Here we go again – well-meaning misrepresentation in portrayal of #Autistic #women — i.e., #thebigthings

Girl standing with an umbrella in a storm with fire Artwork by Mirella SantanaWell Autistic Bewareness Month isn’t yet over, clearly.

And I feel a big bad about writing this post, but I have other things I need to do with my life, today, and I need to get this out of the way.

So, there’s this play called “The Big Things” that’s running in London. About a man and his Autistic wife who has all sorts of reservations about becoming a mother. I haven’t seen the play, which somewhat limits my ability to comment exhaustively. I have read a review of it, as well as seen a fair amount of blog posts and Twitter conversations about what a disservice it does to Autistic mothers — and, from what I’ve ready, Autistic women, as well.

The one thing I have experienced directly is a SoundCloud recording of a Q&A session this past Friday evening. Paul Wady of the Guerilla Aspies performance group was on the panel to discuss Autism and the effects the play has on the Autistic community as well as women. You can listen for yourself below. Or not. Your choice. (Piece continues below the SoundCloud player)

A lot of things in the panel discussion raise “red flags” with me. An Autistic man speaking for Autistic mothers… the way he typified the Autistic community… the way that old pain from a really… unfavorable experience dating an Autistic woman, years ago, obviously colored his discussion about Autism and women in a larger sense.

The Q&A was held on a Friday night, and we know how many Autistic people are up and at ’em on a Friday night, after a loooonnnnnngggg week of dealing with the non-autistic world… not to mention Autistic mothers who, um, are likely mothering, fer Chrissakes. Sheesh, it just gets worse.

One of the things that bothered me the most about the recording — and I had to sit through something like 40 minutes of increasingly irritating / distressing discussion to get there (I know… poor me, right? 😉 ) — was a woman at the end saying that, surely some discussion about Autistic mothers is better than none! And we should just be grateful that we’ve been included.

Ugh. I don’t even know where to start with that. But let me boil it down:

  1. The idea that we should just be grateful to be included smacks of 1954. Back when well-coiffed women typically had their arms grabbed by men who steered them in the direction they wanted. (I’m thinking of all the scenes in Sabrina, which I watched the other night, when men were grabbing women’s arms and hustling them through some door, or in this direction or that — yeahhhh… cringeworthy, by today’s standards.) The idea that women should just be grateful to be included — and Autistic women, no less — to have a chance to participate. What year are we in, anyway? I don’t get that.
  2. Yes, raising awareness about the existence of some people can be beneficial. But what kind of awareness? Back in the early 1900s, there was a lot of awareness being raised in America about immigrants entering the country. This is what that awareness looked like: See what I mean? Now, to be clear, the kinds of cartoons cranked out around the turn of the last century were specifically for the purpose of inciting anti-immigrant sentiment. And Kibo Productions’ intentions were nothing like that. At all. But when we talk about “awareness” we need to be clear about what’s being communicated — and that there’s actually some truth to it.
  3. As for discussion, my main question is, how much actual discussion can or will truly take place? Are all audience members going to attend discussion groups or engage with others about the validity of this play? What’s more, let’s think about where we’re starting the discussion — in this case, from a deeply flawed and limited standpoint, which doesn’t give us much ground to stand on, or build a decent discussion on. It’s like trying to have a discussion about a butterfly, when all you see is a caterpillar, and nobody talking about the butterfly has actually seen one in real life, just memes on Twitter.
  4. The woman speaking up appeared to be speaking from the perspective of a non-autistic individual. She got a round of applause. Mmmm-okay. So people want to talk about this stuff. Great! Let’s start by understanding what the actual objections are, validating them, and working from there. Not saying the equivalent of, “Oh, you’re getting all worked up over nothing.”

Autistic women have been dealing with this kind of stuff — invisibility, being discounted and dismissed, people telling us “why are you so upset?”, not to mention being gaslighted about “making stuff up” — seemingly since the beginning of time, and it gets old. How unfortunate, that no Autistic mothers were actually able to attend the Q&A discussion. Woulda been great, not to mention valid, to include them in the discussion.

I’m not an Autistic mother (I deliberately chose not to have children for personal reasons), so I’m not going to put words in anyone’s mouth. Sonia Boué and Katherine May and others have done a fantastic job of responding. I’ll post their work on this blog when I can — it’s really, really good.

This of course is an ongoing situation and new developments are happening, every time I go back to Twitter. Which is both bad and good. It’s bad because it shouldn’t have happened in the first place, and it’s good because now we get the chance to turn things around.

If only we hadn’t been put in this situation, to begin with…

Live and learn, I guess.

Something better this way comes

person standing on shore looking out at ocean as sun streams through break in the cloudsI’ve been thinking a lot about how much time and energy has been consumed by the drama around “To Siri With Love”.

I’ve been thinking a lot about how much time and energy women have spent over the last days and weeks and months, dealing with all of the sexual harassment bullshit that’s been going on for as long as we all can remember.

And yesterday, I came across a Twitter post that really said it all for me.

i am sad that so much good women’s writing has come out of this moment and all of it is inevitably explaining this moment—what else could we be writing if we weren’t constantly doing the labor of explicating our own professional subjugation?
i am sad that so much good women’s writing has come out of this moment and all of it is inevitably explaining this moment—what else could we be writing if we weren’t constantly doing the labor of explicating our own professional subjugation?

It’s as true for my feelings about the autistic situation, as it is for my feelings about women and our place in the world — past, present, future. It applies to a whole lot of groups — people of color, disabled, queer, all the folks who have been systematically disenfranchised and have been fighting to stay afloat for a while, now. We’re all so busy just trying to stay alive, that we have no chance to do much else.

