Collated Responses #2

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.


April 15, 2018

AAM — Day 10 (Sensory Life):

I’ve got an issue where I have trouble having people behind me. I haven’t pegged why on that.

Same here, sort of, but predominantly in work situations (e.g. it’s not a problem for me, say, in line at the grocery store); it’s why I typically cannot function in open-plan office situations. It’s an anxiety manifestation for me: I can’t handle the potential for other people to be looking at what I’m working on, although that’s mostly an issue in jobs involving working on a computer. At my last job, we were working at open tables doing quality assurance for and assembly of name badges, and the openness and sightlines didn’t get to me. (Then again, most of the work is, well, on a table, below anyone else’s line-of-sight.) But even in that sort of situation, should anyone hover behind me, or even nearby, all bets are off.

When a Performance Expert Battles Mental Illness:

Even just writing this essay makes me anxious. I feel as if by writing about my anxiety, I’m trying to exert some kind of control over it, and that it will pay me back with a vengeance.

I am actually having this problem every time I try to engage with this new thing I am trying to do here on Medium. Earlier today I came close to thinking, just says after starting in on this, that I should wipe it all clean and forget it. Every response I write, the weight on my chest increases. Every single time.

Laziness Does Not Exist.:

Often, though, the barrier is that procrastinators have executive functioning challenges — they struggle to divide a large responsibility into a series of discrete, specific, and ordered tasks.

Literally the explanation for decades of failure at proper housekeeping, extending back to childhood. Really, even many of what would be those specific and discrete tasks feel overwhelming, let alone any mental glimpse of the overall. Then everything just gets worse the longer it goes undone. Sooner or later a day comes when a seemingly random burst of energy and motivation lets me storm through a bunch of housework, but lately those days are few and far between. We’ll see how much that was an artifact of being too pressed by simply trying to psychologically survive the job I just left, which didn’t really leave much room for anything else.

There is No Cure for Mental Illness:

We’ve been working so, so hard to get to everyone else’s normal that we are simply exhausted all the time. The only reprieve we get is in sleep.

This sums the just-concluded six months of the job placement I had from my state’s Vocational Rehabilitation program, and what continues to feel like the self-inflicted wound of pushing so hard to be viewed as responsible and responsive that I stressed myself right into a series of emotional breakdowns. Where I differ is that sleep typically has been no reprieve, the night tending to bring with it marathon plagues of anxiety dreams.


April 16, 2018

When You Don’t Have One True Calling — Being a Polymath in a Highly Specialized Society:

“What do you want to be when you grow up?” Adults would often ask kids. It seems that most people changed their minds frequently when they were younger, but as they got older and older, specialization became the norm. Some figured out what they were good at and stuck to that, others figured out their dreams and passions and were lucky enough that their passions actually made money. Some are still searching and are frustrated that they can’t seem to find something that they are passionate about.

I have serial passions, which serially expire. The first job I ever wanted, when I was a kid and everyone else was in that “policeman or fireman” phase, was to be an outer space moving van driver, ferrying families into their new homes aboard orbiting space stations, an effect of seeing, when I was 5 or 6, the mid-70s released of 2001: A Space Odyssey. I never even bothered to study science or engineering. I went to college to study filmmaking, abandoning the program after a semester and then college itself after several more. Just in the last two decades or so I did some pioneering work in internet activism, ran a cybercafe business into the ground, founded and then left a small but succesful fandom charity campaign, committed several years of celebrated stand-alone journalism, had a creatively-succesful casual photography hobby, and now I project manage an urban attraction herd of fourteen goats. Along the way I had several short-lived paying jobs that had no common thread and inevitably ended. Passions aren’t my problem (although not continuing to be passionate about them is); my problem is finding a job I can survive so that I can spend the second half of my life not being dependent upon other people’s money.

Therapy is Dope:

There’s also something different about stepping outside of your head and vocalizing thoughts to another person rather than staying within it when journaling or meditating. I would leave these sessions feeling calm, clear-headed, structured, and empowered.

