Dark forests like newsletters and podcasts are growing areas of activity. As are other dark forests, like Slack channels, private Instagrams, invite-only message boards, text groups, Snapchat, WeChat, and on and on. This is where Facebook is pivoting with Groups (and trying to redefine what the word “privacy” means in the process).
These are all spaces where depressurized conversation is possible because of their non-indexed, non-optimized, and non-gamified environments. The cultures of those spaces have more in common with the physical world than the internet.
First, and make no mistake here, all three sacred learning spaces will have analogs in cyberspace. If they don’t, then cyberspace will cease to exist as a domain of interaction among humans. Those using the new media will create their own analogs for these learning places, even if they are not designed into the system.
Autistic man Freestone Wilson suggested in the 1990s that autistic people are functioning as the “miners’ canaries” of civilisation. When the air in the mine is poisoned we do not prevent canaries being born in case they suffer from the poison and upset us: we clean the air or close the mine.
…at the same time, Asperger insisted that the non-compliance of his patients, and their tendency to rebel against authority, was at the heart of what he called “autistic intelligence,” and part of the gift they had to offer society.
I keep my sensory kit in an Arcteryx Maka 1 belly bag (a waist/fanny/lumbar pack worn front). My belly bag is always with me. Anything I carry around this much can’t be on my back. It must be curated down to the things that are worth their mass and worn below the aching suspension of my pained back. I’m stooped enough. Waist packs worn front hit a sweet spot of retrievability, gravity budgeting, and pain management. I can bear the weight, and when I unzip the compartments, everything therein is first order retrievable.
The following are things I use to manage overwhelm, conserve spoons, and get through each day. With the exception of the noise-cancelling headphones and the bluetooth sleep mask, they all reside in the belly bag. These are tested in the field of my disabled and autistic life. While attempting brevity, I’ll describe how each fits into my flow.
Foam ear plugs can amplify my tinnitus. Even when they turn up the ringing, I keep them in because I sleep better through tinnitus than ambient sound.
Vibes don’t block as much sound as foam ear plugs, but their “breathability” amplifies my tinnitus less. Lately, I’ve been using the Vibes as my go to sleeping ear plug with good results. In noisier environments where I want isolation, I use the foam.
The stems serve as handles, making extraction much easier than with foam.
The snap case that comes with the Vibes is large enough to hold both the pair of Vibes and a pair of foam plugs. I like the size and affirmative closure of the snap case, though it requires two hands to open. It fits easily in the smaller compartment of my belly bag.
Nose-cancelling headphones are also part of my go-everywhere sensory kit. Since they don’t fit in the belly bag, they are usually to be found around my neck. I feel better knowing they’re there.
They’re expensive. To get their full benefits, you need an expensive iPhone. I wish this accessibility tech was more affordable, because AirPodsmakemefeel augmented, especially with the arrival of Siri Shortcuts. AirPods provide convenient sensory management and a voice interface to my cognitive net. I leave these in for hours at a time: playing music, setting timers and alarms, creating tasks in Things, and accessing the checklists that order my life. When not in my ears, they stow comfortably in the belly bag in the same pocket as the Vibes snap case (and some other stuff).
I forget I have these hanging from my ears. “Hanging” is the key to comfort. When I first got them, I was “inserting”. Ear burn came on quickly because their hard plastic was pressing against the ridge poking out along the top of my ear canal. Once I let go of the “you gotta push ‘em in there to not lose ‘em” anxiety and started hanging instead of inserting, comfort came.
Two taps to pause. Remove a bud to pause. Instant pairing. Siri Shortcuts. Disability means getting used to bad flow, flow not designed for you, flow not accessible to you. This is good flow that removes some thoughtlessness and frustration from my world.
I once heard a blind person say, “With my cane, my brain, and my trusty iPhone, I can go anywhere.” I agree with the statement completely, but it’s time to update that statement to the 2018 version:
Give me a set of AirPods to go with my iPhone, and I can go anywhere-and surreptitiously know a lot about my environment while doing so.
I’m light sensitive, so my go everywhere sensory kit also includes a sleep mask. I like ones with raised eye cups, such as the Wirecutter recommendedNidra Deep Rest. The Deep Rest rolls up compactly and fits comfortably in the large compartment of my belly bag right alongside my sunglasses.
Bluetooth Sleep Mask
Unlike the other parts of my sensory kit, I don’t carry this with me all the time. It’s usually on a bedside table, though I’ll loop it through the belt of my belly bag when I want to keep it with me, such as on a car trip.
I use the mask from Topointas recommended by Brett Terpstra. The padded nose bridge lifts the mask off the eyes. There’s not as much eyelash clearance as the Nidra Deep Rest, so your lashes might brush the mask when you blink. With eyes closed, I have the clearance I need to be comfortable.
The controls are placed on the left cheek. After laying on my left side for awhile, the pressure is noticeable, though I can still fall asleep.
The controls are certainly not the easiest to use without looking, but I got the hang of it. Since I put the mask on when I’m ready to fall asleep to a favorite playlist or to a white noise generator, I don’t interact with the controls much anyway.
These don’t provide the isolation of an over-ear or ear buds, but they do a good enough job to put me in the sensory space I want to be in.