Take Black women voters in Alabama, for example… Nobody really notices Black women, until they show up and vote the way everybody else who cares about the well-being of folks who aren’t straight, white, and a certain slice of Christian, should vote. And then, suddenly, everybody’s in love with Black women. They notice they exist.

And then the election passes, and everybody goes back to their systemic inequalities, slipping back into somnolent indifference… until the next Major Threat comes along.

It’s a tiresome cycle, and it’s perpetual. And it sucks the life out of so many of us. Basically, if we weren’t constantly dealing with all the socio-cultural assaults, the injustice, the inequalities, and so forth, how much time and energy would we have for creating and writing about other things that have to do with us living our lives to the fullest in the kind of world we want to create, rather than constantly defending ourselves against the systems that somebody else created and we are sorta kinda stuck with?

I feel the same way about the whole Siri drama. I feel like I’ve really gotten derailed, over the past week or so. I’m very happy with some of the pieces I written, and I think they will stand the test of time. They speak not only to themes in the book, but also to enduring issues that we really do need to solve as an autistic community, even as a larger human community, if we are going to move forward. Unless we fix some of this shit, we can’t ensure that everyone will live with full dignity and opportunity to experience life as fully as we can. It’s the typical socio-cultural moshpit action that gets me all stirred up and bent out of shape on a semi-regular basis.

The problem is, the Agendas I’ve been addressing have been set by somebody else, the bar for acceptability has been set extremely low, and the stakes feel very high.

It’s addicting. It truly is. Going on Twitter to see what else people have said, looking for how people are responding, coming through the news, reading blogs, even occasionally going over to Facebook – which I tend to avoid like the plague – it all perks me up and gets me out of my low-level malaise that seems to be the flavor of the year.

But addiction is not how I want to spend my life. In fact, much of my life has really been marred by addiction coming from all directions, including from within. I deal with my demons on a regular basis, and I know how easy it is for me to get drawn into cycles of upheaval followed by pain management, and I know how susceptible I am to the buzz that comes from active social media.

So, I have to be careful. And every now and then, I need to step away. It’s healthy. It feeds the sides of me that get lost in the online shuffle. And it helps my system regulate back to where I am behaving like myself again, instead of just being a series of reactions to everything else that’s happening around me.

Honestly, that’s what I want most: To be myself, in my own way, rather than just being a composite of reactions to others. The great irony is, those others probably don’t even realize I’m there, in the course of their own internal dramas. Everybody’s got their dance to dance, without exception. So, the task of living in constant relation to everybody else’s self-absorbed gyrations (which may not make any sense to anybody else outside their head, including me) is a fool’s errand.

Unfortunately, I fall for playing fool far too often.

That being said, when I look around me at the world we inhabit, replete with its misunderstandings about autism, and human experience in general, I ask myself, How can this change? Certainly, it changes when we take oppressive and exploitive elements to task, and we oppose their proliferation. We can’t just let people get away with crap without saying something. On the other hand, we also need to add in positive influences as a kind of cultural ballast to give our community more to work with than just accusations that Those people did things all wrong all over again.

That’s the space where I want to be. I want to be in a positive frame of mind, in a position of creating new alternatives, not just taking the old, tired ways to task. I don’t want to be a freaking gatekeeper for other people’s sensibilities. I’ve got my own since abilities, and getting dragged down to their level is just so depressing. Plus, it’s boring. Seriously it’s incredibly . mind-numbingly . boring. Where’s the joy? Where’s the excitement? Where’s the future? There’s not a whole lot of it that I’m seeing in the old, worn, outdated attitudes about autistic people and how we function in the world.

When I look around me, I see a lot of signs of hope. Employers are making more of an effort to make room for autistic people. Our community is picking up speed, beginning to thrive, and the amount of writing by actually autistic people is increasing exponentially. Things genuinely are shifting in our favor, however slowly, and every day it seems like there are new glimmers of hope in our prospects for the future. No substantive change happens overnight, of course, and the changes that we do make have to be supported and furthered in ways that will make them more than just a passing fad. But, compared to how things were 20 years ago when I first realized I was on the spectrum, things are so much better now. And they’re better because we are paying attention to the stuff that needs to change and we’re getting allies who are actually capable of stepping up and helping us steer our collective ship any better and more positive direction.

So, while the critic in me practically salivates at the idea of working my way through offending research papers and books and memoirs and picking them apart to show how very Wrong they are, there’s a bigger part of me that wants to just ditch all that crap, leave the critiquing to others who have the time and energy for it, and set out in a whole new direction. I don’t want to get stuck in the middle of other people’s lousy inventions, their shoddy thinking, their lazy philosophies, handing over their whole minds to purported experts who have a ton of funding to spread half truths and outright lies about people like me. I want to live my own truth, and demonstrate very clearly that there’s a whole lot more to being autistic than just a collection of behaviors. The autistic experience is humanity-times-1,000, and with the depth and breath of our intensities, there’s a whole lot to be learned about what it means to be autistic — and what it means to be human.

Our neurology amplifies everything. It magnifies and emphasizes stuff that most non-autistic people would never even notice. And it also numbs us to what other people are very sensitive to. It’s fascinating, and why wouldn’t I want to dwell in that fascination, as opposed to getting dragged down into the intellectual malaise of people who haven’t figured out how to think for themselves?

Why indeed?

