a very doctored story of events to the Autistic planning committee members. Who were then 17 kinds of terrible to me. Who, in another level of fuckup, decided on a response of let's see how many more kinds of terrible we, as a community, can find!

Benoit Mandelbrot is either horrified or impressed.

Could this have been handled better? Um, obviously. Even if the TV was still there, no where was it written that Cara Wilson had to be so terrible. As awful as many Planning Committee members have been to me, I doubt that "argue with someone about their access need. Declare that Autistics can't care about other people" is part of the official manual.

Had Cara still been shitty, could it have still been handled better? Obviously. There was no need to make the entire debriefing about Cara and downplay that actual harm had been done and catastrophic harm could have been done. There was no need to chastise people reacting in the moment for not being allistic enough (also I am still not sure why fighting with someone about their access need is acceptable? And why Autistic people are being held to a higher standard than an allistic person in this instance?). And there was no need for us to wait for hours for this farce to happen.

The next day? Ok so there were plenty of people who knew I was not fine. There were also plenty of people who knew that those people might know what was up. Asking would not have been hard. Asking me what happened? Also would not have been hard, either Wednesday night or Thursday morning. It would have given the illusion of giving a shit.

And, you know? Jim could have come to my room while there was still processing time. Pushing up against the moment of means there isn't. Jim also could have not ejected Shaun. That really is rather egregious. Or it could have been made clear that not giving the presentation was acceptable. Or if it wasn't? Say it straight out.

And then instead of reacting with hateyness when I had processed, there is a whole lot junctures there where things could have been turned around. The censoring? Was pretty blatant. I certainly didn't agree to that gaslighty incident report, nor was I asked to write my own-indeed, that is what this is now. Exept I'm not pretending this is professional. This is me telling a true story about what happened.

And the spiral into the cesspool the list was last I looked? Completely shameful. It should have been prevented. That it wasn't is a complete indictment of all the people who have that power and elected to run in this direction.

There was lots of time for relationship repair. Loads of time. Contrary to popular belief (Marcie...), I am not particularly mean. I take no shit. There's a difference. I am capable of forgiveness. I forgave AutCom, for fuck's sake, because they sincerely apologized and made steps towards making things right. Now, unlike Autreat, they didn't build me into their big bad monster, to my knowledge, but forgiveness is a thing I do when people are actually sorry and not going to do it again.

There was loads of time for relationship repair. I waited months to write this out because of that. However, it is clear that this is not what Jim wants, or apparently anyone else either. There was time for that. It could have been better. Things could have been barely a thing at all.

Instead they may as well have just gotten the strobe light.

Autistics Speaking day: Truth to power, part 6

This Autistics Speaking Day, I am going to speak truth that certain folks with power in the larger Autistic community would rather I kept to myself. An access fail went down at Autreat 2013. The official incident report is a) not an incident report and b) utterly devoid of "having consulted with the person it actually happened to". Now it's my turn to report on the incident, and the ugly underbelly that was revealed in the immediate and distant aftermath.
Ok so this is where I regale you with ridiculous shit people have said about me that made it through moderation, even (possibly especially) after Jim took over sole moderation of the listserv. As though xyr official incident report wasn't eyebrow raisingly unprofessional enough, the cesspit that the list has turned into is pretty revolting.

Some things about me for you to remember:

-I live on SSI & student loans. So, I'm poor.
-I live on the West coast, a long costly flight from PA.
-I raised money to take a friend with me from the west coast.
-I fundraised for Jim's cat.
-I praised the ever living hell out of Autreat for a year and a bit.
-I was on the list of folks authorized to approach Jim while on an authorized-folks-only tag (unsolicited, xe sent me the email a week? before Autreat)

So this is rugpulling. Or you can listen to what other people have to say.

Oh right, another thing to keep in mind is that the reason Jim cited for being so angry and attacky is that using the word "manipulate" is ascribing motivation. I'd like you to keep that in the front of your mind.

Again, these are not in chronological order. But these are things that have been making it through moderation-while calmly worded statements by people who were actually there are not.

A gem from Marcie (who had a number of them and has never spoken to me ever): I do not want resolution, she says, I am just angry and want to be right. Does she know this from asking me? Nope. But she knows because she has read some of my blog and so she knows all she needs to know!

(what was that about ascribing intentions again?)

And then there's what has morphed into my evil plan. A number of people have been sharing this theory. It's very nice for the doctor on list to think this is financially feasible, but it is not. Nor is it sense making.

Apparently, according to these shining beacons of logic, I planned from the very beginning to go to Autreat, and take a friend to Autreat, and be scheduled to give a presentation at Autreat, and then have my access violated, and then have it poorly handled, shut down, et cetera as a pre determined plan to destroy Autreat.

You cannot make this shit up. But people are running with this one. Again, what is it about motivation attribution? Or is it ok when people are doing it to me because Reasons? And if someone can tell me on what planet that even makes sense, great thanks. I'd like to never go there ever.

There has been never ending attacking and speculation. I am a terrible human being who obviously just wanted to fuck up Jim's day.

Never mind that until this incident I held Jim in extraordinarily high esteem--which they would have known had anyone asked me (one person did. It took some shaming). Clearly because I say fuck a lot all I wanted to do was destroy things. I developed epilepsy just to inconvenience everyone else, is that where this is going?

Cara Wilson is claiming to be confused by how it went down. I'm struggling with this since she's benefiting pretty solidly from her throne in backwards land. Of course this is also my fault somehow. Oh right. She was defending her child. Her 22 year old child who was only in danger of "not getting to watch TV".

And Jim keeps talking about "clearing xyr name". Not about relationship repair. Not about not fucking up again (protip: next time don't be so subtle. Just bring the strobe and be done with it). About clearing xyr name. Again, I am confused: if xe stands so solidly by xyr actions, what needs clearing? And if xe is so convinced that the truth will do so, why is xe censoring the listserv so tightly? Why did xe not even bother talking to me about the incident report or about how poorly mangled things were? There was lots of opportunity for relationship repair. And instead it is a dogpile, with Jim at the head.

I've unfriended numerous people who think that telling me to sit down and shut up and take it is an acceptable thing to do. At least I assume they think it's acceptable since they do it and then defend their actions to me and get huffy when I say I don't tolerate pro bullying stances. 

And there is more. So. Much. More. But really there shouldn't be enough for a post, much less for a series of 7, and here we are...

It's all kinds of bullshit. And since people are going to go all 'well what would you have them do then?' I will tell you in my next post. Though "don't fuck up so fractally" is the obvious answer.

Autistics Speaking Day: truth to power part 5

This Autistics Speaking Day, I am going to speak truth that certain folks with power in the larger Autistic community would rather I kept to myself. An access fail went down at Autreat 2013. The official incident report is a) not an incident report and b) utterly devoid of "having consulted with the person it actually happened to". Now it's my turn to report on the incident, and the ugly underbelly that was revealed in the immediate and distant aftermath.
This is what I'd classify as the immediate aftermath.

Friday is going home day. I couldn't even with the ending session. There were voices happening that made me feel panicky, and disconnected was better than panicky. I remember basically being aimless & still wanting to go home, but it was like I was resigned to not yet.

I could not wait til Beth got back from running folks to the airport. I felt wrong. But we didn't leave til the next day, so I squashed down my escape feelings. Shut myself down even more. Keeping busy wasn't a choice, but Shutdown & Stepford mode is unfortunately something I have experience with. My autopilot is pretty tuned.

We went to the hotel. We got food. That's what I've got. And then Saturday we got up to go to the airport for the flight.

I don't really remember the flights either, except that I couldn't focus and attempted to wind some lace weight yarn of Mandy's into a ball. And failed somewhat spectacularly. It's probably still a tangled mess.

And over the next couple days I started connecting to the world again, reassociating if you will, and realized that scripts used were ones that trigger dissociation and "whatever I need to do I will power through before this turns to extrabad" reactions. I wrote about that.

