My day is going the way of those days when I wanted to go to the store but just feeding the cats, doing laundry, having breakfast, washing up, getting dressed, and having lunch has taken all the resources I woke up with.
I’m desperately in need of there being a COVID-safe place to hang out other than home. Today apparently I am to be absolutely besieged by construction sounds to my right and personal power tools to my left, with no hope of escape.
My new nonfiction read is Autistic Community and the Neurodiversity Movement by Steven K. Kapp, editor; my continuing fiction read is Gideon the Ninth by Tamsyn Muir; and I’ve recently finished Future Histories by Lizzie O’Shea. So far this year, I’ve read twenty-one books, with nine ready to read next and twenty-eight still to buy or borrow.
Back in March, there’d been a pandemic-prompted reunion of sorts of my original online community (scroll down) that I even touted in response to a call for items from a newsletter I read. It didn’t, for me, even last a month, because of reasons I’d tweeted and also posted to Instagram at the time.
Fast forward to the end of May and the beginning of June, when a completely-unrelated person from that same community fell like dick from the internet sky.
Full disclosure: between the first and the second comments was my only reply: “Yes: fuck you.”
To be clear, waking at noon was both due to a recurring fatigue condition and mental health stresses during social distancing lockdown, and the AirPods are for the active noise cancellation I use to mitigate autistic sensory sensitivities. The selfies, like most people’s selfies, are to mark the pushing through.
Adam Mazza, my Instagram bully, is engaged in online harassment that’s reached the point of bullying me over disability. He’s been reported to Instagram as such, and will continue to be with each new post. I haven’t blocked him because I want him to keep digging his own virtual grave.
I also note a common irony of the internet bully: trying to shame people into thinking no one cares about what they have to say…by repeatedly responding to what they have to say.
One thing I have a greater appreciation for because of this, although I wouldn’t go so far as to say I thank Adam Mazza, my Instagram bully, for the lesson: I’m not a suicidal ideation guy, I’m not a self-harm guy, but the massive anxiety spike caused by each of the comments so far by Adam Mazza, my Instagram bully, definitely helps me understand a little better why online bullying and harassment can lead people there.
Oh, for the halcyon days when all I had to criticize Instagram for was the out-of-order feed hurting my autistic brain. To stay on point: it’s safe to assume Adam Mazza, my Instagram bully, would see that as just more complaining my
four 227 followers don’t care about.
It’s not at all the point of the thing but in the latest edition of Why is this interesting? there’s a paragraph about kids crying that sent me to a very particular place.
This kind of fits one of my long-standing theories about kids: that they’re mostly right about things. It started with observing my children when they were little babies and trying to avoid the urge to do root cause analysis every time they cried. I’m not sure whether this was more for me or for them, but I eventually came to the conclusion that the most likely reason a baby is crying is because something is just weird. Wouldn’t you cry a little the first time you felt something pushing on your face that you couldn’t see if you didn’t know it was called wind? Few places is this theory more apparent than on an airplane. On flights, kids whine about being bored, wanting to move around, and being hungry, which, if any of us were being honest with ourselves, would be exactly the same list of complaints we have. We’ve just learned to shut up and deal with it.
Think about this idea that kids are “mostly right about things” the next time someone complains about an autistic person’s “tantrum”. There’s a stimulus there, and it’s real to the person reacting, even if your own mental makeup, or even just cultural acclimation, hides it from you.
Let’s talk masks again. My current sense is that the specific type, size, and cut of these Braddock masks easily has been the most comfortable on my face, causing me no sense of suffocation. (I’d gotten a three-pack, one each of the grey, charcoal, and black.) However, the elastic ear straps leave something to be desired both because one of my three masks (the charcoal) has a strap that’s already fraying and soon will render to mask unusable — and this after receiving a three-pack twenty-four days ago and not even using a mask every single day — and because ear straps tend to exert force on my ears (especially true with the black mask) of a kind and direction that often causes problems with the AirPods, which I need for the noise cancellation. Some might suggest finding this cut of mask but with around-the-head ties, but I have trouble tying things behind my head like that. What I really need, then, I think, is this cut and type of mask but with stronger elastic straps than these that go around the head like mask-ties do, instead of behind the ears.
If you’ve got autistic obstacles when it comes even to the most innocuous telephone calls, Willamette Week‘s description of contact tracing should fend off any suggestions you look into it: “Initial calls to people who have tested positive can take an hour or more, as the person on the other end of the line may be hostile, ill or under duress.”
In the past week, WW interviewed five members of the county’s communicable disease team. They’re all working long days and weekends, doing a job that’s less like CSI: Miami and more like conducting a telephone poll. It’s a deceptively complex job: To gather the information critical to slowing COVID-19, they must combine the relentlessness of a bloodhound with the cheery nature of a telemarketer in what can be a life-or-death situation.
Today’s brief photo opportunity during a mostly-unsuccessful errand outing which, if nothing else, established that even just 72º and sunny already is a point at which mask-wearing starts to become intolerable. High-80s are coming, and then summer.
