Michael John Carly, you are wrong.

I am addressing an autistic autism parent blogger who made a post to Huffington Post a short while ago. In his post, he argues, essentially, that “both sides” of the autism debate are just as bad as each other, and that we should stop being emotional in our arguments because it’s hard to be eloquent while emotional. He commits the fallacy of the golden mean, and also severely misrepresents the autistic community.

Michael John Carly, you are wrong about us. We do not want to “minimize” the suffering of parents of autistic kids. We want them to stop using their suffering as an excuse to paint autistic people  as less-than-human.

We are not all “articulate, verbal spectrumites” – many of our major voices, such as Amelia Baggs, are not able to communicate through speech and instead communicate through AAC. I am usually able to talk, and often at length, but usually not articulately, and often not without being a walking wall of words. I monolog, is what I’m saying. Back-and-forth of typical conversation is hard for me, and the difficulty rises exponentially with the number of people I’m trying to have a back-and-forth dialog with. Writing, for me, is a far more reliable communication method than trying to string together sentences in the heat of the moment while fighting both distraction from navigating body language, manners, etc and my speech impediments.

We do not say that Autism Speaks is “complicit” in murders – and, in fact, ASAN has never, to my knowledge, taken that position. We say, instead, that their hateful rhetoric creates an environment where murders of autistic kids are inevitable – and where, when such murders are committed, more sympathy is given to the murderer than to their victim. Consider the response to the attempted murder of Isabelle Stapleton. News outlets reported this act as a “desperate act,” portraying her mother as a loving woman. Kelli Stapleton became a media darling, even getting an hour-long special on the Doctor Phil show, where most of mainstream media painted the act as Isabelle’s fault for being so difficult, not her mother’s fault for deceiving her, disabling her, and trying to kill her. In fact, the news media focused so much on sympathizing with Kelli Stapleton, that, as of this writing, a Google Search for news about “Issy Stapleton” has a 15:3 ratio in favor of stories focusing on Kelli, and not her victim. To my recollection, roughly 80% of news stories focused on sympathy for Kelli, and of the remaining 20% or so, vanishingly few focused on who Isabelle is as a person, but rather on what Kelli did. We do not say that these murders are Autism Speaks’s acts. We instead criticize them for their role creating a culture wherein it’s more acceptable to give sympathy to the committer of the worst sort of child abuse than to their child, if their child is autistic.

We do not say or argue that parents and families should be without support, as you’ve implied in your piece. That is simply wrong. Autistic people and our allies set up organizations and projects like We Are Like Your Child and Parenting Autistic Children With Love And Acceptance, to try to help those parents in a way that does not demonize and degrade their child. We do not have a problem with “support” for parents, we have a problem with supports coming at the expense of the health and wellbeing of their child.

And, yes, we do fight. We fight against anti-vax, which will make our world more dangerous and far  less healthy for everyone. We fight against portrayals of us as less-than-human, a public view that leads directly to “therapies” that have been condemned as torture, and, yes, we criticize Autism Speaks for their partnership with a place that has been condemned for committing torture, after that torture was publicly revealed. We think it’s wrong for them to partner with and support organizations that commit torture. And so should any reasonable person. This public view also leads to the false belief that autistic people don’t feel pain, and that even if we do, it doesn’t cause us harm.

Autism speaks contributes to those beliefs by describing autistic people as natural disasters, portraying us as demon-possessed, claiming that we cause marriage failure, as “missing,” as merely existing but not truly alive. Autism Speaks portrays autism – and autistic people – as a dire crisis in need of resolution at any cost. Call in the National Guard! The Army! The Navy! We have a crisis!

This cure-at-any-cost mentality is what leads to torture in the name of therapy at the Judge Rotenberg Center, to hopefully well-meaning parents forcing their children to drink bleach and have bleach enemas with Miracle Mineral Solution, and to people trying actively to chuck the single most important public health development in the history of humankind out the window because one corrupt, since struck off the medical register ex-doctor once released an extremely poorly designed case series with the implication that a vaccine may possibly cause autism.

