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.”

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.

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.

#IStandWithKassiane

Okay, so, it’s with a heavy heart that I announce that no longer will I recommend the Thinking Person’s Guide to Autism book or community as if they’re on my mental list of good parent resources. They’ve been demoted to “less bad.”

Why?

Because of their continued, and worsening, treatment of autistic adults on their community facebook page, which came to a head last night and the night before. For a long while now, autistic people have been held to a higher and higher standard than non-autistic parents in the comment threads of TGPA. It had gotten to the point that some autistic users complained of a seeming “parent’s code” that appeared to prevent real criticism by parents of other users who were parents.

This phenomenon was apparently out in spades Sunday night (I was not there and so cannot speak to it myself) and was definitely apparent last night. While parents derailed and condescended with impunity, Kassiane of Radical Neurodivergence Speaking was banned for (or so it looked to me as a lurking observer) pointing out, repeatedly, the double standard in how autistic non-parents and parents were treated.

Condescending, snide posts by parents went by with impunity (many are, in fact, at the time of this writing still up. One post by a parent talking about those who were upset with her reads used scare quotes to question whether or not people upset with her were in fact adults and repeatedly in more than one comment contrasted that with “reasonable, calm” people she approved of, as just one example), even as they derailed a thread that was supposed to be about how a screwup the night before affected autistic people and how the autistic people wanted things to improve. When moderation action was taken, it came down on posts by autistic posters (not just Kassiane) before it came down on all but the most egregious of parent comments. This on a website that claims to demand “respectful” disagreement.

By contrast, strongly-worded but fairly respectful comments by autistic adults were deleted. One by Cara Creager said essentially that they need to work harder and enforce moderation standards more strictly on parents if they want to be a safe space for autistic adults. That was deleted. The comment questioning whether people disagreeing strongly were competent adults, on the other hand, is still up.

Parents turned a “sorry we messed up, what can we do to make it better?” thread into a “FIX MY CHILD!” thread with total impunity. Adult autistics had their comments deleted and were chided for objecting to this (apparently, respecting the topic of discussion is something only autistic people have to worry about over at TGPA). Kassiane pointed out how this played into the double standard she had been talking about the night before (I was not online Sunday night and so am missing some context here). Shortly thereafter, Kassiane was banned. For “bullying.”

In summary:

Not banned:

• A parent who questions the mental competency of those who are emotional in their disagreement, who condescends to other adults, and who characterizes emotion as abuse. Same parent acted with disdain towards adults who questioned her insistence on speech over communication.
• Parents (plural!) who took a “how can we do better?” thread and made it all about them and asking autistic people to, among other things, view video of potentially abusive situations.
• A parent who wrote about what a burden raising their child is, who scolded autistic adults and exhorted them not to judge when they were writing about the problems with ABA.
• Antivaxers.

Banned:

• An autistic advocate who helped build their page, calling them on a double standard in an admittedly abrasive fashion.
• Several autistic people who protested the banning.

I wish that I could tell you to go look at it yourself, but FB hides posts by banned users and I didn’t think to get screen shots. If it turns out that someone else nabbed screen shots, I will update this post with them.

So, for now, they are better than Autism Speaks, but that’s a very low bar to step over. And that’s why I won’t be promoting anything by TGPA anymore – either here, on Twitter, or on Tumblr. I don’t want to be associated with a place that says it’s okay for parents to talk over autistics and ignore the purpose of threads and condescend and question others’ mental competencies… but not okay for autistics to stand up for themselves or to point out double standards in moderation.

I urge TGPA to rethink the enforcement of their moderation policy and their banning of a user whose main crime was not sugarcoating the truth. For my part, I want nothing to do with them until they clean things up there.

“I dunno”

I used to say “I dunno” a lot as a kid. It was my placeholder. Depending on the situation, it usually meant one of two things: “I genuinely don’t know the answer to that question,” or “I do know the answer, but I don’t know how to phrase it.”

I got into the habit of “I dunno” to questions because other people – adults especially – wouldn’t give me time to construct my thoughts. They figured that if I could blast out entire monologs about weather, I should be able to answer any question instantaneously and intelligibly.

The issue was, for me then and now, it’s a situation of “Fast, coherent, and full – pick any two.” I can answer quickly and coherently if you want an incomplete answer. I can answer quickly and fully if you don’t mind what I’m saying coming out so garbled you can’t make heads or tails of it. But if you want a coherent, full answer to your question, be prepared to wait a while so that I can sculpt the words into what they need to be.

Adults didn’t get this, and they’d get angry if I took too long to answer. So I started saying, “I dunno.” This would also frustrate my parents, especially if it was a preference question or a question I definitely did know the answer to. “What do you mean you don’t know?” or “Yes, you do!”

