#1 #ActuallyAutistic: How My Autism Affects Me

My life as "Princess and the Pea". I live in a world which relentlessly bombards me with noises, smells, visual information and changing instructions.

#1 #ActuallyAutistic: How My Autism Affects Me

How does Autism Spectrum Disorder affect me?

I live in a world which relentlessly bombards me with noises, smells, visual information and changing instructions. I live amongst other walking, talking mouth-breathers that I have never understood. So without a brain designed to deal with this frenzy of information separately it causes me considerable stress, physical pain and often debilitating and embarrassing anxiety.

I cannot filter anything out. At all. So whilst awake I feel like I am being assaulted by information. The busier and brighter the environment, the more exhausting a day is.

I am recently diagnosed and prior to this absolute revelation I just thought I was different. Quirky? Wrong? Faulty? Mentally ill? Too Honest? Too logical? Not quite fitting in to the female peg hole all others seemed to go about fitting into quite effortlessly without a second thought about the fact they were fitting in.

What is fitting in? Only you can say. I can’t. Because every time someone does something spiteful to someone – like gossiping and it isn’t true. Gossiping in general, trying to demean others, that thing people do and feel a connection through subversiveness?

Yeah. I don’t get that. I hate it.

It makes me feel angry when other people say words and only mean them to gain a side. I mean everything I say, but I get misinterpreted because the norm IS to say things to fit in.

You all fit in because you don’t think about your daily ‘doings’. I consider everything. To list my brain thoughts before the simple task of making a coffee after opening my eyes in the morning, would be about 100 steps.


It must be right.

I can’t think of a better mirror than Chester Bennington. He felt what he wrote. He laid himself bare. The industry took it and the consumers sidelined the content. Consumers lapped it up and zoned out/chose to ignore the possibility he might have and did, feel his words.

People take it as ‘just a song’.

People take me as ‘Just her quirks”

People take their friends lyrics as “Just lyrics”

Chester killed himself. Devastating outcome. Yet nobody saw it coming? His words were how he felt. It was right there for all to see.

I think I see everything. I think I do. I try to. I need to be unbiased. Hypocrisies really irritate me. I am constantly and consciously analysing everything, even my own thoughts. I really don’t want anyone to hurt if I can help them. I have a need to feel useful.

Prior to diagnosis I had put these down to having ‘manic’ phases as I was told I was Bipolar. The constant stream of my brain saying “additional thing to take notice of!”: “car sound” “Motorbike sound. Harley?” “butterfly!” “sun’s got brighter” “Tinnitus” “distant cow moo” “heating coming on” “itchy arm” “dust flecks in the air” “she’s on the phone next door” “oooh I can smell coffee” etc all stack up on top of each other like pancakes in my current thought process and it’s exhausting.

When I read up about Bipolar I realised I had answered the question “Do you have racing thoughts?” with a very honest “Yes. Constantly”.

But now I look at it, and realise yes, I have constant thoughts. But had they drilled deeper, they aren’t the same description as ‘racing’ in the context of Bipolar. It also didn’t explain the “Explosive Personality Disorder” I gained aged 13, or the “Alcohol dependent” tag age 15, or the “Depression” aged 11, or the “Anxiety disorder” aged 16.

Bipolar didn’t explain me at all or anything I felt. I certainly never had delusions. I run on logic.

My ‘thoughts’ as they put it are me internally organising my day, my week, my next ten minutes, my actions, my breathing spaced out, what I am going to do, what I am doing next, what I am doing now, how the sofa feels under me, fight or flight for the possible doorbell/phone/mobile/door knock, what I am feeling, if I feel warm or cold to the touch, what I can smell.

Basically my reaction to my sensory sensations from all angles.

Art: Rosanna Rosetti

Art: Rosanna Rosetti

That said, I have been known to have flight of ideas, although that is always during drinking a lot of alcohol. So perhaps I have co-morbid Bipolar? Perhaps the chemicals or sugar in alcohol get me too excitable? Perhaps it’s a combination of over anxiety mixed with over stimulating situations and masses of sugar? I don’t get the flight of ideas if I don’t drink alcohol. But I’m yet to pose this to the autism clinicians. Because I keep forgetting.

