What is this thing called picky

I’ve been reading a lot of stories from parents about their child’s picky eating habits. The despair is apparent: how can I get my child to try new things? How can I ensure that they get a healthy, balanced diet?

Well, speaking as an autistic adult: don’t. I was a very picky eater as a child, and I am not a picky eater anymore (apart from a few exceptions). And frankly, this is DESPITE everything my parents did in forcing me to try new foods and finish everything on my plate. I used to dread dinner time. Now it’s my favourite meal of the day.

Because I started cooking for myself.

Picky eating in autistic kids is not obstinacy or temper tantrums to get candy. It’s tied up with a whole boatload of sensory issues: not only taste, but also smell, texture and temperature. Most of us are far more sensitive to these things than you realise. That’s why some autistic kids don’t like crisps, or ice cream, or bubblegum… things you imagine every child would like.

Maybe I can show you by listing examples of the things I would and wouldn’t eat as a kid.

Vegetables

You know, the big one. The one every parent freaks out about, because if you’re not eating your veggies, you’re going to DIE. Or something. So let’s look at how I kept myself from dying so far.

© Katrien | Praetershoek

I liked broccoli but only if it wasn’t boiled too long. Spinach, only if it was nearly pureed. Green beans were alright. I was quite fond of string beans as well, but only sliced very thinly (my mother had a special slicer for that, pictured on the right). My favourite vegetable was curly kale, mashed with potatoes. Other than those five, I hated all boiled vegetables. I hated them so much, that I scooped them behind the radiator at my back when nobody was looking, or hid spoonfuls in my pockets. I also hated to eat anything in which I couldn’t identify the vegetables. Vegetable soup was a nightmare, mostly because of the texture of boiled onions and leek. I didn’t start to eat onions until I was 19, and then only if they were sliced razor thin. Leek took me even longer, age 25. I didn’t eat tomatoes until I was about 22. Tomato sauce was OK provided it was pureed to death, but not my favourite. And other vegetables? I discovered a marvelous thing once I started living on my own: I could eat them raw. Carrots, cauliflower, endives, beets, cabbages, courgette (zucchini), even fennel have all been added to my veggie repertoire now that I’m an adult. All raw. I love veggies. What a difference from when I was a kid. If only my parents hadn’t forced me to eat them boiled.

Fruit

I loved and still love cherries. Oranges and clementines have always been a favourite of mine. The tarter the better. I couldn’t stand overly sweet oranges, not to mention the ones that were sort of chewy and dry. I also had to spend about half an hour picking off every last bit of pith. I’ll call it attention to detail, but the adults around me called it exasperating and neurotic. Now that I’m an adult, I fortunately have a higher pith tolerance. Strawberries were more complicated. I love them plain, but process them in any kind of way and they became my most loathed fruit enemies. Strawberry jam, strawberry yoghurt, even strawberry ice cream: YUCK. It was a combination of taste and texture: processed strawberries are completely different from fresh ones. Bananas were and are still only OK if they are slightly green, with absolutely zero brown spots. The texture of brown banana is still grueling to me.

© Kornelia Häfele | Wikipedia

I could only eat apples if they were rigorously de-cored, and not with an apple corer because that would still leave pieces of core. Pieces of core even made me refuse apple pie if I found any of it inside. I hated the taste of grapes. I still can’t stand seedless grapes as an adult. Peaches, apricots, and plums were only edible if they were skinned, again a texture issue. In line with the tartness of oranges, I also loved and still love any type of berry: raspberries, blueberries, blackberries, blackcurrants, redcurrants, whitecurrants, gooseberries. It probably helped that we grew most of those in our back garden. My favourite was gooseberry, cracking the skin and then sucking out the juicy flesh. So while I was very specific about the ways in which I wanted to eat fruit, fruit was never the nightmare for me that vegetables were.

Dairy

I was breastfed and then got formula for a couple of months until I was about 12 months old. I stopped drinking milk after that. It used to worry my mum that I wasn’t getting enough calcium. She shouldn’t have worried, because I’m an absolute cheese fiend. One of my first words was cheese. When people asked me what I wanted on my sandwiches, I always said “Cheese!” even when I meant something else. And even as a little kid, I preferred the stronger tasting and aged cheeses (I discovered blue cheese when I was about 14, and fell utterly in love). I also ate a lot of plain yoghurt, with little or no sugar added. Fruit yoghurts tasted artificial to me and were too sweet. As an adult, I still eat enormous amounts of cheese, but I’ve also added ice cream (yes you’ve read that correctly, I didn’t like dairy based ice creams as a kid), sour cream and other dairy products to my diet. I still can’t stand sweetened yoghurts or milk, though.