It would frustrate me, too, because a lot of the time, my parents would take it at face value and then work of the assumption that I didn’t know. “I know that.” “You just said you didn’t!”

One of my teachers growing up had it figured out, though. She’d hear me say, “I dunno” and wait a beat or two. If I moved the conversation on, she knew I genuinely didn’t know, and if I answered fully a few seconds later, she knew I just needed time to process. It worked really well.

So, I’d say, if you’re dealing with a kid whose default answer seems to be “I dunno,” try giving the kid a bit of time to sort out their thoughts before you move on. You might be surprised by how they answer.

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.

All kids want to succeed

When I was a kid, my teachers would get frustrated with the seemingly-random distribution of my abilities. They didn’t understand how I could read at a high school level but not read aloud, how I could do trigonometry, but not write cursive, how I could memorize some things instantly and others not at all. When faced with a kid who frustrates and baffles them by turns, many teachers, I’ve found, don’t seek to look further. Instead, they blame the kid.

I gathered many unofficial labels due to my parents’ refusal to get me an official one. One of the most damaging to me as a kid was the idea that I “just don’t want to succeed.”

Some of you will not have to imagine this because you lived it, but for the rest of you, imagine that you’re a kid again. Imagine you’re having trouble with something in school – doesn’t matter what it is, but just imagine that the thing giving you trouble is utterly incomprehensible to you. Someone might as well be speaking Klingon to a non-Trekkie for all the sense it makes to you. Remember the frustration you felt as a kid when having trouble with something.

Imagine you told your teacher about this frustration, and were met with a reiteration of the words that make no sense to you. When you say they make no sense to you, that you don’t understand, the teacher tells you to try harder. You don’t understand how you can try harder on something that you don’t even have a sliver of understanding about, but you try harder anyway. And you still can’t do it.

So you ask a different adult. And they give you the same explanation. And it still makes no sense. They also ask you to try harder.

You go back and forth like this for a while, and finally you give up. You don’t understand, and it’s obvious they can’t help you understand, so why should you keep trying? It’s not like you’re going to get it anyway.

And that’s when the adults start telling you that you could get it if you tried (ignoring the fact that you were trying before and it didn’t help), and when you continue to not try because you’re sick of trying to break down a metaphorical brick wall with your forehead (all that’s done is give you a sore forehead. The wall stands unperturbed.), they tell you that you must not want to succeed.

At first, you ignore them. After all, you know you want to succeed, and you just don’t understand it and don’t see the point of doing the same thing over and over again with the same results.

After a while, though, you start to wonder if they’re right. Especially as it becomes grown-ups go-to answer whenever you have any trouble with anything. You don’t want to succeed. You’re not trying. Try harder, and you’ll succeed. If you don’t succeed, it’s your fault, you didn’t want it enough.

Imagine the impact of that message as the kid starts to take it to heart. Imagine it.

What “you don’t want to succeed” did to me is it made me afraid to ask adults for help. Because I’d be blamed for the difficulty I was having an told that I just needed to try harder. The hilarity of it was that if I didn’t ask for help, I would likewise be blamed. I needed to ask for help when I was having a hard time with it. That I didn’t meant I must not want to succeed.

It became a catch-22 that absolved the grown-ups around me of any responsibility to help me learn the things they claimed to be trying to teach me. Everything was my fault for not wanting it bad enough. If I succeeded on my own without them, it was proof that I could succeed when I “wanted” to badly enough (ignoring the fact that those successes were in subjects that did and have always come easily to me, like math and science). If I asked for help, it was me being lazy and trying to get someone else to do my work for me because I didn’t want to succeed enough, and if I didn’t ask for help and struggled along on my own, it was because I wasn’t trying and didn’t want to succeed.

I have never met a kid that doesn’t want to succeed. The child’s definition of success may be different from that of the adults around them, but all kids want to succeed. When adults say they don’t, I wonder what it is the adults are trying to explain away.

How to give good directions.

I will have another asthma education month post up tonight hopefully, but there is a thing I wanted to write about unrelated to asthma because it is relevant.

I hate, hate having conversations that go like this:

Them: I need you to do A.
Me: Okay, I’ll go do A.
T: Wait, you have to do B!
M: Erm, B? Okay. I’ll go do B, and then I’ll do A.
T: But you said you were going to do C like three days ago!
M: Wait, what? I did? I don’t remember that, but okay, I’ll do C next, then.
T: But we need to get D done today! You can’t do C right now!
M: … *headasplode*

That’s around the point where my brain is grinding its gears and going, “WHAT ARGH WHAT DO?!”

Gah.

If you need me to get A through D done today? Say, “We need A, B, C, and D all done today.” If you have a preferred order, add, “D is highest priority, so do that first.”

I can handle that.

What I can’t handle is four contradictions from a person in four conversational exchanges. Be clear, concise and consistent in your directions.