Why veggies made me cry

Coping with unexpected changes. Sometimes I can manage. Sometimes I can’t.

I’m picking up my weekly bag of veggies at the shop.

Checkout lady: “You’re not on the list.”
Me: “Oh, I’m sorry, I should have picked it up on Saturday.”
CL: “Then that’s someone else’s bag. You can’t take that.”
Me: “Oh I’m so, so sorry! I’ll put it back right away.”
CL: “Do you want next week’s bag?”
Me: “Yes please.”
CL: “Right, then you can pick that up next Monday.”
Me: “I’m sorry? Why can’t I pick it up on Saturday?”
CL: “You can only order bags for Monday to Friday.”
Me: “Yes but I’ve always picked it up on Saturday.”
CL: “We only keep bags for one extra day. So then you want the Friday bag.”
Me: “I guess?”
CL: “Oh, I see you’re already on the list for pickup on Saturday.”
Me: “Yes, that’s the bag I want.”
CL: “OK, I’ll put you down for one bag.”
Me: “So I can’t get this week’s bag at all?”
CL: “[string of words with names of days somewhere in the middle]”
Me: “OK…”
CL: “[string of words]”
Me: “OK, thank you. Bye!”

[Walk out. Try not to cry.]

I’ve taken a look at the website and at the emails I get each week and I still don’t understand. Maybe she thought that I wanted to change my pickup day? Or something? Whereas I just wanted to know when I am allowed to pick up my veggies. Communication is so confusing.

And it basically means I won’t eat any fruit or vegetables this week because I can’t deal with the confusion.

Dammit.

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Autistics Speaking Day 2013: Fear

I want to speak to you about fear.

I am autistic. And I am afraid.

Fear of not being seen as fully human when I lose my words. Fear of losing my words because I have so much to say. Fear of not being listened to.

Afraid of getting my experiences discounted, of being told that I can’t understand something because I’m autistic. Afraid of being told I have no empathy.

Fear of losing my job. Losing it again and again. Fear of losing my house. Fear of seeing my safety destroyed.

Afraid of big crowds. Bright lights. Afraid of loud noises. Afraid of tiny noises that are impossible to identify. Afraid of clothes that seem fine one moment and unbearably itchy the next.

Fear. Of you looking at me and seeing a loser. Fear of you telling me that I should stop feeling sorry for myself. That I should try harder. When I’ve been trying so hard all my damn life. Fear of becoming too tired to continue.

Afraid of getting judged for not being able to keep my house clean. Myself clean. Myself fed. Afraid of getting judged for not doing the things that normal people do.

Fear of being told I have no feelings.

Afraid that nobody will understand and I will end up alone. Forgotten. Discounted. Ignored.

Fear that people will only see my defects. Not my strengths.

I am speaking of fear.

And you?

You who tell me to look you in the eye. You who tell me to stop fidgeting. You who tell me I’m smart enough to figure it out. You who tell me to use my words when you mean your words, because that’s the only ones you’ll listen to. You who tell me I’m cold and distant because I don’t show my emotions in a way that you recognise. You who tell me lying is bad and then punish me for speaking the truth. You who tell me every person is unique and then tell me I’m too different.

Will you also tell me I have no right to feel afraid of you?

What is my face doing?

That dreaded moment has arrived again. Time to renew my passport. Of course my passport expired a couple of weeks ago already (yay executive function!) so I really need to get it done SOON. In the Netherlands you are required to have a valid ID document with you at all times, and that means a passport or an official ID card. Driving licenses aren’t always valid ID, and besides, I don’t have a driving license. So passport it is.

And that means getting my picture taken.

That’s what I hate about renewing my passport. The rest is fairly standard, scripted stuff, nothing much that might throw me off. But photos? Argh.

Because I have no idea what my face is doing.

With all the rules about “no smiling, no visible teeth, face has to be completely visible, neutral expression”, having my picture taken becomes a task of gigantic proportions. Especially the neutral expression bit. In my current passport picture I look like a particularly depressed heroin junkie. And that took about 25 minutes of non-stop instructions by the photographer. “Tilt your head a little bit to the left. No, LEFT, not right. Raise your chin. Don’t smile. Open your eyes wider. Stop tilting your head to the right. You’re smiling again. Don’t frown.” And so on and so on. It’s really stressful because I have no idea how I look. Am I smiling? Is this ok? WHAT IS MY FACE DOING?