Meat and fish

© Kokodrill | Dreamstime.com

My love of meat was extremely dependent on texture. I wouldn’t eat sausages if they had chewy bits in them. I painstakingly removed rinds of fat from everything, including ham and bacon. I wouldn’t eat any type of cold cuts except very thinly sliced “rookvlees” (a kind of smoked carpaccio). Steaks had to be extremely well-done. Funnily enough, I loved such weird things as chicken livers, venison, and rabbit. As an adult, I’ve slowly moved towards liking rare steaks, but I’ve become very picky about quality, and prefer to eat vegetarian if I can’t get good quality meat. I’m still not fond of rinds of fat, but I’ve learned how to cook them to a crisp. Crispy is much better. Texture-wise, I also had to eat everything with knife and fork, even things like chicken legs, because I hated my fingers getting sticky. I didn’t eat spare ribs until I was 27. Any type of fish sent me into a panic because I was scared to death of choking on a fish bone. Even fish fingers had to be meticulously checked for stray fragments. I didn’t learn to like fish until I was in my late twenties, and I still check for fish bones, although not as panicky.

Beverages

In this sense, probably the ideal child, because I only drank tea or water. Even fruit juice and cordials had to be watered down beyond all recognition, otherwise I wouldn’t drink it. I couldn’t stand Coke or other sodas, because they were far too sweet. I liked carbonated mineral water, though. As an adult, I’ve added coffee and most types of alcohol (except alcopops) to this list, but other than that, no change.

Other things

Bread: as a child, only toasted (but not too crispy), especially supermarket bread. And without whole grains in them. And no hard crusts. I’ve come a long way since then, and now I’ll eat any type of bread, although I am still fairly snobby about supermarket bread.
Eggs: only fried or scrambled, and only if the yolks were broken up immediately and the egg was thoroughly cooked. I didn’t eat a soft boiled egg until I was 34. Hard boiled eggs still make me gag.
Vinegar: my nemesis. Just the smell is enough to make me throw up. My two brothers always tried to take advantage of this, by “accidentally” dropping some mayonnaise or ketchup on my chips so I’d refuse to touch them. More chips for them. I still have to be very specific in restaurants about not wanting any salad dressing or other condiments.

This image is enough to make me nauseated. Not kidding.
© Kliek | Wikipedia

You might be thinking to yourself that this doesn’t sound very picky, because the list of foods I would eat was still fairly long. However, it was still a list, and if something wasn’t on the list, I’d have a complete meltdown when forced to eat it. It was nearly impossible to take me to a restaurant because I didn’t want to eat anything I wasn’t familiar with. Once, when I was on holiday in Austria, about age 10, I ate nothing but Wiener Schnitzels at the local restaurant for over a week. This ended with the chef making me the most gigantic Schnitzel I’ve ever seen (about the size of two large dinner plates), to the extreme hilarity of everyone present.

For years, food to me meant being forced to eat things, because that was the way the world worked. It was only after I started cooking my own food that I dared experiment a bit more and develop a healthier attitude. I had control over what I ate and how I ate it, and that helped me to become less uptight about food. Even so, it took me a long while to stop feeling anxious when having dinner at someone else’s house, because I hated drawing attention to my long list of weird food dislikes.

I’ve finally come to the point where I eat and enjoy most foods. But it’s been a very long, traumatic road.

Meltdown

It was just after the first exercise in the mindfulness for autistic adults group. One of the women in the group was sitting with her head down and if you looked closely, you could see that she was crying. When the therapist asked her a question about how she’d experienced the exercise, she didn’t respond at all. It was like she wasn’t listening, wasn’t even there. She just kept rocking back and forth with tears running down her cheeks.

The therapist asked if she wanted to be left alone and that, after a slight delay, actually got a response: some vigorous nodding that seemed like an extension of the rocking, but was probably meant as a yes. The rest of the group then continued with talking about the exercise we’d just done.

When everyone else had had their say, the therapist addressed the unresponsive woman. This time she lifted her head, but she didn’t make eye contact with anyone. The therapist asked her what was the matter, and the woman started flapping her hand near her ear, looking very angry. Then she blurted out: “Words!” There was a bit of confusion at that, but the therapist asked if she was having trouble finding the right words, which made sense. The woman replied with an emphatic “Yes!”

In bits and pieces, the story came out: something about the exercise leaving her far too open to all the noises in the room, in the building, and on the street outside, not being able to self-regulate anymore, and melting down. It was obvious she was very distressed, she even used the words “so painful” to describe the sounds. At that, some of the others in the group nodded. They knew what she meant. The therapist asked if the woman wanted to leave, but she said: “Want to try”. So the therapist said we could all take a short break and that the woman could rejoin the group when she felt ready. She said she was going to go outside, and put on her coat. Someone helped her pour a cup of tea to take with her.