And, yes, Michael John Carly, I will fight against people who call me a tsunami, who portray my brain configuration as a demon, who portray me as not human, who blame their relationship problems on me, who say I’m missing and not living. Because those beliefs are dangerous. Those beliefs lead directly to torturing kids in the name of “treatment” and to giving more sympathy to a person who tried to kill her child than to her child abuse victim.  And I – and any other moral and reasonable person – will fight against those things.

The autistic community is not part of the problem, here, Michael John Carly. The people who dehumanize and degrade us are.

Why I “interfere”

I recently read an article by an autism parent blogger who railed against autistic advocates and asked how we dared “interfere” with his parenting by protesting ABA or telling our experiences or questioning the cure narrative. I don’t want to link to that article because the person in question has shown that he has no intention of listening to an autistic person about things, and because I don’t want to invite a hoarde of anti-neurodiversity zealots to my blog. But I thought the question itself deserved explanation, so I figured I’d write something about it.

I interfere, sir, because I grew up undiagnosed. Because my parents, despite their best efforts, made mistakes in raising a child with disabilities. Because my experiences of occupational therapy and remedial training on certain skills ranged from completely useless to downright traumatic. Because I learned the most useful skills from my autistic friends, not from any social skills class or occupational therapy. Because I know I had it relatively easy compared to my peers who were diagnosed in early childhood. Because I don’t want your son to experience what I did.

I interfere because I think you, and people like you, will benefit from hearing the perspective of the receiving end of those therapies and treatments. Because I think you should know red flags of abusive treatments. Because I think that you should be thinking about risks versus benefits, and what kinds of “benefits” are benefits you actually want, and what kinds of risks you’re willing to tolerate for what kinds of benefits.

I interfere because, for me, hand-over-hand (I would like to draw a line at this point between “helping someone, with their consent, to move their hand/body through a motion so they get the feel for it,” and “hand-over-hand” as used in my therapy, which was always “grab the kid, forcibly restrain them, and then force their body to do what you want it to do, when they are actively not consenting or willing, and when they have no idea what is happening or why.” The first is something that I will do, always with consent, with kinesthetic learners. The second is something that was done to me, and it was called hand-over-hand) was uniformly traumatic. It hurt, it took away my autonomy, it was frightening, it made me helpless. I screamed and cried during hand-over-hand, not because I was being willful or defiant as my parents and teachers and therapists thought, but because I was terrified and hurting. And my parents, my teachers, my therapists – they were the ones causing the terror and pain. And they thought they were helping, but they weren’t. I interfere because what I learned from hand-over-hand was not how to do the skills they were trying to teach properly (I am 27 and I still can’t write my name in cursive or sew a button or etc, obviously their occupational therapy to try to teach me cursive and other fine-motor skills failed abysmally), but rather that my pain didn’t matter, that my fear didn’t matter, that my body was not mine, and that might makes right.

I interfere because  I remember being helpless and in others’ control, at their mercy. I remember being thought of as willful or defiant or non-compliant or bratty when I was actually scared or in pain or exhausted or just bored to literal tears after hours of monotonous tedium. I remember what it felt like to be locked in an isolation room when I couldn’t do something to others’ satisfaction. I remember what it felt like when my parents flat-out refused to believe or investigate teacher abuse of me (they refused to believe for 14 years, when a classmate of mine told them stories about what she would do to me. And then they blamed me for not telling them, just as they’d blamed me at the time for “making” her abuse me). I remember too well what it felt like when my parents accepted others’ characterizations of me as lazy, or careless, or just not wanting to succeed. I remember too well what it felt like when I was scapegoated for anything that went wrong in an interpersonal situation. And I remember too well what it felt like when other people thought it would be easier to try to restrain and yell and scream and hand-over-hand my disabilities out of me than accommodate them and create an environment in which I could thrive.

