A #ChronicHolidays Gift Guide for Chronic Illness, Chronic Pain, Sensory Management, and Stimming – 2018 Edition

Mine is a tiny empire of foam, articulation, and assistive devices. Scheurmann’s kyphosis, lumbar spondylolisthesis, fibromyalgia, wildfire muscle cramps, muscle-boiling fasciculations, and peripheral neuropathy are constant companions. As are sensory overwhelm and the effects of autistic burnout.

In this guide are the things I use to conserve spoons, stay below sensory thresholds, and get through each day. These are tested in the field of my disabled and neurodivergent life. While attempting brevity, I’ll describe how each fits into my flow.

I link to Wirecutter reviews for many of these items. They show their research and list alternatives. Disclosure: Some of the links below are Wirecutter Amazon affiliate links. Wirecutter is a New York Times company.

Contents:

  • Sensory Kit
    • Foam Ear Plugs
    • Vibes Ear Plugs
    • Noise-cancelling Headphones
    • AirPods
    • Sleep Masks
    • Bluetooth Sleep Masks
    • Sunglasses and Light-reactive Glasses
    • Beanie Hats
    • Stim Toys
    • Communication Necklaces
  • Pillows, Bedding and Bolsters
    • Shredded Foam Pillows
    • Neck Pillows
    • Body Pillows
    • Coccyx Pillows
    • Heating Pads and Blankets
  • Articulation
    • Rolling Floor Stands
    • Monitor Arms
    • Gooseneck Clip Phone Holders
    • Neck/Lazy Bracket Phone Holders
  • Sitting
    • Task Chairs
    • Portable Moon Chairs
  • Standing
    • Standing Mats
  • Mobility
    • Folding Walking Canes
    • Flipsticks
    • Rollators
    • Wheelchair Upgrades
  • Hydration
    • Water Bottles
    • Travel Mugs
  • The Toes Knows
    • Cozy Slippers
    • Custom Orthotics
    • Motion Control Shoes
    • Yankz and Lock Laces
    • Accessible Shoes
  • Clothing
    • Zipper Hoodies with Pockets
    • Thai Fisherman Pants
  • Tracking and Finding
    • Tile Trackers
    • Eyeglass Chains
  • Cutting and Opening
    • Utility Knives and Scissors
  • Schlepping
    • Utility/Shopping Carts
  • Music and The Golden Age of Television
  • The Future is Accessible, Accessibility Matters, and Ableism is Awful Apparel
  • Sex Toys
  • Medical Cannabis
    • Dry Herb Grinders
    • Dry Herb Vaporizers
    • Rolling Papers and Tips
    • About Botanicals
    • Concentrate Vaporizers
    • Silicone Water Pipes
    • Quartz Bangers
    • A Good Torch
    • CBD
    • Medical Marijuana Accessibility

Sensory Kit

My sensory kit is always with me. It helps me manage sensory overwhelm and avoid meltdowns and burnout.

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.

Foam Ear Plugs

I can’t sleep or endure noisy spaces without ear plugs. I take them everywhere. I’m currently using Wirecutter’s top recommendation, Mack’s Slim Fit Soft Foam Earplugs. Hearos ear plugs also work well for me.

Vibes Ear Plugs

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.

Noise-cancelling Headphones

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.

I use the pricey Sennheiser Momentum 2.0 Wireless headphones that I received as a gift from work (thanks Automattic). For more affordable options, check out Wirecutter’s recommendations.

I don’t leave home without noise-cancelling headphones and my favorite sensory management playlist (Spotify, Apple Music).

AirPods

They’re expensive. To get their full benefits, you need an expensive iPhone. I wish this accessibility tech was more affordable, because AirPods make me feel 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.

Source: Travelling into the Future: My Brain, my Cane, and my Trusty AirPods | Chelsea cook: Celestial girl

Sleep Mask

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 recommended Nidra 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 Topoint as 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 currently use polarized prescription sunglasses from Warby Parker to supplement my photochromics. Sunglasses make incompatibly lit rooms more hospitable. Wirecutter has recommendations for cheap non-prescription shades.

Beanie Hats

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.

Stim Toys

Beads are stimmy goodness. 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.

A stim loop made from brass ball bearing beads, turquoise heishi beads, copper basket beads, and irregularl shaped turqiouse beads with one flat side. Medium weight beading wire holds it all together. The loop rests on a white beading mat.
A stim loop made from brass ball bearing beads, turquoise heishi beads, copper basket beads, and irregularl shaped turqiouse beads with one flat side. Medium weight beading wire holds it all together. The loop rests on a white beading mat.
Another view of the stim loop resting on a green cutting mat with a white ruled grid.
Another view of the stim loop resting on a green cutting mat with a white ruled grid.

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.

A yellow shock cord with rubber tubing attached to a zipper pull of the belly bag. My finger pulls the cord to demonstrate the stretch. A fuzzy pink pillow is in the background.
A yellow shock cord with rubber tubing attached to a zipper pull of the belly bag. My finger pulls the cord to demonstrate the stretch. A fuzzy pink pillow is in the background.

StimTastic sells lots of different stim toys.

Stimtastic is affordable stim toys, chewable jewelry and fidgets for autistic adults and teens as well as individuals with SPD, ADHD/ADD, dyspraxia . . . everyone who stims! Run by an autistic person, Stimtastic celebrates stimming as a natural part of our lives.

Source: About Stimtastic — Stimtastic

Antsy Labs sells fidget cubes and spinners.

Communication Necklaces

Promote neurological pluralism and “opportunity but not pressure” with communication necklaces.

Pillows, Bedding and Bolsters

Any part of me that touches the world is gonna ache soon enough. Pillows improve my relationship with gravity, which pulls like a sickness.

Shredded Foam Pillows

I’ve tried various foam pillows over the years, but their heavy density and warm nature didn’t work for me. Shredded foam pillows fix these problems. Though heavier than down and poly fill, they’re not as heavy as the solid foam of old. The extra weight vs. the lighter fills gets you some moldability and conformability. I mold out space to accommodate my AirPods when side-sleeping. I can even mold out enough space for my big over-ear cans, though that’s still not quite comfortable.

Once again, I tried the WireCutter recommendation, the Xtreme Comforts Shredded Memory Foam Pillow (standard), and am happy with the result. The Extreme Comforts comes overstuffed, allowing you to remove the fill until you get the feel you like. I removed enough to stuff a small sham for use as a head pillow when lying against my shredded foam reading pillow. Shredded foam has taken over my bedding.

I don’t overheat in this pillow. Good temperature regulation and moldability without burdensome weight make for a pillow that works for me.

Reading Pillows

I can’t work without reading pillows. I work from bed. Reading pillows sit me up to where I can be productive at a keyboard.

After reading Amazon reviews on various reading pillows, I settled on the Linenspa Reading Pillow – Large Design for Adults – Shredded Memory Foam Blend Fill. I liked it enough to buy a second one. Shredded foam really works for me in this application. It conforms and supports nicely. The arms are in a good place for me and can be pushed aside when I don’t want them.

This pillow is big and rather heavy. I invert mine to fluff it every few days. The size makes the process a bit of a wrestle.

