Wednesday, July 8, 2020

When Adaptation Looks Like Laziness

Emily Paige Ballou
twitter.com/epballou

Many times growing up, I found myself being called lazy for doing things a way that made sense to me. 

Of course I had no idea I was autistic for much of my childhood, and it was even longer before I first heard that executive functioning difficulties may be an inherent aspect of autism. Even then it wasn’t totally clear to me whether I was simply part of a minority that didn’t have significant executive functioning impairments, or whether I’d overcompensated to such an extent in that arena that it would be difficult for me to ever tell what the reality was. Only much later was I able to put together that some of the things for which I was being scolded were attempts on my part to cope with wonky executive functioning, and other related aspects of autism.

A somewhat common frustration that I hear from members of the autism parent community is that a child simply won’t do what they’re asked to do. Now, sometimes a kid may be avoiding a task they’re capable of just because it’s boring or they’d rather do something else. But this isn’t inherently a feature of autism and likely isn’t an issue for autism-specific intervention. Devising ways of avoiding chores is a time-honored tradition of childhood, after all.

Painting of Tom Sawyer talking another boy into painting the fence for him.
[image: Illustration of the character Tom Sawyer talking another
boy into painting the fence that Tom is supposed to paint.]

Secondly, however, I wonder whether there are sensory issues at play that make the task more unpleasant than it has to be and which can be mitigated. I realized only as an adult, for instance, that doing dishes was particularly difficult for me when I was wearing long sleeves because I didn’t like the feeling of my sleeves getting wet. Even if I pushed them up, water would run down my arms into them. Now I take off my sweater or flannel so I’m in short sleeves when I do dishes, and it’s a far more tolerable task.

But I also suspect that there are ways in which we may in fact be attempting to make a task manageable, or mitigate certain executive functioning issues in managing a task, that inadvertently make us look lazy or like we’re trying to avoid a problem entirely rather than approaching it indirectly.

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As I’ve grown to understand the workings of autism better, I’ve been able to see that many of the ways in which I was thought to be careless or avoiding work were actually ways in which I was trying to adapt to an obstacle I didn’t know how to explain, even if I was doing so unsuccessfully.

This is by no means meant to be an exhaustive list, but some of the categories these strategies can fall under include:
  • Minimizing number of transitions or motor planning demands
  • Taking processing time
  • Mitigating inertia or anxiety associated with transitions

1. Minimizing transitions or motor planning demands

This post really began when I realized all at once that most people probably don’t arrange their entire lives so as to substantially reduce motor planning demands.

For instance, we have a big wooden cutting board at home. My roommate puts it all the way away, in a cabinet with the pots and pans, after virtually every time she finishes using it.

I just leave it out as long as it’s reasonably clean, because I’m going to be using it again within a single digit number of hours. I wash it or rinse it if it gets messy, but basically I just leave it out, along with the other things that I am always using, like a knife for butter, and the jar of sugar I use in my coffee.

She also does dishes after every single meal, even if she didn’t really cook anything. I do them once a day, either before I go to bed or first thing in the morning, because why would I add four extra activity transitions into my day for nothing? Just to use the same dish I washed eight hours ago?

(Yes, even if I this means I have more dishes to wash when I do them, it involves fewer overall transitions to do them once than to do them three times in a day.)

Or, working on a one-woman show a few years ago, we mostly rehearsed at the actress’s own house, because she had the space and most of the furniture we needed, rather than renting rehearsal space and furniture. And every day after we rehearsed, her preference was for the room to be returned to its original arrangement, and then reset for rehearsal again the next morning. Since it was her house, this is something she had every right to, but my personal instinct would have been to leave things the way that I was going to need them, day after day, for a foreseeable number of consecutive days.

Why would I add steps into a process that only constituted a burden on my ability to do it?

I realized one day that if other people don’t have some kind of major motivation to absolutely minimize the number of motor transitions they have to make in a day, that if those extra actions didn’t cost them anything, then the fact of their being expected would make a lot more sense.

This is also one of the challenges I’m having with mask-wearing lately, aside from the obvious sensory issues. Putting on a mask doesn’t add just one step to the process of getting ready to leave my apartment, it adds about four. I have to tape a flexible nose piece into a cloth mask so it won’t fog up my glasses as badly, slip it on over my ears, actually adjust it over my nose, then adjust my glasses over it, and I have to do that in the correct order of putting on shoes, hat, mask, glasses, headphones, and washing my hands for a final time before I go out. I don’t always get it right on the first try. Then when I get back, I have to wash it out and put it out to dry. It takes that many extra steps, not just one, for every time I go outside.