I’ve had a generally similar feeling when leaving therapy but I don’t think I’ve developed any tools to hold onto it at all, or even really recall how it felt, later on when it might be useful. I don’t know if that’s even how it’s supposed to work? I do know that in my last therapy session, it felt so good to walk in one door into the small office (you leave through a second, different door) and just not have the outside world in there with me that I completely forgot about three things I’d wanted to discuss despite being asked, “Is there anything else you want to talk about?” Nothing like having an executive functions failure while in therapy.

Autism and Executive Functions:

Speaking of exhaustion, it’s much harder for anyone to actively redirect their attention if they’re tired, and everyday life is often very, very tiring for autistic people. We’re expected to navigate a sensory world not designed for us, to maintain social relations based on arcane rules that nobody ever explains and to constantly adapt to other people’s priorities. Often, a lifetime of dealing with these things leaves us with additional anxieties and neuroses which make life even more exhausting. On top of that, most autistic people have trouble getting enough sleep, at least some of the time.

This goes a very long way toward explaining why my Vocational Rehabilitation job placement ended in failure after six months, as the combined stresses of waking at 5:00am, commuting over an hour, working in an environment of social pressures, commuting over an hour, living up to my nonprofit responsibilities, and maintaining my own day-to-day life led to what my therapist deemed “depressive episodes” for the first time in my life. Always exhausted, it wasn’t that I would take naps in the afternoon it was that by 3:00pm I’d feel like someone had slipped me some serious nasal decongestant (this is the only way I’ve been able to describe how it felt), and I’d be out for two or more hours. Avoiding a repeat of all of that is the necessary goal of whatever decisions I make next.

On Being Aware:

I’m aware that “misunderstands social cues” means I sometimes tell people how I am when asked “how are you?”, instead of saying “I’m fine thanks, how are you?”. I am aware that this is incorrect, but I do not fully understand why.

For the most part, I’ve at least managed pretty well to get down the hit-and-run nature of social lubricant patter of the sort one runs into from, say, the supermarket cashier. Mostly, I think, because of that hit-and-run nature: the exchange lasts only for a couple of minutes and it really is just something that holds together a network of polite, common courtesy that seems to help keep everyone’s day running just that little bit more smoothly. That said, I do still nonetheless allow myself the occasional noncommittal shrug and guttural, “Eh.”


April 17, 2018

Why I talk to myself (And why you should, too):

First, let me clarify. I don’t have conversations with myself out loud. I mainly do the talking inside of my head.

I have them out loud if I am talking about the present and what I am currently doing or need to do. I have them in my head if I am talking about the future or imagining potential future conversations. Now if someone could just tell me in the former how to stop transposing words (e.g., saying “laundry” when I mean “dishes”); and in the latter how to have fewer such hyothetical conversations so that my brain is less noisy.


April 19, 2018

Autism & Cleaning #5:

If I can give you any learning from my experience let it go. If it isn’t whole, special, used and important don’t pack it away. Don’t haul it, store it or keep it. Especially do NOT pay to store it. Let it go, donate it, give it, free it — and free yourself. Clothing will be out of style, furniture can be replaced, toys and collections do not have the value that you think it does — let it go.

This is one of my next major challenges. My problem is that (true to form), I fall into a spiral of considering who gave something to me, what they might think of me getting rid of it (not that they’ll ever know, and in some cases they are dead, but that almost makes it worse). I desperately want to pare down the ten or so storage bins I have in various closets to at the most two. But just thinking about it makes my chest compress.

When Your Body Throws on the Emergency Break.:

It’s crucial to recognize that for some days, or weeks, or months or even years, work needs to be something you do in between living and taking care of yourself. Not the other way around.

This is a tough one for me, because I’ve already spent years not working, putting stress and strain on family resources both financial and psychological, before I ever received the diagnoses that helped explain just why I’d spent so much time not working. Now that I have such explanations, I did the right thing and worked with my state’s Vocational Rehabilitation people only to agree to a job placement that pushed me into depressive episodes for the first time in my life, and I had to abandon that job just six months in. Now it’s back to financially and psychologically stressing both myself and my family again. It’s tough not to see the situation as lose-lose.