I don’t want to call all the shots in your parent-child relationship. I want you to listen to those with relevant experiences- to me, to other autistic people, etc – and to think about what you’re doing. I want you to think about the potential consequences, about what’s best for your kid, and what is a true deal-breaker for you. I want your generation to avoid making the same mistakes with your kids that my parents’ generation made with me. I want you to learn from their mistakes without having to repeat them yourself, and to make the best possible decisions for your kid. And that’s why I “interfere.”

What if?

What if you were told that the way you experience the world is wrong? What if you were told your body lies? What if everything you felt and experienced was challenged, tested, doubted, disbelieved?

What if they told you the way you move is wrong? What if your body language and movement was monitored, policed, and controlled whenever you were around people? What if other people saw you slip up and laughed and made fun of you for it? What if they told you that you were a freak and freaks should die? What if they urged you to kill yourself? What if they hurt you? What if authority figures insisted this treatment was your fault and if you tried harder at moving right it wouldn’t happen?

What if they told you the way you talk and think and write is wrong? What if they dictated and micromanaged to you how you would say things, and demanded that you comply before they’d give you what you want? What if they did that even involving things you need? And what if, despite saying that compliance with their standards is the way to get what you want, they routinely ignored you if you were asking them to stop?

What if talking about this treatment was met with disbelief? What if people accused you of misunderstanding your own experiences when they weren’t there? What if they called you a liar? What if they said you had to be exaggerating, it couldn’t possibly be that bad?

What if you could never say no? What if any resistance at all was met with physical force, someone grabbing your arms hard enough to hurt and forcing you to do what they wanted? What if this was not called “assault,” but “therapy”?

What if parents who hurt kids like you were treated as the victims? What if the kids were blamed for their abuse because they move and talk and act like you and therefore deserved it? What if the media focused all stories on filicide of kids like you about how hard you are to take care of? What if parents of kids like you talked ominously about how there would be more deaths if access to services didn’t improve? What if protesting the idea that it’s okay to kill people like you was seen as unreasonable?

What if, in spite of all this violence against people like you, it was you who were scape-goated whenever violence was talked about. What if the moment a major violent act hit the news, people were speculating that the perpetrator must have been like you? What if, when you expressed hurt at this, people called you the one who lacks empathy?

What if you were told you had to do things that hurt you, because refusal is a “behavior” and behaviors are bad? What if people willfully and capriciously denied you the ability to comfort yourself as they forced you to do things that hurt, day in, day out, and then blamed you for the explosion when you couldn’t take it anymore?

What if people consistently made you do things you’re terrible at without any guidance? What if they berated you and called you names when you inevitably failed? What if they refused to let you work on anything you enjoyed or were good at until you succeeded at the thing that made you miserable? What if protest was met with insinuation that you were lazy and spoiled?

What if anybody who doesn’t move or talk or act like you was seen as better? What if there were entire organizations and research groups and societies dedicating to making you move and talk and act differently?

What if there was an organization whose sole purpose was to eliminate people like you? What if they pretended to be about helping you, and were the main group people thought of when they thought of authorities on people like you? What if this organization completely excluded people like you from positions of power and did its best to erase and discredit the words of people like you who challenged it? What if this organization trumpeted the “therapy” that you found so hurtful as the only thing that could fix people like you? What if, when you told this organization to stuff its eugenic “help,” it acted as if you were in the wrong and it was the victim?

What if people in the organization talked on video about their fantasies of killing people like you, and insisted that everyone in families like yours thought about it sometimes? What if this organization spread words of hatred and dehumanization about people like you? What if others acted on it and hurt and killed people like you? And what if the organization steadfastly refused to tone down its rhetoric, in spite of the perpetrators of these acts being close followers of it?

What if, even after all that, people thought you were the unreasonable one for protesting?