Only I noticed the multitude of angry red welts from where she’d been digging her nails into the back of her hand.

© Julián Rovagnati – Dreamstime.com

Dealing with a public meltdown. Dealing with the pain of sensory overload. Dealing with the stress of having other people, strangers, see you in your most vulnerable moment. Dealing with suddenly not passing anymore, and wanting to hide. Dealing, coping in the only way that’s still open to you: trying to block the pain by inflicting a different kind of pain on yourself.

Unfortunately I can imagine all too well how that feels.

The welts are still visible on my left hand as I’m typing this.

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.

Job interview advice – Grooming

This article was first published with permission on Invisible Autistic.

In my previous post, I discussed some of the unspoken rules around the clothes you wear to an interview.

This week, I want to focus on something that I still struggle with myself: personal grooming. Yes, you’ve read that correctly. Apparently it’s fairly common for individuals (both children and adults) on the spectrum to have problems with personal hygiene and grooming habits. I seriously have no idea why this is so. It might be related to hyper- or hyposensitivity (not wishing to be covered in artificial scents like soap and shampoo and deodorant, or not being aware of your own body odour), or it could be something more cultural and social in nature. There’s a lot of social pressure to say that you shower every single day (and sometimes twice a day), but I know for a fact that not everyone does so. Yet people won’t ever admit that, because of the stigma attached to lack of personal hygiene. For myself, I feel perfectly comfortable showering every 3 or 4 days at most. I don’t think people have ever noticed.

For a job interview, however, it’s important that you look and smell like other people.

Hair

Wash your hair the day of your interview. You don’t need to worry about styling, this is completely optional. As long as it doesn’t look greasy you’ll be fine. If you are worried about your appearance, you can go to a hairdresser a few days before your interview and get your hair cut and styled. DON’T under any circumstances get a haircut on the same day as the interview. The stray hairs will drive you absolutely bonkers and you will look like a crazy person constantly trying to pick hairs out of your neck. Trust me, I’ve done this.

Clothes

Make sure all your clothes are freshly washed, with no visible stains or tears. Bring one or two safety pins for emergencies. I usually only discover a hole in my jacket 5 minutes before the interview is about to start. Stains are harder. If you discover a stain right before the interview, one option is to go to the receptionist or office manager (if they have someone like that) and say “Excuse me, I’ve just discovered a stain on my jacket / trousers / skirt. Do you have a wet cloth or some wipes so I can try getting it out?” It may sound counter-intuitive but they won’t be at the actual interview and therefore won’t judge you on accidents or not being 100% prepared. In fact, if you thank them (about 3 or 4 times max) and apologise for the inconvenience, they will see you as an approachable, sociable human being with a normal amount of nervousness. Everyone is nervous before a job interview, right? So that’s a good tactic to get the office manager or receptionist on your side. And believe me, that helps.

Body odour

Put a small anti perspirant stick or roller in your bag or in your outer jacket. I know sticks may feel icky but sprays are usually too big to carry around with you. And you’re going to need anti perspirant, not deodorant – because deodorant is usually only perfume and nothing else. Sometimes, when I’m really nervous, I even dab some anti perspirant on my hands about 15 minutes before the interview so my hands won’t feel too sweaty when I’m shaking hands. Don’t do this too shortly before the interview though, because it might feel too dry. 15 minutes is a good time frame and will give you the opportunity to wash your hands if by accident you’ve used too much.

Fingernails

With many thanks to Ben Forshaw

This is something I was not aware of, even though I am a ferocious nail and nail bed biter. Your hands — and nails in particular — are likely to get noticed. I don’t know how the interview people do that if my attention-to-detail, notice-irrelevant-information autistic self doesn’t. But it’s probably one of those uncanny senses that neurotypical people have to immediately notice things that don’t conform to a certain standard.

So, here’s the advice. For men, nails should be short, neatly-trimmed and clean. For women they should be neat and clean, but can be short or long. What does neat mean? No ragged edges, no bleeding. If painted or false then they should have an even finish (I’m also a ferocious nail polish chipper, so I can attest to that one). Best to avoid nail decoration that’s too flashy or trendy, like very bright colours or patterns. If you habitually bite your nails so they appear untidy, Ben recommends getting a manicure close to the interview appointment: within a day if possible. I’ve never had a manicure but I can definitely see that working. My additional advice: avoid doing DIY or anything with sharp knives in the days leading up to the interview. Plasters and bruises are not an attractive look.

I hit my middle finger with a hammer about two months ago. Don’t do this right before an interview.

