Saturday, April 3, 2021

World Autism Day

I've come up for air from this crazy year of teaching for World Autism Day - and I'm a day late. Many autistic people find April an awkward time because much of the messaging around autism comes from non-autistics. Miss Luna Rose made this great graphic to illustrate some of the concerns with the Autism Speaks organization's campaign to have everyone in blue for the month:

The #REDinstead goes back to 2015 with Alanna Rose Whitney's #WalkInRed alternative. It was Judy Singer who coined the term "neurodiversity" as well as creating the infinity loop way back in her sociology thesis paper in 1996. These are preferred by the autistic community, and that's what should matter.

Lots of autistic people have issues with Autism Speaks in general for focusing on a cure and for training towards "normal" behaviour among other things, but, specific to this campaign, it's not enough to be aware that some people will stand too close or stim or walk away mid-sentence or have a singular, detailed obsession, we need to accept that people exist and function best in a wide variety of ways. You'd think that would be an uncontroversial position!

And, yes, it's "autistic people" not "people with autism." Autism is something you are not something you have

I've never been formally diagnosed, but, both times I had one of my kids diagnosed, ten years apart at different psychometric clinics, I was told informally that I also 'check all the boxes.' Labels are useful for finding one another and getting support and accommodations, but I still contend that the world would be a much better place if we didn't need them. Do we need to know that Sally looks at the ground when she speaks because she has autism in order to just listen to her without judging her for anything beyond her ideas? Shouldn't we be respectful of everyone regardless any harmless idiosyncrasies? Yet, in some online corners, a formal diagnosis is an unspoken entrance fee to support. I only read without writing there so as not to offend because I understand the defensiveness harboured by people seeking out a clearly delineated line. It's not clear cut, and that can be frustrating. A diagnosis is literally a matter of checking off boxes, which always has a measure of subjectivity to it when it's based on more checklists filled in by parents and teachers (like here or here) to try to match up with this criteria, loosely paraphrased from the DSM 5

A. Deficits in social communication with B. repetitive patterns of behaviours or interests. C. Signs are present from a young age, and are D. significant enough to cause problems at school, work, or home, and E. are not better explained by another diagnosis. 

From the get go, some would prefer that to say "differences" in social communication, but currently there is a deficit in communication from barriers caused by a lack of acceptance. The loss in communication goes hand-in-hand with the inability of others to accept communication habits outside a narrowly defined norm of behaviours. And the big argument is whether or not to train people to act closer to this "normal" or to expand what we think normal looks like. I think it's a bit of both, which could just mean I'll have haters from both sides! 

Autism can be hard to pin down, being on a spectrum and all. We're getting better at understanding that there isn't high and low functioning autism but instead there can be autism with or without any cognitive impairments. This is why psychometrists look for a collection of signs. The spectrum isn't a continuum from a little to a lot, but an assortment of behaviours and perspectives all lumped together under one name. Remember that adage, "If you've met someone with autism, then you've met one person with autism." But each behaviour up for diagnosis can often be alternatively understood with a different explanation, further muddying up the waters. 


For instance, I rarely talk about people from one group with another group to the point that someone who knows me fairly well was adamant that I live alone and not in a noisy house full of people. But I've been taught to talk about ideas, not people, so is this just a lack of normal sharing (social deficit) or a concern with appearing self-absorbed and with what my father would say about a post this long all about me?  (That quotation on the right there is actually originally by Henry Thomas Buckle, and I know that because I'm obsessed with checking sources of random online quotations. So is that a sign of ASD or just a sign of an excellent academic background that focused on accuracy?)

I won't follow rules unless I understand why they're in place. But that's something Hannah Arendt and Noam Chomsky and Timothy Snyder and Chris Hedges all tell us to do: don't blindly follow the rules because that's what led to the holocaust! Are autistics just ahead of the curve on this, or have I absorbed the message from a young age since my parents also taught me this?

I can be completely engrossed in something for hours, and I actually won't hear someone address me specifically, and then I appear to be ignoring them. But isn't sustained focus a good thing? Is the problem with our society that expects us to shift gears quickly or is the problem with the people who want to finish what they're working on before moving on? We compliment concentration skills until we don't; it's very confusing!

I'm in a constant state of restrain around music, which begs me to move. How do people not sing and dance when music starts playing?? But is that ASD or just from an early decade of dance lessons with a very musical family?

If I see a problem with an idea, I point it out. It baffles me that anyone would be offended by this, because, as has been explain to me, Truth is more important to me than any allegiances (as if that's a bad thing). Is it autism or Jung's "thinking-type," or, if you prefer, just a matter of being low on the Big Five's agreeableness scale? I don't do that social masking thing, so if I say you're beautiful, it's seen, in my mind, as stating a fact rather than making a judgement. But that goes in the other direction as well! Open disagreement is very comfortable to me, but isn't that true of most people with a degree in philosophy? And am I just unable to avoid being brutally honest, or am I just a total bitch?! 