This pillow doesn’t provide head support (at least not at my 5’8” height), so I supplement with the shredded foam stuffed sham mentioned earlier. I made it the thickness I need to fill the gap between my head and the wall. Pillows that are stuffed even just a little bit too thick pitch my head forward uncomfortably.

Neck Pillows

Of the travel/neck pillows I’ve tried, only the Travelrest Ultimate Memory Foam Travel Pillow suits my needs because it removes the thickness at the back of the pillow so that my head doesn’t pitch forward. Pillows that don’t reduce thickness behind the head are non-starters.

Like so many travel pillows, the Travelrest presses against my AirPods and over-ear cans. Someday, I’ll find a pillow that removes the rear thickness, contours around headphones, and still supports my head when it’s lolling to the side.

I use neck pillows in the car and also, at times, while working from bed. There are days when my neck gets tired of keeping my head on.

Body Pillows

The Company Store Down-Free Fill Body Pillow is my cuddly alignment companion. I’m a dedicated side sleeper even though becoming a back sleeper would ease some pain. A full length body pillow reduces distracting shoulder and arm pressure and aligns my hips and knees.

Side-sleepers may find it comfortable to hug a body pillow, reducing pressure on the bottom shoulder and arm. It can also be comfortable to tuck the pillow between the knees, preventing the pelvis from tilting forward or backward: “If you sleep on your side without a pillow between your legs, the muscle fibers can get overstretched,” Ryan told us. Keeping the ankles separated and parallel during the night can also be comfortable, Ryan said, especially for people who experience swelling.

Source: The Best Body Pillow: Reviews by Wirecutter | A New York Times Company

A 72”, this pillow is longer than I am tall. I like that. It’s a feature The Company Store pillow has over others, as noted in the WireCutter review. I considered going with a shredded foam body pillow since it works for me in other applications, but decided to go with a lighter fill given the long length. I don’t regret it. The TCS body pillow has the right amount of loft, poof, and rebound.

Coccyx Pillows

I take a coccyx pillow everywhere I go, especially when navigating the usually awful chairs of the medical model. These make waiting in a doctor’s office more bearable. I’m sitting on the ComfiLife Orthopedic Coccyx and Posture Support Wheelchair and Office Seat Cushion as I write this guide.

The two coccyx pillows I see most often recommended are the ComfiLife and the Aylio.

Heating Pads and Blankets

I have too much kyphosis (curvature) in my spine. The result is constantly aching back muscles stretched like cables supporting a poorly designed suspension bridge. I pretty much live on a heating pad to ease the deep, abiding ache. Check out the Wirecutter recommendations for heating pads and electric blankets. I use their top recommendation, the PureRelief XL – King Size Heating Pad, daily.

Articulation

I can’t hold a phone, tablet, or e-reader for long without hand, wrist, elbow, shoulder, and neck pain. I can’t use a laptop unless it’s positioned just right. So, I articulate all the things. I spend a lot of time in the supine; articulated tablet, laptop, and e-reader holders are a must.

Rolling Floor Stands

We have three LEVO Deluxe iPad Floor Stands that have survived years of continuous abuse. They are tough and stable. The kids use the arms as stim toys for fidgeting feet and even ride them around the house like scooters. These stands have held up through all of our indelicate attentions.

I glued large rare earth magnets (salvaged from some aquarium equipment) to their faces. I like magnetic phone attachment.

I roll these up next to the bed or couch whenever I’m spending time on my phone or e-reader. Not using them is to invite pain.

Monitor Arms

I clamp an Ergotron LX Tall Pole LCD Arm to my bed frame. It is fitted with an extension arm and a laptop tray. This provides the articulation I need to find a comfortable repose whether watching TV or sitting up against my reading pillow and typing. The tall pole provides mattress clearance, but if you have a super-thick mattress you might have to get creative with clamping.

I love this arm. It hovers my laptop over me in bed, making work possible. I’m glad I got the extra extension arm. It adds needed height to clear me in bed and extends its range to the width of the bed. I strap a UE ROLL 2 to the extension arm. This puts it at the prefect height and orientation to send sound up along my reclined body.

Consult Wirecutter’s monitor arm review for options.

Gooseneck Clip Phone Holders

Gooseneck phone holders aren’t so great for actually using your phone while mounted. They jiggle too much. However, when watching a movie in a hotel room where I don’t have my floor stand, they save a lot of pain. I clip one to my bedside table and throw it in a tote bag when I travel.

As with the floor stands, I glued a magnet to my holder. I got a clamp style holder, but the jaws are quite deep enough for my iPhone 7+ in a wallet case stuffed with cards. Actually, I glued a magnet to a small metal rolling tray that happens to fit the jaws of my holder. Holder clamps tray, magnet on tray hold phone. Magnetic versions aren’t as common, but I should try one.

Neck/Lazy Bracket Phone Holders

I’m always looking for ways to save pain while using my phone. Often, neither focal range on my bifocals is comfortable for reading because neck and shoulder pain limit the positions in which I can hold a phone. In such moments, I take off my glasses and put my phone on a GoWith [Magnetic Tablet & Cell Phone Holder worn around my neck. This way, I can position my phone exactly where I need it to accommodate both my eyes and my neck.

I usually use this when sitting outside reading. I’ll sometimes walk around with it on while running through household checklists.

Sitting

Task Chairs

If you love your spoonie to the tune of 800 – 2000 bucks, I can recommend the Steelcase Leap, the Steelcase Think, and Soma Ergonomics chairs. We’ve had all three around the house for several years, and they are well-built survivors. The Leap is approaching twenty years old and still holding up comfortably.

Wirecutter recommends the Steelcase Gesture. I’ve never tried it, but I’m sure it’s good.

Portable Moon Chairs

Moon/saucer chairs certainly aren’t for everyone, but I take a big CORE padded moon chair or KingCamp Sofa moon chair with me to outdoor events. I use them at home too for lounging outside. I like the room big saucers provide, and they support my curved back more comfortably than upright chairs.

A light, cheap, packable option for brief sits is the Coleman Event Stool.

Standing

Standing Mats

I couldn’t cook or wash dishes without standing mats in the kitchen. These extend my functional time and reduce painful bouts of sciatica, paresthesia, and fasciculations. I use the Imprint flat mat suggested here.

Mobility

I use a few mobility devices to extend my range and stay below thresholds.

Folding Walking Canes

My Switch Sticks folding walking cane has been a reliable companion. Adjustable and durable, this fits and hasn’t let me down. They come in many colors and patterns and are tote bag stuffable.

Flipsticks

With a Flipstick, I always have a seat with me. I put a padded bicycle seat on mine and cut a hole through it to provide access to the button that locks and unlocks the seat.

When I’m waiting in a chair in a doctor’s office, I lean forward and support my head on the Flipstick’s seat. My kyphosis pitches me forward. With the Flipstick, I can go with my tendency to lean and be supported. I use it in this mode more often than I use it as a seat.

This seat has saved me when caught in unexpectedly long queues without a rollator or wheelchair. It’s not exactly comfortable, but when my legs are ready to buckle, I’m glad I have it. When sitting on this, form a tripod with your legs and the stick.

