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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Is un-diagnosed #autism why my sense of humor is so dark and (let’s admit it) twisted?

grim-reaper-hug-meLet me first say that, in no way, shape or form, am I saying a dark and twisted sense of humor is a bad thing. I think it’s fun! It really brightens my day in the most challenging of circumstances. And at times, it’s so exuberantly bleak, that people are alarmed. I have to tell them to calm down. I’m not REALLY planning to cut off my left pinkie finger to collect accidental dismemberment insurance, so I can pay my prescription drug bills for the next year. But the thought of doing so gives me a good laugh, and a big sigh of relief. The only problem is, after a year, I’ll need to cut off another finger (or maybe just part of one – I need to check my insurance coverage details), to pay for more meds. It never ends. I’ll need to budget my body parts carefully. And choose wisely, so I don’t accidentally cut off my ability to make a living. Voice dictation only goes so far, after all…

Okay, okay, calm down. Like I said, I’m not REALLY planning to cut off my left pinkie finger to collect accidental dismemberment insurance. I’m just thinking about all the different Plan B’s I might have handy. Or maybe that’s really Plan B, Plan C, Plan D — since you can’t have more than one Plan B. There’s only one “B” in the alphabet – just like there’s only one pinkie finger on each hand.

Anyway, I’ve noticed that when things are very tight with me, and I’m feeling boxed in — which is actually not infrequent — I turn to dark humor. I joke a lot about death… about finding either elaborate or exciting ways to finish out your last final days, so you go out with a fun “bang”… about horrible things happening.

It all sounds pretty dire to anyone who doesn’t share my same sense of humor, but to me, it’s just a reflection of my life as it is, as it’s been, as it’s always seemed. I’m stuck, trapped, stuck in a veritable hostage situation, playing along for the sake of not getting my ass metaphorically or literally whooped, trying to make the best of a genuinely problematic situation. Life can be sweet, I’ll grant you that. But for people like me, locked away in our camouflage cages, with precious little chance to venture out when other “neurotypical” people are around, it’s far less tasty and delicious than all those YouTube animal babies vids would have us believe.

I didn’t know I was on the spectrum until I was about, oh, 32 years, 8 months, and 6 days old. Give or take a week or so.

I’m now 51, so I’ve known I’m on the spectrum for, oh, about 18 years, 6 months, and 5 days. Roughly.

I tried to get diagnosed in 2008, but that went badly. And essentially, I’ve been muddling along this whole time. Knowing my own situation helped in certain key ways, like with job selection, friends selection, and structuring my life in ways that make sense for me. But that’s all been “autistic” — self-directed — modifications. Nobody else has really helped me out with it. And the people I hoped would/could help, simply refused.

Yeah, I’ve felt blocked in. For a long, long time. And a certain sense of desperation has followed me through the years. I’ve been subject to ongoing depressive states since I was little kid. Things are rarely all sparkly and shiny-clean for me. I’m not sure if they really are for anyone, but when people describe what depression looks and feels like, I’m like, “Isn’t that just how everyone is?” Because that’s very much like I’ve always been. It just doesn’t show. Because if you want to have a decent life and get along and not turn into the butt of others’ teasing and persecution, you go along. You cover up. You camouflage, mimic, and blend.

So, to all those psych folks who say women are so good at blending in and hiding our autism, so that’s why they missed us… they can kiss my autistic ass. Because I never did it for fun or out of “good taste”. I did it to keep from being violated. I didn’t do it, to advance myself. I did it to keep from being beaten, persecuted, preyed upon, and cast onto the rubbish heap of society. I didn’t sprinkle magic fairy dust around myself for the fun of it. I did it because I didn’t want to die. Because I’ve always been keenly aware that if I didn’t watch myself, if I didn’t manage myself, if I didn’t keep myself under wraps, some pretty sick and distressing things could (and possibly would) happen to me.

And that’s a hell of a reason to do anything.

But that’s the deal with me. It’s always been the deal with me.

When you’re contemplating your own erasure on a regular basis and treading water as fast as you can to get over every advancing wave in that roiling sea of sensations and surprises, death and pestilence and existential horror and all that ilk kind of become kind of funny in their own way. Like the Monty Python “Meaning of Life” movie, when the Grim Reaper comes to visit. That was my favorite scene. Because I could relate.

I’ll have to watch that again. I need a good laugh.