Collated Responses #6
My weekly roundup of responses I have posted to other people’s posts here on Medium, for those who don’t feel like scrolling through the Responses tab on my profile.
May 14, 2018
Living On Purpose: Why I Reject All Labels:
I know labels and diagnosis are supposed to be useful.
Mine are extraordinarily useful. When your brain is wired in a way that conflicts with the ways in which the world around you is constructed (which, after all, was constructed for people with very different wiring), I find that being able to describe the whys and wherefores of that conflict certainly help me navigate, and, further, help other people adapt to me, so I’m not always the one, quite unfairly, doing all the work.
Autistic and Gifted — why is it all so hard?:
What do I mean by gifted? Well, a definition is: ‘individuals whose skills or talents exceed above-average levels of human performance’. Giftedness is usually correlated with IQ scores (130+), but giftedness can also belie artistic brilliance or talent.
At some point after I uselessly (in that IQ tests are socially and culturally biased toward a particular set of skills valued by society and frequently misused to push racist policies) was said to have an IQ of 142, my high school put me in its “gifted and talented” program. I hated it, and opted out after a year (maybe less, I don’t recall). What I hadn’t been deemed in high school was autistic. That diagnosis didn’t come until three decades later. Looking back, I think I’d rather have had these events happen in the reverse order. This isn’t really responsive to anything in particular here; I just hadn’t thought about any of it until I ran across this post.
Americans Spend More Time Alone than Ever — but That Doesn’t Mean We’re Lonely:
Research finds that loneliness and social isolation are equally bad for health. On average, people who report being lonely have a 26 percent increased risk of death compared to those who are not lonely. Those who live alone have a 32 percent increased risk of death, and those who are socially isolated have a 29 percent increased risk of death.
Does “live alone” mean entirely alone, or does it include living with pets? Is there a difference in life expectancy between loners and loners with pets? How about people who are socially isolated because, for example, the particular feature set of their autism makes that less stressful — and potentially less traumatic on both body and mind — than not being socially isolated? I feel like there’s got to be an analogue to intersectionality here: I am socially isolated but also autistic, and how do those interrelate? Sure, I am comparatively socially isolated, but if I weren’t, as a matter of my own self-care, I’d be a wreck. I assume that would suppress my life expectancy, too. You also write, “[People online] aren’t necessarily the people Americans … turn to when we need help.” I can’t speak for anyone else, but I get far more effective support from people I know online having my back when things are getting rough than I do from people I know in person, if only because the social communication stresses and burdens of receiving support face-to-face far outweigh the supposed normative benefits.
My father feels the same way about his Asperger’s Syndrome.:
If you don’t like the limit this “wiring” is supposed to place on you, I’d say question that limitation, and maybe even that label.
This, I’m sorry, is ridiculous. The world is wired one way, my brain is wired another. The world by its constructed nature necessarily creates limitations — or, at least, barriers — for those who don’t fit its mold. (It’s far less pervasive and damaging than, for example, the constructed world’s white privilege, but it’s a similar creature in that it’s a field of social force that’s invisible to those whom it benefits). The limits, or barriers, exist. Recognizing that conflict, and the power that the label has to make people aware that the conflcit even exists in the first place — because most neurotypical people don’t see it — is actually a critical part of navigating, or navigating around, those barriers.
How would a quiet person with Asperger’s survive in prison?:
TL;TR: If you are autistic stay the f**k out of prison, cause if you get in you may never ever get out.
I cannot for the life of me think of any reason for me ever to end up in prison, but I’d be lying if I said that even just reading about the idea makes the dead center of my chest ache.
Pygmy goats were developed in West Africa, then sailed to Europe and the Americas with the colonial conquerors. They dance, they tell jokes, and they don’t drink out of the toilet, which makes them popular pets.
To my knowledge, none of our pygmy goats have ever told any jokes, but occasionally they will look at you as if they have, silently, in their own heads, and probably at our expense.
Undiagnosed Autism in Schools:
You leave school hating the very thought of higher learning, determined to avoid it at all costs, and with nearly double your class-mates’ number of missed days, because there were day that you didn’t have the emotional energy to face your own personal Hell, or when that day’s classes were full of bullies, and you knew that this time the results weren’t going to be as mild as picking paper balls out of your hair on the way home.
I wish that I could remember more of my school days to determine if I was bullied. I remember the kid in my Spanish class who, because the teacher called me Cristóbal, called me Crystal Balls and ridiculed me for apparently wearing my pants too high. I also remember days when I did things like fake a fall on the ice on the way to the school bus so that I could stay home instead, but for the life of me I can’t recall why, or what was happening at school that made me do that. I’ve been reminded by my family that for part of my high school career we successfully placed me in “adaptive gym”, normally where you went if you were injured, and while I don’t recall if I was bullied, I do know that gym class was a nightmare for me, being, as I was, unable to do anything, and also being one of the prime target in dodgeball, except that in our school it wasn’t called dodgeball. It was called murderball, by everyone including the gym teachers.
Another way that I see us as living the categorical imperative is that we are non-judgemental. We generally do not judge. Your age, neurology, gender, sexuality, fame etc. do not make you greater or lesser in my eyes.