Make-up

Here’s where there is a huge difference between men and women. As a man, you’re not supposed to wear any make-up at all, but women are regarded as social misfits when they don’t use any. I hardly ever use make-up myself, but I made an appointment with a make-up artist last year to explain to me how to apply all that stuff properly and what would work with my skin colouring and so on. Because I just couldn’t figure it out. When I wear make-up, I notice that people tend to take me more seriously. It’s silly but it works. So I would definitely advise any women reading this to invest in a (private) make-up tutorial and some products. You don’t have to slather your skin with crap, but some mascara and eyebrow pencil will already make a difference. Take your time to figure out what feels OK on your skin, I find that powders feel less sticky than creams. But even if you have sensory issues, a make-up artist can actually help you find products that don’t feel icky. Still, don’t worry if this is something that you simply don’t feel comfortable with. It helps with a job interview, but it’s not as important as clothes and hygiene.

Jewelry

Again, no jewelry for men. Watches and wedding rings are OK but if you have any other jewelry, take it off. For women, it’s again the exact opposite. I never used to wear jewelry but I have noticed that especially in job interviews with other women, this tends to set me apart as unfashionable and nonconformist. Even men to a certain degree prefer one or two pieces of discreet jewelry to none at all. The easiest option is to invest in a matching necklace and bracelet. You can even use a bracelet to unobtrusively stim a little bit when needed. Silver, gold, and wood coloured necklaces and bracelets work with nearly all outfits. Stay away from big chunky costume jewelry or jewelry with too many gemstones, however, unless you have pretty accurate fashion awareness.

If you have trouble operating a clasp, like I have sometimes, you can try very long necklaces like the white and the green/blue bead necklaces above. You can simply pop those over your head. They’re even fairly easy to make yourself if you don’t have a big budget. Just measure off a long piece of yarn (long enough to wrap around your head at least twice, just experiment a bit), string some beads together, and tie it off with a knot. It doesn’t have to be fancy, as long as you use interesting beads.

Shoes

This is a difficult one. If there’s any industry-specific footwear, like safety shoes for workshops or wellies/rubber boots for farm work, then that’s of course perfect. But overall, I would say leather shoes for men and (moderate) heels for women. However, a lot of autistic people have issues with uncomfortable shoes, especially autistic women and high heels. I personally like them because: toe walking! In public! Without comments! But not everyone does and that’s OK.

The most important thing is that you can walk on them and that your shoes don’t pinch your feet during the interview because that’s distracting. Leather shoes or brogues can be very stiff, especially if you don’t walk on them often. Suede is a bit more supple. Canvas sneakers, like Converse or Vans in a solid colour, are an acceptable alternative. I would advise against other sport shoes, especially white ones, unless you really can’t walk on anything else. A workaround is to wear your normal shoes to get to the interview and then change into your nice shoes just before. However, that definitely poses the risk of pinching or other uncomfortableness, so only do that if you’re sure the other shoes won’t drive you insane within an hour or less. Try it out while sitting on the sofa at home if you’re unsure.

Two last tips: make sure your shoes are absolutely clean (especially sneakers), and never ever wear open toed shoes or sandals, no matter how hot the weather is.

Too much?

That wraps up my advice on clothes, accessories and grooming. It all sounds very superficial, but it helps to not get rejected before the interviewers even hear what you’re capable of. I had a job once doing data entry at an HR department, and I’ve seriously seen interview reports where a candidate got rejected for wearing the wrong kind of shoes. I would love to hear if you’ve got any similar stories or tips to share!

In the next post, I’ll be looking at what to do when you’re early or late for the interview, how to greet everyone, and other situational pitfalls.

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.

What Others Had to Say: Love, Overwhelm, Violence

OK this is pretty awesome. Also because I got quoted (whee!) but seriously, so many parents and autistic adults sharing their experiences with upset turning into violence. Make sure to read the original post and comments as well. There is support. It’s here, in our voices, in knowing what you’re going through. You’re not alone.

Emma's Hope Book

Yesterday I wrote a post entitled, When Upset Turns Violent.  I wrote it hoping for feedback from those who may have at one time, or currently have felt so overwhelmed they strike out and from parents who are on the receiving end of children who become violent.   I wanted to get a better idea of the kinds of support that might be beneficial to all involved.

As the comments came in, both here and through email, I realized a few things.  One was the shared feeling of shame so many felt. Tremendous shame was described by almost all the parents of kids who express themselves violently, as well as some who become so overwhelmed they become violent.  Exacerbating, or perhaps a part of the shame, was the feeling that this should not be spoken of for fear of ridicule, blame and judgment.   Many people remain silent, which…

View original post 1,898 more words

Soundcaged

Waiting room at the mental health clinic. Walk in. Sit down.

