This is autism

Last Monday, Autism Speaks told the world that autism is:
. . . living in despair
. . . fear of the future
. . . exhausted, broken parents
. . . lost, helpless, burdensome children

That kind of autism is not my autism. My contribution to the This is Autism Flash Blog.

I enjoy the sounds of the city around me, the strains of birdsong that I can hear even through traffic, the purring of my cat that almost but not quite manages to drown out all other sounds, the clicking of my keyboard while I’m typing. I hear the trains going past in the distance and I love getting sucked into that rhythm. When I listen to music, I become the notes, the melody, I can pick out the individual instruments and still hear how they work together to create a single sound. I sing along with the counter melody almost by instinct.

I have problems when people raise their voices, start yelling, even from a street away. I have problems with loud cars and motorcycles and airplanes, those sounds hurt my ears so much. Locations with lots of echo send me into sensory overload. Loud bangs, or even just someone clapping suddenly, frighten the life out of me.

This is autism.

I’m able to make the most outrageous statements in a completely neutral tone of voice and with a neutral facial expression.

My friends call it deadpan.

This is autism.

I’m unable to reach the highest shelves in my kitchen or at the supermarket without assistance. That means I either have to buy specialist tools like stepladders with my own money, or ask others to get things down for me. There are no services available. Sometimes I want to cry with frustration when I can’t get something from the top shelf on my own.

This is being 5’3″.

Autumn makes me happy because the piles of fallen leaves make me want to play in them, throw them in the air, smell the mulchy scent of them, hear the whispery crispy sound of them as they’re crushed. Fallen leaves make me feel like a child.

Winter makes me happy because snow is beautiful and shimmery and light. It gives everything a new shape. It’s soft and crispy at the same time. Snowflakes have the most intricate patterns. And having a snowball fight is so much fun, even though the sensory overload from having a snowball land in your collar is indescribable. Snowball fights make me feel like a child.

Spring makes me happy because there is no colour more beautiful than the green of new leaves. I stare up at them and see the sunlight fall through them. And I feel the wonder of new life, of seeing everything for the first time, the wonder of a child.

Sometimes I am able to shake off the shackles of social expectations and act like a child. I wish I were able to do so more often. Not being aware of social rules has its benefits.

This is autism.

I have to deal with people who don’t think like me every day. One of the greatest gifts that autism has brought me is connecting with other autistic people. Sharing the same way of thinking doesn’t automatically mean that we get along, or that we’re all good people. But there is an instinctive level of understanding that has eluded me for so long. Something that is lacking in the majority of people I meet. They don’t understand. And sometimes it seems as if they don’t even want to understand. That they don’t want me to be me.

I’m tired of being told I’m smart enough to figure things out myself. I’m tired of being told to fit in, to stop being so contrary and different. I’m tired of trying harder. I’m tired of getting fired for not being sensitive to office politics, for speaking the truth at the wrong time, for not understanding that sometimes words are more important than actions. I’m tired of having people angry at me for shutting down, for not looking at them, for not responding quickly enough.

This is not autism.

It is not autism that makes people treat me like this. And it is not autism when I’m hurt by how people treat me.

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Why I’m so awesome at the work I do

Does that sound arrogant? Maybe. I live in a culture where being honest about your accomplishments is seen as bragging. And bragging is a deadly sin in the country that admires their royal family for “being so ordinary”.

Thanks to my love for everything English, I have been able to adopt a middle way: being slightly eccentric while also pretending that this is just a harmless, funny thing and not my “normal” behaviour; being honest and direct while using sentence constructions that are similar to English ones with all their woulds and mights; and pretending it’s not a big deal while being completely upfront about my strengths.

  1. I’m an awesome writer
    Yeah, I know. You’re reading this blog so you probably think “Why mention that?”. But it’s worth mentioning. I have done copy writing for websites, rewriting long-winded marketing copy to fit short attention spans on the internet, highlighting strong points and paying attention to search engine stuff. (Which is one of the reasons I never use a link like here). In nearly every job I’ve had, I ended up writing manuals for stuff that people kept asking me about. Because I have a knack for describing things in clear, uncluttered language. I have also taught coworkers how to write better emails, paying attention to what question they’re replying to, acknowledging the other person’s initial issue and only then moving on to describing the solution. (And also making sure that the solution sounds like hard work so we can charge more). Not just telling them “it’s fixed, kthxbai“. And let’s not forget CHECK YOUR SPELLING AND GRAMMAR. I can spot a typo from a mile off. And I firmly believe that if you have a lot of spelling mistakes in an email to a customer, you’re signalling to them that you think they’re not worth the extra time to do a careful check of your writing before hitting “Send”.
  2. I’m good with customers
    You wouldn’t expect that from someone with persistent deficits in social communication and social interaction across multiple contexts, would you? But I am really good with customers. In both email and phone contact, I mirror their words in several ways, so they feel heard and understood (and also to make sure that I’ve actually understood them). I use clear and non-ambiguous language and don’t make promises I can’t keep. And I also follow through on the promises that I can keep. I’m not as good in face-to-face contact, but if I’m in a meeting as the technical expert, I can concentrate on just adding in the specifics and details, which gives me a way to avoid all the body language and emotional attachment. And the lack of emotional attachment is also why I’m one of the best people to deal with angry customers. I’m calm and professional. I know it’s not about me. The customer just wants to get taken seriously. Doesn’t everyone get angry when they think people aren’t listening? I’ve only had someone hang up on me ONCE, and he dropped by the office the next day to bring cake.