That being said, it’s time for me to wander off and go think about something interesting for a while, hone my thought process, and see what coolness I can come up with. Autism is amazing. It’s excellent. And it can be a hugely challenging gift. But when I rise to the challenge and work with things as they are, some pretty cool shit happens.

Let’s talk about that, shall we…?

Without #TheoryOfMind, #ToSiriWithLove wouldn’t be the dumpster fire it is

picture of screaming man kneeling with blindfold on and barbed wire wrapped around his body - theory of mind is meaningless and causes pain to autistic people
Haven’t autistic people suffered from the “Theory of Mind” hypothesis long enough?

I’ve been thinking a lot about this infamous “Siri” book, lately, and while some people are absolutely horrified by the author’s attitude about her son, there’s something deeper and larger that really bothers me about this book. In fact, I think without this element, the book – and the attitudes of the author, which give the book its overarching tone – might not even exist.

That factor is the influence of the “Theory of Mind” (ToM) hypothesis, popularized and commercialized by Simon Baron-Cohen. The ToM hypothesis posits that autistic people lack “the ability to attribute mental states – beliefs, intents, desires, pretending, knowledge, etc. – to oneself, and to others, and to understand that others have beliefs, desires, intentions, and perspectives that are different from one’s own” (thank you, Wikipedia)

There is some great thinking around why this theory is wrong, so wrong, and the implications of it, so I won’t go into all of it. See Sharing: Clinically Significant Disturbance: On Theorists Who Theorize Theory of Mind | Yergeau | Disability Studies Quarterly,  Theory of Mind, my Ass,  and We can stop suffering from Theory of Mind, Now. Study reports: Interaction Takes Two: Typical Adults Exhibit Mind-Blindness Towards Those on Autism Spectrum on this blog for more of my writing about it.

I think it’s fair to say that “Theory of Mind” started wreaking its havoc years ago, and considering how anti-autistic thinking has really evolved and dug in just over the last 10 years, or so, I would say that it has experienced something of a philosophical triumph. Woe betide any who challenge it. In fact, if you do challenge it (as an autistic person), it’s easy enough to refute you by saying you lack ToM, yourself, so how could you understand something you’re too deficient to grasp?

It’s the ultimate intellectual castle surrounded by a moat. Just toss ToM out there, pull up the conceptual drawbridge, and you’re safe from all the marauding hordes of those developmentally disabled types.

Theory of Mind definitely dominates the mind-share space in mainstream autism thinking (and I use the term “thinking” with reservation). And nowhere is that more evident than in “To Siri With Love”. I mean, Siri-ously (sorry!), it’s just so pernicious and pervasive, and the author repeats its tenets so often, that it’s pretty clearly a foundational subtext that colors the entire discussion of Gus and his life.

The author says in the Introduction,

…every person with ASD I’ve ever met has some deficit in his “theory of mind.” Theory of mind is the ability to understand, first, that we have wishes and desireds and a way of looking at the world — i.e., self-awareness. But then, on top of that, it’s knowing that other people have wishes and desires and a worldview that differs from yours.

Groan. “Every person” she’s ever met… Maybe she needs to get out more… The worst thing is, she keeps referencing ToM throughout the book. Whether it’s explicit references to ToM or the underlying tone that belief in alleged “mind blindness” makes possible, the blight of Theory of Mind is like an invasive species that’s reached its grasping tentacles it to a whole underground network of healthy roots and is gradually choking out the chance of any alternative concepts.

I’m not sure she could have written the book she did, had she not been taught that her son is severely deficient in a quality / ability that some (including Simon Baron-Cohen) believe is one of the hallmarks of humanity itself. Clearly, someone got to her and convinced her that Gus has an insurmountable deficit. And there we have it. End of story. Until somebody can find the gold in it and make a decent buck off the whole “hilarious” catastrophe.

What I really hope to point out in this little essay, is that while challenging the author on her choice of words as well as her outlook is certainly one way to approach this situation, and taking the publisher to task is absolutely necessary, let’s not forget who is actually responsible for this dumpster fire. That would be Simon Baron-Cohen, along with the publishers who put out his work about ToM, and all the other people who seized on that half-baked concept, popularized it, capitalized on it, and built a veritable canon around that really shitty example of bad science.

The ToM hypothesis is so pervasive, so subtly intrusive, that even autistic people buy it. I had spirited exchange with an autistic man about a week ago about how theory of mind is not good for anyone. He didn’t buy it. It was very invested in the explanation, which he seem to think exonerated him from culpability for his autistic challenges and made it possible for him to understand himself better. Yes, it’s important that we find ways of understanding ourselves and our relative limitations… and we often do that with that hypotheses, theories. They can be extremely helpful to the autistic mind. We look for patterns. That’s what we do. And having a shorthand explanation that encapsulates a complex bunch of issues into the straightforward explanation is very helpful in a number of ways.

But when the concepts that we are seizing on are fundamentally flawed, are based on not only bad science but really shoddy interpretations of the data, and they’re derogatory and dehumanizing – which Theory of Mind is – then, Houston, we have a problem.

All this being said, I would love to see some of the outrage channeled towards the root causes. Taking one author to task, only solves one set of problems. Taking the publisher to task will not solve anything, since publishers often consider themselves bold “truth tellers” in the face of ideological tyranny. Until we fully address and debunk the debilitating Theory of Mind hypothesis, shit like this is going to continue to happen. We will continue to see books like this. We will continue to see parents having these kind of dismissive, diminutive attitudes about their autistic children. We will continue to see therapists using pain and coercion to manufacture so-called “normal” kids who have been supposedly “lost” to a condition or disorder which has taken them hostage. We will continue to see our voices marginalized and derided and completely overlooked, because we will not be fully human. Our minds will not be considered fully formed. Our future will continue to be constrained by imaginations of people who are far too willing and eager to take experts at their word and line up behind that ideological Trojan horse.