© Arpad Nagy-Bagoly – Fotolia.com

The clock. Every second. Tock. The clock. The clock.
The window is open.
A car is getting closer. VrrrrrrrrRRRRRRRRRAAAAAAAAuuuuuughhhhhhhhhmmmm.
Music. Somewhere. Radio maybe? Too faint to hear which song.
Receptionist typing.
Someone LAUGHS. Outside? Softly fading away.
The clock. The clock.
Pouring coffee in a plastic cup.
Someone COUGHS.
The clock. The clock.
Music. Is it getting louder? Still too faint to hear which song.
The window is open.
Road works. Banging bricks together. Clink. Clink clink.
Sipping coffee from a plastic cup.
The clock.
Receptionist typing.
Air conditioning vent. Whrrrhrrrrrh.
Whrrrhrrrrrh.
Whrrrhrrrrrh.
A car is getting closer. VrrrrrrrrRRRRRRRRRAAAAAAAAuuuuuughhhhhhhhhmmmm.
The clock.
PHONE RINGS. Jump up.
Only once. Settle down.
Receptionist. Talking.
Music. Which song which song?
Road works. Bricks. Clink clink.
The clock. The clock. AC vent. Whrrrhrrrrrh. Whrrrhrrrrrh.
Someone SLAMS a door somewhere.
Receptionist typing.
Footsteps.
Sipping coffee from a plastic cup.
Sliding doors in the hallway. Whshshshhhhh.
Sliding open.
Sliding shut.
Sliding open. Sliding shut.
Receptionist typing.
Sliding open. Stuck? No rhythm.
Footsteps.
Someone COUGHS.
Someone opening a file cabinet down the hall.
Footsteps. HIGH HEELS.
The clock. AC vent. Whrrrhrrrrrh.
“MR. JONES? HI HOW ARE YOU?” Jump up.
Not for me. Settle down.
Receptionist typing.
Sipping coffee from a plastic cup.
Music definitely louder now. Can almost hear the song.
Footsteps. High heels. AC vent. Whrrrhrrrrrh.
Sliding doors. Sliding open. Whshshshhhhh.
Sliding shut.
The clock. The clock. The clock. The clock. THE CLOCK. THE CLOCK.

This description is based on the actual sounds I heard while waiting for one of my diagnostic appointments, last Thursday. This wasn’t a sensory overload, just the things I heard. The fluorescent lighting didn’t breach my threshold that day so I haven’t included them in the sound list. I also haven’t included the receptionist’s phone conversation because of possible privacy issues and the conversation the receptionist had with one of the therapists about one of their colleagues possibly having a burnout and not returning to work because by that time I was concentrating on my stim toy and besides it was really none of my business even though I could hear every word.

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.

Rijsttafel

This is not going to be an actual recipe, but a description of a fairly typical Dutch thing called “Indische rijsttafel”. I’m not going to spend a lot of time describing what it is because there’s plenty of resources available for that. What I am going to spend some time on is explain why “rijsttafel” is a picky eater’s idea of heaven.

Eating out is always stressful for someone who has trouble deciding what he or she wants. This is not just “being difficult”, it’s the difference between a snapshot decision for a neurotypical person and an overwhelming multitude of equally valid choices for an autistic person. How do you decide? It’s not that easy. And what if you hate whatever you ended up choosing because everyone was staring at you and waiting for you to make up your mind? The social rules governing complaints about food are another minefield that’s nearly impossible to navigate.

This is why I love rijsttafels. In Dutch Indonesian restaurants, you sit down, someone decides how much money you’re willing to spend per person, there might be a few extra questions about what kind of rice everyone wants (white, yellow, fried, or sticky – easily solved by just getting every kind) and that is it. Next thing you know, there’s about 40 different dishes being served out. You can be as picky as you like and simply start by eating some rice, then if you feel confident or relaxed enough, try a very small spoonful of whatever looks non-threatening. THIS IS HOW EVERYONE EATS RIJSTTAFEL. It’s awesome.

So in case you ever get the chance to eat at a Dutch Indonesian restaurant, I thought it would be nice to show you some of the dishes that you may encounter.