    © Poznyakov – Dreamstime.com

  3. I know something about everything
    No, seriously. I might not be the person who knows the most about a single subject, I might not be a CSS guru or a PHP wizard or a kick-ass sysadmin, but I know about all those things. Show me something I haven’t worked with yet, and I’ll get the hang of its general function and purpose within a week. And then I’ll write a manual about it. And be able to explain it to customers. And create realistic expectations of how much work it will be to implement something. Because I get the technical stuff. I often call myself a translator between customers and programmers, because I have the knowledge but not the baggage. I can think outside the box. And then explain the box to others. But my strength is not just knowing a lot of stuff, I also go in there and get my hands dirty. Image not loading? I’ll have a quick look and fix it. No probs.
  4. I fix things
    I’m a typical first responder. Sometimes my fixes won’t be pretty, but they will be fast and efficient. Because I have incredible focus and pattern recognition. I can see where things are going wrong, I can find those bugs, and then I don’t spend ages trying to figure out why the bug is there in the first place, but I simply think up a solution. (And put a comment in the code explaining the ugliness, because I’m professional like that). I see the nail. Sometimes my quick fixes are only a temporary solution, in which case I write up a short description of the problem and what I’ve done so far, and then send it on to a programmer. This saves the customer from having to explain the problem twice, and it saves the programmer from having to spend time looking for the problem, and listening to non-technical stuff.
  5. I’m detail oriented
    Yeah, people often think of details in relation to “getting bogged down in details”. But it is a strength, and an awesome one at that. It means I don’t overlook a step, no matter how small it is. I don’t fix something and then forget to send an email about it. I remember exactly how much time I spent on the phone so I can do my hours registration or invoicing. I write amazing manuals (there they are again, but seriously, it’s a skill) because I don’t skip a SINGLE step. I describe each click and command. (Which is not something most people do. Like that one time a coworker kept telling me to set up a VPN connection, and I kept going to the Windows Configuration screen and click “Set up a VPN connection” – sounds logical right? – but what he forgot to tell me was that I was supposed to do that by right-clicking a tray icon. Took us HALF AN HOUR before we’d solved that little communication problem. He wasn’t very detail oriented).
  6. I really really enjoy my work
    Dedicated is the word I’d use. Because obsession sounds so… autistic. But in fact, my obsessiveness is my main autistic trait. When I’m working, I’m in the zone. I’m utterly focused. I love writing the perfect email, making a customer happy by simply listening to them on the phone, implementing the perfect fix, making that light bulb go off in other people’s heads. I love beautiful bits of coding and well-structured databases. I love not being afraid of command lines and root privileges (although I did accidentally kill an entire web server once by executing a CHMOD command in the wrong directory. But that’s another strength: I always take responsibility for my mistakes).

    And most of all, I love being a nerd girl in a nerd world.

> sudo make me a sandwich – xkcd.com

Lists are an autistic thing, but they’re not an impairment

So, after the success of my huge list of things that I think make me autistic, I figured I’d give it another go. My childhood interview was pretty much a fail (more about that later), so I knew I needed some way to show the diagnostic therapist the impact that the autistic stuff has on my life. Which goes against every instinct I have. Because I hide my vulnerabilities and I concentrate on my strengths. Which is a healthy thing to do. Except when a diagnosis is completely dependent on having a significant impairment. “Needing some acknowledgment and validation” is not a diagnostic criterion yet, unfortunately.

Writing this list took me countless drafts, different set-ups (Word or Excel document? Order by categories or severity?), innumerable tears, and 11 days. It was a really hard thing to do. But it was necessary. I also toyed with the idea of making it funnier by listing examples, but then decided against that because I need this to be as bleak and depressing as possible. I might have to cheer myself up with writing a list of things I’m awesome at. Anyway, without further ado, the list of things I suck at!

