Friday, May 28, 2021

On “Energy Budgeting” and Acknowledging Internal Autistic Realities

Anne Corwin, as a child of about 7 years old with pale skin and dark hair with bangs. She is sitting on a tree branch while leaning against the trunk and looking into the distance.
Photo courtesy the author.
[image: Photo of Anne Corwin, as a child of about 7 years old with pale skin
 and dark hair with bangs. She is sitting on a tree branch while leaning
against the trunk and looking into the distance.]


By Anne Corwin

Too many of us (autistic people) grow up knowing only how to run on momentum, and operate in a depleted state much of the time without even realizing it… until we “crash,” leaving us and everyone around us asking, “what happened?!”

Regardless of whether we are put through formal ABA programs as kids—or even whether or not we’re accurately diagnosed as children—autistic folks often end up learning the polar opposite of “energy budgeting.”

This is partly due to a defect in how our society at large operates, of course—but that’s a whole other gigantic discussion beyond the scope of this article. There are still things everyone can do on a more localized scale to help improve autistic people’s lives, and give us the tools to better navigate reality while maintaining a sense of self-respect and autonomy as we grow up.

What I want to cover here is (a) how adults in an autistic child’s life might better equip them to budget their energy going forward, and (b) some of the things I’ve personally found very helpful as an autistic adult myself in this regard. 

One thing parents, teachers, and others in a position to teach and care for autistic kids can do is provide a wider range of potentially relatable sensory/perceptual experience descriptions. 

Most adults will comment regularly on how things in their environment affect them, e.g., “wow, this is some seriously spicy salsa, it’s burning my tongue!” “ugh, I stepped in a puddle and now my socks are wet, it feels so gross!” “I love how this blanket is really soft but not too hot,” etc. 

All kids pick up on this sort of thing (yes, even when we don’t look like we’re listening!), and it ends up built into our conceptualization of what things may induce certain sensations. 

However neurodivergent folks grow up, by and large, missing out on having many of our own inner state descriptions modeled and mirrored by the majority of those around us. While autistic experiences are of course human experiences, and while certainly we can relate to much of what those around us describe, we are inevitably going to have experiences that fall outside the Venn diagram where “stuff nonautistic people experience” and “stuff people of all neurotypes generally acknowledge experiencing” intersect. 

This lack of neurodivergent models can result in growing up with a limited ability to connect experiences with distress (or even with joy!), and, by extension, a limited ability to plan and account for our sensory/perceptual profile in going about our lives. But this isn’t inherent to autism—rather, it’s inherent to lacking a frame of reference for our experiences, and those around us can do a lot to help alleviate this.

As a youngster, it didn’t occur to me that maybe not everyone could hear a cathode-ray tube TV even with the volume all the way down, or that some people could actually pick one individual voice out of a noisy room, or that not everyone found (most) dresses or ‘pilled’ sweatshirts horribly uncomfortable. Or that other people didn’t experience it as a near-physical wrenching sensation in the brain when someone expected them to switch activities abruptly.

I did sometimes attempt to describe or complain about these things, but nobody really knew what sensory differences were at the time, and trying to determine how to get to a place where my objections to certain things were considered legitimate often felt like throwing darts in a dark room. 

For example, the ‘pilled’ sweatshirt thing—after a fleece garment is laundered enough, it develops a horrible, grainy, scratchy texture that made (and still makes) my skin crawl. As a child, sometimes people would give me secondhand clothing items that had this texture, and I was constantly trying to figure out how to avoid being made to wear them, ultimately coming up with some truly absurd statements, such as “I can’t wear that because someone might have died in it, and the little bumps inside the fabric might be full of dead person skin cells.” (I guess I figured if “this is uncomfortable to the point of being unbearable” wasn’t enough to convince adults my objection was legitimate, maybe invoking something scary—like dead bodies—would be!)

It took me until adulthood to connect the fact that I felt and reacted more intensely to some things, with the fact that I was actually experiencing these things more intensely due to my neurology. And up until I made that connection, all I knew was that in some situations (holiday gatherings, malls, etc.), I “randomly” found myself feeling vaguely ill, and/or like I “didn’t really exist” (which I now recognize as dissociation; I used to privately refer to it as “mall hypnosis” because of how often it happened in shopping malls).