2. Taking processing time

Sleep deprivation has been a near-constant issue for me since I was in high school, but once when I was working on a particularly difficult production, I learned that not having any mental downtime while awake could be as bad or worse in some ways than lack of sleep. While I was technically getting enough sleep, and our rehearsal hours themselves weren’t oppressive, between meetings and paperwork and technical issues, I was working on or thinking about the show almost every minute I was awake. I have almost never felt so mentally thrashed as I did by the time it was over.

Time spent not directly addressing a problem isn’t just time to do something more fun; it is often when our subconscious is continuing to work on the problem in a more indirect way.

I’m reminded of this scene from LOST between Jack and Sawyer, in which Sawyer explains that while, yes, he is reading a book, he’s also working out how he’s going to rescue the returned islanders from their time travel predicament. (I am still convinced that Sawyer is one of the best-written inadvertently autistic characters in television history.)

[video: Scene from Lost in which Sawyer tells off Jack, white dudes both.]

And we often emphasize this to non-autistic people learning new skills, that they need breaks from working on something difficult in addition to intensive practice, but with autistic kids, therapies intended to build skills often rely on relentless drilling.

This is also why it’s a problem to try to inject therapy into every part of child’s life, or turn everything good in their life into therapy. Autistic kids, like non-autistic kids, need all of their waking hours not to be work. Downtime doesn’t just allow for restoration, it’s when our brains turn short-term skill into deep knowledge.

3. Mitigating inertia and smoothing transitions

When I was a kid, I would beg to be allowed to do homework in front of the TV, and try to argue that I worked better with the TV on. I knew it wasn’t really true, but I didn’t know how to explain the way I was actually trying to help myself, which was by smoothing out the anxiety and inertia triggered by starting, stopping, and changing activities.

In general terms, “inertia” refers to the tendency in physics for objects in motion to stay in motion, and objects at rest to stay at rest. Energy is required to either stop an object in motion, or to set in motion an object at rest. 

In terms of autism, inertia means that it’s harder for autistic people than it is for other people to stop, start, and change activities—including things like thought processes, speech, and what we’re paying attention to, for reasons that are not well understood yet.

Even though I knew that having cartoons on made it harder to concentrate completely on math, being allowed to leave the TV on made it feel like less of a transition to get started on homework than turning the TV off, going somewhere else, getting my books out, and getting started on homework.

I still use this technique now when it comes to getting started on things that make me anxious or that I just don’t really want to spend time doing, like working on my taxes or folding laundry. Though I’m better than I used to be at telling what kinds of things I can do this way and what kinds of things actually require my full attention no matter how much I don’t want to give it. I’ve also heard more than one other guitar player report independently devising this as a trick, to put something fluffy on TV to watch while running scales or fingerings, just to turn those things into muscle memory through mindless repetition.

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What this doesn’t necessarily mean is that if you realize an autistic student is trying to make adaptations in these ways, that they are necessarily the best possible methods or should never be questioned. Trying to do your homework in front of the TV often isn’t actually great, for instance, and can lead to mistakes and decreased concentration. 

But once you understand what purpose the attempt at adaptation is serving, you may be able to use the same principle or make suggestions to find better solutions with fewer drawbacks. Maybe they need a different kind of media playing in the background to help with inertia, or a different kind of ritual to combat transition anxiety. Now I know, for instance, that making tea, lighting a candle, and turning music on is a ritual that can help me get started on work I’m not looking forward to having to do, or help me ease into looking at a problem I don’t know how to get started on or that makes me anxious to even think about. Some unpleasant things I really can do while watching TV without compromising the quality of my work! For others, instrumental music or a different ritual or telling myself “You only have to get this far tonight” and approaching it in small pieces to build a little momentum is better.

Monday, June 22, 2020

Invisible Differences: A Review


[image: Cover of the graphic novel Invisible Differences. The title is at the top in red block letters. Under is a grayscale illustration of a woman with straight dark hair, looking perplexed. She is wearing red Converse-style sneakers and is standing in front of many people walking by, intent on their own business.]


Sonny Hallett
twitter.com/scrappapertiger

Review of Invisible Differences by Julie Dachez, illustrated by Mademoiselle Caroline

One of the most valuable moments for many, on their journey to realising that they’re autistic, is recognising themselves through reading biographies and seeing other representations of autistic experiences. Autistic representations can provide such an important sense of validation and community, for those of us who may have never experienced much of either before. 