	Nasi putih	White rice. Think that’s fairly trigger free with regards to texture and taste. Unless you don’t like rice.
	Nasi goreng	Fried rice. Usually contains bits of egg (with omelet texture) and fairly easy to spot bits of cooked ham and leek. Can contain other things as well. Took me years before I could eat it, too many different textures going on.
	Nasi kuning / koening	Yellow rice. My favourite. Slightly sweet coconut taste but dry, not sticky.
	Lontong	Sticky rice cakes. You don’t see them very often. Fairly mushy, tastes of white rice and water.
	Daging rendang	Looks terrible, but it actually tastes brilliant. Slow cooked beef in a creamy lightly-spiced sweet coconut sauce.
	Daging semor / smoor	Another one that looks terrible but isn’t. Slow cooked beef in a sweet-spicy soy sauce.
	Daging rudjak / roedjak	Slow cooked beef in a thick spicy sauce.
	Daging bali	Slow cooked beef (noticing a theme here?) in a very spicy sauce (made primarily with crushed chili peppers)
	Sateh / sate	You guessed it, satay. Comes in several different forms, although the most common is chicken (ajam) with a medium spicy peanut sauce. Texture of the sauce is usually very smooth.
	Sateh kecap / sate ketjap	Same as above but instead of peanut sauce, it’s served with a spicy-sweet soy sauce, a bit sticky. Much nicer in my opinion.
	Telor	Means egg. Can come in several varieties like “Telor Sambal Goreng” (the most common one, a spicy currylike sauce). I can’t stand hard-boiled eggs so I avoid them.
	Sayur lodeh / sajoer lodeh	Several different vegetables lightly boiled in coconut milk. Usually contains cabbage, green beans, carrots, and bean sprouts. Sometimes also tofu or tempeh. I like it but wouldn’t recommend it if you don’t like slippery veggies.
	Sambal goreng boontjes	My favourite vegetable dish ever. Green beans in a sort of coconut / chili pepper stew. But the green beans should still be chewy instead of mushy. Sometimes they get it wrong and then I’m really disappointed.
	Atjar	Pickles. Atjar tjampoer is mostly cabbage and carrots, and atjar ketimoen is mostly cucumber. Vinegar which means I stay away from it, so no idea what it actually tastes like.
	Tempeh goreng	A pressed soy bean product. Cut in small pieces and fried in a spicy sauce. Very peculiar, sort of sticky texture, spicy and sweet taste. I really like it.
	Krupuk / kroepoek	Prawn crackers. Can be a bit odd at first because the air bubbles in the crackers sort of suck on your tongue. OK, that sounds weird. But it is actually quite a funny feeling. Like cheese puffs.
	Seroendeng / serundeng	Toasted shredded coconut with sugar and spices
	Pisang goreng	Battered and deepfried banana. Nothing wrong with that.
	Spekkoek	Cake made out of extremely thin layers of vanilla and a sort of spice cake batter. Moist and sweet, but not overly so. Texture is almost like pancakes. If you are not so sure about wanting to try Indonesian food, at least try this. It’s spectacularly yummy and it’s a lot of fun trying to peel the layers apart even though other people will think you’re weird for doing that. But who cares. 😉

Related articles

• Rijsttafel revisited (autisticook.wordpress.com)
• Basic “Rijsttafel” (gonsfoodcorner.wordpress.com)
• Different Perspectives: Dining Out (inneraspie.blogspot.com)

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.

Toast with prosciutto and mozzarella

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.

Are you coming? I’m HUNGRY.

Shame

This article has been reprinted with permission on We Are Like Your Child.

I want to test a theory. The theory of shame going away when it’s out in the open.

I seem to have this thing. Which could or might possibly be related to decreased pain sensitivity. Or maybe executive function.

I don’t feel my bladder getting full. Usually the first signal that really gets me to pay attention is “bladder completely full cannot hold it need to find toilet within next 30 seconds!” Mad scramble for toilet ensues.

That or peeing myself.

© Bartlomiej Zyczynski – Fotolia.com

I’m 36 years old. I’m a pretty successful career woman (I can still bluff my way around the gaps in my resume). I have bought a house on my own (mortgaged of course, but still). I have a small but close circle of friends. I’m close with my family. I’m highly verbal. If I wanted, I could easily be seen as a shiny Aspie.

And the last time I peed myself in public was 6 weeks ago. And I don’t mean a few dribbles. I don’t mean “bit of incontinence, here’s some Depends”. I mean not being able to stop until my bladder is empty. Thank god this time the train platform was fairly dark and I was wearing a skirt so only my shoes got soaked. Made a nice squishy sound when I walked away from the puddle in the hopes that nobody would see.

Have I forgiven myself for not being able to feel my bladder until it’s bursting? Oh, years and years ago. It’s just a thing that happens. I can’t do anything about it except frequent toilet breaks even when I don’t feel like I have to go, and sometimes I simply forget to do that. It’s part of being me.

Do I still feel absolutely mortified when I pee myself in public? Does telling this story make me cringe? Did anyone here reading that story feel embarrassment on my behalf? Or even disgust?… Yeah, thought so.

But I’m glad you listened.

Edited to add some background:
When I wrote this, I was incredibly angry. Angry at the idea that shame was just some silly notion that would disappear as soon as it got examined. So I wanted to prove that there were some things that would not be less shameful when brought out in the open, because it wasn’t irrational to feel ashamed of them. That it was actually normal to feel ashamed for wetting myself as an adult.

