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.

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?

How disingenuous can you get?

So, not only did Autism Speaks quote Kassiane Sibley without her permission, portraying a well-known and vehemently anti-Autism Speaks autistic advocate as if she was a supporter of theirs.

They then claimed to have permission on her blog.

They then claimed they would take it down.

They instead white-texted it.

They finally took it down after being called on it…

… then they changed the URL and quietly put the white-texted version back up sometime last year.

Alyssa of Yes, That Too has a much better run-down of the whole thing here.

Their white texting makes their toolkit – in which they’re still using her words without her permission – come up on the first page of Google when you search her name. For some permutations, it comes up even before Kassiane’s own sites.

I won’t say this is a new low, because that would minimize all of the other vile shit they’ve done in the past few years (like partnering with an organization denounced at the UN for its torture of disabled people, driving their autistic members to resign in protest of their demonization of autism, and using racist dogwhistles to dismiss their critics, among many many many many others). It is, unfortunately, par for the course.

And, believe me, the irony of an organization that paints people like me and Alyssa and Kassiane as “not living” and possessed by demons finding it necessary to steal an autistic person’s work and go to such lengths to keep stealing it is not lost on me.

But this standard-operating-low hurts a friend of mine, and so it makes me angry. Tell Autism Speaks that they need to stop being disingenuous assholes and take that shit down.

Why I’m going to #BoycottAutismSpeaks

Why? Many reasons:

Firstly, Autism Speaks (AS) is perhaps the only disability rights charity in the world (certainly, the only one I’ve heard of) that is routinely and widely criticized¹ and protested² by those whose interests it claims to have at heart.

Autism, Asthma, and Autism Speaks.

This is going to seem like an odd analogy, but bear with me for a bit and you’ll see what I’m getting at.

Like autism, asthma comes in a spectrum, ranging from people who cough a bit longer than usual when they get a cold and aren’t bothered otherwise to people undergoing transplant evaluation because of the severity of their asthma and everything in between. As a kid, I was on the severe end of the asthma spectrum. As an adult, I’m pretty much dead in the centre of it. Like autism, asthma often becomes evident in childhood, and like autism, asthma can cause parents trouble, heartache, and suffering on behalf of their kids. I have lost track of the number of times my parents found themselves in the ER at 3AM because I couldn’t breathe. It sucked for me, yes. But I’d by lying if I said I didn’t think it sucked for them, too.

Like autism, asthma has some stigma and prejudice to it. Not as much, to be sure (I’m unlikely, for example, to get arrested for public intoxication if I’m jittery from Ventolin, but that’s happened to autistic people for being autistic in public), but try to argue with me that there’s no stigma to asthma when I’m having a flareup at the gym and four different well-meaning condescending jerks tell me that I shouldn’t “let” myself have an asthma attack or that I need more willpower or what have you. Tell me that when someone tells me I’m using my asthma as an excuse the third time I have to go for inhalers the day after I get over a cold. Try to argue there’s no stigma when I have four chairs worth of elbow-room on all sides in a packed cafeteria because I’m daring to take my inhalers in public. Try to tell that to undergrad me when I got ejected from class because I was having a flareup and was coughing a lot (the prof refused to believe I wasn’t contagious and told me I should be home in bed. Now, I’d know to go to the accessibility centre to protest that, but I was ignorant of my rights at the time). Or try to tell that to kid-me when the teacher made her wait through an asthma attack till passing out because “If I let you go get your inhaler, everyone else will want to go, too.” There’s stigma and prejudice. That teacher nearly killed me because of it. Other kids have died from it.

But unlike autism, asthma awareness campaigns do not focus on the parents of kids with asthma to the exclusion of the kids themselves. They don’t focus on kids to the exclusion of adults (though, I admit, they do seem to forget that young adult asthmatics like me exist – it’s all children, teens and seniors in the majority of the ads). They don’t pretend that those with mild asthma aren’t asthmatic enough to need help or education, and they don’t paint asthmatic kids as a burden or a drain on society. Asthma awareness campaigns focus on lessening the stigma and removing the sense of people with asthma being somehow other or less, whilst also educating on the correct way to respond to attacks in hopes of preventing another Sam Linton. Autism Speaks, on the other hand, focuses on increasing the stigma and scaremongering for more funds.That’s not okay. ASAN and AAC have issued a joint statement, and the Autism Women’s Network has issued their own on the issue that inspired this post (short version: surprise surprise, once again Autism Speaks decided they have the authority to speak for people like me without our permission).

Leaving out my many and sundry other issues with Autism Speaks (and they are legion, including but not limited to: their support of child killers and attempted child killers, their erasure of autistic advocates, their support of abusive and harmful actions in the guise of “therapy”, their historical association with pseudoscientific movements like antivaxers and DAN, their current association and partnership with the torture-as-therapy-advocating JRC, and on and on and on it goes…), I have a Big Fucking Problem with how they collect their money. There are ways of raising awareness and funds without stigmatizing and dehumanizing those with a condition. They do it for asthma, for cerebral palsy, for Down syndrome, for cystic fibrosis, for MLD, and for dozens of other conditions, some of which, unlike autism, are progressive and terminal. Why isn’t Autism Speaks doing that for autism?