Guest Post: Why We Fear for Your Kids

This is another guest post from the always insightful & delightful Gen Eric:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

edited to add a couple that I forgot

BADD 2012-Update on the fights we fight from last year. It's long. Read it anyway.

; The rest of the BADD posts can be found here

Last year I wrote a bit about a couple of flagrant ADA violations I've been dealing with. People seem to have it in their heads that since the ADA is a thing, ableism is alldone & that all you have to do is ask nicely for access needs that aren't met and people will fall over themselves to fit it & suing for ADA violations is unfair and blowing things out of proportion and mean and unnecessary and easy and something only assholes do. I can think of about 10,000 things this past year that I'd prefer to have done with the time & energy spent on an ADA suit. Too bad that no one got the memo that ableism is alldone, huh?

 So we'll start with school. My spirit of confidentiality and assumptions of good faith are fresh out, so I'm going to be naming names here. My goodwill & willingness to believe people who say they're trying to do the right thing as been abused to the breaking point; if they want it handled internally that ship has sailed & they don't get what they want.

Spring term of 2011 a friend & I signed up for an Intro to Rock Climbing class at Portland Community College. As regular readers/facebook friends/etc know, I am a former high level gymnast and current gymnastics coach. Climbing plays on my strengths-high strength to weight ratio, flexibility, love of heights. My disability cooties are pretty much irrelevant in such an activity-nothing is flashing at me, flying at me, or yelling at me.

I always, always contact my instructors before the term starts to discuss my accommodations form. I have a sheet with pictures of my brain that explains epilepsy in addition to the school-provided approved accommodation form. Since people know exactly nothing factual about epilepsy, I prefer to discuss this face to face before the term starts and disclose that part of my neurological excitingess to head off egregious misunderstandings.

 On 14 March 2011, I emailed Brad Martin of PCC Rock Creek, offering a meeting. He declined & requested an explanation over email. So I told him, in these words, "I have a few neurological quirks, the most relevant of which is epilepsy". Radio silence for a week, until I emailed him back and asked if he had any questions (my exact words were something along the lines of "given how people react to the e-word, your silence is ominous"), at which point he wrote back and said he was sure he could handle that in class. So, keep that in mind as you read on. I gave the man a chance to freak out, a chance to express fears and have them assuaged, or not. It would suck a bit, it'd be questionable (well, illegal, but I've internalized enough ableism to know damn well how people react), but I could at least understand it. Being concerned about the possibility, even remote, of a student losing consciousness at the top of a rock wall, that's something I can understand.

The first day of class was held in a classroom rather than at a climbing facility, since it was a day of paperwork. Mr Martin took a copy of my Disability Service form, snapped at me for using a word he didn't know (I...talk around concepts. Sometimes I sound like I'm vomiting a thesaurus. Language and I have a tenuous relationship), we learned to tie a couple knots, and home we went.

The next week was the beginning of Autism Fearmongering Month, & oh how fitting that was. We met at a local rock climbing facility, ClubSport, where we were fitted for loaner shoes & harnesses. Mr Martin was very late (a pattern that never resolved), & when he finally arrived he tried to review the knots-I say tried because I know damn well that at least half the class learned from Anyone-who-isn't-Brad-and then we were set to learning to belay.

Belaying is how you keep your climbing partner from falling to their doom, & by extension how you lower them to the ground, rather than doom, when they are done with their ascent. At Clubsport they already have a rope set over a point at the top of the route. The climber ties one end into their harness with a certain set of knots. At the other end is a device called a gris-gris, which massively reduces the strength needed to catch someone because if a climber falls suddenly, the device catches and stops the rope going through. So what a gris-gris means, basically, is that it is nigh impossible to drop someone unless you hang out with it open or forget to take up any slack or, um, intentionally drop them. This is relevant, I swear.

My friend & I were getting the hang of belaying & tying in at about the same pace as everyone else. I had to figure out how to flipflop some instructions, since I am athletically left handed & apparently Brad had never heard of such devilry before. That takes some time, but we're settling in, climbing some rocks, whatever, and a wild asshat appears!

