Monday, December 27, 2021

On "Fixing" ASD

I watched a course-load of videos by Dr. Alok Kanojia (@HealthyGamerGG) this past summer. He's a therapist specializing in addiction in his day job and focused on gaming addictions online, but he has broadened his videos to encompass many other issues. He doesn't do therapy online but "coaches" people instead. And typically right there I'd be out. Coaching?? It all sounds a little goofy and new-agey. But I got hooked when I first saw his video with Natalie Wynn (aka ContraPoints) the previous October because of his openness to really listen to her experiences and learn from them before asking the precisely right questions necessary to get her to understand herself at further depth. And then they meditated. It's a mix of Freud and a mountain top guru; at the very least I'm learning lots of Sanskrit words in the process.

I appreciate how he let Natalie explain her experience as a trans person, BUT then I saw a more recent video with a streamer, DesMephisto, taking about being autistic. Dr. K focused on fixing their ASD (Autism Spectrum Disorder). He often uses an addiction analogy to explain that, generally, first we need to understand and accept who we are, like we have to accept being an addict, but we don't stop at acceptance; the next task it to change ourselves so we can better live in the world. And then he asked Des what many consider an offensive question: "If I gave you a pill that would make you no longer autistic, would you take it?" 


If that doesn't seem offensive, then imagine if he had asked Natalie that same question about being trans. It doesn't even make sense. 

It's curious because, elsewhere, Dr. Kanojia explains that we're so hell-bent on getting rid of our problems that we never understand them. When looking at motivation, he says our problem is from looking externally at motivated people and trying to copy them instead of looking internally for our own motivation. We're destined to fail if we're just mimicking outside behaviours. We can't just copy what other people do. Absolutely!! But then, with autism, he wants to fix it!

The problem with the question is that autism isn't something you have and are trying to get rid of; it's something you are and are hoping for a semblance of acceptance for. It's not like having cancer or anxiety. It's more like being trans or gay or any minority identity that faces discrimination and difficulties yet maintains pride in who they are. It's a different way of thinking and understanding the world, which faces challenges because it's in a minority, not because we can't understand and effectively communicate ideas. A study (that I can't find again, of course, yet) found that people with ASD collaborate with others with ASD just as well as NT (neurotypical) students collaborate together, but they both have problems when a student on the spectrum tries to collaborate with an NT student. For many people, it's not a disability; it's a difference. 

One problem with ASD, though, is that for some people it's a profound disability. That complicates things immeasurably. Within all my thinking below (and this is a big thinking-out-loud kind of post), I'm considering primarily the form of ASD that has some benefits as well as drawbacks, like Des describes. Take myself, for example, I can work for hours at a time without a break, hyper-focused on whatever's in front of me, but I can't have a conversation with three people at once to save my life. 

With Dr. K.'s Harvard education and years of work in the field, I'm surprised he went in this direction of trying to fix the condition. Even Dan Harmon gets that many autistics don't consider it an affliction. Instead, Harmon suggestion, it's a disorder when we demand to be looked at when we're talking even though some people want to listen without looking at us. And it's a huge social disorder to be constantly judging one another and in an ongoing competition. Abed, from Community, loves being who he is; he just hates being alienated. Harmon explains that, without acceptance, autistic personalities are formed "under the crucible, every day, of 'What are you doing?' It's an ongoing humiliation." One great example of what acceptance looks like is the way the character Tina is treated in Bob's Burgers. She can't manage to ride a horse at horse camp, but everyone is fine with her riding her imaginary horse instead. She gets picked on from time to time, but then there are so many more kids who stand up for her, particularly her siblings, and she authentically enjoys life. 

Should We Teach Masking??

BUT, there are some behaviours that, if they could be curtailed, would make it easier for autistics to manage in the world. So, it's not a matter of entirely fixing autism, as Dr. K seemed to suggest, but in tweaking some behaviours. And which behaviours and by how much has to be an ongoing exploration led by the person attempting the change, but that's true for NTs as well. It can be complicated to determine what should be accepted and accommodated and what would benefit from change for any of us. Tina makes a repetitive groaning noise when she's upset, and her dad doesn't hesitate to tell her to stop making that noise. Acceptance of a way of being doesn't mean never negotiating how to be together. In a relationship between a pen-tapper and someone sensitive to repetitive noises, there will have to be some discussion about how to navigate conflicting behaviours, and some behaviours get "masked" in order for us to live together. 