I often just stand near people and wait patiently to be spoken to, but my parents were born in the 20s, and children are to be seen and not heard, and then I've just never figured out when I'm actually supposed to be talking. Also I have a naturally soft voice and can rarely be heard anyway unless someone carves a silent opening for my response. At the best of times I repeat myself a few times before someone else will repeat what I said for all to hear. Whatever happened to that idea that nobody should interrupt anyone ever because it's just plain rude?! It's been exchanged for "get in there" to the point that people all talk over each other, and then I can't pick out one thread of conversation, so I stand silent, baffled by the cacophony and hoping it slows down enough to join in, or I just wander away. 

My default is to look at the ground, but I've trained myself - with lots of reminders from that one teacher long ago, for heavens sake, to lift my chin when I talk, like a normal person. But either I don't look at people enough, or I look for too long and they think I hate them or am in love with them. I've had random people tell me they're married totally out of the blue, and it's baffling to me, until I realize how long I've been staring because they have an interesting left eyebrow or dimple. But I also studied fine arts and painting, and I notice things in people's faces, which are so fascinating it's amazing we can avoid staring at each other all the time! So then I'm back to looking at the ground to prevent myself from giving anyone the wrong impression.

I can't remember names or recognize faces, but that could also have something to do with the amount of likely concussions I had as a child left to my own devices with a forest of trees in the backyard. All the kids on my street fell out of those sugar maples regularly back in the early 70s, and then you just go home for a little orange aspirin, and get back up that tree! As a kid, mum admonished me for just not paying attention when I couldn't tell one neighbour from the other, and I've made concerted efforts to really pay attention to people. An old boyfriend had a good chuckle when he found my map of my current neighbourhood with people's names and pets. I remember people best by their dogs. But then my own children came to my school. One day I heard my son in the hallway outside my classroom. I went outside to ask him what he wanted me to get from the store for dinner, but I couldn't place him among the sea of faces. I had to walk up and back in the hallway, pretending to forget something, in order to place him by the sound of his voice. Weird, eh?? So, it's clearly not a matter of not paying sufficient attention, but is it autism or a head injury? And is it a disorder or a difference? 

I've found ways to accommodate myself, so I can manage just fine, but don't we all find ways to accommodate our differences? I still map out new people even though some people speak dismissively about teachers needing seating plans! It's an accommodation I really need to use, so criticisms sound to me like people criticizing someone needing glasses (which actually used to happen - we've come a long way!). And I have no idea how to respond to the well-meaning who tell me "People will like you better if you say 'hello' and then their name." Like my mom, they can't believe that I just can't rhyme off someone's name like that!


And here's the thing: In a group of people who care about inclusivity, people might be willing to slow their speech for someone with a hearing impairment. They might become more aware of facing the person they're talking to, and the group might monitor one another, reminding each other to speak one at a time so this person can be involved in the conversation. They'd be mindful of being inclusive. By contrast, in many equity-minded groups, it's still entirely on the autistic person to change their behaviour, to tolerate the chatter and find a way to add to the conversation or risk being called out for being weird or worse. People want proof of a disorder before they're willing to make any accommodations. But imagine if we all just tried to be inclusive of everyone without knowing anything about them! 

Recognizing that's not going to happen overnight, I sometimes think it would help if I wore a button that said something like: "I don't mean to be rude, I just struggle with socializing within currently established norms." It won't make me popular, but it might prevent enraging people, as sometimes happens. Once an acquaintance was explaining a difficult time he was having in life, and he suddenly started yelling at me for not looking at him when he was speaking. I was listening intently, but looking away, which is how I listen intently. And I was aghast that I was adding to his troubles but also a bit panicked dealing with this shockwave blasting at me from this seemingly inexplicable anger. 

It's often a case that those little sensitivities we have - all of us have - clash. He's sensitive to getting sustained eye contact, and I'm sensitive to sudden loud noises. We're all just trying to cope here!! Because, from the other end of the table, how do people feel heard if you won't look at them? How do people know you want to join in if you never do? How do people tell you're not judging them when you acknowledge how bright their shirt is today? It often comes down to measuring how much effort it would take for people to change, and that where the arguments around ABA and other training programs come to play. They imply that it makes more sense for the minority group to adhere to current norms than for everyone else to accept the occasional hand flapping or standing too close or other little things that set someone apart. Is it easier for me to force eye contact or for that dude to tolerate what feels like being ignored? So, then, are traits common to the autistic community something that can be accepted without knowing who "counts" as autistic? 

I think it comes down to this: Do we want to live in a society in which we all look out for one another, or one in which we all fight to rise to the top? Is it every person for themselves here? Survival of the fittest? Or do we have big enough brains to take care of one another compassionately - like Margaret Mead's notion of civilization being when people care enough to help someone with a broken thigh bone (Paul Brand, p.68): 

Or are we no longer civilized? 