I used to practice at home for hours, trying to see in the mirror what the “right” position is to put my face in, and trying to remember which muscles I’m tensing and which I’m relaxing and what facial configuration does that result in and can I reproduce it? But usually as soon as I get to the photographer, I forget everything I’ve practiced and simply adopt my standard “deer in headlights” look. Or inappropriate smiling.

But that was before I knew about autism and maybe it’s not just me who gets confused by all the facial expression stuff. So this time I was determined to do it differently.

I took a mirror with me.

At the photographer’s, I tried to explain that I have trouble knowing what expression I have on my face and would it be OK if I kept the mirror in my hand so I could check? He just looked at me and asked me why on earth did I need to do that for? OK, fail. He then started explaining all about the requirements which I KNOW BY HEART so really that’s not the problem here. Fail again. Just take the damn picture already.

And then I went to a second photographer.

Yes, it’s an expensive solution. But I figured, if I just get as many passport photos taken as possible, at least one should fit the requirements. I can’t deal with the stress of not knowing whether my photo will be accepted or not. And if it doesn’t get accepted, I’ll have to do the entire thing ALL OVER AGAIN. So I’d rather have some extra expenses than all that added stress. I’m learning to accommodate myself. Which rocks, by the way.

When I explained to the second photographer, he turned the computer screen so I could watch and see each picture he took and adjust my face in whatever way I felt comfortable doing. And he helped me get my errant left incisor under control as well (it has a tendency to slip over my lower lip). And it took about 15 tries but I didn’t feel as self-conscious as at the first photographer’s.

Maybe I should go to a third photographer as well, but I’m sort of out of spoons and I think the second set is probably going to fit the requirements. Although I look cuter in the first set, I think. Oh well. I’ll take both of them with me when I go to the passport office.

Cognitive love

My baby nephew is celebrating his 1st birthday tomorrow. He’s my youngest brother’s first child and so very adorable. But my brother and his wife are both adorable too so I guess it’s a genetic thing. 😉

Anyway. Because I’ve been so fixated on the birthday party being tomorrow (notes in my Google Calendar and everything), I completely forgot that his actual birthday is today. Until my sister-in-law posted a picture on Facebook showing my nephew with a party hat.

Oops. My mind immediately went into social panic mode. Keep in mind that this is my brother, who knows better than anyone how awkward I can be and who loves me regardless. He’s the only person in the family who isn’t socially awkward in one way or another (my father’s pretty good with people as well, but he admits it’s still not entirely effortless and he doesn’t really start enjoying it until after one or two drinks). None of us are diagnosed but my youngest brother is very obviously the only neurotypical person.

I had no idea what was expected of me.

I’m going to the birthday party tomorrow. My brother knows this because he invited me. So should I congratulate them tomorrow? When I’m supposed to be there? Or is the posting of this picture some kind of clue that they’d like to be congratulated today as well? Will they be upset if I wait until tomorrow? Or will they say I’m silly for calling to congratulate them when I’m already coming by tomorrow anyway?

OK. Hold on. Take a deep breath. YOUR BROTHER LOVES YOU. Nothing you can do will make him think you’re any more of a fruitcake than you already are.

And so I arrived at the easiest solution. I called my brother and asked him if he wanted to be congratulated. He laughed and said yes. And also that he liked me calling to ask. And that he was looking forward to seeing me tomorrow.

I love my family. Even if I have to reason it out sometimes.

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.

America’s Medicated Kids

I didn’t know Louis Theroux had done a documentary on this subject: young children who get put on drugs for mental disorders. I have to admit I’m sort of scared to watch it, because either Louis Theroux is going to agree with the parents and take a huge fall off the pedestal I’ve put him on, or he’s not going to agree with the parents but it’s all going to be hopeless anyway as long as we keep seeing these children as problems who aren’t trying hard enough to fit in.

(I watched the first 5 minutes and so far I’ve already spotted the first professional saying of a 10 year old autistic boy that he’s improved so much because he makes more eye contact now. Seriously. Out of all the issues to focus on).

Update: since posting this, I have to admit I’ve adjusted my opinion on this issue. Yes, I still think people medicate too quickly and for reasons that have nothing to do with the kid’s wellbeing and everything to do with the world this kid is supposed to live in. The documentary gives a few poignant examples of that.