So, even though I'm general against some versions of ABA (Applied Behavioural Analysis), practices that seek to fix autistic kids, particularly those that are painful in their application (exposure to loud noises without being allowed to put their hands over their ears. I mean - WTF?? Even NT people want to cover their ears against abrasive sounds!), there are benefits to helping people adjust to the common routines in society and to learn to change in general to be easier company. There are even a few anti-ABA-ers online who have gone down a slippery slope to oppose operant conditioning in general now, even though we all use operant conditioning principles naturally, like whenever we say "thanks" or "good job" in hope it will lead to a repeat of a useful behaviour in a friend or colleague or child. We don't think of it like that, consciously, but that's how it works. It's definitely a problem to expose people to stressful stimuli on a timetable that's not determined by the patient, but that's not to say that all exposure therapy is bad, just that it can be a horror show if it's done horribly. 

What IS normal behaviour? Who decides?

However, another concern is that the use of ABA is too often a means of creating "normal" behaviours, particularly pushing NT social skills. It's not that autistics don't have social skills, but that they don't have neurotypical social skills. Neurotypicals need lots of small talk with eye contact. They struggle to be alone for extended periods. They need ongoing social compliments and can reject rational argumentation as a form of decision-making. They'll often sit silently when something's going totally wrong rather and would feel embarrassed to stand up to alert others of a problem. 

Many autistics, by contrast, listen closely to details and remember them with a precision many NTs find annoying. They rarely talk without substance. They're often very honest and will openly express that one thing that people are avoiding, comfortably getting it out into the open. They'll also bring up problems with rules or routines that just don't make sense, and that most people just accept without question. There's a higher percentage of trans and NB and homosexual orientations in the ASD population possibly because a common aspect of ASD is a lack of regard for social norms and customs. If it doesn't make sense to follow a norm, then we just won't. They can listen well without a need to look at a person's face. And they rarely ask questions if they don't actually want to hear the answer. Misinterpretations of autistic people's body language and tone is often due to using a neurotypical standard of reference and assuming everyone fits that standard instead of being open to potential difference. But they might struggle to join a conversation in progress if people are interrupting one another. And if joining a conversation in progress is a struggle someone wants to overcome, by all means let's help them with the skills. (Not that I could help, that is, because that's a nightmare!) The problem comes with arbitrarily deciding for someone else which behaviours they need to adopt that are just convention and not necessary. But what's necessary?

Should we say, 'Stop making that noise, please?'

At its worst, it's not entirely dissimilar from conversion therapy. A gay person can act like they're straight, but can't be straight. The "therapy" is just training in masking, in acting like someone different, which can be destructive to self-esteem and any sense of self-acceptance, especially in children. For autistic kids, then, is it a problem to say, "Stop making that noise"?  Is it a problem for any kid? I think it's okay to teach kids ways to self-comfort more discretely without damaging their sense of self, particularly if their self-comfort is noisy, but it can be done in a way that overtly explains the likely consequences of the behaviours (people might not give you the job or date you) and provides alternatives that might work. In a perfect world, everyone would be cool with stimming behaviours, but this world is often cruel, so helping kids to reduce overt stimming might help them better survive in public places. 

But masking all the time in public as a way to fit in creates another set of problems once you come out and people realize that the unmasked you isn't just a different gender or orientation, but a different personality, harder to read at a glance. You have to ask what they're feeling because, for some on the spectrum, their face and gestures sometimes don't line up with their internal emotional experiences. They're exhausted from acting the way they feel in order to be better understood, BUT, without the masking, they're less understood. We know it's wrong to hate on someone for their appearance, but we generally think it's acceptable to judge people for their annoying behaviours. And the fact that it's possible to mask them, means they can change them. So, then should they?? Should we?? 

As a parent:

When I was about 7, my mom asked me if I'd like to go to the zoo the following day. I said, "Yes, I would like that very much," in a deadpan tone but internally bubbling over with joy. The next day, I came downstairs, but my mom wasn't getting ready to go. Why not?? Because I didn't seem to really want to go. I was devastated. Unfortunately, to the outside world, my devastation looks about the same as my excitement - as if I'm feeling nothing at all. But, internally, I believe it feels similar to an NT reaction. I was overjoyed to be invited to the zoo, and I said so WITH MY WORDS, and then I felt like the wind was knocked out of me to find out that my calm response had ruined my chances to go. So I learned that I had to act how I feel, which is an extra burden if I'm feeling crappy. I can't even just say I'm feeling horrible without putting on the face and tone and gestures, which is an effort, or else people won't believe me. Many autistics have found this at the doctor's, that it's necessary to act in pain instead of just describe the pain or they won't be taken seriously. And that sucks. Then as a young adult, I rejected having to act out my feelings at all and instead instructed people close to me to just listen to my words. Instead of ME acting, THEY needed to trust that my words are the literal truth about how I feel. But that completely fell apart the day my daughter's dad commented that I obviously don't love my precious baby. For the record, I love all my children intensely, but if he couldn't see that then - oh sweet jesus - maybe my children can't see that!! And I started acting again. It feels necessary to practice the right face and tone and gestures to communicate my love for my children because it's more important to me that they feel that love than it is that I get to be the authentic me, warts and all. Authenticity takes a backseat to effective communication sometimes at least.