But then we still have the problem when our needs clash. What happens when someone needing to talk at length on one topic butts up against someone struggling to listen to someone talk at length on one topic? That can only really be solved with a long and awkward conversation, which might not be realistic with casual acquaintances. If autistic people have a right to ask someone to please limit the length of time they speak to them, then it stands to reason that they also have a responsibility to avoid talking at length to others as well. Do people have an 'out' if it's difficult to control behaviour or just when it's impossible? Do autistic people have the right to ask random people to be quiet so they can hear a conversation directed at them? And do non-autistics have the right to expect everyone to be able to manage a group conversation? 

Years ago I asked a couple colleagues to rethink a common practice of putting kids in "fishbowls" where they're graded for getting in there and participating in a discussion on a specific topic without any hand-raising or teacher facilitation of the conversation. My concern was prompted by a student who told me he had missed school in order to miss a fishbowl in another class, and then other kids chimed in at the stressfulness of the experience. But the response from teachers is that being able to discuss in a group is an expectation in the workforce and life in general, which is absolutely true! But then we get to whether or not it should be an expectation of the workplace and of society at large.

If I meet someone who talks loudly or quickly or for a long time all at once or all three, I have to restrain myself from crawling under a table for cover or just running away. It's actually painful to me. But I'll typically just stand quietly nodding and subversively planning my escape. And I feel absolutely horrible that I know I'll later avoid them forever because I just can't possibly manage to keep listening to them, which feels mean even just to say. But, if you ask around, many other people also find that annoying even though, when it's happening, when I'm just standing and coping, some people think it's very funny to watch me squirming there so uncomfortable and all. Sit-coms normalize laughing at people's discomfort. 

My biggest concern in that type of interaction is that the person will think I hate them or that they've done something wrong when it's just a matter of my inability to manage the intensity they bring to the conversation. I worry about anyone I've ever potentially offended - not that I'll be seen as mean, but that I caused some suffering. That's an excruciating pain, but then again I was raised with Catholic guilt in my bones.


When asked a question, I sometimes appear to just stare into space in response, but I'm thinking. Is it ASD, or is it from having that damn philosophy degree?? (Or did being autistic lead me to getting a degree in philosophy??) I've got too many ideas in my head to choose from, and I've often taken the question into a range of possible directions. My kids make my differences clear to me without hesitation, and if I don't respond immediately, I'll get a sarcastic, "Okay, good talk!" And it does help to have them point out when I'm acting in an atypical manner. Shouldn't we all want to improve ourselves as people interacting within a society? So should autistics work at normalizing their behaviours... a bit? But then, doesn't that undermine that whole acceptance thing?? What a fascinating dilemma, eh!?!

It's somewhat similar to ending body shaming. Can we love our bodies as they are and also want to just lose a couple pounds? 

I'm often unaware how my clear and matter-of-fact manner of expressing myself can be too blunt and offensive to some. My tone is often really off, and I wish people could just listen to my words and ignore how I say it. We can learn to listen to someone with a very thick accent and make the effort to understand what they're saying, so I think we can make an effort to listen to people who don't say things quite as expected. My youngest often calls me "Captain Holt" when I respond using emotional language but in a monotone, and it's actually nice to know someone with tonal issues can be admired by others, even if just on TV. If it can happen to a character in a sit-com, then maybe it can happen in real life, too! 

Some old studies suggest autistic have little capacity for empathy, as indicated by teacher reports, but looking at MRIs show "heightened empathetic arousal," a significant internal reaction to suffering, but little external response. When my youngest went missing from grade 1, and was later discovered to have walked all the way to her grandma's, the police thank me for remaining cool and collected through the process, as if I had a choice! The downside of it, obviously, is when people think I don't care about them because I'm calm in the face of a potential kidnapping like some kind of monster! So wouldn't it help if autistics with this characteristic learn to act in a way that matches their emotional language? But then is that no longer accepting how they are?? 

I have no idea.

As a teacher, so many of these issues are solved for me in my classroom where I can choose who speaks and when and for how long, and I can always discuss subjects I'm obsessed with, and they have to listen to me! I still struggle with other classes performing skits in the hallway outside my door while I try to teach, completely unable to talk and hear and think with people chatting in the hallway, and that is not something that will ever be accommodated in any way for me, so, for that one reason only, I kinda like teaching from home. Unfortunately there are few other avenues in real life for those types of formal interactions, and the expectation of adults really is the ability to hear all the chatter of a group and jump in to be heard at the right time, with the right tone and volume, and just long enough to be acknowledged without actually saying much of any importance or too controversial. 

Or I can just hang out online. 

Also check out posts at Thinking Person's Guide to Autism, the Autistic Women and Nonbinary Network (AWN), and the Autistic Self-Advocacy Network (ASAN) for tons of great info.

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