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.

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Quick update

I haven’t posted in a while. The reason for this is that I’m stuck on two things, both related to the second phase of my diagnostic testing.

Last week I had my first interview, together with my mother, about my behaviour in childhood. I am still processing what happened during that interview, and I haven’t gotten to the point yet where I can write about it.

Update! I’ve finished my post on the childhood behaviour part of my diagnosis, in case you’re interested.

My second interview is next week, and I’m working like crazy on getting some sort of grip on my thoughts so I’ll be able to present a coherent picture of how autism is affecting me at the present moment.

It’s hard work, but I think I’m sort of coping. Well, apart from pretty much not having left my bedroom for the past two weeks. Which is OK. I’m not going to push myself out of my comfort zone, there are more important things to focus on right now.

Hopefully I’ll be able to write about everything at length soon! In the meantime, here is a link to an animated kitty who purrs if you rub her belly.

flash-kitty-screenshot

http://s3.amazonaws.com/wbx-files/maukie.swf

High and low

People, especially medical professionals, are very fond of saying that real autism is nothing at all like how it’s depicted in Rain Man, the famous 1988 film with Tom Cruise and Dustin Hoffman.

Guess what? I disagree.

In this clip, Ray (Dustin Hoffman) is trying to explain to his brother Charlie (Tom Cruise) why he’s not comfortable wearing the pair of underwear his brother gave him. He always wears boxer shorts and these are Hanes. They’re too tight. They’re not comfortable. So he didn’t put them on. He tries to explain which kind of underwear he prefers, but gets stuck on saying which ones he always buys, the boxer shorts at K-Mart. And so Charlie ends up screaming at him that it doesn’t matter where he buys his underwear. “What difference does it make?! UNDERWEAR IS UNDERWEAR!”

No it isn’t. Even neurotypical people have their preferences. Some people can’t stand boxer shorts. Some people hate lacey knickers. Some people prefer cotton, others prefer synthetic fibers which have more stretch. Loose or tight, sexy or functional. We’ve all tried out different types and settled onto something we like to wear.

The difference between autistic people and non-autistic people is that deviating from our preferences is really hard for many of us. Either it’s because our routine gets interrupted, which means we need some time adapting to the new situation. Or our sensory processing difficulties make it impossible to think of anything but the unpleasantness of this strange fabric against our skins. It’s like having an itch you can’t scratch. There comes a point where you can’t think of anything else, let alone focus on what someone else is saying.

And when you’re speaking a different language, when you don’t know the “normal” way of explaining this, you get accused of making a big fuss about nothing, like Ray.

That’s why I actually recognise so much about this scene. This is a fairly spot-on example of what autistic people deal with every day, down to the anger and frustration of the neurotypical people around them. Of course it’s fictionalised and overcharged, because hey, it still has to be entertainment. But it’s not as inaccurate as the medical professionals often claim it is.

Maybe because Ray is visibly autistic. He’s what is often referred to as low functioning. And low functioning is bad. It gets you institutionalised and treated like a child, incapable of making rational decisions.

Guess what? I can be low functioning too.

Other people will say I’m not at all like Rain Man. I own my own house. I work 40 hours a week. I have a higher income than most people I know. I don’t receive any government assistance or disability benefits. I go to parties and socialise with coworkers and do my own grocery shopping and meet up with friends for drinks and even go on holiday by myself. That’s so high functioning that nobody believes me when I say I am autistic.

I will say that I am like Rain Man. That is why I posted a video of me being nearly non-verbal. That is why I showed how much trouble I have keeping my house clean. That is why I wrote an angry post about peeing myself in public.

Triplets eating lunch on a couch

We are alike © Msphotographic – Dreamstime.com

I am both. It depends on the activity (I’m crap at paying bills, I’m good with shopping on a budget). It depends on circumstances (I’m fine on the phone when it’s work related, I try to postpone personal phone calls as long as possible). It depends on how much I’ve forced myself to go beyond my comfort zone lately. Functioning on a neurotypical level takes a lot of effort for me, which means I run out of spoons faster than you’d expect.

So if I can be both, what exactly do high or low functioning labels mean? Have we really looked at a person’s strengths before labelling them low functioning? Or do we just look at the obvious symptoms that set them apart from neurotypical people?

Do we judge people only on either being visibly or invisibly autistic?

Guess what? I think the answer to that last question is yes. And that is why I reject functioning labels. Because it says nothing about my functioning. It only describes what others think of me.

If you know of any other insightful posts on this subject, please let me know in the comments! Shameless self-promotion is allowed as well!

Words are fucking difficult

Apologies for the NSFW language. But not really. My words have decided to go play hide and seek again tonight. Not as badly as the night of my first blog post, because I can still write, although it takes a bit more effort than usual.

But the talking?

Yeah, not so good.

The Salad Variations

Fried chicken salad

200 grams of chicken breast
75-100 grams of lettuce
4 cherry tomatoes
100 grams of cottage cheese or mozzarella
1 tablespoon of olive oil


This is how I clean chicken breast. I cut off a lot of weird bits, as shown on the left of the first pic. Then dice it into pieces of about one inch, as shown on the right. It’s hard to do this because it seems so wasteful, but part of my “Life As An Adult” motto is that it’s more wasteful to throw out food because I can’t eat it due to ickyness. So. I simply don’t buy meat everyday. And when I do, I’m allowed to cut off the weird bits.