In the show, Everything's Gonna be Okay, the oldest brother of a wealthy family has to take on parenting the younger kids after their dad dies. One of the girls is overtly autistic, and - spoiler alert - the oldest brother comes to realize that he is, too. The actors playing autistic are actually on the spectrum, but it ends with him announcing: "I'm fine the way I am!" That might be a powerful admission and great for his self-esteem and all, BUT the kids are bombing at school; he lost track of lawyer's name and trust fund info, and he couldn't find a way for one kid to be at Juilliard even though music is their one talent (and they have tons of money - why were they training her to take a subway??). He needs to develop some strategies to make sure his responsibilities are taken care of - particularly if taking care of kids. We can't just say, "I'm okay the way I am" if we're not functional to the point that it's affecting our children, at the very least! Acceptance isn't the opposite of change. We start with acceptance of our of differences, THEN look towards useful changes to help us work better with the world. But changing behaviours isn't the same as eliminating a condition or changing our core self

Weeding out drudgery and challenges from trauma:

Here's another tricky part: parenting IS teaching kids how we do things, particularly typical social conventions and language and gestures. I don't fault any parent using ABA techniques to help develop speech. Because some cases have been abusive, doesn't mean it's all an abuse because it encourages learning with rewards. As a kid, I knew of a piano teacher who smacked student's knuckles with a ruler to remind them to keep them bent, but piano teaching with stickers and treats isn't an abomination. Even though I had a great teacher who rewarded instead of punishing, I hated learning piano and begged my parents to end it all, which they did to end the nagging. Now, decades later, I regret not continuing with it. I wish they had forced me to do those tedious scales so I could just sit down to play effortlessly now. So we still have to weed out what's simple drudgery that's unrewarding to the child and what's actually painful to them. This is the pivotal place in which it's common for parents to make the kinds of errors they regret when their kids later refuse contact because of that ONE THING that seemed like a discomfort but was actually completely traumatic. Sometimes offering an external reward can be enough to tests where the kids are on a continuum. Had my parents offered a treat after the lesson or some pocket change if I could persevere through the lessons, I'm pretty sure I would have stuck with it long enough to get the intrinsic reward of being able to play. By contrast, an offer of a minor reward wouldn't have done anything to make me try to engage in conversation at a table full of people talking at once - it just wouldn't have been worth that level of heart-pounding difficulty and potential humiliation. How can anyone keep track of conversations when people are all talking at once?? We can accommodate non-verbal kids while also prompting our own kids to try to speak. Acceptance of a difference can't mean avoiding any learning tasks with children. Doesn't that go without saying? Some parents insist that kids should be making decisions on what they learn themselves, but that seems like the negation of parenting that could lead to candy for dinner. At least some decisions must be parent-led. Too many kids will happily make choices that aren't good for them in the long run. That's why parenting is necessary.

Back to Dr. K.'s addiction analogy: We all act differently in different settings, following different sets of rules. When I'm in class, I act enthusiastic about everything, and then hope it's okay to just be myself in the lunchroom. Except it's not, really. Suggesting that someone learn more typical social skills better so they're better liked, isn't entirely dissimilar to suggesting someone with dark skin use whiteners or telling someone to lose weight. To what extent is it asking people to change how they appear to others in order to fit in?  

It's okay to try to improve eye contact or other specific behaviours as much as is comfortable to the autistic person - guided by the autistic, just like with a phobia. We can't just throw snakes on someone to get over a fear, but introduce them gradually guided by the phobic. BUT, a different part of this is that it's vital to recognize that some reactions to things can't be changed. Dr. Kanojia's great example is misophonia - when certain sounds are painful to a person. Studies have found that no matter what's done to desensitize the person, it doesn't work. So repeated exposure to the sound over and over isn't reducing the pain, but is actually torturous. His example is of a 6-year-old taken for weekly sessions in which they're exposed to loud noises that most people find merely annoying. For a person with sensitivities, it's like being taking for weekly sessions with someone holding your hand on a hot stove burner to help you get used to it. That is the problem with some ABA training. Autistics have a reduced habituation to sensory stimuli; we just don't get used to the noises or lights. My kids know that if we go to Best Buy or a similar store with many TVs competing for attention and glaring lights bouncing off slick surfaces, that they better know exactly what they want and where to find it so we can get in and get out as fast as possible. Now with online shopping, I never have to go inside a store like that again!! Forcing someone to tolerate the stimuli, in these cases, doesn't help them acclimatize to the stimuli at all. Where it gets complicated, is that this painful experience can also include eye contact, so training someone to look you in the face can be painful for that person, which is why the key to it all is to let the autistic do the guiding.

Train some traits AND teach acceptance of difference: It can be both!