As long as Theory of Mind is allowed to stand without challenge, as long as we fail to assign the proper responsibility for mindsets like Judith Newman‘s, as long as we pick battles at downstream points, we will continue to see these issues cropping up, time and again.

And until Simon Baron-Cohen retracts his hypothesis about Theory of Mind and takes full responsibility for the harm it has done to countless autistic individuals, no amount of boycotting, no amount of tweeting, no amount of Amazon reviews is going to stem the tide of material like this.

So, while I have serious problems with how Newman thinks about her son and talks about him in public, and while I do have only the deepest disdain for a publishing company that didn’t even bother to fact check or tone check one of their pet projects, I think the problem lies deeper. And as long as we continue to spend our energy on skirmishes, will be losing the chance to win the larger battle.

As much as I hate all the warfare metaphors, as much as I object to talking about this in terms of battles, we do have a serious conflict on our hands. And there are people being hurt, even killed, because of it. I, for one, can’t just sit idly by, while all this is happening. Nor can I content myself with the fact that a lot of people are learning about just what a troubling book “To Siri With Love” actually says. These are all signs of progress, these are all indicators that something, however small, maybe changing in our favor. But in the grand scheme of things, we have a long way to go before we are seen as fully human, and fully capable of complex thought, let alone agency in our own lives. We have Theory of Mind to thank for that, and until weed out that pernicious influence, we’re going to be fighting the same battles, squabbling in the same skirmishes, for the foreseeable future.

I’m tired.

Let’s fix this shit.


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The virulent #ToSiriWithLove debate – our very own #autistic #zombie movie drama

three zombiesOkay, I’ve had my good night’s sleep, and I’m ready to wade back into the fray. Yes, I’ve gotten triggered in a big way by all the brouhaha around “To Siri With Love”. But that’s not a bad thing, in itself.

I’m of a slightly different mindset about triggers than a lot of people I know. I don’t necessarily avoid them, or think they’re bad things. I mean, the whole experience is sucky, yeah. But that’s an experience I’m having. It’s not the real deal. And depending on my state of mind/body from one day to the next, I can have either an extreme (and borderline debilitating) response to something, or I can be like, “Meh… whatever.” And that tells me I shouldn’t structure my life around avoiding things that potentially trigger me, ’cause, well, just about anything and everything can trigger me, so what am I s’pposed to do? Just never do anything? Never go anywhere? Never read anything or watch anything? I can’t do that! I’ve gotta live my life! There’s so much to experience and explore and learn! I can’t be held back by fear or anxiety, even if it tears the living crap out of me (literally) at times.

Now, I do draw the line at horror and overtly, intentionally cruel violence done to people and animals. I won’t subject myself to that. It’s way more work to overcome, than it’s worth, so I avoid media about that as much as possible. That includes zombies. I’m really not a fan of The Walking Dead and other zombie movies where humans are forced to fight for their lives against the flesh-eating undead. And I don’t much care for the zombie themes in Game of Thrones. That’s put me off the show.

Here’s a weird thing — I feel a strange compassion for zombies, and I don’t think t.v. shows about destroying them is good entertainment. The whole dynamic just doesn’t entertain me. Maybe it’s because the threat of zombies, while real and justified in those dramas, seems to reside very much in people’s minds. It’s the thought of what zombies can do to you that terrifies people and prompts them to fight them. It’s the look of them, the fact of their existence, that sparks the violent reaction.

If zombies didn’t care about us at all, and just went about their own business, I think people would still be inclined to kill them. Because they make people uncomfortable. Zombies are unattractive. Herky-jerky. Hungry. Uncouth. They’re an expression of our dark side — and what nobody ever wants to become. And since they’re not even technically human anymore, of course, they’re open season to anyone with a rocket launcher.

It’s funny. I don’t even like zombies. The whole concept seems overblown and contrived. I went to see the “Night of the Living Dead” sequel “Dawn of the Dead” in college, in one of those massive outdoor movie theaters they set up on the quad, with hundreds and hundreds of chairs for all of us to sit down. I don’t remember much about the movies, other than the fact that I watched it and I rapidly went into sensory overwhelm and pretty much shut down. After all, the speakers were really loud, the sound quality was shite, the quad was full of people, and it was outdoors, an unfamiliar setting for watching a movie. I couldn’t relax at all. At first, that seemed cool, but then it got to be too much for me.

I stuck it out, though, and I completed watching the film. Then I did the requisite thing of hanging out with friends afterwards and comparing notes on the movie… insofar as you can compare notes on a zombie movie.

Anyway I digress. Or do I? It seems to me, the drama around “To Siri With Love” is the rough equivalent of a zombie movie playing out in the autistic community.

It applies in both directions — on the one hand, we autistic folks don’t seem to be considered 100% human in the neurotypical way. We’re considered gadflies and whiners, “developmentally delayed” malcontents who can’t take a joke, or even understand that there was a joke. After all, we’re autistic, so if we identify as such, we’re proclaiming that we’re diagnostically less-than, disadvantaged by our own admission. Autism is still considered a capital-D Disorder. Sigh. Forget about differences. Forget about divergent developmental profiles. The diagnostic manuals don’t provide much insight there. So, if we willingly “admit” that we’re autistic, we’re proclaiming our Disordered status — and that in itself is viewed askance by a society that prizes and rewards “normalcy” above all else. If you’re willing to admit you’re Disordered, that’s even more damning than the supposed Disorder, itself.