However, on the other end of the spectrum are kids like Charlie. Charlie feels better on meds. After reading his story and the way his parents have tried so hard to get him off meds, I have to say that yes, this sounds like a good solution for him (of course I don’t know him personally and I am not his therapist, but the story describes very clearly how Charlie’s wishes on the matter were listened to and taken into account).

So that means I was wrong to judge so harshly. I encourage you to read the blog at Outrunning the Storm and to watch the video here and make up your own mind. My opinion on the matter is not really that important. The important thing is to keep trying and keep questioning and never accept someone else’s ideas as a matter of fact UNLESS THEY ARE THE ONES AFFECTED BY THAT IDEA. That is all.

A day in the life

9:15am
That’s nice. Cat has allowed me to sleep in for a change.

9:20am
Get dressed in clothes I remembered to pick out yesterday evening (based on criteria of cleanliness and making me feel confident and pretty enough to go to outdoors festival thing). Feed cat. Check to-do list and remember to put on deodorant.

9:28am
Make tea and remember to have breakfast. Yay me! Another item off my to-do list.

9:35am
Spend 5 minutes agonising over what to do with my hair. I should have made an appointment at the hairdresser’s about 2 months ago. At least I took a shower yesterday so don’t have to worry about hair also being greasy.

9:45am
Check bag for necessary items (purse, keys), put jacket on and go to bicycle shop. I want to exchange the second-hand bicycle I bought there for another one because I don’t like the tires on this one, they make me fall over when I try to turn a corner. I should have done this the week after I bought it. It’s now been 3 weeks.

9:47am
Discover the bicycle shop is still closed. This upsets my schedule. I need a bike before 11:00am.

9:52am
Nice man from launderette next door notices my trundling back and forth and tells me bicycle man is on his way.

10:03am
Bicycle man arrives and I explain why I’d like to exchange the bike I bought from him. He asks me for the receipt. I reply that I’ve lost it but if he needs it I’ll go back home and look for it, no problem, I understand, I’ll go home now then? I think my voice sounds fairly panicky. He says it’s ok, he remembers selling me the bike.

10:23am
Finally manage to choose one bike from all the ones he has for sale. I should take my time and consider all the options but I feel like I have to make a choice. And this one looks nice and it’s more expensive than the old one which sort of makes up for my guilt about returning it weeks later and without a receipt.

10:26am
Get home and realise I’m 34 minutes ahead of schedule. Make more tea and read some blogs.

11:03am
Look at clock and notice I’m now running late. Oh bugger it. Check bag for necessary items (purse, keys, phone, sunglasses, sunscreen, deodorant, scissors, plasters). Tell cat goodbye and cycle to train station on new bicycle.

11:10am
Spend next 10 minutes trying to wrestle bicycle up and down train station staircases to get to correct platform. Luckily the 11:25am train is late.

11:25am
The announcer says something something mumble something 11:25 train to Amsterdam will depart mumble mumble. There really are a lot of people on the platform. Why can’t they shut up so I can hear what the announcer says? Panic slightly, then tell myself fuck it, if train departs from a different platform I can simply take the next train. Relax.

11:32am
Train arrives. I’m not going to be in Amsterdam at 12:00pm. And I don’t have a hand free to text or call my friend to say I’m running late, because the train is super crowded. As in, we’re standing on the balcony. With three bicycles. One lady in a wheelchair. 8 Spanish tourists. And a very loud hen party, 3 of whom are trying to find the toilets.

Empty train balcony (photo by Recensiekoning)

11:57am
Arrival at Amsterdam Central Station. I’ve reached the point where every time one of the hens screams, I screw my eyes shut and hunch my shoulders. I know this makes me look like a nutter. I don’t care. I just want to get off. When the doors open I manage to hoist my bicycle out without tripping, falling down the gap between the train and the platform, crashing into someone else, or making a complete idiot and/or nuisance of myself. Victory.

12:04pm
Realise that my headlong flight out of the station has been in vain, because I need to go back in and find an ATM. Fuck. Do I have to?

12:12pm
Finally on my way. Bliss. Sunny weather, bicycle. I’ve lived here long enough to know the fastest ways to get somewhere, but also the quietest and most scenic ways. Guess which one I’m taking. It’s beautiful out here.