And then I did something unforgiveable: I said so. That I was not mentally present, that I shouldn't have done the presentation, that I was manipulated.

And people lost their shit. How dare I use that word? Manipulation involves intent.

Except that's not quite right. Manipulation does not require saying "I am going to go be manipulative right now bwah hah hah hah". It requires having an agenda and using your communications toward that agenda.

"Fifty people are waiting to hear your presentation" (or was it 70? I don't know. It doesn't matter) is communicating clearly towards an agenda of making that presentation happen.

And, you know what? I thought that Jim would want to know. Would be mortified perhaps, but would want to know that problem solving scripts and walls of words like that wall of words and such can be experienced that way. Even though xe had effectively kicked the person acting as support person out of the room, ridiculously enough I thought xe cared about me as a human being.

I get the impression that this was a silly thought.

The timeline here, again, is fuzzy, but these are immediate things that happened. It took me til Tuesday or so to find my body enough to not hurt myself, so my brain wasn't exactly there.

But I expressed that I shouldn't have, that I was manipulated, and all the outrage! Because intent is fucking magical!

I expressed that gaslighting is a thing, and it had happened, and even more outrage!

Autreat officials have expressed the view that if you don't sit down and say "how can I be abusive today?" you are not able to be abusive. This is a dangerous attitude for anyone to have, even if they never hurt anyone. It's far too callous towards survivors and far too forgiving of abusers.

So, shit hit the fan. Got really very ugly. Somehow it turned into folks were abusing Jim by using the m word (and then the g word) and how dare we?

Stress is a thing. Rhapsody's death is a thing that I was sad about too (and I helped fundraise his care, but people keep forgetting that). No one claimed that Jim was operating at the top of xyr game.

But that's not an excuse to trigger the abuse survivor script and then get angry when told you triggered the abuse survivor script. No. Fleeing to intentions when you hurt someone is really not actually all that illustrative of good intentions.

So then moderation went on and Jim ragequit after climbing up on the cross-apparently it is gaslighting now to point out gaslighting, and rugpulling to point out that the carpet didn't hold still for two days and counting? and of course all this is all my fault.

The moderation was...interesting. In that no one who was actually there could get a post released but all sorts of speculation did. The only time a post got through was immediately ripped apart by the moderator who approved it.

Which is interesting.

Doug Kline's post stating that "Autreat isn't supposed to be safe for child abuse survivors" got through, uncontradicted. No one has had an explanation about why this is acceptable yet. But anything anyone who was actually there says? Nitpicked to death.

So I disengaged. And watched myself be turned into a monster of epic proportions, for daring to be epileptic at Autreat.

Wait, what was that I was told wasn't going to happen? That my access needs weren't going to be twisted into an excuse to be exclusionary? That's funny. Autreat did exactly this, as neatly as Portland Lindy Exchange. And they're still doing it.

Next post we shall explore my new urban legends as well as some interesting double standards.

Autistics speaking day: Truth to power part 4

This Autistics Speaking Day, I am going to speak truth that certain folks with power in the larger Autistic community would rather I kept to myself. An access fail went down at Autreat 2013. The official incident report is a) not an incident report and b) utterly devoid of "having consulted with the person it actually happened to". Now it's my turn to report on the incident, and the ugly underbelly that was revealed in the immediate and distant aftermath.
 When we last left, I was on my bed with my weighted blanket, unable to really word coherently or stop bursting into tears. Any question that required much thought was greeted with "I don't know!" or "I want to go home!" and a torrent of tears. Several friends were in the room with me, soggy lunch was in the room with me, folks had offered to bring me not so soggy lunch and that did happen at one point.

And this is where I start having nothing but snapshots. My incidental memory is very very good but the order in which the photos go? Not so good. This is what I remember. This is the last part of Autreat where I was connected enough to remember things.

Jim came in. I don't think xe was accompanied by anyone but Sharon and/or Beth may have walked in with xem--I know they had talked to Jim earlier. This, again, was like 10-15 minutes before I was expected to give a presentation, a presentation I was actually very excited about, one I had worked hard on, one that was relevant to the audience, and one that I was in no condition to give.

The first thing Jim said was that xe wasn't going to apologize. And I am all stocked up on bullshit, so that's fine, don't fucking lie to me. But there were and are things that are not ok and that needs to be acknowledged in a way that isn't "poor precious Cara".

And xe said poor precious Cara is in a bad way and understands that it was unfortunate, and that Hannah understands as much as she can. This particular bit was odd to me-"where is Hannah? why aren't you holding Hannah responsible?" (on the couch and because she was utterly passive except for whining about not being able to hear the tv?) was such a big thing on Wednesday night. But now the emphasis on how she couldn't really understand was odd to me. And I remember processing that it was odd.

There were a lot of words. I wasn't processing words really, not all of them. Walls of verbal text. I needed my cognitive interpreter, but my cognitive interpreter lives in Oregon and is allistic and has a day job and that was just not feasible.

So Shaun stepped in. Shaun seemed to be the only person processing what was going on in those walls of words, and Shaun is at least conversational in Stressed Out K, and was at that moment able and willing to try to straighten things out and make sure everyone understood what was going on.

This is where the official report diverges a lot from the reality I experienced. Shaun was not aggressive. Shaun was polite. I statements. Clarifying questions. Trying to make sure that I understood what was going on. Ibby was on the bed giving me hugs, and Shaun was processing for everyone and trying to make sure things were understood. And I gained some understanding and part of that understanding was that attitudes seemed to still be mightily fucked up.

Jim stated that xe felt Shaun was hostile and aggressive and announced that either Shaun left or xe did. So Shaun asked if I wanted him to leave. I burst into tears and yet another top of lungs "I don't know!" and crying because I hadn't cried enough.

Another person said to Shaun "it might be best if you leave". And I do not hold that against this person at all, she thought she was doing what was best & wasn't processing--no one was really processing--but at that point Shaun left & there was no one who could translate for me. Or possibly, who even knew how little I was processing.

I was in no shape to do that presentation. But words and "there are 50 people waiting to hear your presentation" came up several times.

Let's think on "there are 50 people waiting to hear your presentation". That is a declarative statement. That is not remotely "are you able to do your presentation?" That is a statement that induces guilt about inability, it is a statement that makes sure you know what a colossal failure and disappointment you are if you fail to deliver.

That statement tells. That statement does not ask. That statement is very concerned about 50 people. That statement gives no fucks about the person sitting on the bed unable to stop crying or figure out wants and needs.

It is not a secret that I have an abusive upbringing. It is not a secret that I had compliance training. My brain shut down. It shut off. Everything needed to end and the right answer was not "do what you need to do, everyone else will suck it up". The right answer was "go to your little fort inside your head and let autopilot do the damn presentation". And it was not going to end until I did the fucking presentation.

I don't know what the final thing was that made it happen. I know that I gave that damn presentation. I know that I was shut down, because I do not remember my presentation at all. I do not remember Alyssa's 5A at all, and I was her first witness. I do not remember the dance (which I made a set for) or dinner that night or anything. Nothing. It's gone gone gone.

Going from sobbing to Stepford is a bigass problem. It was obvious and abrupt and it is not right. Shutting someone down does not mean the problem went away. It means the problem got bigger.

And it continued to get bigger, as I will write about in the next installment.

Autistics Speaking Day: Truth to Power installment 3

This Autistics Speaking Day, I am going to speak truth that certain folks with power in the larger Autistic community would rather I kept to myself. An access fail went down at Autreat 2013. The official incident report is a) not an incident report and b) utterly devoid of "having consulted with the person it actually happened to". Now it's my turn to report on the incident, and the ugly underbelly that was revealed in the immediate and distant aftermath.
As mentioned in my last post, during the wildly meandering off points meeting after a truly heinous accessibility violation at Autreat 2013, my brain shut down a bit. Nothing I could say would make the point that it wasn't ok, it shouldn't have happened, that it did happen was a big problem rather than a "thing we may want to think about not having  happen in the future", and my brain started checking out a bit.