Bipolar on its own though? Absolutely not. But if you combine the separate diagnosis from childhood through young adulthood? Then voila. Autism makes perfect sense. I just wish I’d seen a #TooMuchInformation campaign two or three decades ago. Still. Onwards.

Anyhoo, it can be very challenging to coherently connect the disorganised and sometimes chaotically contradictory information about my environment from my senses. In this chaos it is tough going, and sometimes impossible, to control my stress and anxiety.

What controls my stress and anxiety is looking at everything my senses are perceiving and figuring out the pattern.

These are not fictitious patterns to self-alleviate, they are actual patterns. Noticeable patterns. Patterns that flow backwards with extra evidence that make sense of a situation, person, or occurrence.

Most (but not all) of my senses are hypersensitive (over-sensitive), a few examples are:

Hearing

  • I can hear a quarter second of a single note that is out of tune in a song that has five vocal lines, an orchestra, two guitars, drums and a bass. I have been told I have Perfect Pitch. It’s both a gift and really blinkin’ awful when I listen to music to review 😉
  • I hear the hum of my fridge-freezer fan/light bulb/a fly in the room somewhere. Apparently silent to everyone else.
  • Noisy bustling places quickly overwhelm and disorientate me to the point I cannot concentrate on anything at all other than walking in a straight line. e.g. supermarkets, London streets.
  • High-pitched voices or specific power chords feel like a hot cheese-grater under my skin and gums. Physically unpleasant.

The ironic flipside of extreme aural perception is that Heavy Metal as loud as possible calms me and helps me focus. I get absolutely lost in some of the more technical or progressive sides of rock and metal and every other sense disappears. It feels like everything else has instantly disappeared.

I am able to completely zone in on all the components of a song and separate them out into tracks in my head. Analysing each and every instrument as they all play together. Who would have thought that heavy and loud would be a remedy for my overactive sense of hearing, eh?

Art: Rosanna Rosetti

Art: Rosanna Rosetti

Eyesight

I was told repeatedly by doctors each time I told them daylight and other lights hurt my eyes really badly that it was probably because I have blue eyes and they are more sensitive. Just wear sunglasses, they said. “Yeah, that’ll work for me in the kitchen at home. Or being outside on a bright Winter’s day with no sunshine looking like a d*ckhead”, I thought. Hmm.

  • I have learned to look people directly in the eye but it can sometimes be misconstrued that I am staring and looking angry, when I am only trying to focus on holding eye contact. As a child my mother said I MUST look people in the eye or I would be accused of being a liar. However awkward it makes me feel I now stare at people’s eyes. If someone is saying something particularly interesting I stare to the point of ‘owl’ eyes. I’d rather not have to though as it makes everything else lose focus.
  • The colour pink infuriates me and I find it painful to look at.
  • Flashing lights are generally intolerable unless they are stage lights.
  • I am transfixed by the stars at night in a clear dark sky. It makes me feel overwhelmed in a good way. My mother used to call them ‘fairy lights’. I’m noticing a pattern in my similarities to my mother…
  • Light (if bright) physically hurts my eyes and they begin to water relentlessly, causing massive blinking fits and inability to see. I have cream blinds on my windows to filter sunlight. I have to close my eyes and cover them with my hands if things are too bright or I get ‘white blindness’ and it feels like my retinas have been scorched, much like that feeling you get if you catch the sun in your eyeline by mistake and that white spot blinks across your retina for a long time? That. Every day. Can happen with either daylight, a lightbulb, or a very bright and loud colour.
  • I wear black all the time.

Smell

If I am in a closed environment where the aroma is continuously dominated by a very strong scent: It could be the carpet/smell of an animal/smells of someone’s dinner/smell of a person/air-freshener etc I am constantly distracted by the smell and have great difficulty concentrating on anything else.