My friend is about 3/4 the way up a rock and I'm dealing with the rope being a bit...well, it's a rope. Ropes get kinked and stuff. I flap my hand a moment. OH. NOES. KITTENS. KILLED. Not the hand that is supposed to be on the ropes at all times-the OTHER hand.

 As I said, a wild asshat appeared. Unclip, he says. Um, no. I am fastened to the rope holding my friend from crashing to the ground, and also clipped to the ground because ground anchors make up for an 80 pound weight difference. Brad stood over me and yelled at me to unclip again. I'm 12 inches shorter and a good 100 pounds or more lighter than this guy, and he's standing over me in his giant abled white man way hollering at me. Funny thing! Yelling at people right in their faces does not do wonderful things for their coping skills! Even if they're NT!

So I'm all flappy hyperventilatey (which is a common reaction to having a giant man yell in one's face) & I get my friend down from the wall & Brad is yelling about bad vibes. Absolutely. Seriously. Talking about bad energy. Believe what you will, I don't really care, but don't tell me that my differences, like, disturb the flow of chi through your meridians. I don't give a shit about your meridians, especially if you're yelling at me for
a) flapping
b) being left handed.
So, with the yelling and the look at me, what words fall out of my mouth? "I'm autistic". And then the shitstorm began.

Brad demanded a meeting right then and there. Suddenly he couldn't deal with anything. He wanted me to look at him. No, fuck off. He wanted me to use my words. No, fuck off, you don't understand my words anyway. He wanted me to take a time-out. You do not tell an adult to take a time-out, may your innards be infested with all the nematodes in and around the Willamette!

I wasn't profane though. I was quiet. Very quiet. Worrisomely quiet, if you know me. My friend & climbing partner & cognitive interpreter was running some interference for me, but this guy was hellbent on yelling at me some more.

The next week I got an email from Brad demanding a phone conversation, and thus the unwinnable situation started. I don't do phone, because my auditory processing is utter shit. This becomes abundantly clear very quickly if I try to talk on the phone. But saying I have shit auditory processing-if I cannot see you & have no real context I catch like 50%-is also something that can be used against me.

I declined a phone call & so he demanded another meeting, in which he was condescending & I was very very quiet. Gems from this meeting include "you can't tell me what to say!" (because telling non autistic students to use their words is smiled upon?) and "I need you to be the best student you can be for me", as though I were going to be obstinate just because, and that it was unreasonable to ask him to not stand directly in front of me with his back to me while demonstrating knots (wait what? Am I supposed to see through him? Apparently). The real winner of that day, though, was "I don't think you can understand the risks inherent in rock climbing. Perhaps yoga would be more your speed".

Aside from being extremely condescending, this betrays a complete lack of understanding of what I do. I assess physical risk. For money. Without time to think about it. But Autism Speaks says that autistic people are dangerous perpetual children, so we must be!

 Brad was pretty pissed off that day anyway. My friend & I had gotten to ClubSport early to do our belay certification tests with the staff of the climbing facility. We were the first 2 people in our class safety certified. I asked the power that was in the climbing center, Bob, what to do with the belay device, since apparently being left handed was a big effing deal. "Put it on backwards" he said "and say 'lefty' if anyone says anything, which they probably won't".

This day was the last day that Brad made any effort whatsoever to hide his desire to bully me out of the class. He alternated being in my personal space & pretending my friend and I didn't exist. I went home that day and emailed Harry Zweben, my Disability Services counselor at PCC, & told him that Brad was trying to bully me out of the class. Harry didn't believe me. If he has been paying any attention at all over the past year, he does now.

We only went to one more class. At this one, Brad came over to where we were climbing, an area called the "chimney", which had faces on 2-3 sides the whole way up, pretended to check out the face of the wall, & then quietly gathered the rest of our class while I was halfway up the wall in order to start.

Let me say that again. PCC sure doesn't acknowledge that it's remotely unacceptable:

Brad quietly gathered the rest of our class while I was halfway up the wall in order to start without us.

 That day we talked to Bob & the other kid, Ryan I think, who worked in the climbing center at ClubSport. Bob-who knows what he is talking about-said that we were progressing as fast as or faster than the rest of our class, and that we were perfectly safe. When I asked if Brad had asked any weird questions about disabled people climbing, the kid who I think is named Ryan accidentally answered in the affirmative with "no, nothing about physical disabilities...", & Bob said that he had told him to keep an eye on me because I am 'quirky'.