But now I feel pride. Pride that I had the courage to come out and admit that there are some things that will always be a problem for me. Pride that I was asked to publish my story on We Are Like Your Child, which is a blog full of articles by bloggers I very much admire. And pride that maybe, just maybe, someone else out there will read this and find some consolation and courage in here too. Bless you all. Wetters and non-wetters alike.

Guess that means I’m doomed *giggles*

Related articles

• The One Where I Talk to Myself About Shame (musingsofanaspie.com)
• Just Another Post About Shame (feministaspie.wordpress.com)
• Shame (aspergersandmeblog.wordpress.com)

Simple non-icky vegetable soup

Simple soup with courgette

I used to be a very picky eater. Very. Between the age of 9 and 14 I only ate unsweetened yoghurt with granola (but only if it wasn’t too crunchy), spinach (but only if it was finely chopped and no cream added), toast with a kind of carpaccio (but only very thin slices without obvious rims of fat or sinews), and toast with margarine and semi-sweet chocolate sprinkles. I gradually branched out, but by the time I was an adult, the list of things I simply wouldn’t eat was still a mile long.

Only after I moved out and learned how to cook for myself did I start to appreciate foods that I’d never in a million years thought I’d like.

Example: onions. Horrible slithery things. I could always tell them apart from the rest of the food, even in a stir-fry or a stew. Soup was even worse. They seemed to float to the surface, waiting until I put my spoon in, and then ambushing me so I could never have a spoonful of soup without an onion in it.

When I no longer had someone putting onions in my food and telling me I wasn’t allowed to pick them out, I could relax and start to experiment with onions. First by cutting them in really really really tiny pieces. TINY. Cutting up one small onion easily took me 30 minutes. But that was ok. Nobody was staring at me. Nobody was making me eat it. If I didn’t like it, I could throw it out. The pressure was off.

And I found I actually quite liked onions. When they weren’t slithery.

To honour non-slitheryness, here’s my first recipe. It’s a very simple lightly creamy soup with not too much going on, taste or texture wise.

Stock cubes

Courgette (zucchini)

Beef ragout

The main problem here is the beef ragout. This is not ragu, as you can probably tell from the picture. It’s a mixture of beef stock, flour, and gelatine. I have no idea whether it’s available in other countries. The reason I added it is to make the soup a bit thicker and creamier so that the contrast with the texture of the vegetables won’t be as big. So you can also use another thickening agent like cornstarch if you have no idea what beef ragout is.

Ingredients

• 1.5 litres (6 cups) of normal tap water
• enough powdered stock for 1.5 litres (6 cups) of stock (in my case, 3 tablets)
• 400 ml (1.5 cups) of beef ragout OR thickening slurry
• 0.5 courgette (zucchini)
• knife
• whisk
• 2 litre (2 qt.) soup pan

Preparation

If you are going to use a different thickening agent, prepare this first.

1. Take the soup pan, add the water, and bring it to a boil.
2. Dissolve the powdered stock in the boiling water. This takes about 5 minutes.
3. Turn the heat low and add the ragout or slurry.
4. Stir a bit. Don’t worry about lumps. Keep it simmering on a low heat.
5. Cut the courgette in slices (as in the picture above).
6. Stack a couple of slices and cut them in strips. Repeat until all the slices are cut.
7. Get the whisk and vigorously beat the soup to get rid of lumps.
   If you’re clumsy like me, you might want to turn off the heat first and let the soup cool down a bit before whisking.
8. Whisk some more. You really don’t want any lumps.
9. Add the strips of courgette.
10. Heat up the soup for 2 more minutes. The courgette should be warm but not cooked.

Serves about 4 people. Nice with toast or bread sticks.

The idea behind this soup is that the courgette stays firm instead of becoming gooey and slithery. Also, the strips are easy to see and don’t ambush your spoon. Courgette doesn’t have a very overwhelming taste and the texture is nice when it’s not cooked. At least in my opinion.

Related articles

• Courgette and eggplant overdose…. (minoanhomes.wordpress.com)
• Creamy Garden Vegetable Soup (yesiwantcake.com)

Paying attention

IMPORTANT. READ THIS FIRST.

In this post, I’m going to be looking at biological stuff. After I finished writing, I realised that this could be easily read as advocating for a “cure” for autism. Nothing could be further from what I want to say. I don’t want to be fixed or cured. “Cure” thinking has done and is still doing so much harm to autistic people, that it almost stopped me from publishing this post.

However, I think the link between depression, ADHD, and autism could still do with some examining. Maybe we’re all part of a really broad spectrum. Maybe we’re all differently wired in a similar way. Maybe we can be who we are without feeling horrible or being made to feel horrible about it.

Maybe we aren’t alone.