Next, I put a bit of olive oil in a frying pan, just enough to cover the bottom, add chicken pieces, and put it on a medium to high heat. Basically just high enough to make spluttering noises but not so high that there’s oil flying everywhere.

Then I ignore the pan for a while and start sorting out the lettuce. See, the thing is that I really like this mixed bag, but they’ve started putting too much onion in it and that’s smelly and awful. So I pick out all the actual leaves. I can do that, I’m an adult now. Even if it takes 10 minutes.

Which, incidentally, is about the time needed for the chicken pieces to become nice and brown and crispy. Put the lettuce in a bowl and stir the chicken to get it to brown on the other side as well. Be careful of oil splatters.

Next, I want to add the cottage cheese to the salad, but as it turns out the best before date was about a week ago. Yay executive function! Disregarding that, I rely on my awesome autistic senses to taste if it’s gone off. Oh, actually it has. Yay autistic senses! So I use some mozzarella instead, diced into small bits.

Then I slice the cherry tomatoes into quarters. The chicken should be completely done by now so I add everything to the bowl, then add some extra virgin olive oil as a dressing. I don’t use store bought dressings, because vinegar and sugar and lots of crap. This salad doesn’t need it.

You can leave out ingredients or add others if you so wish (cucumber!). That’s the great thing about salads. You can add whatever you like. Except if you don’t like lettuce, then you might have a problem. But even then, fried chicken bits with tomatoes and cottage cheese is pretty yummy as well.

Endive and orange salad

4 endives
4 oranges, peeled and sliced
a small handful of walnuts
3 slices of blue cheese
1 tablespoon of extra virgin olive oil


So, endives. Also called chicory sometimes. It’s a very popular vegetable in the Netherlands. I don’t really like it when it’s cooked. But raw? Yum. I have this thing for bitter tasting stuff. If bitter is your thing as well (there’s a reason chicory root is used as a coffee substitute), then you’ll probably like this salad.

Anyway. Clean the endives, remove any outer leaves that look shrivelled or brown. Slice into small strips, about half an inch wide. I cut off the tip here because it was green, basically the more green the more bitter, but there is a limit to what I can take. After I’ve sliced up the endives, I take out the inner core which is a bit tough and again, very bitter.

Then I cut the oranges into segments.

Once I’ve done that, I add some walnuts, about five of them broken into small pieces. Say a small handful.

For the blue cheese, I’ve chosen a Rochebaron this time, because it’s not extremely pungent and has a very creamy texture, a bit like brie. But sometimes I use a more pungent one like Danish Blue as well. I cut this into small cubes. Not too much or it will completely dominate the salad.

Finish with some extra virgin olive oil as a dressing, together with the juice from peeling and slicing the oranges. Same goes for this salad, play around with ingredients you like and leave out things you don’t like. It’s all good.

Oranges are not the only fruit

So I made an endive and orange salad for dinner yesterday, and I thought it would be a nice excuse to show you how to clean oranges the professional way, ending up with those pretty little segments without skins. I didn’t figure out how to do this until I was 32, and my mother still doesn’t get it. But it’s pretty awesome.

Orange peelThe type of orange doesn’t matter. I always buy what we call “juicing oranges”, because oranges that are meant to be held in the hand while eating them tend to be less juicy (because of messiness). And I like juicy.

So yeah, this is going to be messy. If you have sensory difficulties with dirty and/or sticky hands, keep the tap running so you can rinse your hands whenever you need to.

First sliceFirst, you need to cut away the white rind. It takes some getting used to, but if you start with cutting the “top” of the orange off, you can see exactly how thickly you need to peel this baby. I always peel the oranges over a bowl, so I can catch the juice as well. I did mention that this is going to get messy, right?

Once you have gotten all of the white rind off, you can hold the orange in one hand and take a sharp knife to slice close to the white “divider” thingie.
Second sliceThis is actually the skin of one of the segments. Don’t worry about slicing very closely to the “divider”, you’re going to end up with different size segments anyway because nature is chaotic like that. So just slice somewhere next to it and don’t worry about not getting it right the first time.

Third sliceNext, you’re going to do the exact same on the opposite side of the segment. So because I’m right-handed, first I slice on the right of the “divider”, then I move to the right and slice on the LEFT side of the next “divider”. (I’d really appreciate suggestions on how to call these, by the way. Divider sounds idiotic). If you’re left-handed, it’s probably easier to mirror this.

Once you’ve made those two slices, you can simply lift out your orange segment with a flick of your knife.

Then you can move on to the next segment, again making a slice right of the “divider”. You can see the thickness of the segment skin in the picture.

Orange leftoversKeep on working your way down through all the segments, and keep rinsing your hands if you need to, because they’re going to be covered in orange juice.

If you used the same trick as me, doing this above a big bowl, you’re going to end up with:

  1. About 7-9 pretty orange segments without skins
  2. A big bowl of juice
  3. A weird flowerlike orange leftover thing!

I will do a follow-up post for the endive salad, which is also pretty awesome but I know most people hate endives.

Just for the lol of it

It’s not only autistic people who have trouble reading body language cues or make really awkward social mistakes.

Making new friends on the underground

John Mayer and Kanye West failing the high five hug

Ryan Seacrest trying to high five a blind man

I don’t want Taylor Swift to hug me either

No comment needed

Lowfive fingerwiggle shakebump?

Ouch

Knee pads are a sensory nightmare

This is why I never high five anyone

Too many choices, so she goes back to clapping. Good girl.

Get out of my face!

Source: Buzzfeed