FINANCES

I have no overview of my bank account balance.
I don’t pay bills regularly.
I have no idea which bills have been paid and which haven’t.
I have difficulty prioritising payments.
I have no idea of the amount needed to cover my monthly expenses.
I have difficulty assigning budgets.
I sometimes buy things I can’t afford.
I’m unable to save up money for big expenses.
I forget to open letters and bills.
I have problems organising important documents.
I forget to do important things like apply for unemployment.
I forget to return important forms.
I have difficulty replying to important emails.
I have difficulty writing job application letters.
I get upset about making phone calls to companies and organisations.

PERSONAL CARE

I don’t take regular showers.
I don’t brush my teeth regularly.
I have difficulty remembering to put on deodorant.
I wear the same underwear for several days in a row.
I sometimes forget to shave my armpits even when I’m wearing something sleeveless.
I bite my nails and nail beds, sometimes until they bleed.
I pull out my hair.
I pick my nose even in public.
I sometimes forget to go to the toilet and end up wetting myself.
I forget to eat breakfast.
I usually have no energy to make dinner.
I postpone making appointments for the dentist, the doctor, and the hairdresser.

HOUSEHOLD

I don’t do my dishes regularly.
I don’t clean my kitchen work area regularly.
I don’t vacuum and clean my floors regularly.
I don’t clean my toilet and bathroom regularly.
I don’t do laundry regularly.
I don’t maintain my garden.
I don’t tidy up after myself.
I leave my dirty clothes in a pile on the floor.
I forget to throw food out when it’s gone bad.
I often use knives and plates from the day before.
I forget to bring empty bottles to the recycling bin.
I don’t change my sheets regularly.
I sometimes forget to take out the garbage.
I have problems keeping my clothes and shoes organised.
I forget to water my plants.
I don’t clean the cat’s litter box daily.
I have problems throwing away things I have no use for.

WORK

I’m often late.
I call in sick too often.
I don’t know how to pick my battles or agree on small things even when privately disagreeing.
I don’t know how to voice my opinion in an empathetic, non-confrontational way.
I get very upset when my own priority list gets changed by my manager.
I have difficulty handling criticism that I think is unfounded.
I don’t know how to handle tasks I have no knowledge of.
I have difficulty asking for help.
I try to postpone phone calls to customers as long as possible.
I have difficulty answering emails when I don’t have a real answer yet.
I always follow unimportant rules (like no private internet use at work, or wash up your own coffee cups).
I get upset when other people don’t follow those rules.
I get confused when there are implicit rules that nobody says out loud.
I have problems with lying to customers to protect the company’s interests.
I have difficulty handling unscheduled meetings.
I get upset when people are talking close by or when the radio is on while I’m trying to work.
I get upset when a ceiling light malfunctions.
I don’t like company outings that involve more than just having a couple of drinks.
I have difficulty joining coworkers for lunch unless explicitly invited.

FAMILY AND RELATIONSHIPS

I forget to congratulate people on their birthday.
I forget to plan a visit or send a card when someone has just had a baby.
I don’t often take initiative to meet up with family or friends.
I don’t call family or friends to ask how they are.
I forget to give small compliments.
I need to be explicitly told that information is private and not meant to be told to others.
I have difficulty not focusing on solutions when someone tells me about their problems.
I have problems in the early stages of a relationship because I get obsessed with the person.
I don’t know how to keep a conversation going when I’m not interested in the subject.
I rehearse conversations in advance.
I get upset when someone is late.
I don’t know how to talk to others about my own emotions.
I feel more connected to my cat and my books than to most people.
I often have trouble thinking about what someone else likes to do, unless they tell me.
I don’t know how to introduce myself to strangers.
I often say inappropriate things.
I often take things too seriously.
I have problems not interrupting people when I think of something interesting to say.
I get very upset when I think people are not listening to me.
I am too trusting of strangers.

FEELINGS

I have problems coping with changes in plans.
I always order the same things in fast food places.
I have irrational food dislikes that I disguise as allergies.
I get upset when I’m in a crowd.
I get very upset from loud or ongoing noise.
I get upset in brightly lit environments.
I don’t like having the TV on.
I have problems personalising my environment (like hanging up pictures).
I have problems disconnecting from dreams on waking up.
I have problems watching thriller or horror movies and knowing it’s not real.
I don’t get anything done when I’m sick or in pain.
I get angry when being complimented on something that I think is undeserved.
I get stuck on things needing to be perfect.
I hide in my bedroom for weeks when I feel unable to cope with things.
I hate myself when looking at this list.
I want to be perfect.
I don’t want to be normal.

Leave your heart unlocked

I don’t often post things without commenting on it or saying why I wanted to write about it. I saw this video in a post from George Takei on Facebook, which in turn was a link to an article on Upworthy… but I’d like to post the video like this. My heart broke into a million pieces in the last 10 seconds.

