walkitout (walkitout) wrote,
walkitout
walkitout

Never, Ever, Ever Underestimate the Prevalence of Nutters

Long ago, I used to use "nutter" as a login, a handle, a userid. I used it because I absolutely adored Gaiman and Pratchett's _Good Omens_, and in particular, I adored Agnes. I did also recognize that I was self-labeling as crazy, and I was really good with that part, too.

Because I grew up as a JW, and because my father was sort of top-end working class (electrician), and because my early childhood occurred in the 1970s, my encounters with the "helping professions" and other mental health professionals were profoundly limited. That is, our primary care doctors tried to get us to counselors and our parents said no, because our religion said that that would cause us to lose our faith. So suicide attempts, anorexia, bulimia, depression, and what were, in retrospect, psychotic breaks (not all of this was me, mind you) went entirely unmonitored, untreated (well, I think there may have been vitamin B shots for the anorexia) and poorly managed. Just as it took a while to get the hang of voting and otherwise engaging in good citizenship, it took me a while to get the hang of caring for myself mentally and emotionally, after I quit being a JW. But eventually, I paid attention to my problems, deployed my considerable cognitive resources, and somewhere along the line a boyfriend (possibly more than one, if I'm being honest with myself) asked me if I knew about autism, and when I finally paid attention, I went, hey! There's a particular kind of crazy that is Me! Woot! I had some issues (still do, some days) with whether this is legitimately a disorder in all cases vs. an alternative way of being, and I am a Fervent Believer in the Good Things associated with neurodiversity. But while I continue to believe that age-peer, highly regimented schooling is Not the Best Way to Raise Kids, I also recognize that we live in an imperfect world and that we maybe don't have infinite resources to make everything absolutely the best it can possibly be for everyone all the time, and sticking 20+ kids in a classroom pointed towards an adult at the front to learn stuff in a well-defined and consistently presented way is not an unreasonable compromise.

I like to think this is reality based thinking about how to do things. I sort of disapprove of idealism/True Belief/ideology/faith (cf. raised a JW and am not any more).

Statement of perspective out of the way, I'd like to introduce you to this gentleman:

http://www.salon.com/2013/09/21/thats_not_autism_its_simply_a_brainy_introverted_boy/

He has written a book which has generated a lot of seemingly favorable (no zero star, many 4 star) reviews on Amazon.

http://www.amazon.com/Back-Normal-Ordinary-Childhood-Behavior-ebook/dp/B00C0ALGKQ/

The lone 2 star review is remarkably restrained: be really careful with this book; it might lead to a delayed dx. But even the 4 star reviews contain statements of this nature:

"I have a kid on the autism spectrum (yeah, I'm pretty sure) and yesterday his brother said "Do you think he's really autistic? Or is he just weird?" It's a fine line, sometimes. If you have a kid with difficulties, this book is really worth reading."

So, basically everyone else's kid is over-diagnosed, even tho the reviewer accepts the legitimacy of the dx for their own kid.

"However, I feel that the author takes the enormity of the mis/over-diagnosis and mis/over-medication crisis a little out of context where he fails to take into account how utterly powerless many parents are to change their child's experience in the classroom -- which for many is over-regimented and abysmally lacking in the normal physical outlets required by healthy, active children - without resorting to seeking out a literal *label* that is the ticket to getting needed accommodations or educational assistance. In other words, teachers are overburdened, budgets are shrinking, all that boring stuff..."

That's really a surprise to me. I was told, right from the very beginning, that the reason to get a dx for my kids was to ensure they received appropriate support from the school system. It has _always_ _always_ _always_ been about integrating with services. It wasn't about drugs. It wasn't about defining pre-emptively what might or might not be possible for them. It was about making sure that they didn't get slotted into some category like "bad kid", when there was something going on with them that wasn't about how hard they were trying, or whether they were from a good home or whatever.

But here's a real doozy (again, from a 4 star review!): "Unfortunately, Gnaulati doesn't work very hard to help distinguish real ADHD/bipolar/autism from false forms: after complaining about fuzzy, over-general definitions from other professionals, he explains the difference mostly in terms of how interacting with different children makes him feel. Likewise, after regretting the tendency to seek medical rather than psychological explanations for child behaviors, he turns to evolutionary psychology and theories of inherent gender difference, as though these aren't based on similarly overblown notions of how much we understand about the workings of the brain. If there's a solution to the problem of over-diagnosis, it's actual scientific rigor, not trading one set of facile assumptions for another."

So despite some extremely serious criticisms of this book, reviewers nevertheless really want to believe what is on offer here. Again, from a 4 star review: "I agree with him, so I have a bias to like the book, I suppose."