So there's a HIPPA violation all over the place. Or the school equivalent of HIPPA. I know there is one.

 So, another email to Harry, who encouraged me to talk it out with the instructor. Because that was going sooooo well. I also placed a call to Claire Oliveros, the Affirmative Action Officer of PCC.

 At a very late hour on the next Wed, so late it was nearly Thursday, I got an email from Narce Rodriguez, a dean from PCC, telling me that I needed to meet with a dean before returning to class-which was scheduled for Friday. Ok, fine. You have Friday morning. That's your choice, Ms Rodriguez, no other options.

That Friday morning, my climbing partner/cognitive interpreter/friend & I met with Heather Lang, who is a dean at PCC Sylvania, and Angelina Davis, a Disability Services person at PCC Sylvania. It's a good thing my friend came with me, since the dean and the DS person seemed to basically be there to tell me that my existence was unacceptable. Only they were doing so with content-free speech, the way that allistic people say words that mean nothing but somehow you're supposed to infer meaning anyway. It's all buzzwords. All of it!

Neither of them would admit that discrimination is illegal. They denied that ableism defies the school's antidiscrimination policy. It does.

Here's the thing: I have copies of emails sent through the Portland Community College internal system, from all of these people. By this time Brad had said that he "will not accommodate autism", that he did not feel he should have to, and saying that since he hadn't gotten a letter for the autism stuff he didn't have to not be a tool.

It does not work that way. I don't have to tell instructors a damn thing about why I get services, just that I get services.

 At this point, no one has been able to tell me what Brad's problem is, and I haven't yet had access to the emails (getting there. That was a fun pile of shit to wade through...). Apparently he has a "safety concern". "Safety concern" is a broad-ass category. You need to be more specific than that.

Over a year later, I still don't know what this so called safety concern is-because it's fictional. But allow me to continue.

Heather Lang and Angelina Davis-who I will never work with again, ever-decided that I should next meet with Brad. He works for PCC, he isn't a bully!

Except he is. The next week was a whole lot of Narce emailing me demanding a meeting at the time that rock climbing was supposed to start and me saying no, because Brad had said he cannot be there on time for class, so obviously he isn't going to be there for a meeting. This went on and on and on and on and on.

During that week I talked to a lawyer who specializes in disability law, IDEA & ADA. He told me to file with DoJ, that it was definitely not ok even though they were careful in the emails to not be egregiously blatant with their bigotry, & that the school was required to provide a copy of my records if I asked for them, and they only had 60 days to do it.

First thing I did with that information: Email Rebecca Mathern from the records people at PCC for my record. This was late April. I did not see my records until late July.

Back to the meeting BS. Narce was very late. She sent 2 people whose names I still am not sure of...Ruth McKenna, Alejandra something, then there was her & there was Brad, miraculously only 20 minutes late. They were pissed off that my friend & my trusty tape recorder were there. They also proceeded to ignore him for another half hour, in an attempt to get me to go up the stairs to where they were.

It's a little thing, but we were going to have this meeting on the ground floor, sitting on the floor, where I was more comfortable. I insisted on it. I did not want to be there. I find all these people utterly detestable. They and their nice clothes are going to have to sit on the floor.

 They, again, were mad that my friend was there. What they really wanted was a 4 on 1 bully and bash fest. They were mad about the tape recorder and declined to have a picture taken. Four on one. That's excellent. (this is hard to write about, what with it being exactly a year ago. BADD 2011: I was going through this shit the first time).

Apparently Brad had a list of bullet points about why he didn't want me in his class. They included "Safety issue NOS", using a cognitive interpreter when being yelled at by a man twice my size, not being an expert belayer, and he doesn't believe I understand things because I don't look at him. That was mentioned in his emails to everyone as well, including Disability Services people who should know better. Eye contact and comprehension: not really correlated at all. It just went downhill from there.

Brad took being called an ableist as a compliment. Narce called me verbally abusive every time I tried to speak up, and she yelled at Brad to "not answer that" when I asked who they'd told I'm autistic. No actual answers, lots of tone argument. Ruth McKenna seemed to think it was appropriate to tell me that I "seem to do very well". Yes, I am autistic and therefore tying my shoes is fucking magical, I know.