Getting back to my point about how adults can help kids—even just commenting on what experiences are possible for someone to have would likely go a long way toward helping autistic kids connect inner sensations with sensory and perceptual inputs. Even if you don’t experience something yourself, you might occasionally note the possibility of that experience, e.g., if your kid refuses to wear socks, you could comment that, “some people don’t like the feeling of this hard bit—the seam—digging into their toes, let’s find some socks that don’t have that and see whether it feels better?” It could end up that your kid just hates all socks, but it’s worth giving them some tools and context to help figure out what is so distressing.  

Our society tends to discourage “complaining” or coming across as ‘weak’ or ‘sensitive.’ I think it would be a huge improvement if we could work toward normalizing acknowledging distress—and conversely, on acknowledging delight. (And this definitely doesn’t require language, spoken or otherwise; our experiences are real and valid regardless of whether we or anyone else can put words to them. Validation of experience can take many forms, e.g., letting us enjoy what makes us happy (even if you don’t see the appeal), letting us arrange objects in our environment in particular ways, standing up for us if we are bullied, taking our distress seriously, etc.).

Parents of autistic kids and autistic adults ourselves would also do well to make a habit of pre-emptively considering sensory/perceptual/task-switching demands in deciding whether and how to do a thing (or have a child do a thing). 

If I have to go into the lab at work on a given day, I will often make sure and pick the most comfortable work-appropriate clothing possible even if it’s not the coolest-looking thing I own, because I know I’ll be glad of it at 5 PM when I’ve had to move around in whatever I’m wearing all day. I also make sure that my wireless earbuds are charged, and that I have ear plugs packed as a backup before going, basically, anywhere. 

If I need or want to go somewhere, I make sure my transportation back home is of a type I get to control the timing of; sometimes people kindly offer rides, but I’ve learned over time that unless I know for sure the person will leave when I need to leave, it’s better to ask my partner for a ride or use public transportation. And if I’m going to work on a hobby project at home, I have learned to ask myself not just “do I feel like working on this thing now?” but “do I have the energy to work on this AND clean up afterward, at least to a degree that won’t leave an overwhelming mess for my future self?”

Parents can assist their autistic kid in figuring out how to manage this sort of thing in several ways, but one important factor that can shape the entire approach the parent takes (and therefore, how and how well their kid is able to process it) is the acknowledgment of the preceding, interstitial, and aftermath parts of an activity.

For example, whether you’re getting a kid ready for school or taking them on a big family trip to an amusement park (or anything in between), take note of the fact that this entails packing, a car, bus, train, or plane ride, standing in line, etc. One thing non-autistic people are prone to underestimating, in my experience, is the energy cost of just getting places and existing in those places and then getting home again, readjusting to that, and navigating all the transitions in between.

In other words, acknowledge that riding in a car or standing in line can be tiring, boring, etc., and that there might be odd sounds or smells. Acknowledge that having to change classes throughout the day in school (even just to go to lunch, or to art or music classrooms) is not necessarily going to be trivial for your kid, and build this understanding into how you address any “issues” the teachers bring up (or complaints/expressions of distress your kid has surrounding school). I realize this isn’t actionable practical advice per se, but I think when you start with the understanding and knowledge of how certain things can affect autistic kids (and adults, for that matter), you’re more likely to come up with individualized strategies and approaches that will work better for everyone involved.

Finally, I want to make the point that sometimes we may want or need to do something even knowing it’s likely to be exhausting and/or distressing. There is a difference between being forced or coerced into this sort of activity, and choosing it. Being equipped to know how a situation is likely to impact us in the aftermath is always good, regardless. Part of helping an autistic kid (or helping ourselves as autistic adults) figure out energy budgeting necessarily entails acknowledging that we have a right to prioritize, and also not taking it as a harbinger of doom if we occasionally try things that don’t go well.

This is of particular concern for autistics that have higher support needs and/or intellectual disabilities, as folks in these groups frequently have their rights bulldozed to satiate the convenience or the fears of others. It is not, in fact, a kindness (nor is it “realism”) to insist that someone (for instance) learn to tie their shoes before being permitted to do anything fun or interesting to them—or before being given the opportunity to attempt something perceived as far more difficult or scary that they want to do (like attend a protest, or go on a trip, or live in their own apartment). Nor is it okay to set up patronizing rules for adults, e.g., imposing a 10 PM bedtime as a condition of being assisted in getting their own place to live. 

Autistic lives can—and should—be as self-directed, varied, rich, and opportunity-filled as anyone else’s, regardless of the details of our disability or what supports we do or don’t need. All humans deserve to direct our energies in directions that make sense for us, and I hope to see the day when support for autistic people toward this end is considered a matter of basic ethics and decency.