A follow-up to my previous post:

Please, read this post. If you are planning or thinking about hurting someone in your care, call for help. Go to a hospital. Go to a drop-in respite center if your city has one. Do something to keep that person safe. You are not a bad person if you need and seek help.

You are not a bad person if you admit you can’t handle something alone.

You are not a bad person for having a breakdown.

Hurting a defenseless person who depends on you? That, IMO, is what makes people who kill their kids bad people.

If you know of other resources that are good alternatives to killing or hurting someone or links to bystander resources for how to intervene, post them in the comments. I’m talking anything from CPS hotlines to emergency drop-in center locations, from red flags to how to report. Anything useful.

Don’t kill your kid. Get help instead.

Another child

TRIGGER WARNING: This post discusses the prolicide of an Autistic child in frank detail and links to news stories covering both this case and others. The stories, as many dealing with this subject are prone to do, contain ample toxic ableism which this post dissects. The remainder of the post has been put behind a tag to protect people from accidental triggering. Proceed with caution.

#WalkinIssysShoes

Trigger warning: Discussion of ABA, quiet hands, whole body listening, etc.

I’m going to ask you to do something for a minute. Stop moving. Don’t scratch that itch in your left ear. Don’t shift your weight. Don’t frown with concentration. Don’t blink too much. Don’t yawn. Don’t stretch. Don’t fidget.

Don’t have a loud body.

Watch the clock. Has a minute passed yet?

Okay. Sticker. That wasn’t so hard, was it? Again. Two minutes this time. We need to be table-ready before anything else.

Oh, you moved. Quiet body. Sit still, don’t do anything. Two minutes.

Feel how you’re aware of how much you normally want to move. Feel frustration because you know you’re not allowed to.

Don’t frown. Happy face means happy days. Quiet body. Still. Two minutes.

Notice how it feels like you’re being set up to fail. Who doesn’t move at all?

Quiet.

Still.

Two minutes.

Think about how much concentration this takes.

Quiet. Still.

Okay, sticker. Good job!

Now, I want you to read the rest of this post with a quiet body and face. You can’t learn if you’re fidgeting, after all. No, look at me, look at the words. Quiet face, you need to show whole body listening, remember? Don’t glance away. Not even if you hear a weird sound. Quiet face, quiet hands, quiet body. Whole body listening. Look at me! Sticker, good job.

No, look at me. Don’t look away when I’m talking. I’m not done yet. Look at me. Sticker.

It’s hard, isn’t it? Do you feel how your whole body is rebelling? You know how you listen best. But I won’t listen. Because I want quiet hands, quiet face, whole body listening more than I want listening. Concentrate on it. I won’t stop and prolong things by bothering you about it if you do it right the whole time. If I know that you can’t both concentrate on my words and on whole body listening at the same time, I don’t care.

Now, I’m going to ask you to do some things. They will seem pointless to you. They’re not pointless, but the lesson they teach is not one you’re supposed to be aware of learning. Touch your nose. No, quiet hands. Touch nose. Quiet face. Touch nose. Sticker!

Five stickers, you’ve earned a break! Here, have a quarter of a cookie. No, you don’t get the whole cookie, you have to earn that. Anything you like, you have to earn. Imagine playing your favorite game in two-minute increments, interrupted with doing what I want. You don’t get enough time to do anything in the game. That’s earning!

Quiet face, whole body listening. Look at me. Sticker.

Are you frustrated that you don’t get to finish anything? Are you angry? Quiet face. Are you?

Feel the frustration of never getting to finish anything. Of never being able to just enjoy. Everything has strings. Everything is conditional. Even your body isn’t yours – if you protest or just refuse to do something, I’ll make you. If I’m not big enough to make you, I’ll get a bunch of my friends together and we’ll hold you down until you give up, so you understand that we can make you do anything we want to.

Imagine you go home, and it’s the same. Quiet hands, quiet face, always being tested, always watched. Isn’t it insulting?