© fotovika – Fotolia.com

In an earlier post, I wrote about how important it is for me to do things that activate my reward centre. I speculated that the lack of achievement in housekeeping was the reason my reward centre wasn’t lighting up with nice juicy dopamine, and so I didn’t have enough motivation to do any regular housekeeping. This is how recreational drugs work, and sex, and food, and any other pleasurable activity: they increase dopamine levels which in turn activate your reward centre.

The reason why I was thinking about rewards and dopamine is because since about the beginning of June, I have been really struggling in several areas of my life. I started a new job after being unemployed for 10 months, I decided to quit smoking, and I got referred to a mental health clinic for an autism diagnosis. Maybe a bit too much to cope with all at once.

But was that all?

Normally I feel pretty damn good whenever I manage to actually do something, even in my bleakest moments. Look, I did the dishes! The rest of the house is still a mess and I haven’t paid the bills in over two months, but screw that, I did the dishes! I’m awesome! Now, that sense of pride seemed oddly muted. Was this depression? It didn’t seem to be, I was feeling very overloaded with work and smoking and autism but not necessarily sad or down. Overwhelmed, unable to deal with sensory stuff, pretty normal for me in that kind of situation. The muted feeling was new.

And then I made a brain leap. That’s how it felt. My brain jumped up and landed in a different spot. A spot labeled “dopamine”.

You see, I was a very heavy smoker. Think 45-50 cigarettes a day. So when I decided to quit, I asked my GP for varenicline because I’d heard good things about it and figured it would be the support I needed in overcoming my dependency. It worked like a charm, the first day I used it I was down to 23 cigarettes and after 5 days I smoked about 8 a day. Instead of 50. And it didn’t cost me ANY effort. I just didn’t feel the need.

How does this work? Well, nicotine, like other addictive drugs, makes your dopamine levels peak. So there’s an instant reward when your nicotine receptor gets activated. Varenicline prevents this reward by making the nicotine receptor less sensitive, and at the same time mimics a low level of dopamine so you don’t go cold turkey.

So I was weaning myself off my dopamine addiction. And lowering my overall dopamine levels.

And suddenly I didn’t like alcohol as much. I didn’t pay my bills. I couldn’t keep my house clean. I hid in my bedroom. I bought things I normally never eat, like crisps and chocolate and cakes. I had a very low threshold for loud noises and bright light. I nearly broke down at the thought of having to take the train to work. I couldn’t focus on my work as easily as I used to do. I began compulsively refreshing my Facebook feed and email and rapidly switching from one browser tab to the next. I started stimming heavily (whereas I could have sworn I didn’t ever stim. Nope. Not me. Not stimmy at all).

I started thinking that maybe there was a blog post in this. So I looked up dopamine on Wikipedia, googled some stuff. And then I stumbled onto this.

We usually think of dopamine as a chemical messenger that is related to things like reward or drug addiction. But more properly, dopamine signaling has to do with salience, how important something should be to you at any given time. Dopamine spikes are associated with the pleasure of drugs or good food or sex, but they also say “PAY ATTENTION TO THIS”.

This is from an article called The Dopamine Side(s) of Depression and it looks at several behavioral studies done with mice to look at how dopamine works. Go read it. It blew my mind.

Because besides the “Pay attention to this” effect – which I’m starting to think could be part of why sensory processing disorders, for example difficulty to filter out background noise, occur so often in autistic people – the research also looked at the role of dopamine in social defeat stress.

You take a normal mouse, and put him into a cage with a bigger mouse. The bigger mouse “owns” that cage. He’s a retired breeder and very aggressive. He will usually launch himself right at the poor intruder mouse, beat him pretty badly, resulting in a “social defeat”. The mice are usually separated very quickly so the larger mouse doesn’t injure the intruder, but the defeated mouse is partitioned off in the case, where the aggressive resident can still threaten and bully the poor guy.

The mice that were given high level dopamine stimulation showed signs commonly seen in 10 day social defeat (less social interaction with other mice, less inclination to engage in pleasurable activities)… after only 2 days.

Let me repeat that for you. The mice that were bullied and beaten up showed signs of depression MUCH FASTER after giving them high levels of dopamine.

Are we on to something here?

Depression. Hyperfocus or the lack of focus. Unable to filter sensory input. Decision making (assigning priorities). Even motor skills are commonly linked to dopamine.

But social behaviour is a new one for me.

Can autistic people simply be part of the large group of people who are differently dopamine-wired?

Related articles

• The dopamine side(s) of depression (scientificamerican.com)
• Sensory gating (en.wikipedia.org)
• Voice may not reward autistic kids (abc.net.au)
• The Roles of Dopamine and Serotonin in Decision Making (ncbi.nlm.nih.gov)
• Four genetic markers associated with five psychiatric disorders (clinicalpsychiatrynews.com)