Tag: Disability

Writing for the Star Tribune about toxic positivity Kevyn Burger (via Ryan Boren) offers an important caution from graduate student Bridget Siljander — “We act like if they just try harder they can be happy. That ignores science. It ignores diversity. It ignores trauma.” — but I was mostly struck by therapist Sherry Merriam.

“It’s as if this turned up the gravity on the planet. For those people, whatever they were trying to do feels harder and heavier now,” she said. “Now we see the pressure to make something positive out of this situation — get that sourdough started, read those books. It’s wonderful for those who can use those things as coping mechanisms, but a lot of people can’t and they feel like a failure. That’s what makes it toxic.”

It struck me because I’ve used the gravity metaphor a lot. It doesn’t feel metaphorical when it hits; your body physically responds as if everything is heavier and slower. It shouldn’t surprise me that the metaphor exists, you know, outside of my own head.

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.

Addenda

  1. 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.

Link Log Roundup for May 14, 2020

In this edition: autism and actual masking, dining with mannequins, genetic drift, ousting Burr, cats and coronavirus, a new giraffe, black churches, reopening Oregon, COVID-19 and the brain, Oregon restaurants, the post-pandemic commute, bicycles, disability claims, the sage grouse, lockdowns and history, “Obamagate”, walking a trail, test failures, the privilege of escape, Multnomah County, the last Blockbuster, public shaming, and an invasion of goats.

A Gaping Hole In The Law

C. M. Condo’s description of trying to obtain disability benefits as an autistic person includes a lot of stuff with which I’m familiar, and some stuff that perfectly describes my fears.

Another issue is whether I was able to work “before” this happened. Unfortunately, there was no “before.” I have always been autistic. I have been trying to work despite it, and been unable to sustain part-time or full-time employment without debilitating mental and physical ramifications. While repeated attempts to do so have caused some permanent mental and physical damage, in and of itself, my autism doesn’t disable me the same way physical disabilities disable people. My “ability” to work, strictly speaking, is not impaired.

This is the problem with my own work history, and in fact the decisions (or advance notice of what decisions inevitably would be) of the Social Security Administration bear this out: I’m not considered disabled for benefits purposes, and even if I were they’d consider me to have worked too little to obtain one kind of benefits on my own, yet too much to obtain those benefits based upon a parent’s work history. They get me coming and going.

An attorney lays it out.

The attorney I spoke to even admitted that there is a gaping hole in the law; someone too disabled to work enough to support herself but not disabled enough to be unable to work at all, like me, gets caught this gap.

This is one of the great pitfalls of receiving an autism diagnosis late in life: anything you might have done in the decades prior to live life the way everyone else does, even if it’s full of failures to do so, actually is considered by Social Security to be evidence that you aren’t disabled.

“The law, the forms, the way it is all written, there’s no place for me in them,” Mondo writes. “The law, as it is written, creates a reality in which even the tiniest scrap of functionality means one isn’t really disabled.”

This in part is what I mean when I say that I feel like my life is an unsupported use case.

Link Log Roundup for May 13, 2020

In this edition: PTSD at Facebook, bankrupt hospitals, conservation efforts, incel communities and autism, a surreal Senate hearing, black men in masks, losing health insurance, ignoring CDC guidance, disability tech, urban air quality, rent strikes, Oregon counties, failed leadership, protests at the Oregon coast, dogs finding whale scat, vacating non-unanimous verdicts, suburban flight, investing in black neighborhoods, testing and stigma, evolutionary psychology, defending life, and the psychology of consumption.

The construction next door is a cognitive and sensory barrage no matter what, but when stuck at home because there’s nowhere else to spend the day, it’s viciously enmaddening. I don’t wish anyone out of work, but this is too fucking much for me.

The numbers of autistic adults receiving Supplemental Security Income benefits are increasing; those numbers don’t include me, but then the Federal government also doesn’t consider me worthy of a coronavirus stimulus payment.

I ordered these memory foam tips for the Airpods Pro and they are way more comfortable than the default silicone ones, although they take a couple minutes to fully take shape, so an initial “fit test” might fail.

Addenda

  1. Having said that last, the second time I used them today, they simply wouldn’t pass the “fit test” at all. I’ve no idea the degree to which they were actually failing in usage, although I assume the test is making use of the ear-facing microphone to determine how much sound is getting past the earbuds.
  2. Next up is seeing if using these helps keep either tip type seated better.

Today’s edition of the Spectrum newsletter collects four previously-published stories about receiving (or not receiving, as the case may be) healthcare as an autistic adult, one of which includes a section on AASPIRE’s Healthcare Toolkit, which I encourage people to use.

I had my own accommodations report, generated through their toolkit, included at my provider as part of my medical records. I don’t know which of my various doctors has read or even noticed it, but it’s useful and important to have it on file should any problems arise, since I’ll be able to point to its existence and place the onus back on any doctor who doesn’t provide requested accommodations.

Nicolaidis and her colleagues tested the tool kit in 170 adults with autism and 41 primary care doctors in 2016. The participants reported that communication with their doctor improved one month after they received the tool kit. The next step, Nicolaidis says, is to see if the tools can be incorporated into primary care practices, as opposed to something individuals take to their physician. To find out, she’s collaborating with three large healthcare networks, two in Oregon and one in California. (Croen, at California’s Kaiser Permanente, is a collaborator.) In January, they launched the two-year study, which includes around 220 people at 12 clinics, about half of which will use the tool kit.

“January”, in this case, refers to January 2018, which must mean that this two-year study has concluded that particular phase. I’m guessing that we should expect a paper to pop up in Autism in Adulthood at some point; I don’t know what the turnaround time typically is for analysis and paper submission.

While this Christine M. Condo piece is a must-read for neurotypicals, I do wish actually-autistic people themselves would refrain from the “high-functioning” language. The reality is what Condo herself describes is not functioning, it’s faking — and it’s the kind of faking, what we call masking or camouflaging, that frequently leads to outright autistic burnout. When we ourselves use functioning labels, we ourselves give people the wrong impression about how we’re getting along. Our own language choices matter and we’re only confusing neurotypicals when we talk functioning rather than support and accommodation.

Today might have been the first evidence of the mirtazapine’s influence beyond its side effects, as my breakfast trip was my first-ever visit to Your Inn Tavern, and first-ever visits of course are anxiety-inducers. While it’s true that I circled the place from several different walks about of adjacent streets because the “open” sign wasn’t on even though all the online listings said it opened at 10:00am, and tryng the door is the sort of thing in that situation that I need to talk myself into, that long-way-around process only carried a slight twinge in the chest. At no time did I experience what I think of as Elephant Foot (that sensation of firm and building pressure on one’s chest that feels like it’s coming from the outside, not the inside). Nor did anything beyond a twinge form when I finally did open the door, go in, and sit down. I don’t want to overplay it, because while I’m only just now in the period where the mirtazapine should be having an impact upon my anxiety, this is the only situation so far that would typically present a risk of overt anxiety signs since I started on it. So, we’ll see.

Colin’s thoughts on commuting bring back dismal memories of my last job, a Vocational Rehabilitation placement, which required getting up early enough to get cleaned, get dressed, eat breakfast, and catch a 7:00am light rail for an hourish commute. The job itself only was four hours a day, but the physical and psychic burden of that commute upon my still-only-recently-diagosed autistic self was part of what led to the crash-and-burn which ended my employment after just six months.