I cried a lot Wednesday night, even after having a lot of bursting into tears and confusion during the meeting. Everything was wrong and backwards. I was bewildered. The rug kept getting pulled again and again.

I do not like being confused.

I do not like things being backwards.

I do not like things that are supposed to be accessible being not accessible if the "right" person is the one causing the access violation.

I do not like being told that things that plainly happened couldn't have happened because it "doesn't sound" like the person who did them. That's telling me my reality isn't real. That's gaslighting.

I don't respond well to confusion or frustration or bewilderment. I respond with tears. I fell asleep crying on Wednesday night.

And then I woke up convinced that leaving the room was the worst idea in the history of bad ideas. Leaving that room was not going to happen. Nope. Fuck breakfast. Fuck everything.

And the tears again. Because I cannot go without breakfast and because the world is still backwards and upside down and fucked up and wrong.

Someone brought me breakfast. I don't remember who. I remember it was rained on, a lot. It was just dumping rain. It was really unappetizing, too. Hummus and potatoes and rain water and a cup of coffee. I was more anxious than is acceptable but I drank the coffee anyway; last thing I needed was a headache.

And I had to give a presentation. But I wanted to go home. I had told Jim the night before that I wanted to go home. It was midnight, that couldn't happen, the way I was told they could make that happen made it sound mightily like they could make that  happen Thursday morning. And I wanted to go home. All I wanted out of life was to go home.

All I could do was cry. And bang my head. And panic. There might very well be a K's Head shaped dent in the wall. People were in and out all morning and I wanted to go home.

I thought maybe Phil Schwarz could make it so I could go home. He's planning committee, was a site person, and I've known him for nearly half my life. We did workshops together in 2004 or so, for fuck's sake. So several someones went to find Phil for me.

That went poorly. Very poorly. Surprisingly poorly. I'd been crying and headbanging and bursting into tears all day and it ends up with Phil yelling at me. Because he didn't know what happened. He knew what Cara said happened. And yet again it was all about poor Cara and yet again "that doesn't sound like the Cara Wilson I know". Yet again with the telling me what happened did not.

I expected way better of Phil. And all I wanted was to go home. And instead I got yelled at for preventing a medical emergency-the ER counts got brought up again, again hilariously oblivious to the fact that Shaun & Katie had prevented another one--and gaslit and the going home decidedly did not happen. Yet another rug, pulled. That awkward moment when you find out that someone you had trusted for over a decade can't be assed to ask what happened before he yells at you.

I ended up having Mandy email Phil for me, because he came in yelling and words and crying comes at a high volume for me (oh and yes I was still bursting into tears--I have the stamina of a trained athlete and the lung capacity of a choral veteran). She emailed him. Told him I wanted to go home. He said something about how he shouldn't have opened his "fucking Aspie mouth" (his words not mine), which is the closest thing I've gotten in all of this to an admission that maybe the Autreat folks aren't fucking perfect. And he told Mandy they couldn't send me home. I had heard differently from Jim the night before.

Wailing ensued. Some more. Because it was not safe to be anywhere but the room or on the way home. Autreat was not safe. Most of the words I was capable of were "I don't know" for most of the day and forcing out sentences was not particularly worth it.

People came in and out a bit morning and early afternoon. Alyssa and Ibby and others. Lunch was not appetizing either, again it was rained on and mushy. The food the other days was ok, but it was really quite unacceptable on Thursday. People came to see me-I did not go to see them. It was not safe.

Eventually I took a shower because I thought it might help the anxiety. No. I had an anxiety attack so fierce I had to sit in the shower to catch myself.

I could not give my presentation or be Alyssa's 5A First Witness or do my swing set at the dance that night or anything. No. It could not happen. I couldn't. I told several other people that I could not could not do it, that if Jim wanted it to happen, then xe probably needed to talk to me in a way that showed that Autreat was a safe space. Because it wasn't a safe place. Leaving was not safe. Leaving was inviting being attacked with seizure triggers again.

I was in no shape to give a presentation. With 10 minutes to go before said presentation (talk about cutting it close), Jim showed up at the door. And what followed was not good at all.

And I cannot write about it now. The triggering is phenomenal. Just writing about the anxiety is speeding my heart and making me want to beat my head until the thinking stops.

To be continued...

Autistics Speaking Day: Speaking Truth to Power part 2

This Autistics Speaking Day, I am going to speak truth that certain folks with power in the larger Autistic community would rather I kept to myself. An access fail went down at Autreat 2013. The official incident report is a) not an incident report and b) utterly devoid of "having consulted with the person it actually happened to". Now it's my turn to report on the incident, and the ugly underbelly that was revealed in the immediate and distant aftermath.
Several hours after the initial incident, the tremendous access fail/power trip, things were still not ok.

I spent the few hours waiting for Jim Sinclair to deign to actually speak to us chewing on my hand under my weighted blanket. I was upset because this is not supposed to happen at Autreat. At Autreat things are supposed to be accessible. "We do not discriminate on basis of disability or lack thereof," it says. Autreat is supposed to understand that sensory issues are a thing, and that co occurring conditions are a thing, and it is supposed to be a place where access is granted without a fuss.

The "go be somewhere else then" is not a thing that is supposed to happen at Autreat. No. That is not how it is supposed to be. And I could not stop crying and shaking about it because it is the same damn access fail as everyone else ever, that it always turns into "go be somewhere else". That it becomes "you're an extreme minority so fuck off of my party".

And that is the thought loop I was on when Jim deigned to show up. I'm not good at time and at order of things but that, I remember, that I was on that loop. I was on that loop & people were telling me that it wasn't like that, that Autreat was better than that.

And that it was immediately about how Cara was so traumatized and wronged because she said she was. Not asking me or Katie or Shaun or anyone else what had happened. Telling us that Cara was not doing well. This was not a good way to start. At all. Someone nearly triggers someone's potentially fatal medical condition (as I was definitely auratastic, technically did trigger it) and it is all about that person? What is this nonsense?

Only after telling us all about Cara did Jim ask us what happened. And we told xem as coherent a narrative as possible. I was upset and shaky and struggle with words even in good times, but the story was narrative and the high points (low points?) were hit.

Jim kept asking us where Hannah was in the story. This was odd. Hannah was on the couch while Cara titrated the volume for her. No, no one was blaming Hannah because, while she is a grownass adult, Cara let her lay on the couch and adjusted the volume at her command. It was really odd to me both at the time and now. It seemed irrelevant. It still seems irrelevant unless I am going to be uncharitable and ascribe motivations (which people have been doing to me for months, but that's getting ahead of myself). So, precious Hannah was on the couch. That's where.

And there was barely a cursory anything about what had happened. There was a lot of "I can't believe Cara would do that" and some lip service to how it shouldn't have been a thing, but the fact is it was a thing and telling me that Cara wouldn't do something she did, in fact, do is not helpful. It is the opposite of helpful.

Jim said lots of words. Some of those words were about seeing to it that this didn't happen again, beginning with the TV. The TV should never have been a thing was one of my frustrations-if Cara had been there from the beginning, even if she isn't autistic she should have known better, especially as she is throwing planning committee status around. It is pretty much Autism 101 that loud things are a problem. That loud things in common areas are an access barrier, even without conditions that make them medically dangerous. Random Jackass #22 off the street whose entire autism education is mass media knows that putting a TV in the common area a group of Autistics share is a poor choice.

I was not and continue to not be impressed with the planning committee managing to miss that one. 

Jim's reaction to Cara pulling the planning committee card is also not impressive; telling me that she's not on site as a planning committee site contact or whatever the title is doesn't really help. She is throwing around a position of perceived authority as a means of getting the upper hand in a conflict (that shouldn't exist because access needs trump optional preferences. Except not in Autreatland). That is not acceptable. You don't get to do that.