There is a little slop in the seat mechanism and the collapsible sections. The Switch Stick has a tighter fit and doesn’t have a rattly flip seat. If you can’t stand any rattle or slop in your collapsible canes, the Flipstick might be a bad fit.

Rollators

My Drive Medical rollator has also been reliable. It assists me on longer bouts of walking and avoids the often fruitless search for seating. I sometimes wish I had a side-folding rollator for navigating narrow doorways, but those are more expensive, and the seat hinges down the middle, which bothers some.

Wheelchair Upgrades

Spinergy wheels, Surge handrims, Schwalbe Marathon Plus tires, and izzy wheel covers are popular upgrades many wheelchair users would love to have. Check with them first; wheelchairs are very personal.

Hydration

Water Bottles

Always be hydrating. We have several 27 ounce Klean Kanteens in the house. I always have one with me. Make sure you get the version 3.0 Sport Cap. These have a satisfying flow and chug. They’re dialed in just right for my preferences. Once again, check out Wirecutter’s review and survey of the field.

Travel Mugs

The Wirecutter recommended Zojirushi 16 ounce stainless steel travel mug is one of my favorite things. The opening action on the button and flip cap is reliable, stimmy goodness. The cap closes with a satisfying click. The flow is just right. The heat retention is superb. Bed-time tea is often still hot enough in the morning to enjoy.

The Toes Knows

Be kind to your feet.

Cozy Slippers

Cozy slippers make life better. The toes knows. (Dammit, Kevin Spacey, you’ve ruined this reference.)

I like to sit outside, even as the temperature drops. Baffin Base Camp booties are sleeping bags for my feet that keep my feet warm through a full winter season of porch sitting. They’re great in the house too.

I slip contractor boot covers over mine when I want to trudge around in them outside.

Custom Orthotics

Custom orthotics are one of the best investments I ever made. I’m a flat-footed over pronator who’s had a lifetime of grief with my feet, including having my feet forcibly shaped by hard plastic orthotics as a kid.

The orthotics of today aren’t those wretched things I had as a kid. For too long, that childhood experience prevented me from giving orthotics another go. I don’t walk more than 20 steps without the 3/4 length orthotics I have now. Without them, even a brief walk of just one minute induces foot pain.

My podiatrist used a plaster cast method, and I’ve been very happy with the results. A portable cast of your foot transforms every shoe.

If you want to change the life of someone with foot issues, spring $500 for custom orthotics.

Motion Control Shoes

My go to motion control shoe is the Brooks Beast. These are expensive shoes, so expensive that I wear them years longer than I should. Funding fresh motion control kicks for the over pronator in your life is a nice move.

Yankz and Lock Laces

Our dyspraxic family uses Lock Laces to avoid knot tying. Yankz is a similar brand. I’ve never owned Yankz, but I see both them and Lock Laces recommended in the #ActuallyAutistic community. The main difference seems to be the tensioning clip in the Yankz. I don’t need that part.

Accessible Shoes

There isn’t much selection in accessible shoes, making Nike’s Flyease all the more appreciated. Every shoe company should have an accessibility line. We buy Flyease.

Clothing

Clothing and texture preferences are very personal. Here’s what’s compatible with me and my sensory needs.

Zipper Hoodies with Pockets

I like soft cotton and micro fleece hoodies with zipper fronts, ample hoods, and plenty of pockets. I live in hoodies. I recede into their comforts. They provide sensory insulation.

My current hoodies are the SCOTTeVest Cotton Hoodie and Microfleece Hoodie. The SCOTTeVest hoodies cover my requirements:

  • Soft
  • Zipper front
  • Ample hood
  • Divided hand warmer pockets

And some of my nice to haves:

  • Top-drop pockets
  • Thumb holes in the cuffs
  • Too many pockets
  • Eye mask built into the hood
  • YKK zippers

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.

Thai Fisherman Pants

Inexpensive, comfortable, and capable of being both your fat pants and your skinny pants, Thai Fisherman Pants are what I wear pretty much all the time. I get mine from Amonchai.

Thai fisherman pants are secured with a knot. Knot tying isn’t accessible to everyone. I still have enough hand dexterity to tie bow knots, so I haven’t had to work around the knot requirements of fisherman pants.

BTW, if you tie shoelaces using the bunny ear method, you might be tying Granny Knots instead of more secure Reef Knots. I did this for a long time before habituating myself to switch my starting knot from left over right to right over left.

Of the three common knotting techniques, the Two Loop Shoelace Knot (or “Bunny Ears” method) is probably the one that is most often tied incorrectly. The technique consists of one knot tied with loose ends followed by a second knot tied with loops. People naturally tie both stages exactly the same way, resulting in a “Granny Knot”. This has given it a bad reputation as an inferior knot – whereas it’s actually quite secure if tied correctly.

…if you currently tie your starting knot: “Left end over Right end & through”, simply change it to: “Right end over Left end & through” – or vice versa.

Source: Ian’s Shoelace Site – The “Granny Knot”

Tracking and Finding

Tile Trackers

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 recently released a Pro Tile with a replaceable battery. Next time I have to replace one, I’ll try a Pro.

Eyeglass Chains

Tiles are too big to put on eyeglasses. Luckily, there’s a superior eyeglass locating technology: eyeglass chains. Put chains on your glasses and never wonder where they’re at again.

As I became more presbyopic, I found myself losing track of my glasses because I’d take them off to read and see up close. Putting my eyeglasses on a chain has saved me a lot of frustrated searching.

Etsy sellers have a wide selection of eyeglass chains.

Cutting and Opening

Utility Knives and Scissors

A good utility knife and a good pair of scissors assist package opening chores and household cutting. In our dyspraxic, repetitive-strain-wracked household, we cut instead of pull, rip, and tear. The Wirecutter recommendations for utility knife and kitchen scissors have served us well.

Schlepping

Utility/Grocery Carts

I picked the Wellmax WM99024S Grocery Utility Shopping Cart from the competition based on Amazon reviews. I haven’t had cause to regret the choice. When driving to out of town hospitals and staying in hotels, the cart handles schlepping our coping array to and from the car. At home, we use it for bringing in groceries from the car.

Save trips and save your back. Get some wheels.

Music and The Golden Age of Television

TV is a balm when in pain, out of spoons, and confined to bed. Get a video streaming subscription for your favorite #ChronicLoaf. Note that Hulu is negligent in providing audio descriptions, so pick another service for Blind and visually impaired folks.

Music helps manage sensory overwhelm and is an unguent for souls. Spotify and Apple Music subscriptions cover every mood.

Here, enjoy a minimalist chill. The repetitive structures of minimalist compositions are part of my sensory management.

The Future is Accessible, Accessibility Matters, and Ableism is Awful Apparel

Support disabled people, and spread the message of accessibility. Accessibility Matters and The Future is Accessible apparel are not always available (the campaigns run for limited time windows), but grab something for the spoonie in your life when they are. If the campaigns currently aren’t open, hit the “I Would Buy This!” button to signal interest in the next campaign.

Sex Toys

Masturbation reminds you that your body is about more than pain. Get some toys. The Magic Wand is a good general purpose massager and sensory stimulator. Again, I’ll rely on Wirecutter recommendations since they show their work and offer alternatives.

