...and other thoughts about sensory issues
And then, every once in a while I'm in a room with one other autistic person and twenty or so garden varieties (or whatever you want to call 'normal' people). Inevitably, the autism spectrumy person says something that makes the other twenty people cock their heads like they didn't hear it right, but I laugh, almost too loudly, because I totally get it.
Technically, my paperwork says Autism Spectrum Disorder, not Asperger's, so I should just calm down. And even if I somehow were to get re-evaluated and I were determined to exist on the wrong side of the DSM V autism line, I'm still all in with the neurodiversity camp. Neurodiversity is a club that includes everybody.
So, to try and reel this in to what my title is about, the new DSM autism guidelines specifically include sensory issues. From my understanding, this is new. Sensory processing issues used to be considered common co-morbidities for autism, but now they're part of the diagnostic checklist. Brilliant!
However, "hyper- or hypo-reactivity to sensory input" is a pretty broad way to put it. And how do you test for it? Some expressions of hypo-reactivity are more obvious, like the kid who doesn't notice that he's cut himself until someone points out his shirt is soaked in blood. Or the little girl who screams and arches into bridge because the car seat is way too hot. Others, however, really aren't.
Because autism can limit your perspective to your own experiences, it's hard to know how your perceptions may not match up with those of others. Someone with milder visual or auditory processing issues might not even realize that they're having an issues until well into adulthood, when they have accreted enough information to realize something funny is going on. At the age of 38, I've finally connected enough dots to realize that I've got a bunch of quirks in my perception that most likely add up to general sensory processing issues.
I'll list a few. I would also like to point out that these issues tend to manifest themselves more profoundly when there is extra stress going on in my life.
First, when I was in 7th Grade, I noticed the ringing in my ears, or tinnitus. I hadn't been listening to loud music. In fact, I never really liked loud music. Earlier on, I'd insisted that I not participate in a recorder lesson in Sunday school, because the tones of the recorders hurt my ears. After noticing the tinnitus, it was also hard to put up with the high-pitched squeal that the CRTs in the TVs and computer monitors of the day would make. But I loved TV, so I forced myself to acclimate to it.
As I grew older, the tinnitus made it absolutely pointless to go to any place an amplified live band was playing. All the music turned to static in my head and I feared my eardrums would explode.
When I was 20, and going through a lot of confusing health problems, I brought up the tinnitus with my doctor. She said there wasn't anything to do about it and implied it was the consequence of rocking out too hard. She obviously had no idea what my situation was. I never brought up tinnitus with a doctor ever again.
Later on, when I was making one of my big pushes at trying to be more social, I discovered a couple drinks would kick the tinnitus in the background, and I could actually hang out in a club with loud music for a while.
I have similar visual issues. It's hard to talk about, mostly because people get confused and worried when I do. I'll ease into it.
Sometimes, when I'm in a new place or situation, it's like I take a thousand polaroids and then throw them all over the floor at random and, until I can assemble it into some kind of a photomosaic, I really have no idea where I am and what I should be doing in the place. It takes a while to put the puzzle pieces together and figure out what's going on. I wonder what this looks like from the outside. I must project some sort of vibe that makes it seem like I'm on official business. I've often totally blown by the guy collecting the cover charge without consequence simply because I didn't realize he was there.
I'm not exactly sure if the polaroid photomosaic counts as a sensory issue, or a processing issue, but related to it is the fact that, sometimes, when a lot of things are going on in a situation that I'm supposed to be involved in, everything goes white. It's not that I can't see, but my ability to make sense of it goes away. There is no distinction between people, environment, and the damned basketball that I'm supposed to be passing to somebody. In my head it can all register as a timeless flash of white. This is a big part of why I don't like to drive so much, and especially not at rush hour. I had one of those timeless flashes of white back in February. It ended up with me being in an upside-down car.