Maybe we should start just referring to ourselves as 299.00 (F84.0). That’s the DSM-V billing code.

Hmmmm….

On the other hand, the autistic community has its own villains. There’s the dehumanizing publisher, HarperCollins, that put the book out. There’s the whole system that kicked into gear to take the book from concept to marketable commodity. A whole lot of work went into this project over the course of years, and yet, nobody thought it was a bad idea? Everybody was fine with “joking” about a young boy’s prospective sex life, revealing personal details that will easily disqualify him from prospective employment when hiring professionals Google him, and a mother openly discussing her plans for taking legal control over his body and sterilizing him (maybe temporarily, but even so).

That didn’t raise a flag for anybody?

SMFH.

Seriously, what were they thinking? How did that book even make it to print in its current form? A whole boatload of people are pathologically clue-deficient, when it comes to basic decency, in my not-so-humble opinion.

And then there’s the oblivious author, who seems quite comfy in her echo-chamber-y corner of the world, where everybody gets her jokes, and she’s a hero, not a villain. I have to wonder what it’s like to live in a world where none of what she’s done or said has any consequence at all. In all honesty, what I see — rather than a Terrible Person who’s abusing her son (I haven’t finished the book, so I can’t speak to that for sure, yet, tho’ I do see some trouble spots) — is someone who’s been sheltered and provided for and shielded from the very dire realities faced by autistic folks who are a lot less well-off than she. And when I say “well-off”, I mean in terms of money, connections, buffering from the stupidities and brutalities of life, and general acceptance of who she is by an environment full of admirers (and not a few flatterers).

Judith Newman has been called all sorts of names, but ultimately, I think she just has no idea what she’s done. She’s also afraid to confront it. She was afraid to confront her son’s diagnosis (she said so), and she lost some really valuable data about what makes him how he is, in the process. She doesn’t have enough information to be making all the statements she’s made (but again, the publisher didn’t exactly stop her), and yet she forges onward, defending her right to say / write / publish / reinforce exactly the kinds of misinformation that makes it impossible for me to disclose my autism at work, and thus actually worsens already challenging conditions. Her refusal to educate herself, and then jump up on a “lived experience” soapbox to draw attention to her pervasive clue deficit, makes the world a lot less safe for folks who can actually be harmed by attitudes shaped by her limited world view and experience. She seems more comfortable in Paris, than she is in the America she’s helping to create. She can fly away, anytime. But the rest of us have to live here, in the world she’s helping to shape according to her (limited) sensibilities.

So, both sides have their Enemy in this drama. And that simplifies things, doesn’t it? The author and publisher can look at us as major buzzkills who are impacting their bottom line out of ill-mannered spite and SJW fervor. And the autistic community has another example of WTF is Wrong with the neurotypical world, and how it really can (and does) hurt us.

I, for one, am willing to walk the line between the two sides and examine both critically. I’m also willing to view myself critically, understanding (of course) that I don’t have all the answers, either, and in Newman’s shoes, I could easily create something that does some damage to someone, somewhere. Mwahahaha. Both sides in this kefuffle have their hurts — right, wrong, or imaginary — and they’ve gathered their compatriots to support their sides, but I think there’s much more to be gained from stepping back and really studying this situation. We can learn a lot about what’s wrong with the current popular climate around autism, and we can pinpoint specific things that need to be addressed.

Newman’s book is a veritable treasure trove of indicators of what needs to change, what needs to be informed, what needs to be directly addressed. As long as we get hung up on the hurt, we can’t think clearly. And we sure as hell are not going to make a substantive difference in changing that sh*t into something useful.

This is more than a zombie movie. It’s an opportunity. What we choose to do with it, is our business. Everybody can do what they like. I plan to do something constructive about it.

Let’s fix this shit.

Tonal issues with #ToSiriWithLove

Gus was six when finally a kindly neuropsychologist told us Gus was "on the spectrum." I don't remember much about that day. I do remember that John — gruff, stalwart, very British — climbed into bed with Gus that night and sobbed. Okay, so I’m wading through “To Siri With Love” by Judith Newman, and after a couple of days of intent reading, I took a break just to restore some order to my life.

And to get some perspective. It’s easy to get caught up in the brouhaha / kerfuffle about this book, just by reading all the tweets. It’s easy to have my judgement be clouded by raw emotion.

My alexithymia is a double-edged sword — on the one hand, it lets me wade through really problematic works without getting derailed by an immediate emotional reaction. Then again, the delay in sorting out just what emotional impact things have on me has the “downstream effect” of loading me up with recurring WTF?! flashbacky-like things that get distracting and intrusive and make it hard to sustain concentration on what’s right in front of me.

So, yesterday, I needed to take an alexithymia catch-up break and let myself just digest everything.

There are so many things about this book that are, well, diagnostic of mainstream society’s cluelessness about autism. The impact ranges from irritating to problematic to pernicious. And this book, in my estimation, doesn’t help matters any.

There’s a generally flippant tone to the book, which strikes me as disrespectful of others in the way consistent with the direction that mainstream media has taken over the past 10 years. For some reason, being obnoxious and callous is viewed as a character strength, as though you’re being bold and edgy with intentional assholery. I see this on television more and more — people (for some reason, particularly women — like the lead character in “American Housewife”) being loud and rude, and then being praised for being “real”.

Oh, that’s real, all right — real annoying. And, in the context of my upbringing with people who may not have been perfect, but had standards of behavior… that sort of writing is real unfit for polite society.