Medical Marijuana

A #ChronicHolidays guide doesn’t feel complete without some chronic. Medical marijuana is a life saver for many. It’s an ally to disability and neurodivergence. It eases chronic pain, aids sleep, reduces sensory overwhelm, and heads off overwhelm and PTSD-induced meltdown. I prefer vaporizing hash oil concentrates, especially at bed time, but combusting a joint while amidst nature appeals to a Promethean and free wildling part of my nature. Here are suggestions for grinders, rolling supplies, dry herb vaporizers, and concentrate vaporizers.

Dry Herb Grinder

I currently use a large Space Case Grinder Sifter. Larger diameter cases are easier on my hands and wrists. The threads on this case are fine and need to be kept clean. 99% isopropyl helps with that and all medical marijuana related cleaning needs. I’d prefer something with coarser, less-cloggable threads, but as long as I keep the threads clean I can get by. The Wirecutter has grinder recommendations, but I haven’t tried any of them.

Dry Herb Vaporizers

I’ve tried several dry herb vaporizers over the years. Most did not stay in my rotation long. The AirVape X bucks that trend. It has a minimal air path, which means less cleaning. The large rim funnels down into the oven, which means less spilling of precious medicine.

The AirVape X is the Wirecutter recommendation for dry herb vaporizer. Check out their review for details on why this vape is easier to use than others.

Rolling Papers and Tips

I use RAW organic hemp rolling papers and tips. I always roll with rolling tips (also called crutches or roaches). They make hand rolling easier and provide a more comfortable burn as you get to the end of your number. You won’t have incendiary hippie grenades hitting the back of your throat if you z-fold your rolling tip. If you don’t have any rolling supplies, kits that include a rolling tray, rolling machine, rolling paper, rolling tips, and a doob tube are convenient.

About Botanicals

Cannabis is a botanical. That’s means the possibility of allergies, especially when combusting dried flower. If you’re sensitive to botanicals, concentrates like butane hash oil (BHO) will better suit you. BHO uses butane as a solvent. Most of it is purged off, but if you’re sensitive to butane try a solvent-less concentrate like rosin.

Concentrate Vaporizers

I prefer inhaling my meds. Vapor is the most bio-available delivery method. Inhaled vapor gives instant relief and dosing feedback since it goes straight to the brain.

For concentrate vapes, I’ve had good luck with Linx products. I’m currently using the Linx Ares Honey Straw. It’s straw design means there are more surfaces in the air path, which means more cleaning. I clean it with an alcohol wipe every time I recharge and haven’t had any problems with it so far. When kept clean, straw and nectar collector designs provide the best flavor and cleanest hits. If you enjoy terpenes and revel in the taste of living green, try a straw design. With straws, you can dab straight from wax paper and silicone or glass containers. They’re not as discrete or handy for vaping on-the-go as pens though. The setup I like is a pen for continuous micro-dosing during the day and a straw or e-rig for heavier dosing at night.

I’ve used and enjoyed the Dr. Dabber Aurora. The magnetic sections are wrist friendly, but I found that the mouthpiece would come loose in my pocket. I fixed that with a piece of gaffer tape. Dr. Dabber has responsive customer service and stood by their product when I broke the ceramic pin on my Boost e-Rig.

Something to keep in mind with concentrate vaporizers is that you will have to regularly replace the atomizers (or heating tips for straw style devices). They get gunked up with resin over time and must be replaced. Factor the price of atomizers/tips and 99% isopropyl alcohol into the total ownership cost.

Here’s a survey of popular vape pens.

With all of these devices, you have to keep them clean, clean, clean. Always have 99% isopropyl handy. Amazon offers bottles by the case.

Silicone Water Pipes

I got tired of breaking glass water pipes and went silicone. I ended up with a Waxmaid. Other popular brands are Strong Silicone and Roll Uh.

Quartz Bangers

Turn that silicone water pipe into a dab rig with a quartz banger. I’ve used domed and domeless nails of all sorts. My preference is the quartz banger. They’re easy to use and provide a clean hit.

A water pipe with a quartz banger is an enjoyable way to apply a bed time dose.

A Good Torch

I’ve gone through a lot of torches. The only one to last more than 6 months is the Blazer Big Shot. Mine still strikes after almost 6 years of regular use.

CBD

There are a lot of hemp-derived CBD (cannabidiol) products on the market right now. They are currently legal in all 50 states in the US. There are a lot of rip offs out there, so watch out.

CBD is a cozy blanket of calm. I don’t find the hemp-derived CBD concentrates to be as effective as marijuana derived concentrates, but they still help.

In my experience, CBD works better in concert with THC. 1:1 CBD:THC products suit me nicely. If you don’t have access to medical marijuana derived CBD, the hemp stuff will certainly suffice. CBD can help reduce dependence on opioids. If you experience opioid constipation, CBD could be a life changer.

CBD concentrates comes in many forms. Crystals are flexible and multi-use. You can sprinkle them on food, swirl them in drinks, cook with them, and even dab them with dab rigs, vapes, and straws.

Dabber’s wax is the most convenient for dabbing.

Vape cartridge’s screw onto any vape pen with 510 threads. Cartridges are great for micro-dosing throughout the day.

I’m still auditioning hemp-derived CBD makers. Here in the Austin Texas area we have Ziggy’s Naturals.

Medical Marijuana Accessibility

It’s rare that I see reviews address the accessibility of devices. Every vaporizer I’ve used requires 5 quick button clicks to turn them on and off. This interaction is not so accessible. Grinders often have fine threads that are difficult to line up and clog quickly. Companies need to be more attentive to disability. I long for someone to take disability and accessibility seriously in their design, marketing, packaging, and customer support. Cannabis is medicine, after all.

Wanted: hospitals and doctors’ offices that…

Wanted: hospitals and doctors’ offices that…

Despite increased spending on mental health treatment, mental illness disability and suicide rates have skyrocketed. “Perhaps more disturbingly,” notes clinical psychologist Noël Hunter, “recent evidence has demonstrated that as contact with psychiatric intervention increases, so too does completed suicide, suggesting the possibility that the current mental health system may be creating the very problems it purports to aid.” In Hunter’s recently published Trauma and Madness in Mental Health Services (Palgrave Macmillan, 2018), she asks, “Are we continuing to funnel money into a fundamentally broken system?”

Far fewer on the Left recognize that the psychiatric- industrial complex (which includes the American Psychiatric Association and its Big Pharma financial partners) is also devoted only to its own preservation and expansion, thus routinely exacerbating emotional suffering-this despite many individual practitioners who want to help their patients.

Hunter is a rare psychologist. She not only has extensive knowledge of the empirical research, but she herself was once diagnosed with serious mental illness, and she takes very seriously the insights of “experts by experience”-recovered ex-patients-who Hunter quotes throughout her book. Both objective and subjective sources make clear to Hunter that the essential cause for what is called serious mental illness is not some kind of biochemical or genetic defect but some kind of trauma, and that the essential remedy is healing from trauma. For critical thinkers who are not mental health professionals, Hunter’s assertions in Trauma and Madness in Mental Health Services may sound like simple common sense, but it is sense that is not common in the mental health profession.