This is quackery. I know that a lot of people really, really, really wish that the higher rates of autism diagnoses "proved" that these weren't really autism at all. But I know that my kids are basically just like my sisters and I were when we were little. And our parents when they were little. And aunts and uncles and cousins and grandparents and the more genealogical research I do, the more pervasive this shit looks in my family tree (also, the research that says that ADHD and autism and schizophrenia all tend to show up in relatives of each other? Alas! I have entirely too much anecdata to argue with that thesis.). And while many of us grew up and paid our bills and got jobs and were able to sustain some relationships, we didn't stop being autistic, just because we very carefully avoided ever encountering mental health care, much less getting a diagnosis. We were just miserably bad at social stuff and had weird neurological problems (seizures and migraines -- hell, even the men in my family get migraines. I didn't even know that was _weird_ until a year or so ago) and epic sensory problems. Epic. I spent a lot of time when my kids were young and I was working actively on my reproductive website stuff laughing my head off at people who had a kid with allergies or sensory issues and how difficult it was to find detergents and shampoo and wtf without fragrance. I had to find all that stuff for myself -- and a husband that was the same way so we wouldn't drive each other nuts (well, not nuts in that way, anyway).

So the next time you're wondering what's going to happen when all these little kids diagnosed with autism are All Growed Up, well, remember that there have been untold generations of people with autism before them who didn't receive any accommodations or assistance or supportive therapy. Hopefully, what we are doing will help, at least a little. If, on the other hand, you quail at the idea that the world has that many fucked up, broken, crazy people in it, well, try very hard not to be one of the fucked up, broken, crazy people by descending into denial. Diagnoses are descriptions that offer opportunities to make a better world in the future, through actions we take today. Sometimes that's a prescription for pharmaceuticals. Sometimes that is a suggestion to try therapeutic riding, or a placement in a substantially separate classroom that can be modified in a way to enable a child to learn who isn't able to learn in a mainstream classroom. Sometimes it's a recognition that we'd better pick a career, friends, and romantic partners who are compatible with our particular makeup. (Perhaps someday soon, we'll have data on the efficacy of Disney therapy!)

Is that such a bad thing?

If you think it is, you're just a different kind of nutter. Or, to take a moral perspective, rather than a therapeutic one, a crappy human being.

The last thing I want to point out about Gnaulati is that he exhibits an unusually clear case of how diagnostic communities behave. There were practitioners who would ONLY diagnose autism in conjunction with ID (intellectual disability, you know it by other words that Polite, Well-Educated people don't use any more, altho the abbreviation, MR, is still occasionally deployed). After all, Very Intelligent People must not be Like Those People. There were other practitioners who would ONLY diagnose autism in the absence of ID. You could think of this as more or less like refusing to diagnose pneumonia in someone who had asthma, or requiring pneumonia before diagnosing with asthma. If you squint just right, it sort of looks reasonable, but anyone who has internalized the idea that autism is primarily a disorder of social communication, with a need for routine and some assortment of sensory/neurological stuff going on, is going to realize that autism and substantial intellectual capacity are more than merely compatible -- but often occur separately. That relentless focus on details turns out to be pretty incredible in some contexts, but does not insure measurable intelligence, nor does measured intelligence require a lack of social skills. Gnaulati has outlived his diagnostic community, and is thus forced to take his approach (if you're smart, you must not be autistic! Bad diagnosis!) to the lay public, as he has lost the battle at large so thoroughly that all those efforts to keep Asperger's (with its mandated normal or higher IQ) separate from autism have definitively failed.

When I started thinking about writing this post, I was In a Mood. I stumbled across the Salon excerpt when I was trying to better understand what people meant by the term "introvert" (it's not new to me -- it has just always bugged me and I was trying to articulate why I thought it wasn't a good category to someone and failing), and it just made me angry. I felt like the 2 star reviewer: this is a dangerous book, a dangerous commentator who might well encourage a kind of denial that is bad for the person who needs help, bad for the family trying to help that person, and bad for future society that must somehow manage that person if they do not receive effective assistance in learning to live in the community without hurting themselves and/or others. And I wanted there to be someone to say, hey, this guy is awful. Don't listen to him. What I kept seeing instead were these seemingly favorable comments. But when I drilled down, I started to understand that the favorable comments really didn't take Gnaulati's thesis all that seriously. People really believe in their kids' diagnoses, and they believe that diagnoses are a reasonable real world strategy for connecting kids to the help they need to learn. They just sort of wish that we could all live in a world that let us be our own, nutter selves without having to interact with other people in a structured way. And I guess I can't really argue with that wish, only observe that wishes aren't plans.
Tags: autism, not-a-book-review, our future economy today
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