Somewhere in there were words as well explaining that it took hours to get up there and people were stressed because there'd already been a number of ER trips. This was apparently unironic, though Katie & Shaun's quick action and noticing that I was not fucking around were responsible for preventing another ER trip. And that ER trip would have been quite the adventure, as folks there weren't particularly familiar with either my communication idiosyncrasies or my flavor of epilepsy. Pointing this out did not seem to change the flow of words.

Other words were had that seemed to be telling Shaun & Katie that they fucked up with acting quickly to prevent an emergency that could have not been triggered easily in the first place. How they weren't nice enough or NT acting enough or something. Many words were spent on the idea of people having safety plans on file, that people should be designated to be supporters who thought they could do it. This baffles me. Autistic people are going to be Autistic regardless of what is happening. They did exactly the right thing, or tried to: neutralize the threat. Find somewhere not threatening. Be ready for the torrent of upset about how fucked up it is that I can't be places because other people are selfish sacks of crap. They did that. That's pretty much what can be expected. I could see my NT friend unplugging the TV in the situation. That's pretty aggressive. Katie & Shaun did the right thing and yet it seemed that we were being told that doing the right thing was wrong because logic I could not follow.

I shut down pretty substantially during the meeting. Between feeling like I had to defend my right to be epileptic in public--exactly what Autreat is not supposed to be like--and having attention diverted onto how Cara was not having a great time either and the minimization of things I checked out. It didn't fucking matter. It was discouraging and it was shitty. It was backwards upside down land. The choices were shut down, or keep bursting into tears and failing spectacularly to be heard. My brain decided that checking  out was a wiser use of my resources; I was confused and crying and just confused is far much less exhausting.

Installment 3 is the next morning. Which was not better.

Thursday, October 31, 2013

Autistics Speaking Day: Speaking truth to power. AUTISTIC power.

This Autistics Speaking Day, I am going to speak truth that certain folks with power in the larger Autistic community would rather I kept to myself. An access fail went down at Autreat 2013. The official incident report is a) not an incident report and b) utterly devoid of "having consulted with the person it actually happened to". Now it's my turn to report on the incident, and the ugly underbelly that was revealed in the immediate and distant aftermath.
Some background first:

Autreat 2013 was my second Autreat. I started saving to go back the day I got home from 2012, and I crowdsourced a local friend to go with me as well. It's a big financial undertaking, and a time undertaking as well, as it is a Monday-Friday event. Since we are from the west coast this means leaving a day early, flying back a day late. In short, I really wanted to go. I was invested in the success. Hell, I even prepared a presentation. I believed that Autreat was a safe place to bring a friend to, a place where it was ok to be. They make sure to ask about access needs, so one expects they're using that information.

Keep coming back to those things throughout this series.

The first few days of Autreat 2013 were not the magic that they were in 2012, but they were pretty good. I got quality face time with people who I know and love, and met some new people. A big group of people I know from online came and seeing them was a treat and a half. And then it was Wednesday. The incident on Wednesday night & the continued mishandling of it has eclipsed every other memory of Autreat I have this year, & tainted many from last year.

So, let's talk about Wednesday. Several folks were in the one and only kitchen with the one and only fridge, the one and only place someone could prepare meat. I was invited to dine on meat with some folks who know that my protein/fat/general calorie needs were not being met on the meal plan. In the same room as the one and only kitchenette are some soft pieces of furniture, stacks of nouns (sorry, they're objects, that's what I've got), and a TV. Also some of the most hellish fluorescent lights I've ever seen.

The TV was on, and loud. The lights were on, and bright. People kept leaving the room, citing the volume as making the room inhospitable. I didn't want to be in there either, with the light and the sound I was getting seizurey, but it's rude to just expect someone to cook for you, right? I took a walk to unseizurefy in the room next door--I was probably right on edge at that moment, the friends with me were acting as though I was acting seizurey--& when we came back in, it was, if possible, even louder.

So I asked the people who were using the TV, Hannah and Cara Wilson, if they could turn it down. No, they cannot, says Cara, because Hannah has a right to use the room too. Except Hannah's use was effectively chasing everyone else out of the room where they were storing the food. I sarcastically said well clearly autistic people can't care about other people, and she said, not sarcastically, that not caring about other people is what autism is!

Someone at Autreat, Cara Wilson, asserted that the definition of autism is not caring about other people.

I left the room abruptly because I was very seizurey at this point-I can't really do this whole "on the verge" thing for a long time. It gets worse, not better. And then I had to come back in for my backpack, which had my key to my room and had my rescue meds.

When I got back in, it was still loud and food was not done. And Cara was still crouched by the TV, manually calibrating the volume for her daughter Hannah, who was lounging in some fashion on the couch.

And then the TV, already loud, already booming with subwooferage, hit the forbidden frequency of bass. The seizuregenic one. Everyone else hit the floor, hands over ears, I yelled that it needed down NOW because it was a seizure trigger, Katie tried to turn down the TV, but it never got quieter and the floor kept shaking.

Cara Wilson said these things to me:

She told me that I wasn't going to die from a seizure (I have before, in 2005. I got better).
She told me that seizures are not a big deal (my actual doctor disagrees).
She told me that Hannah's want to watch TV matters more than anyone's sensory or medical needs.
She told me to go be somewhere else if it bothered me that much.
She told me that she was there from the beginning and is planning committee, ergo, she does what she wants.

Let me say that last one again: Cara Wilson pulled out "I'm planning committee" and "I have been here from the beginning" as reasons that she didn't need to take someone's access needs seriously. As reasons to dismiss someone's very real, documented, presented to a lot of people before hand medical issues. Because Hannah gets to do whatever the fuck she wants at Autreat, Cara will see to that! And it's ok because she's been there from the beginning and because, Doctor Cara says "autistics don't care about other people" is the definition of autism.

So it was loud and it was terrible and there was yelling and the ground was shaking and Katie & Shaun helped me leave the room with my backpack. Cara tried to follow me, still yelling at me, though I was at the point of stress and seizure activity where I do not know what the words were. I say tried because Yes, That Too's Alyssa saw what was going on and kept getting between her & me so we could get to the elevator and  upstairs.

So that was the beginning of this whole nightmare, where what I thought was my community, a good community, turned access completely backwards and upside down in name of ego and claiming seniority. The beginning, and terrible, and never should have happened, but nowhere near the end.

Next episode: The "immediate" aftermath (immediate here meaning "a few hours later")

Friday, October 4, 2013

If you don't use your words you won't be indistinguishable.

"What's wrong with saying 'use your words'? My son's ABA therapists told me to!"

Yes, and your son's ABA therapists jobs are dependent on the promise of indistinguishability, their entire professional life revolves around creating a performance of typicality, not with helping Autistic people actually be healthy happy Autistic people. The whole indistinguishability series is all about that. Today, let's talk about "use your words". This will be a trip through all the levels on which that phrase is not awesome, semi stream of consciousness style.

So, what is wrong with "use your words"? Let's think for a moment. When do you say that? Do you say it when you have no idea what I am communicating? No you do not. Not generally. Those of you who give a shit establish if it's urgent, life threatening or something, first. But you know I'm not dying? You have a pretty good idea what I'm saying? "Use your words!"

This is you holding my needs and wants hostage to my ability to communicate your way. Once you're reasonably sure I am not actively being mauled by a bear? You've decided it isn't important enough to me if I don't communicate it how you want.

This is an extremely dangerous assumption to make, and completely backwards. If something is urgent and important, words are hard. Your brain may go to words first. Mine does not. Not even a little. "Use your hands & sounds" is a better way to get useful communication from me when something is urgent and important. What my body does? Far more reliable than what my mouth says.

The less impact and importance my speech has, the more reliable it is, especially in a real-time communication situation. That part of my brain shuts down when what I say has immediate consequences of any significance.

"Use your words" assumes the exact opposite of this. It assumes my words mean more under duress. They do not. You are going to get whatever words fall out of my mouth in an order that may or may not make any sense or relate at all to what I am trying to convey. It might even be the opposite of what I mean.