In a scientific sense, terms like “schizophrenia” are completely meaningless-wastebaskets to toss people who are behaving in ways that appear bizarre to doctors. Often what causes people acting in unusual ways to become chronically dysfunctional are their doctors’ problematic reactions and “treatments.” In other words, it is common for the source of chronic dysfunction to be physician-induced (iatrogenic) trauma.

In the real world of psychiatric diagnoses, probably the most important criteria for whether you are diagnosed with schizophrenia or dissociative identify disorder (DID) is how much your doctor likes you, and Hunter was likable enough to get a DID diagnosis. For reasons of dogma, not science, trauma is taken seriously for DID but not for schizophrenia (in which one is simply seen as defective). So, Hunter considers herself relatively lucky, and one senses her “survival guilt.”

Professionals often waste their limited time obsessing over a diagnostic process that is scientifically invalid and unreliable. “Rather,” Hunter concludes, “what is more important is to take an individualized, collaborative, trauma-informed approach that is attuned to individual needs without making assumptions and considering the person’s subjective experiences as real and something to be respected.” It’s important, Hunter concludes, to help people find meaning and value in the adaptive nature of their atypical experiences.

Source: Politics and Psychiatry—Brave New Book on the Cost of the Trauma Cover-Up

Carlin was a far better therapist for critical thinkers than are the vast majority of my mental health professional colleagues. Shaming hopelessness as some kind of character flaw or, worse, psychopathologizing it as a symptom of mental illness only adds insult to injury. Hope missionaries ignore the reality that pathologizing hopelessness does not make critical thinkers more hopeful, only more annoyed.

I know many mental health professionals who espouse hope but who are broken and compliant with any and all authorities. In contrast, I know anti-authoritarians who, like Carlin, express hopelessness but who are unbroken and resist illegitimate authorities. Carlin modeled a self-confident rebellion against authoritarianism and bullshit, and he provided the kind of humor that energizes resistance.

I don’t know the exact moment when I became hopeless about my mental health profession, but my experience has been that one can be embarrassed by one’s profession for only so long before that embarrassment turns into hopelessness.

The symptoms of ODD include often argues with adults and often refuses to comply with authorities’ requests or rules. At that time, I was in graduate school for clinical psychology and already somewhat embarrassed by the pseudoscientific disease inventions of my future profession; and throwing rebellious young people under the diagnostic bus with this new ODD label exacerbated my embarrassment.

My embarrassment transformed into hopelessness as it became routine to prescribe tranquilizing antipsychotic drugs to ODD kids; to diagnose kids with mental disorders merely for blowing off school while their entire family was falling apart; and to prescribe Ritalin, Vyvanse, Adderall, and other amphetamines to six-year-olds who had become inattentive as their parents were engaged in a nasty divorce.

Achieving hopelessness about my profession had great benefits. It liberated me from wasting my time with authoritarian mental health professionals in efforts at reform; and it energized me to care solely about anti-authoritarians who already had their doubts about my profession and sought validation from someone within it. Embracing my hopelessness about my profession made me whole and revitalized me.

Witnessing a mental health profession that is fast on its way to achieving complete ignorance about the nature of human beings would simply have validated Carlin’s general hopelessness.

Source: Hopeless But Not Broken: From George Carlin to Adderall Protest Music

Rather, the entirety of the mental health field and the paradigm under which it operates is a modern-day religion rife with all the familiar problems and benefits that exist in any religion. Most importantly, however, there is hope if people are willing to move beyond what society tells us we “must” do. People have been healing from great pain for 200,000 years—the mental health professions have existed for less than 200. While there are some things we have learned, we need to stop trying to re-invent the wheel. People need love, support, community, to be heard, to be valued, to be validated, to have purpose, to have health and housing, to have nutrition both physically and emotionally—it is not rocket science and doesn’t become such just because we keep saying that it is.

People who enter services are frequently society’s most vulnerable-people who have experienced extensive trauma, adversity, abuse, and oppression throughout their lives. At the same time, I struggle with the word “trauma” because it signifies some huge, overt event that needs to pass some arbitrary line of “bad enough” to count. I prefer the terms “stress” and “adversity.” In the book, I speak to the problem of language and how this insinuates differences that are not there, judgments, and assumptions that are untrue. Our brains and bodies don’t know the difference between “trauma” and “adversity”-a stressed fight/flight state is the same regardless of what words you use to describe the external environment. I’m tired of people saying “nothing bad ever happened to me” because they did not experience “trauma.” People suffer, and when they do, it’s for a reason.

If patients willingly adopt the role of defectiveness, then how is the doctor doing anything harmful or wrong? People who grew up as the scapegoat, who believe they are dirty or defective or bad, who are ashamed of their existence or believe they should be someone they are not, who have led their entire lives being marginalized and discriminated against in society-these are the people who most frequently enter mental health services. They are also those most readily vulnerable to accepting these messages under the guise of treatment and care. It is not until people are willing to start to consider that, in fact, they are not defective in the least, rather, that they are just flawed and unique human beings adapting to incredible pain that they can start to actually believe in themselves enough to heal.

Of course, there is simply the existential issue of mental health professionals that may be unbearable for them to face: If I am not fixing a distinct and identifiable problem, what, then, is my purpose? If the real healing power I have is something that any human being could ostensibly provide, if willing, why did I spend all those years in school and possibly hundreds of thousands of dollars? If these are not specific diseases related to specific biochemical or genetic flaws, why have I specialized-and who doesn’t like feeling special? And, worse, if I am not addressing people with genetic illnesses and biochemical problems, what, really, am I doing when all I have to offer are drugs and technological interventions?

This problem is not unique to mental health professionals. Medical doctors are caught in a similar dilemma when it comes to obesity, heart disease, diabetes, chronic inflammation, and many autoimmune diseases, even cancer. What do these doctors do when they realize that these problems are almost entirely due to an industrialized diet largely based on corporate interests-the sugar industry, soy bean manufacturers, Monsanto-and that if people just ate the way humans are designed to eat, these problems mostly would not exist? And, of course, these issues are entirely intertwined with mental health problems! If these are not specific diseases related to specific biochemical or genetic flaws, why have I specialized? If these problems are not really genetic illnesses and biochemically-based problems, what, really, am I doing when all I have to offer are drugs and technological interventions?

A black man spends his life being marginalized and aggressed, dismissed because of his fear and pain-should he enter the system, he is no longer “less-than” because of his blackness, now he’s marginalized and dismissed as “schizophrenic.” A sexually-abused young woman who was told she “wanted it,” was blamed, and was never given the opportunity to be angry enters the system-she now is “borderline” and once again blamed for being too sexualized, for causing staff to behave in shameful ways, and condemned for her anger, even when it is taken out on herself.

Perhaps more than any other, the most common enactment is that associated with the individual who grew up with a narcissistic parent in constant need of adulation, intolerant of discomfort or self-reflection, and who was a master in the art of gaslighting.

