Saturday, January 11, 2020

The Unrecovered

Hercules and Antaeus
Photo © LluĂ­s Ribes Mateu | Flickr / Creative Commons 
[Painting of the Ancient Greek demigod Hercules and the giant Antaeus, c. 1570,
Oil on canvas. from the collection of the Wadsworth Atheneum Museum of Art.]

Emily Paige Ballou

This is the reaction I wrote in response to the article The Kids Who Beat Autism, originally published in the New York Times Magazine in 2014. While I have no doubt that the parents and therapists profiled believe they have these kids’ best interests at heart, I was—and am—angry and frustrated at the celebration at their “recovery” on the part of people who are not the ones who are actually going to bear the consequences for the rest of their lives.

I’m sad for the kids who are.

The parents, teachers, and therapists and researchers without a clue who celebrate “recovery” because they still wrongfully define autism as a fixed set of permanent inabilities, rather than see autistic people as complete human beings, intrinsically capable of learning and growth—

  • Are not the people doing the work of passing, and are not going to be the ones to find out first-hand just how long it isn’t actually sustainable.
  • Are not the people who get told we’re too articulate to be autistic but have to ration our hours of speech per day.
  • Are not the developmentally disabled women who suffer a sexual abuse rate of around 90%, no thanks to the compliance training that teaches us that allowing others to control our bodies is desirable behavior.
  • Are not the kids pulling themselves through school without disability accommodations.
  • Are not the kids getting their supports and accommodations pulled out from under them when they lose a diagnosis.
  • Are not the kids getting chided and belittled because their challenges and oddity are now seen as choices of defiance or misbehavior.
  • Are not the people being lied to about who they are.
  • Are not the people who are going to wake up one day 20 years from now with no idea who they are or how they got there.
  • Are not the people who will spend a year and a half having a meltdown with no idea of what’s happening or why.
  • Are not the kids being taught that accepting yourself as you really are and as you really work, would be the worst possible thing.
  • Or that the “best outcome” possible for you is to spend the rest of your life pretending to be something you’re not. Even if that means leaving you with anxiety, depression, or obsessive-compulsive disorder.
  • Are not the people who are going to have to re-learn where they belong in space and time and how to live there.
  • They will not be the people giving these kids a community and a support system years from now. They will not be the ones who know what to do when they start having breakdowns and burnouts.

They will not be the ones supporting their kids in learning self-acceptance when all their passing skills fail because they are actually incompatible with functioning in the long term.

We will.

They will not be the people there to pick up the pieces.

We will.

There is, indeed, hope for the kids featured in this article, for joy and authenticity. This article could’ve come with a spoiler alert; autistic adults know the end of this story. We know it many times over.

It’s just not that these kids live out their lives as non-autistic people.

Tuesday, December 31, 2019

I Identify As Tired

Hannah Gadsby in the Netflix special Nanette
[image: Australian comic Hannah Gadsby, speaking into a microphone.
White text at the bottom of the image reads, "I identify… as tired."]
Emily Paige Ballou

I started wondering something explicitly for the first time recently (I don’t even entirely remember why), and that is: How many autistic kids who fly under the radar for years, or forever, present primarily to non-autistic observers as exhausted?

I was wondering this as I was recovering from the end of a production a while back, and my main problem was just that I was so exhausted. If I got up at 10:00 AM, I needed a nap by 4:00 or 5:00, and not for having done all that much in my waking hours. I couldn’t exercise the slightest amount of group planning ability outside of work. It took my writing brain a couple of months to even think about coming back online. Transitions of any kind, never a picnic, became the worst.

But mostly I was just so tired.

And as I look back on being a kid, obviously there was so much that I just had no frame of reference to explain, but one of the things that was apparent, even to me, even when I was really little, was that other people didn’t think I should be as tired as I was. In grade school I was too tired to talk to a friend on the bus ride home instead of just staring out the window at the sunlight flickering in the trees. In middle and high school (on the afternoons I got to come home), I needed a two-hour nap before I could regroup and start thinking about dinner and homework, and people just didn’t believe I was too thrashed from a day of school to do much of anything else before that happened.

At least twice, I remember being made fun of by older camp counselors for asking to be allowed to go to sleep in my own bed on the last night of camp instead of to an all-night dance party or lock-in, either because I knew I would need the energy the next day, or was just so tired I wanted to cry.

While there were things that I couldn’t do at all and had no way to justify why, a fair amount of the time, it wasn’t that I just flatly couldn’t. It was that I could do what was demanded by school or social activities, or at least perform a superficial but apparently somewhat convincing pantomime thereof, for a relatively limited amount of time, and it took absolutely everything out of me to function that way until I couldn’t anymore, and then people didn’t understand why I couldn’t anymore.

And sometimes it was actually that something more specific was the actual problem, like having trouble transitioning, or not having the verbal bandwidth or social knowledge, or having motor planning trouble. But I didn’t have words for any of that, and the closest approximation I had available was often “I’m too tired.”


“I don’t know.”

I mean, I didn’t.

I’m more embarrassed of it now than I was when I just didn’t know that I shouldn’t be that tired, and what the reason was. It’s one of the probably top three things I feel like I have to hide, in terms of being autistic and doing what I do for a living.

That me sitting here having a conversation in a way that reads as baseline normal to you is so high-energy that I’m going to start to break down from it in about half the time as you and have to go home and collapse. That to you that’s just how humans work and to me it’s like performing an extremely high-level game of mental and physical coordination.

That there are a lot of things I’d like to accomplish but I flatly don’t have the energy.

That when people suggest I do things like go to grad school or run for office, it is hard to admit, “Okay, do you know how much of my available energy I am currently using just to hold my life together to the extent that I am right now?”

All of it. It’s all of it. I’m not just skating here.

And that’s not even from masking or passing or pretending not to be autistic. That’s just getting the stuff done that I have to get done.

That what you are talking about is so far beyond my capacity to think in extremely abstract ways and be on the hook to communicate about for that much of the day and do high-level strategic planning/networking and also do the work of holding my life together. And also write papers?

Why don’t I run for office? Why don’t I teach college? Because I can’t actually speak for more than about two cumulative hours per day, and it helps if even all of that time isn’t consecutive; why don’t you become an astronaut if that’s what you really want? Oh, what’s that? You don’t have the resources, either internal or external, to go back to school for a terminal degree in math or physics or astronomy followed by years and years of physical conditioning?

Okay. That’s close to the energy differential we’re talking about here.

“Twice exceptionality: When your test scores write checks your actual abilities can’t cash,” is how a friend put it once.

There’s a presentation of autistic reaction to unmanageable demands that’s been called Pathological Demand Avoidance, and while I have a lot of problems with its framing, I think it may be “real” insofar as being a recognizable pattern of coping strategy in the form of exhibiting disproportionate, preemptive or protective defiance to what seem like normal, commonplace demands to a non-disabled adult.

I think there might be another one in which autistic kids, no matter what they’re feeling, try and try and try and try and try to meet adult demands to the point where they wear themselves out trying, or get fed up with the Kafkaesque paradox wherein no matter how well they manage, the outcome is even heavier demand on their limited abilities to manage.

I wonder, in light of admittedly anecdotal personal experience, how many autistic kids—not that they don’t show other signs, but which might be misattributed or considered “quirks” or misbehavior—primarily have it noticed that they are so frequently so tired, and there’s not an obvious physical reason why?

To the next person who says to me “How are you really disabled?” or “I don’t see how you’re autistic,” I’m going to be hard-pressed not to reply “I am so goddamned tired.”