On the Vestibular System

A winding path to diagnoses made me dizzy

Thus far, I’ve talked mostly from personal, emotional vantage points. Part of starting this writing isn’t because my decades of clogged emotion finally has a release valve, it’s also to inform and bring awareness to what Autism diagnoses consist of.

In the 90s, there were few afab (assigned female at birth) people who were diagnosed.I have limited information on how they were identified as its difficult to find studies or personal accounts and each story is different.

My Psychologist who specializes in ASD has said multiple times that had I been born recently, I would have been clocked. I think this speaks to both expansion of clinical awareness as well as how pronounced my Autistic “traits” were as a child and obviously remain as an adult.

On the outside I wasn’t suffering enough in school despite my early suicidal ideation. Colloquially labelled as “gifted” while needing IEP’s, you could not detach me from my fevered interests which was viewed as creativity despite its clear, obsessive nature.

I’ve heard “you are unique” all my life. It makes me wretch because I don’t know what I’m doing to make people think that and it negates the intense struggles I have faced to function. I’m sick and tired of hearing it because it’s not relevant or helpful as my personality means nothing when I can’t hold jobs and face eviction notices.

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While it is not compulsory to meet all sensory criteria in the DSM-5 (TR) for an ASD diagnosis, the following hypo or hyper sensitivities are are found within the Autistic population to varying degrees:

Sight, Smell, Taste, Touch, Proprioception, Vestibular, Interoception

Today I’m going over my

VESTIBULAR ISSUES

This is just me. I don’t speak for anyone in the Autism community but myself. These are facts and reflections on how known co-occurring attributes show up in me, past and present.

Intolerance to tire swings

I never understood why I’d get violently sick in minimal spins on everyones favourite park toy. I would become so unbalanced in seconds from any circular movement it astounding. This nausea wave was unrelenting and everlasting. If I was not fast enough to eject myself from the tire, I would throw up. Throwing up was a constant in my life actually. Many times it was anxiety produced, however looking back with knowledge of my Vestibular system, I’m aware this upset was not always figuratively “in my head”.

Swim Spinning

So, this is bizarre. I cannot stand being spun above ground. But somehow I discovered how to spin in water. I made up this technique at a family members house, staying in the water hours on hours, worrying my mom that I was in the water “too long” for normal. Usually people go in, go out, saunter, have a break. But you couldn’t tear me away and when you did-I would be very upset. I never wanted to leave, the drastic transition from water to air was the worst. The bliss of being enveloped by cool liquid, muffled sounds as you remain suspended among the dreamy sights through your goggles. Another key: spinning in water never made me dizzy and that is what I loved about it. So, I loved to spin but my system could not handle it.

Severe motion sickness

While I can avoid tire swings, this is something I still deal with. It’s a contributing factor to my avoidance of public transit as well as the anticipatory stress I have when riding is non negotiable. My motion sickness was so strong that my parents had to stop going on vacations due to it’s severity. It was significant enough to them it made it into my Autism report, and it was because of this I typed in “car sickness and autism” which wove its way into me realizing Holy Fuck, this is Vestibular.

If you want to know why learning you are Autistic later in life is overwhelming, this car sickness is a good example. I have little memory of its scope-it’s blocked. And it wasn’t here or there-my nausea in vehicles was (and still is) ALL the time.

Reading my report broke up the mesh suffocating my recollection. Waves of raw, unfelt emotion come on me for how terrible it must have been to have your kid constantly ill, but also the lengths of support I had without knowing it. How my family sacrificed much for my accommodations. To this day the passenger seat is given to me, even on a quick trip to the store.

Travelling nausea is something I’d never wish on anyone. Cars, Busses, Boats (Planes and Trains are different stories), I feel ill just at the mention of them. I vividly recall a time in dead winter, the bus I was on kept lurching forward and stopping, forward and stopping. I do everything I can to prevent my body from reacting. I shut my eyes, ball my fists and rock, trying to breath in a regulating manner, but I couldn’t stop it.

IM GOING TO BE SICK, I yelled.

Barely crossing the door threshold before barfing, I was forced to walk the 40 or so minutes back home in a blizzard. At least the winter air cooled my face.

Over responsiveness to rides.

Me and rides were never a good fit. It wasn’t fear-it was the fast, jerking motions of the track, the velocity of impact on my eyeballs and body. The movements felt out of control, jostling my system which sends me into legitimate panic. I couldn’t understand this very deep reticence to go on rides like my friends enjoyed. My body knew this wasn’t good for me. I’m not the only person who barfs-they have throw up nets for a reason-but the level of destabilization I experience is not a quick bounce back. It could potentially disassemble my balance, leaving me nauseous for the remainder of the day. When you’re halfway through an afternoon in the middle of a crowded amusement park on a sticky summer day, shit goes sideway fast. Nausea comes on like lightening, but takes it sweet time to leave.

The only ride I can do is the Scrambler. Because it goes side to side, not forward-back or spinning. I really loved the Gravitron for the heavy pressure it provides. Im actually smiling remember the times at my small town fairs when every kid and teen in the ride connected for those few minutes as our bodies were punched into the wall by centripetal force.

Vestibular Migraines

I do not have regular migraines, but when I do get an attack it’s bad. My migraines are contingent on unbelievable stress, wether emotional or physical. I got one after a fight with a friend, also after a tough Jiu Jitsu class. To be fair, I had warning signs before both-neck stiffness, nausea-before my Auras start “out of the blue”.

My Auras are fast and furious and absolutely terrifying. Now that I have experienced them enough, I don’t panic like I used to and after seeing an eye doctor for the first time since I was 10, I got a script for glasses which I got with a rose tint, to help with my light sensitivity.

Video Games

I can play “flat” games. Sonic, Mario, Tetris. Even on Switch I can do Kirby and definitely my favourite Zelda. But one of my pals who lent me their switch in the first place, told me to try out The Witcher. Within minutes, my eyes were feeling funny. Ok, too much screen time doing this anyway. So I came back to it and when I was finally in the game, I said out loud : “Oh my God, NOPE!”

Watching the characters lurch forward, whatever kind of swaying movement they have, or maybe how the in-camera moves. It’s like, too smooth or something. I gave it multiple shots and ultimately realized the game was making me queasy. It was exactly like riding in a car. I thought, this is ridiculous and I’m not able to play this.

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When I first met with my Psych I had none of this vestibular reflection. It was very much social/occupation based with repetitive behaviours and the severe decline in my mental health. If my dx was an earthquake, the post-dx investigations are the shock waves detailing the already painted picture.

Relation to any of these experiences does not mean you are Autistic. I will be expanding on my issues regarding my gait and body in relation to the Vestibular in a future post.