  • Often others can’t pick up the smell I can smell which is a little embarrassing if I’ve blurted out “I can all of a sudden smell Weetabix!” and find out someone has just silently parped across the room and it was their breakfast hours earlier…
  • Someone came to my house who had spent a couple of hours in a recording studio. When I got close to them I could smell a pungent and very strong musty carpet smell and felt a little strange. Apparently, that studio had carpet on the walls. The smell had been soaked up by the person. They couldn’t smell it or detect it when they were in the room and looked quite surprised.
  • However, If I detect something I love the smell of, I can’t stop sniffing it.
  • The smell of certain flowers are heavenly to me. Daphne, Winter Jasmine and Honeysuckle send my nose and brain into a delightful frenzy.
  • Certain smells make my nasal passage feel like it is physically burning: Pine, Tea Tree

Touch

As a child I did not like hugging. I found it restrictive and uncomfortable. Neither of my parents were that way inclined either and I was okay with that. Plus, being that close to someone meant I could smell them too closely and I often told them, leading to obvious chastising by whoever I thought smelled vile! I hug people I have known a long while nowadays as I know they won’t stink to high-heaven and it won’t make my nasal passage burn. I know their smells.

  • My skin is what might be considered hyper-sensitive. I can feel the slightest touch and I flinch quite drastically, often to the alarm of anyone around me.
  • Biting insects do not get a chance as I hear them buzzing and can feel them land. Plus, mosquitoes sound like Chinooks!
  • I have to have the finest cotton bedlinen or I can feel the lumps and bumps in the material. As a child my mother used to say I was “The Princess & The Pea” as I would complain I could feel crumbs in the bed. Through my pjs.
  • I love the feeling (and smell!) of smooth polished wood.
  • I wear socks half on and half off. I don’t like things on my heels. I’d rather be barefoot than wear shoes really.
  • To be unexpectedly touched by another person is very disconcerting and I strongly dislike anyone being too close to me. It sets off an internal panic alarm.
  • Any material scratchy like wool is a huge no-no. I scratch ’til I bleed.
  • I am terribly cold all the time. Anything below 21 degrees celsius begins to become very uncomfortable. Cold=actual physical pain.

Taste

I cannot eat anything with what my tongue perceives as a high salt or sugar content. In fact this rules out most pre-made foods/gravy powders/packaged soups/sauces/meals/dilutable drinks as all I can taste is salt and sugar.

  • Pre-made foods have no flavour to me other than salt or sugar. I cannot bear the blandness of ready-made food and physically cannot eat it if it doesn’t taste of anything distinct, so my preference is very strong and highly spiced foods. Made at home. That takes me all day.
  • I am hyper aware of the different fruits and herbs used when trying out a new wine. My taste buds can pick out the subtleties easily. Hence I can’t drink cheap wine. It tastes like sugary vinegar. Dagnammit!
  • Slimy food such as smoked salmon or any sushi makes me nauseous however many times I have tried to like it because it’s healthy. The texture is vomit-inducing.
  • Sugar and sweeteners taste drastically different
  • Favourite tastes/textures: Ginger. Black cherries. Home-made curries. Home-made Mexican food. Green lentils. Fresh vegetables as long as they aren’t cooked to mush. Ginger. Also ginger. Did I mention ginger? Nom.
  • I could eat Black Forest trifle for breakfast, lunch and dinner.

Image: https://www.medicinenet.com/

Balance 

I used to get severely travel sick for hours after travelling in a car especially if the journey involved a lot of changes in speed. Escalators remain the devil’s work! I don’t do well in high heels either.

  • I often end up stumbling to the left for no reason on flat surfaces. In the past this has been misconstrued as me being drunk and consequently being laughed at. Urgh.
  • The more stress I feel the more the world feels like it has tilted sideways. It gets bad enough that I physically fall over.
  • I get quite severe vertigo issues when trying to walk down a flight of stairs. As a kid I’d go down them on my belly. Much to my parents annoyance. Can’t do that on a bus or escalator as an adult though. Ha.