Another visual issue that I've been recognizing more and more, but has been with me for quite a while, is visual snow. At some point, when I was a teenager, I noticed that my vision would be kind of fuzzy sometimes. I did get glasses, and that corrected very mild myopia (so mild that I've always passed the DMV vision test without my glasses), but things still seemed a bit ghostly out of my left eye in particular. I was interested in the supernatural at the time, and I started really trying to see auras. And I definitely started seeing auras around anything that was against a dark background. I saw halos around lights. I'd see things flickering in the corners of my field of vision. I would also see little sparks flitting from the corners of grid like patterns, especially 1 inch square bathroom tiles. At the time, I thought I was learning how to see magic.
That experience kind of faded into the background as I became very worried about what life was going to be like after high school. Visual issues would continue to show up in little ways, usually when I was exhausted or over-extending myself. Resting, reprioritizing my projects, and avoiding bright lights has usually done the trick. It has been worse at times when major changes have been going on in my life. I've seen ophthalmologists a couple times about this, only to be told there was nothing physically wrong with my eyes. Perhaps I just didn't have the right vocabulary to explain what is going on. But knowing nothing physically was wrong was a relief itself and helped alleviate the symptoms.
When HDTVs started becoming the norm, I had a bit of a reaction. At first it was really hard for me to look at an HDTV with my glasses on. Things were too sharp and too not the way I'm used to seeing them. I gradually adjusted, but ever since then I notice how, to me, real life often looks more like it's shot on lower grade film stock from the 80s than the glorious HiDef presentation of the opening ceremonies to the 2008 Beijing Summer Olympics.
This past summer, as I was in the midst of every major life change you could think of, it got really bad. I started googling my symptoms and found out that 'visual snow' was consistent with what I was experiencing. I also found out that three groups seemed to represent a lot of the sufferers of visual snow: people with Asperger's, and people who have done way too many hallucinogenic drugs. Although people have often asked if I have, I've never done any hallucinogens, mostly because I've always suspected my brain was weird enough as is.
The sensation of pain is always a bit off for me. When I was married, occasionally my partner would notice nicks on my hands and ask me how I'd cut myself. I'd have no idea.
I've also had chronic muscle and joint pains that have lasted for years. For quite a long time, I was unable to turn my head very far to the left. Doctors would prescribe anti-inflammatory drugs and I'd try special pillows and ginger pills and a host of home remedies. Then, after five years of avoiding dentist visits, my new dentist thought it was time to have an impacted wisdom tooth pulled. Like magic, after the extraction, my neck pain disappeared. Perhaps the tooth was causing pain in my jaw the whole time, but it wasn't registering right, and instead my neck was seizing up. I'm not sure. All I know is that I take dental hygiene seriously now.
In another dental situation last year, it turned out I had an abscessed tooth. Again, I didn't feel any pain in the tooth, but I had been feeling very run down and a little woozy for a month or so leading up to the regular visit where an x-ray revealed the infection. It was curious that I had a raging infection inside my head and never felt any pain. I'll have to keep an eye out for that.
In general, I've also found that I have an odd relationship with NSAID pain relievers. They do the job really well, but when the medication wears off, the pain comes back worse than when it started and I need to take more meds. For the most part I've stopped taking meds for my muscle and joint aches since I realized this was a cycle. My muscle and joint pain has significantly decreased.
Nothing is consistent
I've noticed other sensory quirks, but the one thing I've noticed above all else is that none of them are 100% consistent. It seems like multiple variables are at play when it comes to sensory issues. Familiar environments and a general sense of well-being with my place in the world makes a lot of the symptoms disappear. Fear, anxiety, unknown situations, being out of my routine, changes in the season, worrying about getting a job can all build up and tip it the other way.
In the end, I think the best way to manage sensory issues is to know yourself, know what you tend to react to, and know what you can do to regulate your internal situation so you can better process the external situation. Take breaks when you need them. Eat good food. Get exercise. Those are the big three that seem to help everything.