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.

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3 thoughts on “Michael John Carly, you are wrong.

  1. S-kw'etu'? says:

    This man is nothing more than an appropriator, who’s motivation are clearly self serving and ego based. He even appropriated my email address from an autistic mailing list and began to solicit my support which is a strong indicator that he is someone whom one should go quite far to avoid doing any business with.

    He does not speak for me, he could attend all the university courses created and still never be qualified to understand me much less to speak for me and it would not surprise me if most if not all other adults on the spectrum felt the same way.

    What he does represent, he represents himself, no one else and nothing else, he is self serving period.

  2. psychtld says:

    “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.”

    That’s pretty much how I understand this whole thing. Some people are making it into a pissing contest, and – from what I’ve seen in various fora – it’s not the autistic people doing that: we’re always acknowledging that parents of autistic children have it harder than it would be for most parents. I myself have an autistic daughter. It can be hell. Some of that is because parenting a kid who has difficulties taking other’s perspectives on board is always going to be hard; but most of it is because of what happens when other people or systems of people make her life miserable. Being autistic is just as hard as all that.

    I’d tell you what my diagnosis of MJC would be, but I’m looking for to NOT be blocked from your blog. It’s a rather good blog.

    • ischemgeek says:

      Yeah, please no with the armchair diagnosis. Even if you are a professional, others aren’t, and besides I think most professions in the health industry have rules against diagnosing patients you haven’t examined, right?

      Anyway, yeah, I will not deny for a minute that raising me was hard on my folks. My father studied for exams beside my NICU bed. My mother quit her job to be my tutor when I was 5 and the school would not accommodate my breathing issues well enough to allow me to attend without risking my life so that I could be kept home when I was sick. My parents were up more nights than not from my birth through preteenagerdom because of my breathing issues, and then in the daytime, I had emotional problems stemming from the severe bullying and lack of accommodations I was getting at school, and having your kid come home crying literally every single day had to be tough. Then they were being told by “experts” in OT and PT that I just needed to practice handwriting more, and that if I said it hurt I was just lying because I found it hard and didn’t want to do it, and they were being told that for my own good, I had to be restrained and forced to practice, my tears and screams notwithstanding, and that must’ve been very hard on them. I suspect that it was harder on me, because I was the one who had two people who each outweighed me by a factor of 3 or 4 grabbing me by my arms and shoulders and holding me down and forcing me to do things that hurt a lot, but it couldn’t have been easy on them to believe they had to do that to me (even though modern research shows that what they did was actually counter-productive for kids with sensory-motor dysgraphia).

      As much as I do have issues with how I was treated going up (and I do), I recognize that raising me must’ve been hard on my folks.

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