My demands, which I made quite clear, are that I got a drop, my friend got a drop, that we got our money back, and that they bring in an autistic person to do autism training since clearly no one at PCC knows anything about autism that they've not been told by Autism Speaks.

Let's recap for a moment here: an ableist man, afraid of autism because of awareness, bullied a former high level athlete out of his class because he didn't want to be around her cooties. That's seriously the only thing I can think of, because there's nothing solid to stand on there. The flight to "I am not comfortable with this" left about the time I got the "I can deal with epilepsy" email.

My friend and I spent the summer at PCC an average of once a week, meeting with everyone we could about this. We got sent to several dozen people, all who said it wasn't their problem. The Disability Services people obviously aren't there for disabled students. The deans were all not helpful, or were even actively part of the problem. The counselorperson called me political like it's a bad thing (oh, honey, you should read my blog! You have NO. IDEA).

And still I waited for Claire Oliveros to do the investigation she was mandated to do in April when I called. And still I waited for my records from Rebecca Mathern.

The records came first. They were infuriating. They're still infuriating. Yes, I am uncooperative--when you are telling me lies. When you are telling me that my very existence is dangerous because it weirds out a dude, when you are trying to tell me I have to meet with this dude at a time he said he is unavailable, I am not going to do what you want. I've earned a bit of stubbornness. When you are saying that you don't want to make very simple adjustments-treating students like adults is radical!-because you are afraid of their brain configuration, and hide behind a nebulous "safety concern", you and your associates have more than earned my contempt.

Shortly after I got my record-several weeks overdue-a new friend/acquaintence helped me with the official DoJ filing. ASAN members had been telling me to file for weeks, my friend had been saying to for weeks, but newfriendperson lent me the executive function to get shit done (ok, she did most of the work. I just told the story).

I met with a lawyer from the Department of Justice on a rainy, chilly day. DoJ has copies of the records. DoJ said they have to allow PCC to rectify the situation, but given that they have a known bigot, one Brad Martin, teaching courses still, I am not hopeful.

In November, 7 months after I initially talked to Claire Oliveros, we finally met so she could finally start her investigation. Conveniently, this is just before all the gluttony holidays, so she had an excuse to, like everyone at PCC, be late on it. There is not a single thing I asked of them that they did in less than twice the legally allotted time.

Again, I told the story. New friendperson came with, as did my climbing partner friend. We demonstrated what I meant by yelling in my face. She talked in lots of content free speech. I don't do content free speech.

At the end of the meeting she said she'd need to conduct an investigation-half a year apparently wasn't enough time-and that until that time, she wanted maintained a "spirit of confidentiality", for me to "let it go, it's in the right hands now". Patronizing bullshit. And, my spirit of confidentiality died a while ago.

This April, later than the 60 days allotted, a year after this shit started, I finally got the results of their investigation. "PCC finds no wrongdoing because the instructor cited a safety issue". Still no elaboration on what the safety issue is. They've had a whole year to make shit up. They have not come up with, in twelve months, a plausible lie. Because the safety issue is FICTION. It does not exist. The only safety issue involved is that involved with allowing ableists to make decisions that actually effect people.

I am still working with Department of Justice. I am appealing PCC's internal decision, since apparently they need to review their nondiscrimination policy again. And I am making sure that anyone and everyone knows exactly what sort of shit they put people through.  

Writing this was extremely difficult. I will probably insert missing details as they jump to my head. I did this in one sitting because it needed to be done

Awareness kills.

Yesterday they released the news of another child killed because of the ableism that the rhetoric of tragedy fosters.

Daniel Corby, age 4, was drowned by his mother in San Diego. Already people, including the media, are leaping to say that autism is so hard, no wonder she went over the edge. No. No. No. You don't say that. There is no excuse to kill people.

And this is what awareness does. The dominant narrative is that of hopelessness. The dominant narrative is of isolation and despair. The dominant narrative is that we are perpetual burdens, never to grow or be anything but 100% dependent. The dominant narrative is of tragically unhappy lives.