To whit – take the passage above.

And of course he got kicked out of the school for learning disabled kids. He wasn’t on drugs like they were. (I am not at all antidrug. I was just antidrug for inattention in a child barely out of nursery school.)

Gus was six when finally a kindly neuropsychologist told us Gus was “on the spectrum.” I don’t remember much about that day. I do remember that John — gruff, stalwart, very British — climbed into bed with Gus that night and sobbed.

In the ensuing months there were many tears for me, too, particularly around neuropsychological testing and schools. Neuropsych tests measure your child’s overall cognitive ability, as well as his areas of strength and weaknesses. When I tell friends I refused to look at the results…

“… He wasn’t on drugs like they [learning disabled kids] were.”

There are a lot of different ways to say something like this. The author could have said, “He wasn’t medicated to ensure his behavior was within their acceptable range.” She could have said, “The rest of his classmates were compliant, as a result of their meds.” Either of those two choices get the point across, but the author chose instead to say the other kids were “on drugs”, which has a whole lotta baggage that goes along with it. Nothing like doing a little borderline character assassination on 4-year-olds. And learning disabled ones, at that.

Classy. (not)

If I were a parent of a kid who had learning difficulties and/or was “on drugs”, I’d really pause at this sentence. It just doesn’t put them in a good light, and the parents would naturally be implicated in that allegation that their kids are drugged-up. Who knows why some children are medicated? I have reservations about how widely meds are dispensed, and under what circumstances. But I’m not going to describe 4-year-olds as “on drugs”. Technically, they may be. But there are other ways to say it, that don’t invoke the knee-jerk bias those two little words trigger.

Seriously, there is such casual misuse of language, such flippant choice of polarizing, judgmental words, that alone makes the book hard to read. I guess maybe it’s that double-empathy issue, where the neurotypical Newman can’t guess what the rest of the world is feeling, and/or just doesn’t care. Then again, the author didn’t act alone. There was a whole system behind her that made this all possible — including agents, editors and advance reviewers. Nobody picked that up? Nobody raised it as an issue? Hm.

And the reveal about her son’s autism diagnosis? She doesn’t remember much about her own experience (which surprises me), but she remembers enough to tell us about her husband’s distress.

Which paints a grim picture of the scene. Something absolutely awful  must have taken place, for her “gruff, stalwart, very British” husband to crawl into bed with his six-year-old son and sob. I was moved, myself. Then I realized what was happening, and I’m like, “Hey! What just happened? They just found out their kid’s autistic, and it’s wrecking their lives? What the actual f*ck?”

Tears in the ensuing months… cognitive tests… schools… I have no doubt that it was stressful, even traumatic, but the way it’s set up, it sounds like Autism Is To Blame(!) Autism Ruined Everything! Autism made her husband cry, and it brought her to tears, as well. There’s no talk about how the system made everything that much harder, how the diagnosticians may have been painting a grim picture of her child’s future, how at every turn, the standard-issue conception of autism was convincing these parents just how impaired their child was, and just how much help he needed.

The author goes on to describe Gus’s diagnosis as “devastating”. And if you take the system and mainstream party line about autism as gospel, well, yuh – it’s gonna be devastating. But the author doesn’t address the real issues at the core. Instead, she likens her reaction to the prospect of finding out what the real deal was with her son, with being a mouse facing it’s gruesome fate in an aquarium with a boa constrictor.

That seems to be one of the foundational issues with the book, as well as with the author’s ongoing defense(iveness) of her work. She fears the truth so profoundly, she won’t face it. This isn’t conjecture. She’s told the world. Unfortunately, the human system requires data to construct its version of reality, so in the absence of actual objective external facts, it looks within and fills in the various blanks with the tidbits of truthiness that feel right.

And then we get this book. A memoir (which lets the author off the hook for factual accuracy, because it’s a personal account) which is ostensibly devoted to autism awareness (but makes us far more aware of her ignorance and lack of understanding about autism, than the nature of her child’s neurodivergence), and sells tons of copies, hangs out on the New York Times Bestseller List for a while, and gets rave reviews by non-autistic readers, who are cheering her on during her prolonged struggle coming to terms with the blow(s) that her son’s autism struck to her otherwise bright future and family legacy.

Sigh.

So, yeah, the tone of the book bothers me a lot. It’s profoundly self-referencing in a way that highlights just how damaging it can be to be profoundly self-referencing. Not just for the autistic child she’s introducing to the world, whether he likes it or not, but for her, for her husband, for her other son, and for all the readers who think this book is just the “bees knees” and laud it as a “heartwarming” personal account that really made them appreciate just how hard it is to have a child with autism.

It’s snarky. It’s self-pitying. It’s alarmingly clueless about the experiences and emotions of others. It’s even violent (the author talks about wanting to punch someone in the face, which is a little to WWE for my tastes). It’s a little difficult to read because of the spacing and pacing — some of the paragraphs are two sentences long, and some sentences go on and on. It is funny in places, but I find that all the problems put me on edge so much, I can’t actually appreciate the humor. And many times, I’ve laughed, then stopped myself and said, “Hey… what did she really just say?”

It’s that sort of disarming … delayed… slam, that puts me off the most. Casting herself as a loving, caring mother (of course she loves her son, she says), and then describing his autism — one of the things that makes him expressly what he is — as “devastating”… it feels more than a little manipulative, and I’ve felt at times as though her sly insertion of bias, prejudice, and a sprinkling of eugenic impulse, has made me complicit in her work to build herself up by tearing her son down.