Making that assumption comes from a dangerous place. When you demand that I "use my words", the underlying attitude is that I can but am choosing not to. That I am intentionally doing something to make my life more difficult. No, I am fucking not flapping, semi-signing, making non-word sounds, crying, starting and stopping words just to piss you off. Allistics act like we're just trying to make their lives difficult or add annoyance to their day. So they tell us to use our words, like it's just that simple.

But if we could, we would be. Let's walk in some Autistic shoes. Is flailing and sound making efficient? No. No it is not. It causes me far more actual problems than it could possibly ever cause you. "Use your words" says that I am choosing the non-awesome results of being unable to speak in that moment. It's really presumptuous, actually, for you to make that assumption. It's very allistic-centering.

"Use your words" holds my needs hostage to performance of typicality and says I do not deserve to have my needs met if I cannot make that performance work. That is what you are saying when you tell me to use my words.

And you don't even really want my words. My words come in atypical syntax (which apparently is charming when I'm not trying to communicate something that you don't want to hear) and I do, in fact, say "fuck" a lot. Especially under duress. That is not the word you want when you condescendingly tell me to use my words. You want your sentence construction. You want "polite" and "respectful" and the genuine words I have access to are not perceived as either-not the words I can use in a stress situation.

The result of this and of a childhood of "use your words" isn't less swearing or more standard syntax. It is a library of scripts. My grocery store small-talk script is unlikely to be useful--and has actively sabotaged medical care when the nurse triggered the "I'm-fine-thanks-how-are-you?" sing song. Having to fall back on scripts rather than use my natural means severely inhibits communication--my message is falsely constrained to the socially appropriate things I can echo under stress.

They may not all sound like echoes. If a script is caught as a script, it is "meaningless echolalia" and not communication, unless of course it fits the least irritating narrative for the allistics involved (see: the nurses who decided I was fine when they triggered the grocery store script. I had cysts hemorrhaging on my ovaries at the time. Plural cysts. This wasn't life threatening but it causes scarring and incredible pain).

"Use your words" is silencing. "Use your words" is a tool used to silence those of us who cannot-not will not, can not, express ourselves on your terms all the time. "Use your words" is yet another thing that promotes a facade of normalcy at the expense of our very real needs and desires. "Use your words" is yet another thing that demands performance, or else. "Use your words" is emblematic of the idea that only typical people have a right to have needs or wants. It is a Lovaas-esque "the child has no right to behave bizarrely" tactic that pretends we are nothing but our superficial behavior, and that we can choose to change that if there is a strong enough reinforcer.

"Use your words" is oppressive ableist bullshit. These are my words: Touch your fucking nose.

Wednesday, September 25, 2013

The cost of indistinguishability is unreasonable.

Comments are turned off on this. If I want to hear from you, you know how to contact me anyway.

With apologies/thanks to Beth of Love Explosions for the perfect title.

All below the cut because it's a) long and b) probably going to be triggery for things like suicidality and fake friends and emotional abuse. I already know this is a hard write & I don't know that I'll be able to go back through and ID the triggers.

But the cost of indistinguishability is unreasonable, as my past few weeks have kind of proven.

Friday, September 20, 2013

Indistinguishable from peers means: you don't have autism related problems

If you are declared indistinguishable from peers, which, as you may recall, is basically an educational diagnosis, people mistake this for not being Autistic any more. It is presented as such so of course the adults around the "indistinguishable" child act like this is the case, yes?

There are some problems with this. The one I'm talking about today is very practical: what ends up happening when the child inevitably has problems.

An Autistic child is vulnerable to a lot of problems-even an academically at grade level Autistic child. Perhaps especially an academically at grade level Autistic child. We are targeted for bullying by both students and teachers--we are not socially indistinguishable, just academically. We have high rates of anxiety and depression. We, like all people, get frustrated when we are misunderstood or misunderstanding. We have executive functioning difficulties that lead to problems with homework. Even if we are on grade level, we still have difficulties that the language of "indistinguishable from peers" ignores.

So, it's K's overshare time again. I was academically indistinguishable from peers. I have been to a number of psychologists and other people who think they know brains since childhood, because the issues I was having could not possibly be autism! They were everything but autism! Let's see if I can get their NOT AUTISM hypothesis in chronological order:

-I was emotionally immature and bored
-I wanted attention
-I wanted less attention
-"maybe she's still autistic" (that one got fired)
-I wasn't adjusting to my youngest sibling
-I was struggling with my mom & last name donor's divorce
-I was having a personality conflict with my teacher (all of them?)
-I was having a personality conflict with my last name donor's wife (technically true. But it was my fault because I was the child)
-I wasn't as smart as we thought I was
-I was twice as smart as we thought I was
-I wasn't doing homework as a way of seizing control
-I wasn't doing homework because I wanted the attention not getting homework gets
-I wasn't doing homework because of a fear of failing at it
-I was refusing to get along with stepparents and parents because of deep seated resentment of...they were never quite clear
-I was oppositional defiant
-I had ADHD
-I liked the attention being bullied got

And the constant refrain of "the common denominator in all of these problems is you." Constant refrain. The guy who billed himself as a problem solving expert. The guy who said I was too social to have ever been autistic because I had a friend. The guy who I never looked at ever but his name was Mike. All the parental units who were local to me.

The common denominator in all these problems is you.

Turns out adults who were indistinguishable as children have a really high rate of depression and suicide attempts. We tend to run pretty suicidal as children, too. It's logical, isn't it? If the common denominator is us, if we have issues related to a disability that we no longer have, isn't the way to end the problems to take out the common denominator? Everything that goes wrong is a function of bad choices we are making, everyone has a hypothesis on them, but we cannot make them stop because our neurology does not work that way. It is a choice that makes sense and a choice that would make it all just stop.

And that doesn't go away when you turn 18, or when they say "ha ha my bad, autism is lifelong and indistinguishability doesn't mean what everybody thinks it means." Those years of being the least common denominator and of all of those hypotheses being applied to you? They stick. Forever.

The 'residual deficits' that were referred to in Lovaas's 1987 paper are way more life-impacting than anyone wants to believe. You can't sell "we might be able to get your kid educationally mainstreamed, and that kid might end up there anyway, but said kid will still have autistic traits because they are still autistic" the way you can sell "indistinguishability" and just not mentioning it what it actually means. And damn the long term effects. It's not like autistic folks are actually people, but that's another post.

Monday, September 16, 2013

It's too soon.

It's too soon.

It's always too soon, but it's even more too soon than usual. Another Autistic child was murdered by his mother. So was his sister, neurology unknown.

It's too soon.

We were still reeling from Issy, is pain from Alex, have never-healing wounds from Daniel, from George, from Calista, from Katie, from hundreds of others. And now Jaelen and Faith are added to the list too.

It's too soon. It's always too soon.

And we are hurting. Many of us cannot stop crying, or are going to have to shut ourselves down to do what needs doing (things always need doing. Time doesn't stop just because the world crashes down again). You can't call in "someone killed another kid for being like me" to work. Not even if disclosing to your employer is safe.

It's too soon, but shit needs doing, so we have to shut ourselves off & do every day life.

Before we even knew Jaelen's name people were justifying his murder, saying how hard it is for parents. Always always always demanding we think about the parents. Did they think about Jaelen? Did they think about Issy? Did they think about Torrance? Did they think about Leosha? Did they think about Tracy? Did they think about Chrstopher? All signs point to no.

It's too soon. I can't think about the parents. I will never be able to understand what they did, why they did it. Not ever. I am mourning all the people killed for existing while disabled. My heart is full and my eyes are leaking for the killed, not for the killers.

It's always too soon. We aren't done mourning the last victim. We aren't done with necessary activism for the last few victims. There's always another disabled person whose memory needs honored-often lost at the hands of someone who should hold them dear. But the job of mourning? It falls to our community. And we do it. And we fight for the living, so there isn't another name, another story, added to the saddest part of our history.