12:24pm
Arrive at beer festival location which is a farm out in the middle of nowhere. Not that many people here yet, which is why I wanted to get here early. Lots of choice in food and beers. Start feeling panicky again because there is no leaflet listing where to find what. I don’t like having to make a choice while people are looking at me expectantly. I don’t know what I feel like having. I end up having a low alcoholic beer from the last stall in the line up because it’s set up under a large tree and the dappled light is soothing and they look like nice people and I don’t want to walk back because people might think I’m being rude. Their beer turns out to be very nice.

12:30pm
Friend arrives! I always feel less conspicuous in company and this is a close friend who knows I’m dealing with the autism stuff right now and who is the first of my offline friends to know about this blog.
*waves at offline friend*
Spend next hour or so just talking and trying out food and beers. Having fun! Also take some new pictures for blog header.

14:00pm
Small anxiety spike because ex shows up. I get along OK with ex but he always says very rude things about good friend. I don’t know how to deal with that. Decide to try and focus most of my conversation resources on friend and not worry about being rude to ex, because tough titty.

14:30pm
More people arrive. Another good friend joins group. Getting more crowded. Still having fun though. Although the music is a bit distracting. Maybe I should pace myself. But I’m having fun!

15:00pm
First friend has to leave because he’s having people over for dinner. Awww. It’s now getting so crowded that someone has to stay with seats at all times to prevent them from being taken by others. Sun is also getting very hot. Decide to move to a quieter spot with ex and other friend. Turns out quieter means less crowded, but louder music. Still having fun though!

16:00pm
Can’t remember much from this point on. People. Sunlight. Music. Talking everywhere.

17:00pm
Realise I need to go home. Well, should have gone home about 2 hours ago. Another friend is here and he’s doing this spiel with my ex about therapists saying I have no right to decide what’s best for me because well, autism obviously means I’m not capable of coherent thought and it’s really funny. But I notice my responses are getting flatter. So I should probably head home.

17:35pm
Actually say out loud to my friends that I should probably head home because I’m getting tired. Say goodbyes.

17:50pm
Cycle back to train station. Still gorgeous weather and gorgeous scenic route. Very nice. More traffic on road though. Have to pay attention.

18:04pm
Decide that it’s more practical to leave my bicycle across the water because that’s where I can pick it up when I cycle to work. Take the ferry behind the station to drop off my bike on the other side. Am fast enough locking my bike that I can take the same ferry back. Score!

18:24pm
Take more pictures for blog header. Realise I’ve just missed the train back.

18:36pm
Next train arrives. I get a seat to myself. Not for long. Two minutes later I get joined by four boisterous males in their early twenties. I know this because they proceed to talk about their own ages, the ages of the girls they could be dating, and the age of the boys their sisters are dating (one of the sisters is dating a Russian who is 5 years older than her and whose parents have a speedboat and a dacha on a lake somewhere), for the next 25 minutes. I feel old when they start talking about a girl born in 1996. I’m honestly trying not to pay attention and to concentrate on what I’m reading. But I can still recall most of their conversation a day later. It isn’t even interesting. How fucked up is that.

19:02pm
Thank god I can get off the train. Oh. Just thought of something. Bugger. Because I took my new bike to the station this morning, and that new bike is now in Amsterdam so I can use it for my work commute, I don’t have a bike here at the station to get home. Will have to take bus. Bugger McBuggerypants.

19:03pm
Call friend in UK while walking to bus station because this is usually a good time to reach him. Talk on phone for what probably amounts to an hour. I think. Somewhere in that time I must have gotten on a bus and got home. No idea what time though. I think I might be talking too loudly on the phone. In English. People probably hate me. I always hate people who talk too loudly on their phones when on the bus. And instead of talking about my day so I can start calming down, I talk about all sorts of things that are among my special interests right now and I’m getting more and more hyper by the minute.

20:10pm-23:00pm
No idea. Complete blank.

23:00pm
Realise I’m really really tired. Go to bed. Read for half an hour, then turn off lights.

00:15am
Still awake.

2:00am
Still awake. Images from day still going through my head. Reliving conversations. Not in an anxious or worried way but I keep going back to things. Can’t let it go. So tired.

2:15am
Give up trying to fall asleep and start reading book again.

4:15am
Turn lights off again. Fall asleep.

5:30am
Wake up again. Go downstairs to get some water. Fall back asleep after about 10 minutes.

7:02am
Get woken up by cat biting my foot because his food bowl is empty. I love my cat. Honestly.