For the record, I sincerely doubt we’re going to see any sort of apology from Ms. Newman. Yom Kippur doesn’t come around again till September, 2018, so she’s got a lot of time to think about what she’s done and how it’s affected countless autistic folks and their allies, before she proffers and apology. But if she can’t even look at her son’s neuropsychological test results (which just scratch the surface of his whole being), I can’t imagine she’s going to take a close look at her own behavior, choices, and the artifacts thereof.

I’ll just have to use this book as Exhibit A in What Not To Do When You Write About Autistic People. And use it as a reference for what sort of harmful mindsets really, truly need to change for people like me to be considered full human beings with a right to a full human life.

We’ve got work to do, when it comes to claiming our autistic space and dignity in the world.

That’s for sure.


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I’d be too embarrassed to admit half of that stuff

So, I’m about halfway through that to Siri with love book, and I’m looking forward to being done with it. I’ve committed to reading the whole thing, and that is exactly what I will do.

I feel like I need to just go through it quickly again and score the passages based on whether they’re helpful or hurtful. There’s an off a lot of hurt in here, but it’s blended in with attempts at humor, along with some genuinely hopeful passages, but even some of the hopeful passages still have their downsides.

For example, take the accounts of the author interacting with ostensibly autistic kids when she was in grade school. One girl she avoided, another boy she tried to befriend, but that didn’t amount to much. And both of those accounts, I get that as a kid she was trying to do the right thing, but as an adult it still comes across a little pitying.

Having been the kind of kid that she talks about, all during grade school, it just barely begins to thaw the cockles of my heart. And whatever warmth may have sent in, quickly dissipated, in the coming pages.

There are so many really problematic passages, I don’t even know where to start. I’ll blog some more in a little bit, after I get some more reading done. Well I don’t share the sentiments a lot of people who are completely horrified by what she says, I do find it problematic enough that it does need to be addressed. And it needs to be addressed in an objective, fact-based, real world, socially contextual manner, so it’s not just about my feelings being hurt and my admittedly tender sensibilities being offended.

There’s a lot of offense in the book, but I think it’s much more productive to just let it all out in rational, logical fashion that doesn’t even hint at name-calling.

Here are some comparisons to consider when reading #ToSiriWithLove

three abstract people figures talking to each otherSo, the folks defending “To Siri With Love” are saying we shouldn’t take it so personally. We shouldn’t get all up in arms and accuse the author of supporting eugenics by wanting to keep the option to sterilize her son.

This whole thing seems so incredibly weird to me, because the complaints raised are really legitimate, but they keep getting brushed off.

It’s almost like non-autistic people don’t really think autistic people can feel, think, or experience life as fully as the next person. Or that they should…

And I have to wonder — how would people be responding, if the references to autism were replaced by references to, say, ethnic minorities, 15th Century Protestants… or (this is a very tricky one), Jews?

I grew up in a mix of environments. First, I lived in a small city that was more Black and Jewish, than it was WASP. Then my family moved to a very rural area populated by descendants of Protestant heretics who were hunted down and killed and chased all over Europe by the Inquisition and other various religious/state authority figures. Making generalizations about those groups, when I was growing up was completely off-limits. And it could get you hurt. I was in grade school during the rise of the Black Panther movement, and by god, it was so not cool to be openly racist (although many were). Plus, among the religious descendants, making light of generations of pain and suffering was a great way to be permanently ostracized.

You just didn’t do it.

And of course, it wasn’t done with Jews, either. Anti-semitism was not allowed in my home, not because we were Jewish (tho’ we have both Sephardic and Ashkenazi roots, many generations back), but because it was wrong.

So, why doesn’t that same rigor apply to autistic folks? Why is it okay for people to make generalizations about us, to laugh at us directly or behind our backs, to make clearly uninformed (er, wrong) statements about autistic capacity and character… when we’re standing . right . here? Again, it’s almost like we don’t count as people. And if you buy the whole theory of mind deficit idea, and you believe (as SBC does) that theory of mind is what makes a person “human”, the tom-deficient autistic folks don’t count as fully human.

It’s a mindset with a long, long history and plenty of precedents.

After all, being Black or Jewish or a Heretic was once seen as a genetic mark of inferiority. Just like autism is seen as a mark of developmental delay/disorder today. There are so many parallels in mindset and framing, it’s surprising that anybody with a Black or Jewish or Heretical history would even so much as dabble in the casual prejudice that dominates the public discourse about autism today — and has, for years and years.

But human nature is used to doing this sort of thing, and old habits die hard.

Especially when there’s an easy target on hand.

Are you tired of this yet?

I sure am.

Now, what to do about it…?

Deconstructing #ToSiriWithLove

bored emoticon mehIt’s time for my beloved afternoon ritual – a bowl of granola and a small demitasse of coffee. I have to watch my coffee consumption, ’cause — wouldn’t ya know — it actually causes headaches with me, rather than relieving them.

And I’ve got plenty of other sources of the headache that’s been dogging me for a couple of days. (Sidebar: I love the verb “dog” – I get this very clear visual and sense of a hound plodding diligently after a scent, weaving around, picking up speed here and there, but just keeping on the case. That’s how I feel like my headache relates to me — relentless, dogged, persistent.) Yeah, I have to watch my coffee intake.

Anyway, there’s this whole “To Siri With Love” thing that’s going on. Quite the drama. And the various voices have splintered into some pretty well-defined camps, where their allegiances and alliances are clear. The author has penned a response to autistic protesters, saying — among other things — that the book ‘Wasn’t Written for Autistic Audience’.