We live in a society that values stoicism, complete control over one’s behaviors, lack of emotional expression, “politeness” at the expense of authenticity-I love New York!-and an eerie Stepford Wife-like ideal of conformity. Mental health professionals often are selected for their ability to represent these values. Those troublemakers who tell the truth, are spontaneous(otherwise called “impulsive”), who laugh or find humor in the darkness(or “inappropriate affect”), who refuse to conform(or my favorite, “oppositional”) are ostracized and pathologized for the threat they pose to propriety. They generally don’t make it through the training process. I know I almost didn’t. It is the Anglo-Saxon way. It also is what makes most of us completely miserable.

Source: Psychiatric Retraumatization: A Conversation About Trauma and Madness in Mental Health Services – Mad In America

Anti-authoritarian patients should be especially concerned with psychiatrists and psychologists—even more so than with other doctors. While an authoritarian cardiothoracic surgeon may be an abusive jerk for a nursing staff, that surgeon can still effectively perform a necessary artery bypass for an anti-authoritarian patient. However, authoritarian psychiatrists and psychologists will always do damage to their anti-authoritarian patients.

Psychiatrists and psychologists are often unaware of the magnitude of their obedience, and so the anti-authoritarianism of their patients can create enormous anxiety and even shame for them with regard to their own excessive compliance. This anxiety and shame can fuel their psychopathologizing of any noncompliance that creates significant tension. Such tension includes an anti-authoritarian patient’s incensed reaction to illegitimate authority.

Anti-authoritarian helpers—far more commonly found in peer support—understand angry reactions to illegitimate authority, empathize with the pain fueling those reactions, and genuinely care about that pain. Having one’s behavior understood and pain cared about opens one up to dialogue as to how best to deal with one’s pain. Because anti-authoritarian mental health professionals are rare, angry anti-authoritarian patients will likely be “treated” by an authority who creates even more pain, which results in more self-destructiveness and violence.

It is certainly no accident that anti-authoritarian psychiatrists and psychologists are rare. Mainstream psychiatry and psychology meet the needs of the ruling power structure by pathologizing anger and depoliticizing malaise so as to maintain the status quo. In contrast, anti-authoritarians model and validate resisting illegitimate authority, and so anti-authoritarian professionals—be they teachers, clergy, psychiatrists, or psychologists—are not viewed kindly by the ruling power structure.

Source: “Don’t Be Stupid, Be a Smarty”: Why Anti-Authoritarian Doctors Are So Rare

We have a medical community that’s found a sickness for every single human difference. DSM keeps growing every single year with new ways to be defective, with new ways to be lessened.

The myth of normal is what’s broken, and the identity that, if you don’t fit it, that you are less than, that’s what’s broken. We need to reframe what we problematize, not bodies, not difference, but this pervasive imperative to be normal.

Disability industrial complex is all about what people can’t do. We spend most of our time trying to fix what they can’t do. When all we do is fix people the message we give to them is that they are broken.

We have created a system that has you submit yourself, or your child, to patient hood to access the right to learn differently. The right to learn differently should be a universal human right that’s not mediated by a diagnosis.

Source: The Gift: LD/ADHD Reframed – Ryan Boren

I do not use patient portals for messages. Getting providers to use email though is like pulling teeth. They’ve all been sold the line by medical records companies that portals are the only “secure” way to send messages. And while some portals may have encryption to help with privacy and security, some personal email accounts also have a feature to encrypt (the provider’s email should already be encrypted or they are running dangerously close to more HIPAA problems). You can read the letter I give my doctors on using email here.

Source: Common HIPAA Issues | Health as a Human Right

Both formal research, and autistic people’s own reports, clearly show that autistic health concerns-including mental health issues-are too often dismissed or misunderstood, and that autistic people are also more likely than the general population to have co-occurring health conditions.

It is only through participatory autism research that we have become aware of matters like the crisis-level rates of suicide and suicidal ideation in autistic people, while studies of commonly self-reported but poorly studied and understood co-occurring conditions like hypermobility or Ehlers-Danlos syndrome are only now emerging. If we are going to properly support autistic people of all abilities to achieve best possible health outcomes, our health care initiatives need autistic guidance.

I would like to see more of this autistic-informed policy integrated into autism education for medical professionals, for matters like accommodations during patient-professional interactions. We need more medical personnel to understand why autistic people-even those technically capable of holding a conversation-can have a debilitating fear of needles, may have difficulty with sensory-intensive procedures like MRIs or EEGs, may have trouble answering questions or self-reporting accurately due to processing, alexithymia, or interception issues, and may have meltdowns when overwhelmed. We must develop strategies for ensuring those autistic individuals are accommodated, so they can receive the care they deserve without being written off as “difficult.”

I would like to see more medical professional awareness about the sensory needs of autistic people both in general, and in medical environments. When my son was recently in the ER at Stanford University, he was given access to a lovely sensory “Imagination Station,” and in addition the flickering fluorescent lights in his room were turned off. Many autistic adults who heard about my son’s experience reported that they too would like access to these kinds of sensory accommodations, but such options, even when available, are usually reserved for children.

I would like to see more outreach to medical schools and other training programs about the need for more neurologists, behavioral psychiatrists, developmental pediatricians, and registered dietitians both in general, and who understand autism specifically. These scarcity of these specialists makes accessing health care even more difficult for autistic kids and adults.

I would like to see investment in “health passports,” like those developed by the UK’s National Autistic Society, to improve autistic people’s hospital and medical experiences. I would like to see encouragement to adopt and support models like the autism and healthcare toolkits and resources developed byAASPIREandUCSF’s Office of Developmental Primary Care, in delineating compassionate, respectful, and useful best practices for patients with developmental disabilities.

I would like to see all autistic people, including those with intellectual disabilities, treated with more respect by medical professionals. Autistic people must to be able to trust the professionals taking care of them if they are to tolerate anxiety-provoking medical environments-yet too often autistic people are not even addressed during in-person conversations about their own health, or they are spoken in a manner more appropriate for speaking to A Very Good Dog (as happened to my son while getting his flu shot just this week). In worst-case scenarios, dismissive attitudes can lead to tragedy, as with the recent death of 18-year-old Oliver McGowan. These attitudes must change, because my son’s life and those of his autistic community members are valuable, and should be treated that way.

Finally, I would like to see recognition that health care access gaps are even more pronounced for autistic kids and adults who aren’t male, autistic people of low socioeconomic status, and autistic people of color, due to well-documented barriers including accessing formal diagnosis, and thus receiving proper care and accommodations. We need investment in easy-read and multilingual autism and health care information. Ideally, we also need investment in “community ambassadors” who can translate and/or advocate for people who may have multiple barriers to resources, and thus to effective self- or family advocacy.

Source: SQUIDALICIOUS: My Comments to the September 2018 IACC on Autism and Health Care Issues

When AMASE conducted a survey about the mental health of autistic people around Scotland, we found that many had been excluded by such simple things as practices insisting on telephone contact

Source: Fergus Murray: Why ‘nothing about us without us’ should be an Autism policy principle | CommonSpace

This is the story about a doctor and nurse I once had and how they “got it.”

“Getting it” isn’t necessarily something that you can define. It’s ineffable. It’s more of a feeling than a specific action. For me, it’s a connection that runs deeper than the diagnosis, the medical terminology, the treatments proposed. It’s a sense of being listened to and really heard. It’s feeling of being truly cared for. It’s a sense of empathy or at least a willingness to immerse oneself in my world as a patient, to feel and see what I face. When I think of my doctor and nurse who “got it”, I remember the sense of safety and calm they offered me and knowing that I would be okay. To each patient surely it may mean something different. But for me “getting it” gives me the ability as a patient to breathe, and perchance even to live.