Imagine your siblings don’t have to have quiet hands and quiet face and whole body listening. They can fidget and have attitudes and protest and look away and talk back and even outright ignore. Imagine it’s just you that’s expected to do those things. It’s just you that has to be managed all the time. Isn’t it unfair? When others tell you it’s not unfair, does it feel like everything you do, everything you are, is wrong?

Imagine people you care about, who you depend on, make snide comments about you. Not just condescending fake-enthusiastic baby-talk like I’ve done so far. Imagine it’s outright insulting. You can pick up on the insult but not on how. You get frustrated and angry. Your parent tsks and sighs and rolls their eyes.

You get angry. But you’re not allowed to show it. Quiet face, remember? Smile for me! Smile! Good, that’s a nice smile! Sticker.

Everyone else is allowed to fidget and move. Not you.

Quiet hands.

Everyone else is allowed to get so happy they can’t contain it. Not you.

Quiet body.

Everyone else is allowed to relax. Not you.

Look at me!

Everyone else is allowed to have fun own their own time frame. Not you. Your fun is rationed and controlled and earned in bite-size pieces that can’t be enjoyed because they’re only part of a whole that can’t be reassembled.

Sticker.

Everyone else is allowed to get bored. Not you.

Whole body listening, remember?

Everyone else is allowed to get upset. Not you.

Quiet face!

Everyone else is allowed to get frustrated. Not you.

Quiet hands!

Everyone else is allowed to get angry. Not you. Your anger is wrong always, no matter the cause. It’s because you’re autistic that you’re angry, and you have to be trained out of it. Not because any reasonable 15-year-old would object to being treated with condescension and having literally everything in their life, down to when and how long they can play video games for, micromanaged.

Bottle it up. Repress. Don’t feel.

Don’t  be happy, it makes you bounce and move. Quiet body.

Don’t be sad, it makes your face screw up. Quiet face.

Don’t get bored, you look away. Look at me!

Don’t get anxious, it makes you wring your hands. Quiet hands.

Don’t like things, they’ll use it against you. You have to earn it.

Don’t protest anything, no matter how unfair. It will be used to punish. You’re losing tokens.

Don’t feel. Don’t think. Don’t move.

Don’t be.

Don’t be you.

How long could you live like that before you exploded?

Walk in Issy’s shoes.

#IAmNotKelliStapleton flashblog signal boost

This is a thing that is happening. Signal boosting. Will write something for it soon but for now have a signal boost.

Presuming competence goes both ways

Hat tip to Michael Scott Monje Jr for writing the line that led me to this train of thought.

The title sentence is something that’s been ringing in my head ever since I first read the linked poem, and it was hard at first to find the right words to explain why. But now I think I have.

Autistic and disabled people in general do others a grave disservice when we assume they’re ignorant in spite of evidence to the contrary. We do them the same disservice we protest against when it’s done to us. We presume them incompetent. We presume others incompetent of knowing and meaning what they say.

It’s wrong of us to do that. And we hurt ourselves to do that. By educating a brick wall over and over and over again, we waste our own time, energy and spoons. Those of us with PTSD have triggered flashbacks in themselves. People with mental and chronic illnesses have triggered flareups. Others, myself included, have triggered meltdowns.

We need to stop.

We need to accept that someone might know that what they say is harmful, know that it’s hurtful, know that it’s wrong, and not care. We need to accept that someone might know the full impact of what they’re saying, and mean it. We need to presume that others are competent to form harmful, bigoted opinions and to act on them in bullying and abusive ways. Even if they are otherwise seemingly-nice people.

We need to presume competence. We need to presume that others are capable of educating themselves, capable of thoughtful self-evaluation, and capable of changing.  And, as a corollary of the prior, we need to presume that if they do not after being given ample opportunity and in the absence of some reason why they can’t, it is not because they haven’t been educated enough, but rather because they choose not to.