As more works emerge by actually autistic creators, we are also seeing greater range, nuance, authenticity, and celebration of our diversity and differences, rather than pathology-based models or crude caricatures. In this context, Invisible Differences is an excellent addition to the growing body of autistic autobiographies, and stories about autistic self-identification and transformation.

So much of autistic experience is often tied in with communication and the sensory environment, and artist Mademoiselle Caroline does a great job of capturing those difficult-to-describe moments and feelings through her drawing and panel design. I can actively feel and viscerally recognise the sensory overwhelm of protagonist Marguerite’s office, the stressful disorienting chatter of her colleagues, her sense of calm in nature, the loops of anxiety when she worries that she has said something wrong. 

There is also increasing (and more joyful) experimentation with colour as the story progresses, mirroring Marguerite’s growing sense of self, experimentation with more confident and authentic ways of being—indeed: starting to live “a life in full colour.” There’s something really nice here, to me, about how realising that one is autistic could bring so much more colour into a world that might previously have been dominated by anxiety, and a sense that being oneself isn’t OK. There can be such a sense of relief and possibility to realising that “normal for me is to be “abnormal,” which Dachez celebrates throughout this story of realisation.

I am quite curious about how this reads to readers who know very little about autism, and perhaps, like some of the other characters in the book, might otherwise have responded to Marguerite's revelation of her diagnosis with worry, disbelief, or pity. This book is for them too—not just to learn more about the experience of being autistic, but about the importance of finding one’s community and realising that being yourself is OK, and that being different can be hard—but in itself is nothing like a tragedy (and can actually be really important). 

There is a lot in there about revelation and gradual self understanding and acceptance that is illustrated in a way that I think is much more accessible, through following Marguerite's story, how she changes, and the decisions she makes, than just being told that this process happens and is important. It is a very nice example of the power of showing, rather than telling.

On the theme of education however, something that did jar uncomfortably was in the back pages, designed as a sort of simple informational fact file on autism. It read oddly to me, changing between first and third person. After such an intimate, humane, and personal story, putting information about autism in the third person, describing us as an ‘other’—“they tend to prefer rituals,” “they might be clumsy,” felt really quite uncomfortable. Moreover, while on the whole the information was reasonably good, it still felt somewhat unfounded and unhelpfully generalised in some of its assertions, such as the claim that “non-autistic people recharge in the company of others” and autistic people the opposite, or “they have few prejudices and are less likely to judge others.”

I felt that it was a shame that the back section did not instead focus more on differences in communication (and perhaps ‘culture’) between autistic and non-autistic people, and the impact of having a minority or, as Dachez might put it, “deviant” experience compared to the majority. It felt like a shame and rather a surprise that the book should end on such an ‘othering’ experience and go back, however slightly, to some of the tired tropes and generalisations (“condition,” “symptoms”... though maybe there is a translation issue also at play here). Perhaps on its own I would’ve been less critical of this section, but the quality and thoughtfulness of the story greatly raised the bar for what I was expecting.

That said, the final section did also contain a very direct and critical section on France’s problematic psychoanalytic approaches to autism, stating it is “40 years behind when it comes to autism,” and perhaps in this context one can forgive a little the shortcomings of the final section. There was also a very generous and excellent list of resources for further reading, with a range of autistic voices represented, in a range of media, so perhaps keen readers will seek out further challenging and diverse perspectives and ideas.

But maybe it is best that we focus back on the main story, which after all is the main reason that readers might pick up this book. As the narrative takes us through Marguerite's diagnosis process, and her discovery of autistic community, we hear accounts from a range of autistic people she meets (which read like quotations, so I assume they may be from real people) hinting at a broader range of experiences and stories than we are presented with through Marguerite—something that hints towards a real sense of community and culture. She goes further, however: Marguerite's realisation doesn’t just bring her into a community of autistic people, it brings her into a much broader community of neurodivergence and celebration of diversity—there is so much solidarity in the experience of difference, and realising that we may all have (often invisible) differences from the majority can be so important, and feels like the most valuable message for the book to leave us with. As Dachez writes on the cover page:
“By embracing your truest self, making peace with your uniqueness, you become an example to follow. You thus have the power to shatter the normative shackles that hold us all back and keep us from living together in mutual respect and acceptance. Your difference isn’t part of the problem, it’s part of the solution. It is a cure for our society, a society obsessed with normality.”