We definitely do need to get better at accepting different ways of being a capable adult. I once had a bit of a conflict with an English teacher who used an assignment that required students to jump into conversations without raising their hands. Several students approached me because they found it stressful, but the teacher's reaction to my carefully-worded concerns was: "This is how adults talk. If they can't do it, then they can't pass English because they can't communicate like an adult." My retort, "Not this adult," but that held little weight. I question any curriculum that requires a display of neurotypical behaviours. But on the other hand, it is good to push kids to stretch to meet their potential. It will always be a challenge to figure out when we're asking too much of students, so, particularly with high schools kids, it's often best to just ask them. It risks letting some kids slack off when they just don't want to do something, but it saves causing undue trauma to others, which seems the better way to err as educators. There are always alternative ways to assign tasks if we're creative enough.

Furthermore, we can certainly accept a wider range of behaviours in the classroom, but they can't cross the line into disturbing others in the room. That's the crux of civilization: finding that line between freedom to and freedom from. Going back to Bob's Burgers, the question here might be: Do people have the right to learn in a classroom free from repetitive grunting noises from Tina. If we think we're operating a classroom with greater compassion by accepting louder self-comfort, we could be displaying a lack of compassion for the needs of a student who find noises profoundly distressing. It's on on-going negotiation, forever, between people involved, doing their best to meet the diverse needs of a group of people.  

Everybody acts a little more formally at work, and we take to task that dude who underdresses and sits crosslegged at a business meeting. And even out with friends, we don't say everything we're thinking. We still filter ourselves. So is masking ASD behaviour just an extreme version of filtering that we should expect sometimes, but not other times, OR is it something completely different that should never be questioned?? Does any of this make sense??  Should we get used to the idea of people sometimes hand-flapping in a meeting or accommodate their request for everyone to raise their hands to speak at a dinner party? Where's the line between what should be embraced and what should be denied at work, at social events, and at home?

Some draw a line between hiding and seeking: are you hiding yourself to avoid being harmed in some way (laughed at, ostracized, etc.) or are you seeking in order to develop a connection with others. They claim it's all fine if you're doing it to get a desired effect, but harmful if you're embarrassed about how you really are, but I don't understand the difference. Those two things seem perpetually enmeshed. It feels kinda like old school feminist policing around shaving legs, for example: it's fine to shave if you're doing it because you like it, but horrible if you're doing it to fit in or to be more attractive to others. To both claims, I argue that we should just do what works for us, without question. And, when kids are small, do what appears to work for our children. Parents can't always know the outcome of their efforts, so we have to rely on having the very best intentions as they're often first to navigate that line between what's a challenge and what's a trauma. And sometimes we make mistakes.  

We can learn skills that get better with time, but shouldn't force skills that won't improve because they're not truly you - BUT the only way to find out is to try learning the skills (i.e. changing the behaviours) like sitting still even when agitated, or making typical eye contact and talking the right amount at the right volume and at the right times, and matching the words with the expected tone, face, and gestures. Sometimes, even if we don't want to mask, we have to act in order to make others understand us. 

I'm a stickler about grammar because we need common rules in order to communicate well - but then shouldn't we also have common rules about gesture and tone? The difference is my belief that anyone can learn the basic grammar rules even though it's harder for some than others, BUT we have drafts - and have other people there to help us ensure we've expressed ourselves as clearly as possible. Conversation moves too quickly and isn't curated when it spills out in an immediate final version. AND we have gotten used to the reality that cultural differences make for different tones and gestures that we have to learn about each other. I once had a student who introduced himself with his name and, "I just want people to know that I'm not gay, I'm British!" We easily understand that misunderstanding can happen when we forget to take cultural difference into account.

We're cool with learning different speaking habits when it comes from someone new to the area; I think we have the capacity to learn about autistic people's potential to have a different way of expressing themselves despite living among us. So we need to see people in the best possible light. 


Anonymous said...

Always thoughtful, your stuff.

I enjoyed this essay and its thorough completeness, and have no doubt you're correct. We seem to be overrun with "experts" popping up with "advice" and missing the point on almost any topic you'd care to name.

To a great degree, we are who we are, and someone advancing treatment for a condition of ASD without appreciating the kinds of things you bring up as an intelligent person with the "condition", is just another hypothesizing armchair warrior. The further problem occurs if NT parents use said advice in good faith on their ASD child.

I think people always want a quick fix, the 10 steps to losing weight, becoming a robber baron, whatever. Few are willing to put in the effort to really understand because that's hard work, and the hoped-for outcome not assured. Perhaps you could consider penning a screed on how to start dealing with an ASD relative or offspring, as in from the beginning. Because going off on the wrong tangent from the start helps nobody, and there is no such thing as a miracle cure for anything. Having a broad understanding rather than spiritlessly following a hollow ten point plan would be a good thing.

Best for the New Year.

Bill Malcolm

Marie Snyder said...

Thanks, Bill! All the best to you as well!