This mask sleeps hotter than the Nidra Deep Rest.
Sunglasses and Light-reactive Glasses
My bifocals have light-reactive, photochromic lenses that protect my light-sensitive eyes without having to swap into sunglasses whenever I walk outside.
Light-reactive lenses react to UV. Car windows block UV. I always keep a pair of dedicated sunglasses in my belly bag so I can use them when in the car or indoors.
I always have a hat with me. They are an important part of my sensory management. Beanies are my go to because they’re light, packable, cover my ears, and provide gentle, even pressure to my scalp.
My lightest weight beanie is a Smartwool PhD Ultra Light. It stuffs down small enough to keep in my belly bag at all times. This hat can actually cool me down when out in the sun. It blocks some rays while wicking sweat. Sometimes, I put it on and immediately feel that evaporative cooling sensation.
It doesn’t go down over the ears as much as I’d like, though. I find myself trying to tug it down. Smartwool, a slightly longer PhD Ultra Light would suit me fine.
My go to beanie is the Smartwool PhD Light. It has the full ear coverage I like. It’s notably heavier than the Ultra Light since it is two layers instead of one, but it still packs down small enough to fit in the belly bag.
Smartwool’s The Lid comes out when I need a little more warmth. It’s too big to pack into the belly bag, so I loop it through the belt of the bag.
I like the fit and scalp pressure of Smartwool’s beanies.
I make my own stim jewelry from beads and beading wire. I keep a stim loop attached to the belly bag. I put a finger’s width of slack in the wire of the loop so that I can spin and slide the beads. It can be used one-handed while attached to the bag or can be removed for two-handed play.
I use a length of light shock cord as a zipper pull. The stretch is stimmy goodness. I ran the cord through a piece of rubbery tubing. I enjoy the texture and the tug of this simple stim.
Medications and chronic pain can increase distractibility and impact cognition. I attach Tile trackers to keys, canes, headphones, purses, and bags. I attach one to the key leash of the belly bag. Searching for necessary coping tools while grimacing with pain is frustrating and dispiriting. Tile trackers provide a comforting cognitive net.
Double pressing the button on the Tiles rings your phone. With a Tile on my belly bag (as well as on my headphones and canes), I’m always able to summon my phone from its hiding places in the depths of couches and bedding.
They have to be replaced each year, which gets expensive. Tile is starting a subscription plan to make yearly replacement more affordable, but they still ain’t cheap.
The Three Roles of the Belly Bag
The principal role of my belly bag is to keep my sensory coping kit at hand wherever I am.
AirPods (sensory management in a soundscape of my choosing, wishlist: AirPods with noise cancellation)
Vibes earplugs (sound isolation)
foam earplugs (sound isolation)
sleep mask (light isolation)
sunglasses (light isolation)
moisturizer (psoriasis maintenance)
lightweight hat (sensory management)
Throw in a cane and my big noise-cancelling over-the-ear headphones, and I’m good (enough) to go.
The secondary role of the belly bag is to augment my memory and be a part of my cognitive net. Belly bag is my toolbox for maintaining my stack and remembering what the heck I was just doing. Chronic pain is distracting. I lean on my net to help me through autistic burnout and fibro fog. With these tools and my phone, I can generate the lists, tables, labels, and badly drawn sketches that help me get stuff done despite pain and gravity poisoning:
Phone slip pockets are a must-have feature for me. When your phone is assistive and augmentative cognitive net, retrievability in the moment is important. The Maka 1’s slip pocket is a bit tight due to my card stuffed wallet case, but the holstering interaction lost friction as the bag and I found a rhythm. Any phone smaller than an iPhone 7+ bearing a crowded wallet case (pretty much everything?), will fit fine.
I’m always tinkering, and these are the very useful things I need most often. Small and practical, they cover the quiet needs of the every day: opening bottles of cold sparkling water, snicker snacking through packing tape and zip ties, lighting candles, peering into cramped utility spaces, taking measurements for the next project in the Casita remodel, cleaning lenses, making templates.
I’ll roam again from the confines of the belly bag to mention an important component of my sensory management: hoodies. I like soft cotton and microfleece hoodies with zipper fronts, ample hoods, and plenty of pockets. I live in hoodies. I recede into their comforts. They provide sensory insulation.
I have limited shoulder flexibility and cramp readily when trying to shimmy out of long sleeve pullovers. All of my outerwear has a means of escape, preferably a YKK zipper.
What’s in Yours?
That’s my sensory kit. What’s in yours?
Do most autistic people want a cure? No, survey after survey shows that most do not want a cure. Most are happy being autistic. They would like lives that are adapted so that they cope with the noise and chaos of the surrounding world in better ways. Society insists on making education, healthcare etc into a sensory hell, and we have to navigate it. Headphones, sunglasses, different clothing, etc can make a big difference. That’s really cheap to achieve for a lot of us, with a small budget from a provider. Hold that thought….that it’s really cheap to achieve for a lot of us ….because it is. If you know what you’re doing. If you ask the autistic person what helps, after having autism training from autistic people, so you know your subject. If someone really wants a cure for autism (rather than the pain they’re put in by others), fair enough.