Awareness is wrong. We are, on the whole, not unhappy. We do not need the terror around how many of us there are. We do not benefit in any way from information that makes us sound like scary, alien beings. And we do not benefit from being seen as less than human, as things to be endured rather than people to be embrace.

Daniel could have had any of a number of futures. Now he has none of them. This is unacceptable.

Stop killing us.

Survey for a friend of mine

Friend? Friendly acquaintence? Person who I do not hate and to my knowledge does not hate me? Whatever.

It's a survey about religious experience or lack thereof for autistics.

Back to your regularly scheduled depressing shit shortly.

ETA: THE ACTUAL LINK. Wow, am I a champion. http://www.surveymonkey.com/s/WTL6YQZ

Autism & Child Abuse: Both for April. Oh IRONY.

[Trigger warning: fairly graphic description of physical, emotional, sexual abuse.]

April is "let's make autistics hate themselves!" month. It's also child abuse awareness month, though you don't hear much about that. They talk all about the devastation wreaked by autism, but you barely hear anything at all about child abuse. That's fucked up, in case you were wondering.

There have been a couple murders of disabled people recently, murders by family, and the general caregiver reaction seems to be to pull into little self congratulatory circles and say that it can't be true, it must be an aberration, they and no one they know would do that. Parents of autistic kids are fucking saints.

Let me tell you, that is not the case. My parents are not saints, and my story is middle of the road based on what a lot of autistic people I know have said to me. Parents of autistic kids want us to shut up and not say this, they want to erase our stories, but that does no one any good. Trying to erase our experiences helps no one, even if it does make parents feel better for a few days. Don't dare step that close to abuse apologism, it is not acceptable.

Now I am going to tell you about some of the things my parents did when I was growing up. And yes, if you empathize with them I absolutely believe you are a horrible person.

So let's start with a brief description of my family structure, because it's kind of effed up: I have a mother, and my half-siblings' dad is on my birth certificate. They got divorced, I have a stepmom via my not-really-dad, and am on my second or third stepdad on my dad's side. Annnnd I have a biological father. Annnnnd a lot of siblings. Got all that?

We'll start by talking about when I was young. Both my mom and not-really-dad were spankers, by which I mean "kid, you have pissed me off and I am going to vent my spleen on your bony little ass," and, in my mom's case "also your face because your ass is really fucking bony." Offenses that got me hit until their hands hurt include such awful things as flapping, not being able to stop giggling, zoning out (both of which can be manifestations of seizure activity), arguing, and not understanding a statement or direction. That's right, these people were hitting a kid with language comprehension delays for not comprehending language. And I do mean hitting. Hard. Bruise leaving. I got a black eye and a cut across my cheek once from my mom; I was about 6 or so. The offense? Freaking out because shampoo got in my eye.

As things got more stressful and they divorced, these people got worse. My mother would absolutely lose her shit and hit me for no reason. She would scream and scream and scream at me, usually while I was stuck in the car with her. Then when I covered my ears or cried, she'd hit me and pull my hair. She did this once and then chased me around with a camera to try to get pictures of the ensuing meltdown, threatening to send them to everyone in school.

Go read that again. That's emotional abuse on top of physical. Contrary to what Autism Speaks thinks is a fucking awesome idea, triggering meltdowns intentionally to document it to show people is fucking emotional abuse.

But this was a thing she did frequently. She'd be pissed off about one thing or another, looking for a fight, and I wasn't exactly in tune enough to avoid her. Unlike my siblings I didn't have friends whose houses I could vanish to for days at a time, so I was stuck with her. She'd want a fight and she'd pick and pick, she'd file her nails in my ears-this is not a sound I can tolerate on the same bus as me, much less right next to my ears-and she'd start calling me disrespectful and yelling and demanding an explanation when I covered my ears. No explanation was ever ok, and she'd keep yelling and yelling until I lost my shit, then she'd keep yelling. Or she'd touch me and it'd startle me and that'd be the most offensive thing in the world, again with the yelling. Or she'd try to have a conversation, but it'd be about why I didn't have friends or couldn't be normal or wasn't girlier or whatever. Then no matter what my answer had a "tone" or my face had a "snotty expression." Nothing I could do was right.