The Observer phrases it as “fir[ing] back”, in keeping with the wartime Zeitgeist. War on drugs! War on autism! War! War! War! Warning shots! Firing back! Sheesh. You’d think that war represented the ultimate extent of our behavioral range. Maybe, these days, it does.

Well, anyway. So, the author Judith Newman says

“This book really wasn’t written for an autistic audience,” she said. “It was written for parents, neighbors, people who may love and hopefully will work with someone who is on the spectrum.”

Um, okay. But, like, it’s all about autism, right? I mean, it wouldn’t even be a thing, if autism weren’t at the center of it. Right? Or am I missing something? The issue I take with this mindset — and the reason that I dropped out of a social science academic career — is that it capitalizes on something that’s not actually the domain of the person using it as subject material. I’m sure this is a clunky analogy, but it just feels like a lot of anthropological studies done decades ago (the Yanomamo in the Amazon, the Lakota of Pine Ridge Reservation), where the author provides a peek into a foreign world, derives a bunch of insights from that world, and then moves on.

I felt so uncomfortable with that approach, that I dropped my cultural anthropology studies and focused more on my writing. I’m still uncomfortable with that line of academic work. Even moreso, these days, when I’m an active and vocal member of the autism community. I’d probably be a card-carrying member, if we had an autism card… though I’d probably keep it in my wallet, because like being queer back in the 1960s, being autistic these days has a way of working against your standing in “polite” (or as the case may be, joking) society.

I’m not digressing… I’m actually making a point, here. See, with every one person who reads “To Siri With Love” and loves, just loves(!) it, and doesn’t stop to question what’s going on beneath the surface, there’s the distinct possibility that they may take the author at her word, follow her example, and think nothing of wondering aloud of autistic people can think. Or feel. Or have a hope of a future.

Books have an eerie way of turning people into experts, especially books that come out of mega houses like HarperCollins. And when authors blithely gloss over some pretty distressing experiences, like throwing out their kid’s beloved stuffed animals, and make the whole thing a joke, it gives everybody license to do the same. Not only to get rid of sources of comfort and relief, but to make light of it.

For the record, I’m 52 years old, and I have a stuffed meerkat I regularly hug tightly to cut down the pain and sensory distress I feel when I’m lying in bed and the sheets and blankets are burning my skin. I take “Baby” with me on all my business trips to corporate HQ halfway across the country, and I rely on that soft presence to help me sleep at night, when I’m in extreme distress from a change in routine, diet, surroundings, work schedule, coupled with the heightened demands of being ALWAYS ON in the Halls of the Overlords. So, to me, the idea of throwing away an autistic child’s stuffed animal seems incredibly callous, even cruel.

But don’t get me wrong — I don’t think the author is the abusive bitch a lot of people are casting her as. I think she’s main mistaken and ill-informed, with maybe some emotional issues that are blinding her to what’s right in front of her. I feel a lot of compassion for her, actually, because her lack of information and insight just glares off the page at me.

To whit: She doesn’t live in the same apartment as her husband. That’s in the book, so I’m not revealing anything she hasn’t already disclosed. She also talks about how her husband (who ostensibly shares many ‘austistic-like’ traits with her diagnosed autistic son), cannot stand to live in the same space as she. It’s too chaotic, he says, according to the book. So, my next question is — if it’s too chaotic for her husband, who’s similar to her autistic son, mightn’t the environment actually be a bit chaotic for Gus? That seems like an obvious connect to me, and rather than fretting about why the boy is behaving so …. autistically… I’d be inclined to look at the environment he’s in and wonder if maybe that’s producing stress (and a steady stream of stressors) that are exacerbating his difficulties.

I’d want to take a close look at his surroundings when he’s at his most challenged (and “challenging”) to see if it’s too bright, too loud, too hard, too sharp, too rough, too… chaotic. I’d want to modify the environment in specific ways to observe the effects. And I’d wonder if maybe living in the middle of NYC, with all the noise and movement, might actually play a role in his difficulties.

I’m not saying, move out of the City. I’m just saying, look at the environment. And look at the circumstances prior to being in the environment, which might be adding up to an increased stress load over time.

As I make my way through the book — and it’s a pretty fast read — I’m struck by how smoothly it flows. And I’m also struck by how easy it is to gloss over certain passages, as one idea merges into another. The references to theory of mind (heaven help us) just kind of blend in with an air of authority and matter-of-fact well-that’s-just-how-it-is. That makes it really easy to miss the references which, when taken by themselves and really considered closely, are just a tad alarming.

On the one hand, that smoothness makes the experience of reading it a lot less traumatic than all the pointed discussions about it online. In fact, my physiological reaction to reading the book itself is a lot less “jangly” than the experience of seeing all the tweets and posts and whatnot digging deeper into the ideology.

In the end, it feels like the author never intended any harm. She’s providing a window into the world that was her mind and life, several years ago. At the same time, though, she’s not taking seriously all the concerns that are being raised, and in the end, you have someone who can get her kid on camera in Los Angeles in just one phone call with a very connected friend, lecturing a marginalized and disadvantaged bunch of people about how they shouldn’t take it so personally.

I guess she doesn’t realize how much is at stake for us. Because she’s not in our position.

The great irony is, the attitudes she espouses and incorporates into her best-selling memoir are exactly the kinds of mindsets that reinforce our systemic disadvantage. The fact that she doesn’t take it seriously, and she’s basically telling us we can’t take a joke… yeah, that’s disappointing on more levels than I can count.

But back to the fun stuff. My granola was delicious, and so is this last little sip of coffee. Along with the snow today, those are some of the bright spots in my weekend.


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