217. Intent vs Impact, or What Face Are You Showing Me? Part 1

A warning: I am cranky, so just know that before you wade in. It doesn’t change that I believe in what I’m about to write, but I am not in the mood to say it cutely, or add hashtags giving various people a pass and whatnot.

I know I’ve talked about this before, but it is sometimes very disorienting and just a Bad Idea for parents like us to try to converse about the realities of our lives with parents of non-disabled kids. People ask, and we mistakenly believe they really want to know; or we are fatigued and forget to keep all the filters up that we normally would, and bam! we are suddenly subject to weirdness.

One: Sometimes, parents of neurotypical kids end up bragging about their kids as if to say “We know it’s pleasant and inspiring to hear about kids like mine. Pull up a chair and listen about their robotics and dance shows, and this parallel universe will soothe your mind. Also, being a high achiever is hard, so my kids struggle too.” I love my friends, but seriously, there are plenty of people to applaud these very standard issue Desi stories of youthful accomplishments. Please save them for your friends who get more sleep than I do. I would rather know something less halo-polishing about your kid because that way, I can feel more genuine affection for them. If you don’t want me to know anything less than perfect about your kid, well, that means we aren’t close, and we are back to I have to remember not to be so foggy that I forget my filters when I chat with you.

Two: If I am repeating a funny or endearing incident from my household, I invariably have to “sanitize” it so that it sounds less age “inappropriate.” The dissonance between how much I adore and enjoy A’s sometimes childlike shenanigans and romps vs how I end up making him sound like a biker gang member who just happens to like the Barney theme song makes me have to take soul breaks from interactions. Again, this way of dealing with people isn’t authentic, and I don’t wanna anymore. It’s easy to internalize the bad feels, and for me to scold myself for not just being more truthful. But people often don’t welcome it, or respect A’s reality, and would rather hear stuff that doesn’t make them uncomfortable.

Three: UGH. I hate the ways in which parents of NT kids will insert their own needs into whatever I might be expressing.

If I mention Project Lifesaver (which is a GPS tracker for people who tend to wander), I will be met with “I could have used that too! When my kids were toddlers….” I cannot tell you how many times A gets compared to someone’s kid at the age of 18 months or whatever. First of all, my kids were once that age too. And it passed. So I am clearly speaking of late teens elopement, and parents who are no longer in their 30s and 40s.

Plus it is amazing how many people exaggerate the claims of potential child trafficking. Yes, it is panic inducing to lose sight of your kid in a public place. But no, not everyone is a trafficker; and most of the exhausting fear is connected to vigilantism directed at parents if they should appear to fail in front of critical bystanders.

And I want to be clear how severely I am saying this: Our autistic kids are rarely as cherished and beloved by the random public as your kids are wont to be. So we are worried about them running off because people are often not gentle with them, or knowledgeable about how to even interact with them, and things can go sour, to our kids’ detriment. While your focus might be on removing “abnormal” behavior from the public sphere, ours is too often on shielding our kids from people who are scared of them, and then might weaponize that fear.

Four: But you know what is worse? It’s when people who work with autistic kids say this crap. And they do. I don’t even know why I expect them to do better. Maybe it’s time for me to retrain my brain wiring so that the hit of the microaggression won’t knock me off my feet so much.

This is hardly the only example, but we were talking to A’s school peeps today, and I was mentioning the idea about AI babysitters. Immediately, the people we were talking to said “I need that for my family too.”

No, chances are you do not. Please allow me to weave a dream about actually having reliable childcare without you centering yourself. How many of you need constant care for a 16-year old? I am not even remotely interested in the answers.

But this is my periodic reminder not to try to be a real person in Outside World. I don’t know how we are supposed to talk to his school team about whatever issues A is having while suppressing so much of our reality, but this is actually what a marginalized life is like on the inside. We are not invited to have an equal voice outside of our safe spaces. We must modulate our speech without using irony, excessive emotion, or reminders that we are culturally not of the mainstream. Always allow mainstream outsiders to decide and maintain the status quo. Always defer to their definitions of what normalcy is.

Stress is the natural outcome of such constant suppression. But showing that stress is also a no.

Stay tuned for Part 2. Or don’t.


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