Proprioception

  • I can lose track of where parts of my body are so when in a crowded room I may not know exactly where I am in relation to everybody and everything else.
  • I  reach for a glass and it’s closer than I thought *smash*. I try to brush a bug off someone’s eyelid they can’t feel and *oops!* Poked them straight in the eyeball.
  • Moving objects in the distance all of a sudden feel like they are right in front of my eyes and it shocks me into a major flinch. This happens if I travel in a vehicle. It sets off the panic switch.
  • I constantly bump into door frames, people and other inanimate objects that have or haven’t moved. #CoveredInBruises
socialising by Rosanna Rosetti

Art: Rosanna Rosetti

Anxiety/Stimming

If I am anxious/or if I am not I had no idea I had certain things I did regularly. I now realise I do what is known as ‘stimming‘. My versions of this are:

  • I  listen to my favourite few particular songs and albums over and over. For example I might listen to Gojira’s “The Gift Of Guilt” 40 times in a row. Or for a whole day. And not get bored.
  • I apparently flap my hands a bit when getting a little excited!
  • I pick the side of my right thumbnail repeatedly with my index finger of the same hand, and often also scratch my left palm with my left index finger at the same time.
  • I have what I call ‘dancy feet’ when I am super anxious or super tired and they rub over themselves almost like hand-washing, but with feet. Ha.
  • I have a patch of skin on my left ankle that I repeatedly pick/scratch. Prior to the ankle picking, I had a small patch on my skull I used to pick that left a tiny bald spot (it’s regrown now I might add). Childhood stims? Yes. Same thing. Same area. Picking my nails and biting them. Listening to a single song repeatedly. Spinning til I fell down.
  • If I am wearing a necklace I repeatedly rub the pendant across my lips. I also did this as a child. I thought I was using it to concentrate. Maybe I was.
  • I tap my feet together or bounce my ankles/legs if I am sat normally in a chair and am anxious or trying to concentrate.
  • I AM NEVER WITHOUT MY TWEEZERS! I tend to auto tweeze hairs I can’t see but can feel. My hair is a very fine blonde texture so almost invisible to the naked eye.
  • I often walk around in the house on tiptoe. I have no idea how long I have been doing this. I only realised I did it when I looked up ‘stimming’.

Emotions

I often have difficulty understanding emotion, both mine and those of other people.

  • I find most emotion an absolutely pointless waste of time. Logic is everything I am and need.
  • However, I cannot watch an advert about animal abuse without feeling totally and utterly crushed. (?)
  • I still don’t understand why people enjoy being in families.
  • I feel more hate than you can imagine toward people that hurt anything defenceless.
  • Yet I care for a (very) few people very deeply.
  • My mental and physical energy is worn down by any physical interaction. Especially with those who ask a lot of questions or talk incessantly.

From my perspective, I find social customs and constructed greetings confusing, misleading and sometimes completely fake.

Art: Rosanna Rosetti

Art: Rosanna Rosetti

I have also found that I have been doing something called “Masking” which has apparently not been helping me at all and making my already internally chaotic life experience worse the older I got.

Generally I avoid large social gatherings now unless I have had alcohol in advance and feel much more at ease holding a genuine conversation with just one person at a time. Talk about reality TV and such things jars my very bones and I can be very dismissive of those kinds of attempts at conversation…

“Special Interests”

So most people might call these as autistic obsessions. I think there is a distinct difference. A special interest is not a form of OCD either. I have plenty more to learn about this so I can’t give an explanation properly yet. But my special interests over the years have remained:

  • Heavy metal
  • Zombies!
  • Owls
  • Cats
  • Psychology
  • Anthropology
  • Plants/gardening
  • Cooking from scratch
  • Learning the Law
  • Anatomy and diagnostics
  • Astronomy
  • Minions 🙂

So this is how it affects me, the very basic things.

There are far more ways everything affects my brain but these are the basics. It must be noted that everybody with or without Autism Spectrum Disorder responds to their environment relative to the way they perceive it. Therefore individual reactions will be different for each stimulus. Regardless of whether you are autistic or not-everyone has their own reactions to things.

I mean, there ARE people out there that love Day-Glo pink, going shopping, wearing wool, and willingly eat smoked salmon bagels, for feck sake. 

But who am I to judge.

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