But there will be more. And it will always be too soon.

Friday, September 13, 2013

Indistinguishable From Peers-an introduction

This is in theory the first post of a series that will explore "optimal outcome" of autistic folks subjected to behavioral interventions. Much of the language around the subject revolves around children, and a lot of what I am saying will be about children as well. When I say children, I do in fact mean young people. If I talk about Autistics, that's all of us. 'Children' refers to young folks, in this case often preschool and elementary aged.

The stated goal/implied promise of many behavioral programs "for autism", based on UCLA's Young Autism program of the 80s, is "indistinguishabilitly from peers". What this implies, though cannot say flat out, is that the subject of the interventions will be NT. Well, not really be NT. But they will look NT.

Except, not really. No promises are made as to neurotypicality if one looks at the definitions used to make these claims. The definition used in the Young Autism Project? Placement in a typical kindergarten class and being promoted yearly. More recent literature has used the definition of being placed in regular education and having at least one non disabled friend. How many Autistic folks do you know who meet this definition? And yet how many of us are so not like our peers in most other ways?

Being declared indistinguishable from peers does not do any favors to the child, except maybe ending the hours and hours of discrete trial training. Being academically "on track" does not magically confer socialization or executive function abilities. It does not mean that someone is not recognizable, sometimes immediately, as Autistic according to DSM criteria. All it means is that the student does book learnin' at the same level as people  born in the same year. No more, no less.

This misunderstanding (all the weasel words!) does Autistic students--and their families--a huge disservice. The term implies that students should need no services, that they're normal now. But life is not just school, and school is not just books and tests. Discrete trial training does not and cannot measure things like executive function or ability to cope and thrive in the unstructured environment of the playground or sensory regulation. Yet these kids are indistinguishable from peers! They're normal! No services!

Another issue is the behavioral and choice perspective this all takes. You're declared indistinguishable from peers, so if you are struggling it's your own fault. You've been officially declared indistinguishable, so something you are choosing to do is enticing the bullies. You're too academically capable to need help with anything else. Amy and all traits of autissm are due to moral failures and choosing to act different once you've been declared indistinguishable. Lovaas said you have no right to act bizarrely (this is one of the things that stuck with me from my reading of "the ME book"), so when you choose to do so, you choose the negative consequences. Any 'distinguishability' and the way people react to it, is a function of your own faults.

This also essentially punishes Autistics for learning coping skills. They might get you through the lower grades, maybe even into high school or young adulthood if circumstances line up, but there will come a time when scripts and constant vigilance are not enough. There is always too much to process, too much to juggle, more and more things to do and ever increasing demands. Putting a veneer of "indistinguishability" on top of that is just setting us up for burnout. And then we are punished further if we can scrape together one last skill to seek help for burnout, help that doesn't even exist. Failed indistinguishability should just fade away.

I plan to touch on these topics and some other issues over the next while. Indistinguishable does not mean what people are led to believe it means, and this is something that needs more exploration.

Sunday, September 8, 2013

Here, try on some of my shoes.

Yet another parent has tried to kill her child, so of course people are again coming out of the woodwork to demand those of us who say "down with that sort of thing" walk in her shoes. They seem unaware that we, too, have shoes. So this is an illustrated guide to most of the shoes I remember walking in. Please return them in good condition.

child's white two strap sandal

This is very similar to the sandals I was wearing when it became clear I could read. I was about 2, in my grandparents' kitchen.

I could not speak yet, but I was reading. Catalogs and cookbooks mostly, these are what was at my level and had more words than pictures. I also distinctly remember pouring my juice on my lunch and being distressed that the juice wouldn't go back in the cup at this age.

white velcro kids shoes
I had a pair of shoes like this around the time I was diagnosed. I also had a pair of Punky Brewster sneakers but what I really remember is kicking things with my white velcro shoes. And velcroing/unvelcroing over and over and over.

I was wearing similar shoes when I learned how to speak. My first words were "mommy go away in the car." And I put them on the wrong feet. And I was wearing them when my mom split my lip slapping my face because I didn't look her in the face. And I was wearing them when I realized that all boys look alike in Kindergarten. And when I found out that when you can't tell the teacher who is being mean, they're meaner, because they get away with it. And when I learned that kids will be nice for a week to get a movie and popcorn, but then they'll be mean again because the behavior chart has the weird kid's name on it, not the names of the people who are the Antecedent to the Behavior.

I was not wearing these or any other shoes during ABA sessions. Not after the first time. I had strong little legs even then.

white laceup child sneakers with pink trim

These were my first tie shoes. I wore them to soccer practice. I wasn't good at soccer and only played in 1st grade. I was overwhelmed and afraid of the ball (I couldn't track it) and too much was going on. I regularly melted down when we played Monkey in the Middle; I wasn't very good and so the coach called me Monkey and I thought he was making fun of me (spoiler alert: he was. Adults make fun of children all teh time). So that was it for soccer.

I was also wearing these shoes in class when the teacher made fun of my handwriting. I don't think I qualify as dysgraphic but I certainly had poor fine motor skills. She'd call me up to the board to write phonics lessons on the board and then mock my handwriting. She didn't like that I was already reading at a high school level so she made fun of my writing. She even told my mother that she wouldn't let me read at my level until I had nice handwriting.

These were on my feet when I started noticing what felt like really intense in-body experiences. Not out of body, in body. Like I was stuffed somewhere up inside myself and my body was a mecha. It was very strange, depersonalization or derealization or something. It was also seizure activity, but I couldn't express it very clearly and so instead of aggressive treatment for epilepsy, I got aggressive treatment for "off task behavior".

And of course the bullying just ramped up and up.

forest green lace up suede shoes

If we are looking at life as a series of shoes, these might be the ones that indicated my mother's good-parent choices were going down the tubes. She sent her Autistic, sensory defensive, already bullied to PTSD child to a 3 story school in green suede oxfords. It was the 90s.

So let's talk about the years I was at that school, yes? I have already talked ad nauseum about my mother, and all you folks want is for me to take her shoes for a ride, going to far as to defend her abusive behavior (which started when I was at the Green Shoes School). So go review my posts about my mother, and then we're going to talk more about this shoe option.

In theory, I wore these shoes to a private school that sought to meet all my educational needs-those of an executive-functioning challenged, sensory challenged, socially interesting profoundly gifted child. This school was advertised as being very good for children like me.

In practice? I had no trouble whatsoever grasping the academic content. It was not a challenge. Getting the work done was because the attitude was still "if you're so damn smart just do it, god, what are you stupid or something?" I was wearing these shoes the first time someone called me "retard". It was at the Green Shoes School where I got locked in a locker as teachers watched-and got suspended for kicking my way out. It was at this school where I got pushed down stairs, locked into places, touched without permission, had my books stolen, had people cut out chunks of my hair (and get away with it, possibly because I have a shitton of hair or possibly because the teachers just did not care). It was at this school where the principal threw an ice bag at me after I got hit in the head in PE class. The PE teacher wouldn't let me get ice. I had a concussion. This was before I had dents in my skull. Shortly before, but before.

It was here that I stopped attending art class because it was hell. Sensory and social hell. It was here that I learned that you never, ever tell an adult or authority figure because when you do, they make your life even harder. It was here that I learned it is easier to hit back than it is to get help.

Where was my option to snap? Walk in my green shoes a while.

black suede lace up shoes

These black suede laceup oxfords are similar to the shoes I wore to high school. They started out all new and whole. My self concept was pretty trashed, however, and any family relationships were well on their way to the sewer too.

See, I got to ninth grade knowing I was smart enough to do anything academic, yet too stupid to actually do it. I got to ninth grade knowing it was my fault if anyone hurt me, even very badly, because I fluttered my hands or didn't look at their faces or didn't grasp that they were trying to be funny fast enough. I got to ninth grade knowing that everything is bullshit.