‘Label Me’ Mom:

If anything, I feel we should be moving more toward acceptance of whatever sets us apart and stop trying to hide it so much, especially where anything related to the brain and mental health is concerned. I have taught my son that there is no shame in having autism, and he shares this freely as he sees fit. He has learned that he can advocate for himself in school, to ask for a quieter environment, to take a break when he is feeling overloaded, and in a job interview he recently shared why certain positions would be difficult for him and how his autism would make him an excellent candidate for other positions. He is always a person first, but his autism is part of what makes him who he is and I do not discourage him from identifying with that.

As I’ve written elsewhere, as someone who received his diagnoses as an adult I am determined to live its implications and explanations transparently. Oddly, sometimes there are still roadblocks and tripwires: my last workplace, found through Vocational Rehabilitation, was as a general rule very receptive to transparency on such things, and possibly as flexible and progressive as a workplace can be. In the end, though, the work environment still was too much pressure on my particular and personal spectrum. Despite that, it’s in no way put me off, as that transparency was what made my departure understandable to them, and as I prepare for an upcoming three-day temporary position I take one or two times a year, I’ve already given them the head’s up that while I don’t expect that environment to be a strain, I wanted them to be aware of it in advance just in case. I get why some people won’t be comfortable with being visible about it, but I can’t really conceive of another way for me to navigate this experience.


April 20, 2018

Spectrum:

Each aspect of my body, my brain, my emotions, my senses and my abilities are a lever or knob on a soundboard. Some are set permanently and have been consistent throughout my whole life. Some have changed and either moved higher or lower as I age or mature. Others whip up and down in minutes if I’m triggered or hungry, lonely, angry or tired.

This, hands down, is my favorite metaphor, and much more reflective of how I actually feel. I saw another one, recently, that was this weird sort of color wheel that just made my brain hurt and I couldn’t at all envision how to make use of it. The soundboard makes so much more sense to me as a way to explain not only where I am today, but where I was in the past (before I even had a diagnosis), and where I differ from others with their own diagnoses. I’m especially fond of how this metaphor, as you point out, corrects the deficiency in the “high-functioning”/”low-functioning” language.

How to Be Polite:

Mostly we talk about politeness in the moment. Please, thank you, no go ahead, I like your hat, cool shoes, you look nice today, please take my seat, sir, ma’am, etc. All good, but fleeting.

I actually think these aren’t fleeting at all, as they help reduce the weight of any given person’s day, so that in addition to any serious weight they are carrying they are not also carrying the accumulated weight of everyone around them being thoughtless. Common courtesy has power. Why am I bringing this up in a space where I’m focusing on writing my way through my autism? I find, on my personal autism soundboard, that while many of my issues cluster around social communication, these particular sorts of social lubricant interactions, given their transient, hit-and-run nature, are well within my ability to participate. This is not to say that, on occasion when asked by a cashier how I’m doing, I won’t still offer a noncommittal, somewhat guttural, “Eh.” And it’s not to say that I won’t try to escape as quickly as possible if you start a monologue about the bike ride you took yesterday where you got caught in the rain. It’s just to say that I think these exchanges aren’t fleeting at all but instead somewhat cumulative. And, in a way, I find them more honest than the PUA-like emotional manipulation of telling someone their job seems hard.

What is reassurance? And is it bad?:

The difference is subtle, which points to the confusion most of us face when trying to decide how to help someone. But remember the chain of events: uncertainty -> distress -> behavior. Reassurance-seeking is an attempt to get rid of the distress by getting rid of the uncertainty that underlies it. Support-seeking, however, is an attempt to have someone encourage you while you deal with the distress caused by your uncertainty. It means allowing the uncertainty and distress to exist while also acknowledging that it’s easier to succeed with the support of others.

I ran into this post not long after I put up a Patreon page related to my Medium activity, on which I explained that “$1/month will help me through those moments where I feel like the writing isn’t worth the anxiety of its effort, and I find myself mulling simply erasing everything I’ve written”, and it’s taken me a hilarious three hours to decide that’s more akin to the latter than the former, in that the anxiety that hits me whenever I am reading mental health posts on Medium, let alone when I am posting responses, is, frankly, going to be there until and unless it isn’t, but it would be nice to have some encouragement that what I’m doing is worth it.