Neil Hilborn, you are an amazing and courageous man.

Side effects

Had my third diagnostic interview today, some hopeful things, some sobering realisations, will write more about that soon. Need to write about something else for a minute.

Like I’m running a marathon.
(Although honestly, I have no idea what that feels like.)
Constantly out of breath.
Heart beating in my throat.
Palpitations. Randomly.
Can’t concentrate.
Tunnel vision.
Shaking hands.
Nausea.
Cold sweats.
Hot flashes.
Insomnia.
Restlessness.
Muscle pain in my thigh from unaccustomed stimming.
Meaning I’m jiggling my left leg non-stop now.

Dealing with people and sounds and lights is becoming more impossible by the day. I’m getting to the point where a trip to the supermarket leaves me gasping for breath for 10 minutes afterwards.

“Anxiety is a common side effect of giving up smoking.”

Is inability to function a common side effect as well?
It’s been two weeks since I quit. Hoping this gets better. Very soon.

Cleaning in progress

About a week ago, I aired out my dirty laundry for all to see. (Sorry, there are so many phrases and expressions involving clean and dirty, I’m having a field day! Yes, I love language).

I thought you might like to know that I’ve made some progress.

The picture of the kitchen cabinets isn’t so obvious (bad photography), but the drawers on the right are honestly downright grubby. The door on the left has already been cleaned. I’ve also unearthed the bedroom floor from the strata of accumulated laundry and crisp bags. Still need to vacuum but I’m getting there. Lastly, the attic, because that’s where all the dirty laundry from my bedroom ended up. At least I know what needs to be done there.

I’ve been using a couple of methods to get this far. One method I got off Snakedancing and is called productive procrastination. This doesn’t really work with executive function fail, but for dreaded chores it works wonders (for me anyway). Whenever I ran into something that made me feel anxious about doing it, I procrastinated by picking up some clothes and bringing them to the attic. I did have to remind myself to only do small bits of procrastination.

Some of the other methods are from the comments section on Procrastination or Executive Function Fail? on Musings of an Aspie, which is a recommended read by the way. But the comments contain some very interesting observations as well.

Kathryn:

I find little bursts of doing cleaning stuff works best, and I mean “little” like spraying the counters with a water-vinegar mix while I’m nuking my coffee. By the time I’ve had my coffee, the water’s had time to loosen any gunk, plus there’s visual reminders (the counter’s wet, the spray bottle is out). Then it feels logical or part of a pattern to wipe the counters clean, in an “if-then” way.

That’s how I managed to clean the kitchen cabinets today. And the fridge door yesterday, by the way. While waiting for the tea kettle to boil. This helped a lot with pacing myself, I identified ONE thing that I could do on the spot and stopped as soon as it was done.

Lucy:

can’t have anyone over syndrome (spells out c h a o s )

Quoted that one because it’s hilariously spot-on. 🙂

waggermama:

for anyone with an android phone, I can really recommend an app called Regularly. I set household tasks and rather than set a date I can say the task needs to be done weekly/fortnightly/monthly/yearly and then it *gently* reminds me to do it.

I immediately downloaded Regularly from the Google Play store and so far it looks really promising. I did have a fairly large anxiety attack on Sunday evening after I started to add all the chores that needed doing, because THE LIST WAS JUST SO INCREDIBLY LONG. Granted, I did add things like “brush teeth daily” because I tend to forget that sort of thing.


Where I got stuck at first is due date, which is always a problem for me, because I have this feeling everything was due yesterday. And then I panic. But as it turns out, in every task there’s also a thing called “Log”. And when you click that, you can say when (you think) you’ve done this task last. Which is far more convenient for me than to start guessing when I need to get it done. Based on the last time I did something, and how regularly I want to do it, the app gives a nice gradual colour scheme to each task. Which brings me to the second reason why I like this app: RAAAAAAAAAAAAAAAAAINBOWS. I really like colours sorted by rainbow. 🙂

Edit: the default colour setting goes from red to green. To get the red to blue rainbow colours, go to Settings > Color Range > Extended.

I’ve been using Regularly for two days now, and it gives me good clues on what my top productive procrastination should be, and lets me tick off random items from my “little bursts” cleaning list. So all in all, it seems to be working.

In closing, Nattily’s blog has a really awesome article that offers an in-depth analysis of procrastination vs. executive dysfunction vs. ability to do things “that are duller than, I don’t know, dull things” (with photos and coloured highlighters!). And Neurodivergent K’s blog has some very useful tips on how to “autistify” your surroundings to make things like cleaning easier to remember and execute. Also with photos!