PE was hell. Not like middle school hell, where an incompetent fool allowed sixth graders to pick teams-always based on popularity, not actual ability. And even if it was ability that's still cruel. More in the change fast, run around in a loud bright echoey place just long enough to get really unregulated, change again. So what does an unregulated body do? It cries. Or mine does, given space to just cry and not have anyone in my space. So there was lots of PE crying, and trying to explain that it wasn't anything wrong, I just couldn't stop crying.

There were things wrong, but they weren't PE.

The bullying mostly tapered off in high school (you only need to scare one person who pulls your hair...), at least from fellow students. Teachers kept up with the "if you're so damn smart why are you so damn stupid?" and I stopped taking classes that were academically even a bit of a challenge-no one would help me get set up to do the work, so fine, I can pull a great GPA in classes that I can do actually in class.

I beat the valedictorian of the class above me for the highest grade in our Biology class. Yet I couldn't write a term paper on a word because no one would tell me the requirements. For not magically having this knowledge-and a printer that wasn't dot matrix-I was all sorts of stupid. Just ask my Freshman English teacher. And my mom was out of fucks to give, just telling me the same thing-that I was smart so figure it out.

These are the shoes I was wearing the first time my mother threw my head into a wall. I think. That might have actually been at Green Shoes School. I know I was wearing these when she started trying to start fights in earnest. Maybe once I hit 90 pounds she thought she'd get some sympathy? She was around 150 so I was still outweighed.

These are the shoes I was wearing when I had to jump out of the window to get to school in my sophomore year because my stepdad wouldn't move. The day my mom said she didn't care unless he was naked about to rape me, the day I knew she knew he already had.

These are the shoes I wore to holes. I walked through snow in them, walking home or to the gym to avoid home. I walked through rain in them. My feet got very wet and very cold in these shoes. These are the shoes I was frequently wearing at church where I had to pretend everything was pretty and lovely even though it wasn't.

green suede skater style shoe

OK so let me talk about these shoes. I actually had 2 pairs. And they weren't identical to these, but I could not find a pair of Surge-green late 90s Sketchers to use as an illustration so here we are. I had my pair, which were the color of that soda, Surge. Remember Surge? I do. I remember not understanding the big deal. And the other ones were blue. A sister and I were in the same shoe size for about five minutes and I got a second pair of sneakers out of the deal when she grew again.

I got a pass to wear sneakers to school in late high school because my ankles were always, always jacked up. I wore, therefore, really brightly colored sneakers to school. It's probably the worst thing I did as a kid. Being unable to do homework is actually not misbehavior, contrary to the opinion of everyone around me.

My shoe pass coincided with my mother being more and more physically abusive, my last name donor's wife being more and more emotionally abusive. I had a group of friends at this point, but what does that do if you're not sure you'll survive your drunk, unpredictable mother?

I was wearing these shoes when I was put on Adderall. I was wearing them when the side effects were so bad that my gymnastics coach made me promise to never take it again. I was wearing them when my mother tried to talk the doctor into jacking up the dose and then she stormed out when he asked if she was going to take them herself.

She was going to take them herself. But Autistic children drive their parents to drink, smoke, drugs, and murder, right? I should walk in her shoes.

These are the shoes I was wearing when I went to competitions. This isn't particularly relevant, except the day of a state meet in a year I could drive. My mother wanted me to go to church with them before the meet. I declined because everything always smelled like smoke, there is no getting smoke out of a leotard, there really isn't, and because I did not trust her to then take me to the meet on time. We always did have a different sense of what on time meant.

She told me that if I didn't go with them to church I couldn't come back.

I had prepared a bag for this weeks before, because I knew what she was like. I knew escape readiness needed to be a thing.

I dragged some blankets and the things I needed for the day through my house and back yard with my mother screaming obscenities, demanding for me to come back so she could beat me or burn me or whatever, as fast as I could go, in these shoes.

They took me rotating through houses as my mother tried to report me as missing and wandering and what have you after that, tried to get me committed and under guardianship. You can't commit someone you can't find, and it was clear, oh so very clear, that my mother meant me no good at all.

She told me I could never come back. And I didn't. These shoes took me out of there, but first they walked through all sorts of hell. Try them on?

light tan feet, the left one has a black ankle brace

These shoes took me into battle. They took me into battle the day my mother told me to come back and let her dent my skull again or never come back at all. I won state champion that day, and then cried on friends because I didn't know what to do. But these are my battle boots, my callouses and my ankle brace and now the screws in my ankle, and the order of things is do the job, then lose it.

Sometimes, before that day, it was a battle boots day-a competition. Sometimes I'd get there whole and fresh and unstressed, riding with a teammate or my sister or occasionally just my mom. Sometimes I'd be stressed, often from my mom. Sometimes I'd have already put a shoulder back in place that day, or my stepdad would have been forcefully throwing his seat into my knees the whole ride. Autistics are not the only people who "have aggressive behaviors", but when he did that it was acceptable. I don't know why. It was though. Should I walk in his shoes?

white sneakers
I think I had a couple pairs of these, only mine had laces. They walked with me from the homeless shelter to all sorts of places. Before that, they were on my feet when my last name donor's wife threw hot coffee all over the elf dress I had made myself. They were on my feet when I fled my last name donor's house because his wife just would not get out of my face and I hate, hate physically defending myself but just once flight was actually somewhat an option. I had to knock over a sibling who was twice my size, but he was on the stairs and had plenty of opportunity to move and was looking for fight. If I were not moving so fast, again, I could have died that night. Or been wrongfully put in a hospital or guardianship.

These shoes came with me when I was trying to get my med situation for epilepsy figured out. They took me in the car, on busses, on foot, to pharmacies and to the doctor, the very nice doctor who let me pay with writing instead of with money when I had no insurance. They took me to apply for Medicaid, when they told me I should get knocked up if I want insurance so badly. They took me to grocery stores where I'd get lost in the chaos.

They were my homeless shelter shoes. The shelter was the only place I had ever lived where I knew I wasn't going to be attacked at night.

The homeless shelter was the only place I had ever lived where I knew I wasn't going to be attacked at night. 

One more time, with feeling: The homeless shelter was the only place I had ever lived where I knew I wasn't going to be attacked at night.

These were the shoes on my feet when I was very, very physically ill, when my mother told me to get a real job or die on the streets. That's the last time I ever spoke to her.

These were the shoes I had when, technically, I did die, for some definition of die. These are the shoes of the year of the seizure, a year I barely remember because frequent seizures don't let your brain move things from short term to long term memory.

These are the shoes I had when I found out "very physically ill" was adrenal insufficiency, and that it was actually quite surprising that I hadn't died from it yet. And these are the shoes I had when the year of the seizure ended.

These, too, were the shoes that eventually took me into the west, when I had to relearn how to walk. These are the shoes that took me to oh so many doctors who did not believe an orthopedist screwed up my ankle surgery. The first one who actually looked at it was appalled at exactly how messed up my ankle was, but Autistic people don't understand pain, you see, or how things work, so I could have been making it up.

My left shoe wore out ages faster than my right one because I didn't walk with my right foot for nearly a year. For a while I was living on a rice cake and peanut butter a day, nothing else, because I could not get to the store and bring things home. The Spokane Autism Society kept me from starving to death. They were the first autism organization that I met that did actually helpful direct action for an autistic person. I was 25 and they were the first.

How are these looking for you?

yellow rock climbing shoes

Or maybe you'd like these. These are my rock climbing shoes. I was wearing these when a teacher told me, straight up, that he refuses to teach autistic students, that I cannot appreciate the risk inherent in rock climbing, perhaps yoga would be more my speed. This teacher broke all sorts of privacy laws, and the school didn't care, because I am Autistic.

blue sparkly converse style sneakers

Are these more to your liking? These are the ones I was wearing when, again and again, supposedly good people-you know they're good because they will tell you they're good-assaulted me with flash cameras. Walk in their shoes! They want a picture! A flash picture! The ADA doesn't really exist.