Source: The Doctor and Nurse Who “Got It” | Health as a Human Right

Access intimacy is that elusive, hard to describe feeling when someone else “gets” your access needs. The kind of eerie comfort that your disabled self feels with someone on a purely access level. Sometimes it can happen with complete strangers, disabled or not, or sometimes it can be built over years. It could also be the way your body relaxes and opens up with someone when all your access needs are being met. It is not dependent on someone having a political understanding of disability, ableism or access. Some of the people I have experienced the deepest access intimacy with (especially able bodied people) have had no education or exposure to a political understanding of disability.

Access intimacy is also the intimacy I feel with many other disabled and sick people who have an automatic understanding of access needs out of our shared similar lived experience of the many different ways ableism manifests in our lives. Together, we share a kind of access intimacy that is ground-level, with no need for explanations. Instantly, we can hold the weight, emotion, logistics, isolation, trauma, fear, anxiety and pain of access. I don’t have to justify and we are able to start from a place of steel vulnerability. It doesn’t mean that our access looks the same, or that we even know what each other’s access needs are. It has taken the form of long talks into the night upon our first meeting; knowing glances shared across a room or in a group of able bodied people; or the feeling of instant familiarity to be able to ask for help or support.

Source: Access Intimacy: The Missing Link | Leaving Evidence

 

Neurodiversity in the Classroom

The picture shows a school classroom as I see it, as an autistic person.  A kaleidoscope of shape and blinding lighting, with vague outlines which are probably other students.  Deafening noise.  The stench of different smells.  The confusion of many voices, including some heard through walls from neighbouring halls and classes.  School uniform that feels like barbed wire on my skin.

In the chaos, a different voice which I have to try to listen to.  It’s so hard.  My brain doesn’t want to tune the rest of the noise out.  Apparently I’ve been asked something, but I miss it.  The voice gets more strident, the class turns to look at me.  The intense stares overwhelm me.  The person next to me jostles me and it feels like an electric shock on my skin.  Only six more hours of hell to go…. only six….

Some of our autistic pupils simply cannot do this alone, without ‘time out’ to recover from the pain and exhaustion during the school day.  Not for hour after hour of puzzling painful chaos.

Source: Ann’s Autism Blog: Autism, School, Exclusion. What’s fair?

CW: behaviorism, ABA, PB[I]S, ableism, mental health, suicide

Walk into many SpEd classrooms, and you’ll see little awareness of neurodiversity and the social model of disability. Students with conflicting sensory needs and accommodations are squished together with no access to cave, campfire, or watering hole zones. This sensory environment feeds the overwhelm -> meltdown -> burnout cycle. Feedback loops cascade. Mind blind neurotypical adults call across the room, feeding the overwhelm. They ratchet compliance, feeding the overwhelm. They treat meltdowns as attention-seeking “fits”, feeding the overwhelm. They not only fail to presume competence, they speak about kids as if they aren’t even there, feeding the overwhelm. The familiar yet wrong things are done.

We’ve turned classrooms into a hell for autism. Fluorescent lighting. Endless noise. Everywhere, bright patterns and overloading information. Groupwork and social time. Crowded hallways and relentless academic pressure. Autistic children mostly could cope in the quieter schools of decades ago. Not a hope now.

We cannot simply exclude autistic pupils for entering meltdowns. Meltdowns are part of autism for a good number of autistic young people.

Whilst mindful that of course everyone needs to be safe, the way to achieve safety is to stop hurting the autistic children. Punishing them for responding to pain is not something any of us need to do.

What schools need to do is to understand autism. In understanding it, we can help to stop putting the children in pain and exhaustion. It’s actually quite easy. And quite cheap.

Source: Ann’s Autism Blog: Autism, School, Exclusion. What’s fair?

The most important thing to understand about autism in shared space is sensory overwhelm. Education, in my experience as student and parent, doesn’t, not in any practical, first-person way. ABA and behaviorism pointedly don’t understand.

Plenty of policies and programs limit our ability to do right by children. But perhaps the most restrictive virtual straitjacket that educators face is behaviorism – a psychological theory that would have us focus exclusively on what can be seen and measured, that ignores or dismisses inner experience and reduces wholes to parts. It also suggests that everything people do can be explained as a quest for reinforcement – and, by implication, that we can control others by rewarding them selectively.

Allow me, then, to propose this rule of thumb: The value of any book, article, or presentation intended for teachers (or parents) is inversely related to the number of times the word “behavior” appears in it. The more our attention is fixed on the surface, the more we slight students’ underlying motives, values, and needs.

It’s been decades since academic psychology took seriously the orthodox behaviorism of John B. Watson and B.F. Skinner, which by now has shrunk to a cult-like clan of “behavior analysts.” But, alas, its reductionist influence lives on – in classroom (and schoolwide) management programs like PBIS and Class Dojo, in scripted curricula and the reduction of children’s learning to “data,” in grades and rubrics, in “competency”- and “proficiency”-based approaches to instruction, in standardized assessments, in reading incentives and merit pay for teachers.

It’s time we outgrew this limited and limiting psychological theory. That means attending less to students’ behaviors and more to the students themselves.

Source: It’s Not About Behavior – Alfie Kohn

We navigate systems stacked against us to get access to what amounts to dog training—that dog trainers know better than to use—and a segregated “special” track through our systems that pathologically pathologizes difference and fails to connect with the communities it helps marginalize.

The specialists that serve this “special” track aren’t so much specialized in the lives and needs of neurodivergent and disabled people (managing sensory overwhelm, avoiding meltdown and burnout, dealing with ableism, connecting with online communities, developing agency and voice through self-advocacy) as they are specialized in deficit and medical models that pathologize difference and identity. Such framing is too limited to see us.

So heartbreakingly many can’t even bring themselves to use our language or educate parents about our existence. After autistic students age out of our care, we erase them again as adults.

More children than ever before are being diagnosed with autism. But what about the adults? Some of these individuals have never been diagnosed but have always known they were a bit “different.” Others were diagnosed but did not have the same degree of societal acceptance or the same number of resources available to help them cope with a neurotypical world.

Now this group of adults is the demographic that best understands what people with autism need, whether or not they know how to articulate it in a way the rest of society is able to grasp. But what these men and women have to say about autism is important. These people need to be heard!

The video below encourages adults with autism to get involved in the discussion and asks others to be cognizant of the needs of people with autism and invite them into the conversation. The neurotypical community needs adults with autism to lend their voices and experiences to help make the future brighter for the next generation!

Check out this powerful video!

Source: This Video Demonstrates What It’s Like to Be an Autistic Adult Who Isn’t Being Heard | The Autism Site Blog

Being an autistic parent of an autistic child means navigating a world that doesn’t see us as whole while advocating for two people at the same time. Specialists don’t take autistic parents seriously, don’t trust that we know our own needs, let alone a child’s. How can we when we’re in need of special services and accommodations, too?