Regardless of the method she used, the result was always a meltdown that would.not.end. She wouldn't back off no matter how I asked, & I wasn't big enough or strong enough to shut the door & keep it closed until I was about 14. She'd keep yelling and poking and trying to argue until I was completely nonverbal, biting myself, and too exhausted to keep crying. Then she'd try to hug me and all I wanted was for her to go. away. but she wouldn't. And she'd tell me it was love and she just wanted to "help me".

A favorite technique during the meltdown provocation procedure was to throw absolutely terrifying threats on top of the sensory poking and the demanding the impossible. The first time she threatened to have me put in foster care I was 7 years old. I believe it was over leaving the room because she was smoking and filing her nails (which she told me she loved more than me when I was 13), but that could be inaccurate. So many minor offenses got this treatment. As I got older she started threatening to have me locked up in a mental ward. I am deathly, deathly terrified of confinement and always have been. My mental images of both foster care and mental hospitals come from a combination of my mother's words and Lifetime television, which did not help the abject terror-and abject terror is not exactly conducive to calming down. My mother later leveraged this fear by instigating meltdowns intentionally-she always did love that game-and then calling police saying she was afraid of me. Now is a possibly relevant time to mention that when I last saw her, she had 4 inches and at least 50 pounds on me. Physically imposing, I am not, and lashing out at people who are not directly touching me is not a thing I ever did.

Ok, so now an interlude to talk about my not-really-dad and his new wife. I still went to visitation over there because we have the same last name and, to his credit, he was pretty awesome until he got remarried. His new wife resented the hell out me though-I still don't know why, really; it's not my fault the guy signed the birth certificate knowing damn well I'm not his.

My not-exactly-stepmom has really delicate little feelings. I have never been the most tactful of souls, and frankly, a grown woman allowing an 11 year old to upset her enough to storm upstairs until said 11 year old apologizes is not the most mature of things. The unpredictability & unreasonably high standards for knowing what would set her off were one thing.

The not allowing me to eat and dragging me antiquing is quite another. I'm not talking "not allowing junky snacks". I'm talking "over 24 hours without food." I'm talking "if you were that hungry you would have apologized for hurting Diane's feelings." It does not work that way. Trying to starve an apology out of a 12 year old is unacceptable. I had a seizure in the antique store-one of very few tonic clonics I've had aside from The Year Of The Seizure. I woke up to being yelled at for being an attention seeking little hobag. Again, I was TWELVE.

Shortly after that her son stuck spitballs on my bedroom door and he blamed me (which makes no sense) so I had to sit in the living room an entire weekend, except breaks every 6 hours to go to the bathroom. Not long after that I hurt her feelings again and she threw a corncob and a glass of wine at me. Another few weeks, and her son was spreading awful shit about me around the neighborhood, he denied it, and then I was again relegated to a chair in the livingroom for...I don't even know what the offense was. Just that apparently there was one.

The last time I went over there I was 14 years old. Stepmonster's sister and nephews were in town. A stepbrother, a nephew, a sister and I were down in the basement by the computer. My stepbrother told my stepcousin (well, semistep people but whatever) that it was really fun to see how far my arm would twist behind my back-this is nothing that I ever let anyone do, ever. So my semistepcousin twisted it, I said nonostopstop, and my semistepbrother told him to twist it further. My arm popped out of my socket.

All the way out of the socket.

Like any child who thinks their parents aren't utter sacks of shit would do, I ran upstairs, arm flopping, totally screaming-I have a high pain threshold, but dislocations that don't immediately reduce hurt like hell. My semistepmother and her sister started yelling at me for being a big baby and making a scene.

My arm was hanging entirely out of its socket. A scene was utterly appropriate.

I begged my not really dad to take me to the hospital to get it fixed. He refused. I begged him to take me home. Again, he refused. I walked 15 miles from his house to my mom's house, in the rain, on the highway, with my dominant arm out of socket.

My mother couldn't take me to the doctor until the next day because she was already drunk. To this day it has some laxity beyond what my other Ehlers-Danlosy joints have.

Now we're back to mom's house. As you may recall, my mom was a hitter. Most people who hit their kids stop when their children get big, strong, and/or bold enough to hit back. But not my mother!