I’m definitely more judgmental than this. I think I do tend to be more skeptical of people who are famous, for example, because I’m often very skeptical of how they achieved that fame. I’m dismissive, say, of so-called “influencers” on social media because to bastardize Leslie Knope, “influencers” is nothing. I’m also more judgmental about men, particularly white men, despite being one myself, because, well, look around. It’s true that I’m mostly judgmental about behavior, not identity (i.e. you’re a terrible person if you’re not using headphones while watching that YouTube video on the bus), but I definitely can’t declare that’s the limit to my judgmentalness.
May 15, 2018
Autistic Burnout I bid you good day!:
Doing the work, has never been the issue for me at all. It’s all the other stuff, the hidden workplace curriculum. It’s a curriculum that the neurotypical mind just seems to get, to understand innately somehow. But for the autistic person, this one anyway, it’s like the old saying ‘it’s all Greek to me’.
This is hilarious to me, as the really shorthand way I tried to describe the problems I was having at my Vocational Rehabilitation job placement earlier this year was, “I can do the work, but I can’t do the job.”
To me it seems odd that inertia is often so far down the list of things that people associate with autism — like you, I find it probably the single biggest problem I have that stems directly from it (especially since I’ve made more autistic friends and learnt to negotiate social interactions with allistics a bit better).
Until this week I had never heard or seen the phrase “autistic inertia”, and between it and “splines theory”, these have been really interesting days for me because these things have been providing such vivid descriptions of my life. I still don’t know how to convert my increasing store of resonant description into concrete ways to make a more sufficient (I won’t say successful) life, but, really, I’m finding so much information that’s a godsend right now.
May 16, 2018
Inertia is best understood as resistance to a change in state. That can mean trouble getting going, but it can also mean trouble changing tracks, or stopping once you’ve started. Any of those can manifest as getting stuck, and this can be a hugely disabling thing for many autists. This happens when we’re supposed to be doing something that’s of no interest to us, especially when we can’t even understand the point of it. It also happens when we’re supposed to be doing something really interesting, but can’t quite build up the momentum to get started with it.
This right here, I think, is going to be the biggest component of my autism that I’m going to have to make Vocational Rehabilitation understand should I try using their services again. The job placement I got through them, which I still understand superficially why my job coach thought it might work, became a sort of “I can do the work but not the job” situation for me. Much of the work itself tended to be long stretches of doing the same things, which is great for me in a job context. But much of the job part involved both close-quarters social communication, task-switching when a higher priority cropped up and needed to be injected into the flow of things, and occassionally-inconsistent direction as to what counted as a higher priority project. Reading up on autistic inertia is my next big thing, because without being able to communicate it to any future job placement people, they’ll never find me a workplace environment that, well, works.
May 18, 2018
Learn to problem solve properly and on paper. Problem solving when distressed is hard. Practice this when calm so that you can create a balanced plan of how to proceed in the face of anxiety (rather than going with the first disaster outcome that comes to mind).
I find it weird that people apparently are capable of this. Writing things down about myself in and of itself can cause me distress. I had to walk away from the table at a recent job because the (otherwise useful) training session on equity and diversity out of nowhere included a module asking us to write down our personal “identity circle” components and then discuss them with the other three strangers at our table. I can’t imagine ever being able use a distress-causing process to manage distress.
Grimes situates introversion — as well as other traits such as neuroticism — as being indicative of a degree of autism which exists somewhere on the ASD spectrum. That is, perhaps it is not correct to say that autistic individuals test low for extraversion, but that introversion is a factor of autism.
This is fascinating to me primarily because, as I wrote here recently, before my autism diagnosis I had found most of the elements of introversion very resonant and found it a useful tool to manage, or really navigate around, certain social stresses, both in terms of how I dealt with them internally and how I justified my reactions to the world externally and to other people. It was the only toolkit I had pre-diagnosis to deem, to myself if nothing else, certain behaviors and reactions as being okay. I’m not sure, as a layman, that I’m convinced introversion actually relates to autism, but the language if introversion certainly helped me explain to people what my limitations were, in a social communication context, before I learned that the language of autism was far better and far more responsive.
Why Instagram Makes You, Me and Selena Gomez Feel Bad:
In her interview with Vogue, Gomez mentioned something else revealing: “I love Kevin [Systrom], the creator of Instagram, and he has gotten mad at me in the past when I was like, ‘I have to take a break from it.’”
Systrom probably doesn’t care that I had to pare back my nonprofit’s use of Instagram because the switch to an algorithmic feed literally causes me autistic distress.
Autism: Not A Brain Disorder With A Genetic Basis?:
Autists are very smart. They are thinking, creating, and designing even better than most others. So, we know there’s no kind of “damage” to the brain. And I don’t think autists necessarily want to become “normal”, but I do think they want to engage with the world better.
I find it strange that anyone weighing in with any claim to authority could with a straight face make such sweepingly-broad generalizations about autistic people. The only words that should ever follow “autists are” is “all different”.
A New Journal dedicated to research on Autism in Adulthood:
The start of this new journal reflects the increased awareness of autism in adulthood and the concomitant impact in terms of scientific research. The editorial board consists of both professionals as ASD peer counselors. All submitted papers are reviewed from an academic as a peer-ASD perspective.
I just pulled down a few of the PDFs, and then remembered that I’d learned the other day that Nicolaidis is a local here in Portland, which led me to her AASPIRE website. Actually feeling slightly overwhelmed at all the new-to-me stuff I need to look at now.