Source: Catapult | Catapult | The Greatest Challenge of Raising an Autistic Child as an Autistic Parent? The Ableist World We Live In | Lu Everman

After sensory overwhelm, the next most important thing to understand about autism in the classroom is autistic burnout. Autistic burnout is unknown in the deficit and medical models. To hear about it, you have to go to #ActuallyAutistic people. We live this.

If you saw someone going through Autistic Burnout would you be able to recognise it? Would you even know what it means? Would you know what it meant for yourself if you are an Autistic person? The sad truth is that so many Autistic people, children and adults, go through this with zero comprehension of what is happening to them and with zero support from their friends and families.

If you’re a parent reading this, I can confidently say that I bet that no Professional, from diagnosis, through any support services you’re lucky enough to have been given, will have mentioned Autistic Burnout or explained what it is. If you’re an Autistic person, nobody will have told you about it either, unless you’ve engaged with the Autistic community.

Autistic Burnout is an integral part of the life of an Autistic person that affects us pretty much from the moment we’re born to the day we die, yet nobody, apart from Autistic people really seem to know about it…

Source: An Autistic Burnout – The Autistic Advocate

Do as these researchers are finally doing. They are in the space connecting with autistic people. They are using and spreading our language. They are building, with us,  a community of practice around participatory research that reflects our priorities. We see them and welcome others, particularly K-12.

Scientists are increasingly recognizing a moral imperative to collaborate with the communities they study, and the practical benefits that result. Autism researchers are joining this movement, partnering with people on the spectrum and their families to better address their priorities.

Source: Autism research needs a dose of social science | Spectrum | Autism Research News

Events like The International Society for Autism Research (INSAR) annual meeting are waking to the harm that has been done. They are finally including autistic people and autistic perspective.

So many of us in this system want to do better. Students and teachers find themselves in spaces guaranteed to result in feedback loops and meltdowns and the eventual burnout of everyone involved.  Responding to fires and stresses caused by overloaded sensory spaces and deficit ideology consumes more time, people, and passion than available and starves a better future of oxygen.

A better future requires time and will to get structural, get socialget equity literate, connect with communities, and build classroom user experiences compatible with neurodiversity and disability. SpEd and self-advocates should be working together,  designing for real life and fixing injustice, not kids.

A better future requires a justice mindset.

A better future requires an acceptance mindset.

A better future is a future made togetherRespecting neurodiversity improves interactions between neurodivergent people and public services. To that end, here are some autistic perspectives on sensory overwhelm, meltdowns, burnout, compliance, behaviorism, and “special needs“.

Sensory overwhelm is a marquee feature of my life. Autistic perception can be a high fidelity flood in an intense world. “Autistic perception is the direct perception of the forming of experience. This has effects: activities which require parsing (crossing the street, finding the path in the forest) can be much more difficult. But there is no question that autistic perception experiences richness in a way the more neurotypically inclined perception rarely does.

Prolonged sensory overwhelm can lead to meltdown. A meltdown is not a tantrum. It is not attention-seeking. It is a response to overwhelm, anxiety, and stress. If I meltdown, the best thing you can do is be present, patient, calm, quiet, and compassionate. Meltdowns are tidal waves of sensory overwhelm. Try not to add to the overwhelm. “But I’m tortured because whilst I don’t want to make a scene or have strangers adding to the overload and overwhelm, I’m simultaneously desperate for someone to give me a massive, firm, bear-hug. To hide me, cocoon me, and shield me from the shock waves that travel from their universe into mine.

Overwhelm, meltdowns, and the stress of trying to fit into neurotypical society lead to autistic burnout. “Burnout can happen to anyone at any age, because of the expectation to look neurotypical, to not stim, to be as non-autistic as possible. Being something that neurologically you are not is exhausting.

Noncompliance is a social skill“. “Prioritize teaching noncompliance and autonomy to your kids. Prioritize agency.” “Many behavior therapies are compliance-based. Compliance is not a survival skill. It makes us vulnerable.” “It’s of crucial importance that behavior based compliance training not be central to the way we parent, teach, or offer therapy to autistic children. Because of the way it leaves them vulnerable to harm, not only as children, but for the rest of their lives.” Disabled kids “are driven to comply, and comply, and comply. It strips them of agency. It puts them at risk for abuse.” “The most important thing a developmentally disabled child needs to learn is how to say “no.” If they only learn one thing, let it be that.” “Our non-compliance is not intended to be rebellious. We simply do not comply with things that harm us. But since a great number of things that harm us are not harmful to most neurotypicals, we are viewed as untamed and in need of straightening up.”  ‘What I am against are therapies to make us stop flapping our hands or spinning in circles. I am against forbidding children to use sign language or AAC devices to communicate when speech is difficult. I am against any therapy designed to make us look “normal” or “indistinguishable from our peers.” My peers are Autistic and I am just fine with looking and sounding like them.‘ “When an autistic teen without a standard means of expressive communication suddenly sits down and refuses to do something he’s done day after day, this is self-advocacy … When an autistic person who has been told both overtly and otherwise that she has no future and no personhood reacts by attempting in any way possible to attack the place in which she’s been imprisoned and the people who keep her there, this is self-advocacy … When people generally said to be incapable of communication find ways of making clear what they do and don’t want through means other than words, this is self-advocacy.” “We don’t believe that conventional communication should be the prerequisite for your loved one having their communication honored.

Source: I’m Autistic. Here’s what I’d like you to know.

The logic of the connection between “special needs” and “special [segregated] places” is very strong – it doesn’t need reinforcement – it needs to be broken.

Further, the “special needs” label sets up the medical “care” model to disability rather than the social inclusion model of disability. It narrows and medicalises society’s response to the person by suggesting that the focus should be on “treating” their “special needs”, rather than on the person’s environment responding to and accommodating the person – including them for the individual that they are.

There is another insidious but serious consequence of being labelled (as having or being) “special needs”. The label carries with it the implication that a person with “special needs” can only have their needs met by “special” help or “specially-trained” people – by “specialists”. That implication is particularly powerful and damaging in our mainstream schooling systems – it is a barrier to mainstream schools, administrators and teachers feeling responsible, empowered or skilled to embrace and practice inclusive education in regular classrooms, and accordingly perpetuates attitudinal resistance to realising the human right to inclusive education under Article 24 of the Convention on the Rights of Persons with Disabilities.

In other words, the language of “special needs” leads to, and serves to excuse, a “can’t do” attitude as the default position of many general educators – it effectively deprives inclusive education of its necessary oxygen – a conducive “can do” classroom culture.

The label of “special needs” is inconsistent with recognition of disability as part of human diversity.  In that social framework, none of us are “special” as we are all equal siblings in the diverse family of humanity.

Source: “He ain’t special, he’s my brother” – Time to ditch the phrase “special needs” – Starting With Julius

An education that is designed to the edges and takes into account the jagged learning profile of all students can help unlock the potential in every child.

Source: From Hostility to Community – Teachers Going Gradeless

We have autistic children who need us to support them as architects of their own liberation against the schools and clinicians and institutions and police and prosecutors who would crush and destroy them.

Source: Autistic Hoya: The neurodiversity movements needs its shoes off, and fists up.

Further reading,