Annie Vainshtein, writing about the loss of social smiling, suggests that “[a]s we ease into a paradigm shift for the way we make nonverbal connections with people, there will likely be misfirings and confusion, but also, perhaps, some room for experimentation”; and I couldn’t help but wonder whether or not it might broaden people’s notions of what social interaction is like vis-à-vis, say, autistic people — and then it turned out that Vainshtein actually thought to include an autistic person in her piece.
For some people, the potential for that shift has some elements of relief. For Fabo JaNecko, the degree of social privacy behind the mask has been a welcome transition for other reasons.
“As an autistic person, it’s great not to have the pressure to smile and interact with people when I pass them,” said JaNecko, 21, who lives in Oakland and works at a program for adults with developmental disabilities. “Usually in public I ‘mask’ so neurotypicals think I’m normal — but now the rest of the world has to literally mask.”
Me, I don’t mind the casual, passing acknowledgment of other people; it just tends to be an upnod (with mirrorhsades hiding an implied eye contact), maybe along with raised eyebrows depending upon the person and the circumstance.
For sure, it would be nice if people overly-reliant on smiles broadened their understanding of what counts as meaningful gestures of social lubrication, hopefully beyond simply relying even more upon eye contact. Vainshtein bothering to cast a wide net here makes me more sanguine about the possibility.
The article’s paywalled, but a study of Washington Post articles over a ten-year period shows that autism coverage “shifted […] from a focus on ’cause and cure’ toward one of acceptance and accommodation” but still exhibited problems.
Although the paper’s coverage over time gradually placed more emphasis on autistic skills and strengths, coverage continued to use negative terms to describe autistic people. For example, the terms “high functioning” and “low functioning” continue to appear, despite autistic advocates’ preference for more specific language, such as “speaking” and “non-speaking.” And the emphasis on strengths was on autistic people who can do things like speak conversationally and hold jobs.
Thinking about my yelled blasphemous invective made me think about those job-placement crying fits in the men’s room, and now I rather suspect they are versions of the same thing: the safety valve on a pressure cooker. The difference is that while the outburst ill serves workplace, the crumple ill serves my mental health. Most people would look at the outbursts and consider them to be explosions — or, rather, meltdowns — but in truth they actually help avoid meltdowns. I’ve been through meltdowns and they don’t look merely like yelling, “Jesus mother fucking Christ!” and then moving on to the next thing. When my environment wouldn’t accept an outburst, the pressure is relieved instead through a crumple. I’m not holding my breath for suggestions on workplaces where outbursts would be acceptable, but I certainly can’t see myself being able to attempt a return to work only to face more crumpling.
As I said already on Twitter, my first three thoughts this morning were, “Another god damned day to get through.” As I typed for the previous blog post the words “I remain confused as to how people manage workaday lives” I thought mostly about one thing I know at this point for certain: I’m unable to provide any employer with predictability of presence. The last time I tried, I was under such severe stress within the first three months that I was having depressive episodes in the men’s room, and because I didn’t want anyone to think I was being irresponsible or non-responsive to the job attempt, I stuck it out for three months more despite that toll. The reality is that I can’t even tell myself on any given night what the next day is going to look like in terms of my capacities and my resources, but I’m supposed to be able to commute to and perform a job in a day-in, day-out manner? All I have is unanswered questions: where are the other autistic people who are low-support needs when it comes to the daily tasks of living on one’s own yet apparently cannot work? How can state and federal authorities not consider this to be disabled? Should I feel guilty for fearing that I’m going to be allowed to fall through the cracks, when there are plenty of other people out there who don’t even have the societal advantages of being straight, cisgender, white men with family support? Is it a bad idea to just go ahead and have today’s total existential breakdown out loud and in public here on the blog?
My set of diagnoses did not include a separate diagnosis of sensory processing disorder, but the below bit from the latest Learning from Autistics interview is reasonably descriptive of my autistic sensory issues.
My mood can change so quickly if I am overwhelmed by something as I cannot filter the information coming into my brain, and I cannot regulate my emotions or understand and label my own feelings (I was told by my autism assessor that this is referred to as Alexithymia). This means day-to-day it can be quite tiring being out in the world, and as a result, I’ve become very good at masking (hiding my true thoughts/feelings), and I can only really drop that mask when I am in a safe environment like my home.
As I continue to discover ways in which I was under sensory stress during my pre-diagnosis decades but suppressing the effects even from my own conscious awareness, I remain confused as to how people manage workaday lives without driving either themselves or the people around them batshit.
I know that I shouldn’t read too much into any particular aspect of a set of interviews of just twelve people, but nonetheless I find it interesting that the three people “strongly opposed” to the loss of the term Asperger’s in diagnostic manuals were late-diagnosed men. There’s a thread of autistic opinion out there which rightfully gets labelled Aspie Supremacy (typically it seemed to be people with desperate need to establish that they aren’t like those other autistic people), and almost every time I’ve encountered it directly it’s been late-diagnosed men. Which is not to say that only men identify as Aspies; just that I’d actually love to know if there’s any research on use of the term broken down by gender, as well as the degree of vehemency.
- What I mean here is that in my mind, men are more likely than women to be strongly opposed to a loss of status, whether real or perceived, and “Aspie” frequently seems used not so much in the framework of disability identity theory as in the framework of a higher status of autistic.