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.

More Consequences of Awareness

Kay.
So I'm taking a rock climbing class at the local community college. One of my good friends is taking it with me (for fun, and because, well, having a seizure at the top of a climb would be pretty horrendous if no one knew what was going on).

A few things to note right now:
a) I'm pretty much left handed for athletic purposes.
b) It takes me a few tries to reverse something to work for my left hand-ESPECIALLY if I look at it forward on or from anywhere but right next to the demonstrator.
c) I start displaying imminent frustration before I really notice it, especially when the lights are bad (they were).
d) On me, that looks like sideways hand flapping, gettingallthewordsoutatonce, being a bit more "don't touch me".

I get services from the disability office at school. I am not required to tell my instructors what I have, but it's not like it's a big secret, and I don't want autisticy stuff to be assumed to be seizure activity or vice versa, so everyone knows. No big deal. Or it shouldn't be.

But! My rock climbing teacher! He's *aware*! So we're doing our thing in class, learning to belay after we learn to make the knot. All the staff and instructor types are right handed. Apparently I'm the only left handed person they've ever met. So they tell me 15 different ways to do things, most of which amount to "be right handed".

I'm a bit frustrated with this, but fine. Whatever. I can climb like woah. I manage to not drop my friend for whom I am belaying-I was clipped into a ground anchor because of a significant size differential, but he did not, in fact, die. I also did not die while climbing. Well done, us.

Then this minty staff lady comes over and tells me to do the opposite of what the instructor told me. Oh...kay...

None of these people have The One True Truth of belaying, obviously. All the things I did did, in fact, work. But being told 3 different things in 5 minutes (again, most of which amount to "be right handed") is a bit much. I'm still clipped in to the ground anchor, ready to go, my hands flap a little.

"Unclip."

"uh, what"

"Unclip. There seems to be negative energy and emotions.:

"...what"

Blah blah unsafe blah blah not concentrating blah blah frustrated.

"Well, you told me one thing and she told me another and it's what I was doing so I'm processing".

"Unclip & we can have a discussion"

"...I want a cognitive interpreter..."

Seriously, I had no idea what I did. None. The first thing that came up in the 'discussion' is that as an autistic person I just operate a bit differently, and oh man did the condescension turn on.

No, I do not need little words. No, I am not going to hurt you (WHAT is it with instructors asking me that this week? I'm 120 pounds. I am about as intimidating as a rabbit). My friend, who actually knows me, trusts me to not drop him. Please, keep your distance. Please, stop acting like having me here is a big fucking hassle. "are you sure you can...do this?" Why yes, yes I am. Crazy, but I'm in pretty good shape.

I do, in fact, learn even! I'm good with the distance keeping, honestly. I'm not so good with you talking to my friend (who was cognitive interpreting) like I'm a recalcitrant child, like I cannot hear you. I am not ok with the ableist language to my classmates and the assumption I wouldn't get it. Yeah, 'people like me' do in fact have recreational activities.

Oh, people like me are even adults! I don't care how well meaning your statements are, when they're talking points out of PSAs about children, I hate you. No, I won't fucking take a 'time out'. I will go get food. I will go for a walk. Anyone who thinks 'time out' is acceptable language to use with a grown woman is too far out of realityland for me to listen to, ever, but yes, I do in fact remove myself from situations.

Oh. The catalyst for his freak out? Flapping is BAD. No. Seriously. I thought he was saying it to cover for something even more ridiculous, friend said he was dead serious. Awareness tells him so!

Thanks, 'awareness'! I need to have my coping mechanisms demonized! It makes my whole damn day! I need to be treated like a kindergartener by a community college PE teacher! That made my whole week! And, shit! Having half my teachers afraid of me, THAT makes my whole year! Because we all know that all autistic people are Manchurian Candidates or something, just WAITING to completely lose their shit and destroy everything in our paths!

Except we aren't. If this is 'awareness', ignorance really is bliss.

Why I am ritually burning my favorite shirt.

I have a shirt that I love. It fits me well. It says "Schrodinger's cat is dead" on the front, and I'm sure you can figure out what the back says.

I love this shirt probably more than any other article of clothing I've ever had (except maybe the Bambi dress I had from ages 7-9 or so). It looks good, it feels good, I get compliments when I wear it.

So why am I burning it?

Autism Speaks, that's why.

They have cornered the market on getting donations. It sucks. It's unethical, given their fund distribution structure. It's even more unethical, given that they are spreading the tragedy model of autism and the whole "autistic people who have an opinion on autism aren't really autistic---until we need to count them for our scare numbers." It is un-fucking-acceptable.

Step in at my doctor's office. Whatever. I can write to them, they know more about autism than "THINK ABOUT THE CHILDREN!!!".

But this, this is an invasion. Those there are MY PEOPLE. Or I thought ThinkGeek was my people.

Apparently I was wrong. By wearing a TG shirt I am advertising for...well, ThinkGeek.

I am not advertising for anyone who donates to an unethical group that wants to ignore and exterminate me, erase my existence and experience, that plagiarizes me (bonus points for trying to go over my head to an NT for use of a segment on self advocacy. FAIL FOREVER!), that has supporters who threaten me physically, that has private jets and ridiculous offices when so many autistic adults (oh wait, we don't exist) and so many families are barely getting by. I am not advertising for anyone who thinks that's a remotely acceptable group to donate to.

I suspect ThinkGeek really shat where they eat with this one-they likely have an awful lot of autistic customers who share my sentiments.

So, I will be burning my Schrodinger's Cat shirt, a Firefly shirt, a Pi By Numbers shirt, and my ThinkGeek catalog. "You shouldn't exist" is the message sent by donating to Autism Speaks, and the corollary is "we don't want your money."

Wish granted. Not another dime.

Be aware of THIS

This was my 2008 Autism Awareness Month post.

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

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

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

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

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

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

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

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

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

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

Alternative Autism Awareness

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

Autism Awareness Month?

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

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

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

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

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

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

Autism Speaks: SHUT UP AND LISTEN

I mean you. Right now.

I protested you. You know damn well I protested you. It's not a secret. I wore a shirt that said "Celebrate Neurodiversity", carried a sign that says "Autism Speaks does not speak for me" with your ugly blue puzzle piece all crossed out, talked to parents about why you are so damn toxic. Does that look like a person who wants anything to do with you?

And then you go and quote me?? In your transition kit??? AND YOU GET THE ATTRIBUTION WRONG??? No, I was not fucking diagnosed at 18. I found out at 18 I'd been diagnosed for-freaking-ever. There's a difference. A substantial one. But hey, any misleading thing to try to shut up autistic adults, right?

Oh and there's the whole "Not asking" thing. I know, it was a publicly available work, but it would have been ethical to ask if you could use it, if the context was correct, if I wanted in any way to be associated with you (which I don't. Except protesting you. I'm ok with that, no matter how many of your supporters tell me to go play in traffic--3 was the count this year. Other obscenities rate much higher).

Shut up and listen: this is more talking about us without us. You can't yank a quote--even a good quote--and get the details about that person wrong and just use it when you know damn well they dislike you and all you stand for intensely. That isn't involving autistics, if that's your excuse. That's more of the same thing we've been getting for years, acknowledging us only when convenient.

Shut the hell up and listen.