The first time I fought back, I was maybe 12. I didn't even do anything that violent back; she was going to slap me for something and I caught her arm. This is the day I got my first dent in my skull. She was so enraged that I caught her arm that she threw me at my bed-at that point there was nearly a 100 pound weight difference-and jumped on top of me. She banged my head into the metal bedframe multiple times and punched me repeatedly. This is the first time I feared for my life at the hands of my mother.

About that time my stepdad started sexually abusing me as well. He had always been a yeller, which terrified me, but there is no terror like a giant coming to the night to try to make you respect him by using his penis as a weapon. I still have the knife I used to defend myself under my pillow, & carry three physical scars...one for screaming, one for fighting, one for biting.

He wasn't above physical intimidation in broad daylight either. On my 16th birthday I had to jump out the window to get to school because he had his 250 pounds planted against my door, keeping me inside, because I wouldn't bring up my laundry before school started. That was the day I knew my mom knew he was sexually abusing me-she said she did not want to hear anything bad about him unless he was stark naked about to rape me. And then I knew she knew.

But back to my mother. As I got older, and stronger, she wanted me weak. She had always given my siblings lunch money, but I had to earn mine through babysitting. Rarely did I eat school lunch from about 13 on; the option of taking a lunch doesn't work when there's nothing to take. My gymnastics coaches and some teachers took to feeding me, because I drop weight very quickly indeed. By this point most of my siblings were living with their dad or in their own places, so they didn't suffer the no-food-but-Hot-Pockets years.

My mother continued to pick fights, and continued to get physical. She learned restraint for work and thought it was a great idea to pick a fight with me to practice. Let me tell you first hand, it is impossible to breathe. Those are not safe techniques. They are completely not conducive to calming the fuck down. Putting your teenage daughter in a baskethold and dislocating both her shoulders in the process is abuse. Pulling handfuls of her hair out is abuse. Digging a knee into her back is abuse. I feared for my life from the time I was 12 on because of how unpredictable and how physical my mother was willing to be, and over things like sensory issues.

They terrorized me physically, emotionally, and sexually, all while telling me they loved me. They used systems, including the medical and law enforcement systems, to keep me in a state of constant terror. There are other things that aren't on here, there are details I cannot deal with writing out.

Do not dare tell me that parents cannot be monsters. I lived with monsters. I am not a monster for making you think about it. They are monsters for doing it, and anyone who tries to excuse it is as well.

Do not erase my story. Don't fucking dare say this shit doesn't happen. It happens every day.

The words said for George.

My angry post was for me. Not for anyone else.

But this was what I wrote for George. It is, after all, about him. Kathryn Hedges graciously read it for me at the vigil in California:

I hate writing for murdered people. It does no good. They're still dead, and people always try to make what I say all about themselves & then they get all mad and hateful at me. But it isn't about them. And it isn't about me, either. It's about the person who is dead but shouldn't be.

This time, it's about George, a pleasant 22 year old man who will never see 23. Before George, it was Katie. It was Christopher. It was Ulysses. It was 100s of autistics before them, know and unknown to me.

These murders are not mercy killings. They are murders, and I am 100% confident in saying that no parent who truly loves their child can kill them. Love does not work that way.

Those of you who are not autistic may be inclined to sympathize with George's murderer. Maybe what you know about autism is tragedy-and-terror style awareness, all about devastation and loss. Maybe you know her, maybe you liked her. Maybe she was your neighbour. Maybe you can't wrap your head around the reality that you had coffee with a murderer. Maybe trying to find mitigating factors makes it easier to integrate that you know someone who killed her son.

Those of you who are autistic are probably feeling more like what I feel-saddened that yet another of our number was killed. Maybe, like me, you are disgusted at the race to exonerate the murderer in the media. And, if you are like me, you are terrified that everyone is blaming lack of services, stress, everything but “HIS MOTHER SHOT HIM” for George's death.

I hate writing for murdered people. Again and again and again I have to defend the very right of the victim to be treated as a human being in all reports, for his very personhood and the personhood of myself and those I hold dear. This stuff shouldn't need saying. My outrage should be the norm, not the exception.

The tragedy here is not autism. The tragedy here is that George, like countless autistics before him, was murdered. The tragedy is that people feel more for his killer than they do for him.