I was completely confused and disoriented, not quite sure of my address, more than once because of this. These folks claimed again and again that they'd make access a thing and instead recruited a professional photographer to do their flashy dirty work. Portland Lindy Society, fuck yeah.

Should I walk in their shoes? Is the epilepsy and the autism contagious from dancing with me? I'm actually a good dancer. Take a spin in these shoes.

lime green converse style sneakers

Or try these. They're the shoes I wore to mourn at the ASAN Vigils both years now. I was wearing them when I heard about Alex Spourdalaikis. I have explained ableism in these shoes. The last time I was called "retard" to my face, I was wearing these shoes. It still hurts, just so you know. One of the many times a parent told me, to my face, that she'd have understood if my mother killed me, I was wearing these shoes.

That was at school.

The disability services people nearby shrugged and asked what I wanted them to do about it.

I want, just once, for the people who are supposed to be on our side to be on our side. That's all.

dingy grey sandals with pink trim. One has its unevenly worn sole showing

Or these. These are the ones I wear in the summer. These are the shoes I was wearing when I heard about Issy Stapleton.  These are the shoes I have been wearing to get shit done, because it doesn't stop needing doing just because the world sucks, while people are defending the attempted murder of Issy Stapleton.

These are the shoes I wear to go help other Autistic people because folks are too busy yelling about services for parents to see that we're being shoved into the cracks to rot. These are the shoes I wear to go do things so my mind doesn't crack under the hopelessness of it all, sometimes. These shoes are falling apart at the seams, but they're mine.

Maybe you should take them for a spin.

Friday, September 6, 2013

I could have been Issy Stapleton.

If you want to tell me I'm judgemental, go away. You aren't wanted here. I'm going to say harsh things about autism parents. You have a choice to go away, or to actually think about them. Being an asshat or sympathizing with abusers and murderers isn't an option.
I could have been Issy Stapleton. If I'd been 10, 15 years younger? Oh so easily could I have been Issy Stapleton. For a variety of factors had I been killed when I was 14 (so in 1997 or so) you'd never have heard my name. But had I been 14 in 2007? Oh yeah.

See, my mom got off on the attention that extremes got her. We were talented athletes-and she made sure everyone knew. She got off on having a child who placed at State and Nationals regularly in a very difficult sport. No, really. She'd drag me into her work with my little warmup suit and my trophies. It was embarrassing, because I knew the only reason she was doing it was to one up someone whose kid made the starting lineup or something.

But she also got off on saying profoundly negative things. Now, she didn't lie, exactly. But she fudged the truth. She would present stories so as to erase her role in them.

I keep seeing "Issy was violent" portrayed as an excuse. Thing is? My mom could have made the same case. I tossed her across the room more than once. I bit her more than a few times in my teens. Pulled her hair once or twice. Kicked. Knew better than to hit because my legs are stronger. But this was not  unprovoked. My mother's idea  of a good time was to provoke a meltdown, then get in my face, try to hold me down. It feels like suffocating, being in a prone restraint.

And I am stronger than my mom. I kicked her, pushed her off, to survive. She banged my head into the wall, so I pushed her off as hard as I could. She dislocated my shoulders, so I kicked her off. She had her hand and arm over my face, so I bit her. I was in fight or flight, and flight isn't an option when someone is trying to keep you there. Flight was my first choice. I was forced into fight, and to survive I had to win.

Are you still feeling sorry for my mom? Really? If you are your empathy is misplaced. And don't try to tell me for a second that she lost herself in the moment because she was overwhelmed. She never touched my face. Not once. Just parts of me that were covered with hair or clothing, or that could have been bruised other ways.

My mother was violent first. And I have no doubt that Kelli Stapleton also did things that made Issy feel trapped, where fight was the option because flight was made impossible.

While my mom had to call people or tell people in person that her life was hard and that her 90 pound daughter beat her up (neglecting the part where she started it. I have dents in my skull and a chronically subluxating shoulder from her), Kelli Stapleton had it so much easier. She could tape shit and youtube it, or type it up and post it to a blog for the whole world to see in minutes. She could reach more people in 10 minutes with her sob story than my mom could in 10 days.

If my mom had known she could get away with it? Be lionized for it even? She would have done the same thing. With thousands of people who she knew had her back? She would have been on it. Our garage would have been cleaned specifically for the purpose. She'd have found a way that I'd die and she'd survive (probably a method of poisoning. My 90 pounds to her 150 means that I'd be oh so slightly more susceptible, in theory) but yet get sympathy. If she knew hundreds of people would support her, that the media would support her, I have no doubt in my mind she would have gone for it.

There is no extreme like "I tried to kill my child and myself". That's even better than "My kid won a medal at the 2nd highest level at power tumbling nationals". It rolls off the tongue so much easier. People know what you are talking about. And for some reason, people just love parents who are supposedly driven to extremes.

My mother would have gleefully destroyed my privacy on a blog. When applauded for it, she would have gleefully kept pushing and pushing. And when she saw that the most attention and support goes to people who kill their children?

I would have been dead.

Issy Stapleton is one of us. I could have been her, oh so easily. Many of us could have.

Think about that before telling me not to judge. Not  only is judgement healthy, but I have every right to judge. I lived Issy's life, just before every parent had a blog. Those are the shoes I've walked in.

Thursday, September 5, 2013

To Issy Stapleton, with love.

Dear Issy,

I wish with all my heart that I wasn't writing to you in this circumstance. I wish I was writing to  you in a more joyful situation. I wish you had become known to me because you were exploring your Autistic identity and taking your rightful place in our community-a community that loves you for your very existence, a community that thinks you are whole and complete.

Unfortunately, that is nearly the complete opposite of the circumstances that are before us. You are in the hospital right now. Your mother tried to kill you. You know that, though. You know that you were doing the best you can with what you had and that it was never good enough.

I am writing to you because there are things you need to know, things that very few people are going to tell you, because they with their vaunted NT empathy can't manage to feel for you-only for your assailant.

Dearest Issy, it is not your fault. You did not make your mom do anything to you. It is her job, as a parent, to cope. Not to kill. It is not your fault that your mother chose to use you, yes use you, for pity and sympathy. It is not your fault she elected to try to kill you. That is not your fault at all. You deserved oh so much better. It is not  your fault that she demanded what you couldn't do. It is not your fault that she refused to acknowledge that you have weaknesses to go with your strengths. It is not your fault that you can't do the impossible. It was not fair or right or acceptable, even, to have that demanded of you.

Issy, I know that the media and your mom's friends are being absolutely awful and terrible about you. That isn't right. That isn't fair. It's revolting, it is bullying, it is trying to excuse the inexcusable. There is a whole community that has your back. We are outraged, indignant, on your side. Unquestioningly on your side. There is a large Autistic community and we care about you. We are standing for you, right now, and always. There are non autistic allies who are speaking for you too. We cannot undo what was done to you, as much as we'd love to, but we can declare that it was not ok.

We have logged many, many miles in your shoes. We know what that journey is. We won't let anyone forget.

I want to be able to tell you that everything will be ok. I cannot make that promise, and I respect you too much to lie to you. I can promise that we will do everything we can to make it ok. I can promise that we will not let you go undefended. This isn't enough, I know. We cannot fix it. But we are here for you. There is no justification for harming you, ever ever ever. I'm so sorry that the only promises I can make are really not enough. I am so sorry that you live in a world that tries to justify hurting you. Sorry and angry. Not angry at you. Angry at everything, ever, that tells us that you are less than. You are not less than anyone.

Dearest Issy, I have your back. We have your back. We love you just as you are. We know how love works. And doesn't work. Love doesn't work by suffocation. Love works by accepting and embracing a person as they are. We are going to do our best by you. You deserve it, and you have been failed by the very people whose job it is to do their best. We will not let that stand.

We may not be able to make everything be ok, but we are sure going to try.

With deep wells of love,