I will no longer presume that people who act in abusive and bullying ways after being asked to stop have simply not been asked in the right way. I will have more respect for them than that. I will presume competence, and realize that they mean to hurt, they mean what they say, and they are choosing to behave that way. People can choose to be mean.

Presuming competence must go both ways.

Two must-reads on the topic of my previous post, and a recommendation

Must-read the first, a necessity for any readers with disabilities: It’s time to accept that they hate you, by Michael Scott Monje Jr.

Must-read the second, another perspective on what went down on the TGPA Facebook page on Monday: “No, Fuck YOU!” When Your “Allies” Are No Longer Your Allies. by Erik at Autistic SHS.

For parents wondering where a good alternative Facebook community is: Consider Parenting Autistic Children with Love and Acceptance and We Are Like Your Child. They’ll be the ones I promote to parents from now on.

Yet more counter-productive antibullying efforts.

So. Yeah. I’m sure those in the autistic community are well aware of this, but an autistic boy recently was humiliated in a very specific and degrading manner by bullies in his community. His parents then decided to compound the humiliation by going to the news and sharing the story – and the video of the incident – internationally.

Neurodivergent K already has a good take on this incident, and I direct you to her blog. The gist of her post is basically this: If you’re trying to counteract bullying, then for the love of all you hold dear in this world, don’t do what the bullies want.

In my post, I’m going to say: if you’re trying to counteract bullying, don’t amplify the bullying. By which I mean: This boy was already humiliated. He was already going to be the subject of gossip at the school for the next approximately until he graduates (judging from my experiences growing up). Then, his parents – assumably with he best intentions in the universe, wanting to raise awareness of bullying – share the video internationally.

Do you thing people in the region (they gave their region, by the way) are not going to talk? Holy flying hell in a handbasket, people. From experience in my school: I was humiliated in a very specific and very embarrassing way by some bullies as a kid. I will not detail the experience, but suffice to say it happened (in more than one way, actually – bullies are terrible people). One time, I made the mistake of telling an adult when they asked about some jokes kids were making. Then an assembly was called at school, and the principle lectured the entire school on how it’s not at all okay to do [very specific thing that happened to me] to another person.

If it was possible to melt into my seat or burst into flames on the spot, I would have. Instead, what had been an isolated incident of bullying where the bullies hadn’t told anyone because they were afraid they would get into trouble became the talk of the school. And my humiliation was compounded.

That’s what those parents did to that boy. Except, instead of it being just the school, they humiliated him in front of their entire community. People will talk. They’ll find out who and how and where and when. That’s what they do. And if his parents think he was dealing with bullying before this happened, it’s got nothing on the number of pranks that will be done to see exactly how gullible and bullyable he is in the coming months. His parents just gave the fucking green light to every single nasty prank anyone in his school thinks of, and they painted a hugeass target right on his back.

And they probably don’t realize it.

But that’s not through this being an impossible-to-anticipate consequence. Even though autistic people are supposedly the ones with empathy deficits, it’s because the parents are displaying an extraordinary lack of empathy for their son.

Parents, think of it this way: Think back to when you were a teenager. Think about something someone else did to you that you found very hurtful and humiliating. Think about that. If it’s not an incident of similar severity to what happened to this kid, amplify the humiliation accordingly. Now, ask yourself, “When I was a teenager, would I have wanted my parents to share this incident internationally?”

I am pretty much certain that the answer to that question is “No. No, no, no, no, no. Not in a million years. No.”

Parents, your kids have thoughts and emotions and feelings, and not just about what their bullies do to them. They also have thoughts and emotions and feelings about what you do to them. Think about how you would have felt as a teenager about your parents doing something to you, then decide whether you want to inflict those feelings on your kid. Think about whether or not you would’ve wanted something shared before you share it. Better yet, ask your kid’s permission before you share something concerning them. And let them have the final say. Because you’re not the one who has to live with the fallout. They are.