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.
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.
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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