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.

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Point, counterpoint, actual point

Most of us know the feeling. That voice inside our heads telling us we’re wrong. Lazy. Stupid. Not trying hard enough. Hurting others. Selfish. Overly sensitive.

This is not an autistic thing. I’m sure everyone feels that way on occasion.

And we don’t deserve to.

The Point, Counterpoint, Actual Point project is a collaborative blog series asking us to re-examine the ways in which we believe we’re not good enough, to reduce self-doubt and promote acceptance of ourselves. For some background, you can read the post that kicked off the project on the blog notesoncrazy.com.

© Veronica Foale - Flickr.com

© Veronica Foale – Flickr.com

Sounds good, don’t you think? And you can participate. All you need to do is write something in the following format.

POINT: A thing you believe about yourself or want to believe about yourself if you can be very honest.

COUNTERPOINT: All the self-talk and messages from other people that lead you to doubt yourself.

ACTUAL POINT: The evidence you have for your original belief. It can be internal or external, conclusive or just suggestive. What matters is that it lets you trust yourself.

CONCLUSION: Your original point, “and that’s ok.”

To get it published, choose one of the following options:

  1. Submit your Point, Counterpoint, Actual point on the project website theactualpointproject.com.
  2. Email it to notesoncrazy@gmail.com and include how you would like to be credited: anonymous, with a pseudonym and/or link to your blog, or with your name.
  3. Post it on your own blog, with a link to the project.
  4. Post it on Facebook or Tumblr or Twitter (well, 140 characters would make you the master of succinctness, but go ahead!). Or wherever.

Your choice. Because this isn’t about the project. It’s about you.

It’s time to let go of those voices inside our heads.

Contributions so far:

Or browse all submissions to the Point, Counterpoint, Actual Point project.

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.

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

© 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.

Autistic History Month: the puzzle piece

This article has been rewritten thanks to the feedback in the comments by Quarries and Corridors and Kate Gladstone.

When I first heard about November being Autistic History Month, my mind went blank. I was still struggling to make sense of my personal history in the light of my autism diagnosis. I didn’t know anything about the history of autism in general. Or important historical figures. Or the history of the neurodiversity movement.

But as Unstrangemind posted so eloquently on her blog: “Our own people do not know their history.”

So when I came across some interesting tidbits and factoids in my utterly random browsing today, I wanted to share them with you. On this last day of Autistic History Month 2013. Because we need to know our own history.

The puzzle piece.

First impressions.

When I first came across the puzzle piece symbol a couple of years ago, before I even started thinking of myself as autistic, I thought it was fun. Because I like doing jigsaw puzzles. And it had LOTS OF COLOURS! I’m helpless when it comes to colours. But the puzzle ribbon used by the Autism Society didn’t have as many colours, so it wasn’t as much fun. And Autism Speaks puzzle piece was even worse because it was all monochrome and boring and all by itself.

Second thoughts.

I started thinking about what the puzzle piece was supposed to mean. And I started applying it to myself. Am I a puzzle to be solved, a mystery to other people? Am I that piece of the puzzle that just won’t fit in properly no matter how hard you try? That’s not how I want to think about myself. And I don’t want other people to think that if they’d just cut a little bit off my corners, I’d fit right in. You know, that last bit of sky that you KNOW can’t go anywhere else. But it won’t fit. And you don’t feel like taking out all the sky pieces and starting over. So you just hammer it in and declare the puzzle solved.

Bugger that. I’m not a puzzle.

So imagine my surprise when I discovered that neither Autism Speaks or the Autism Society invented the puzzle piece symbolism.

It’s far older than that.

In 1962, a small group of parents in the UK who were frustrated at the lack of understanding and help available for them and their children started a group that would in time become The National Autistic Society and, as far as I can tell, the first autistic organisation in the world.

They’re the ones who started using the puzzle piece. It was designed by Gerald Gasson, a parent member of the Executive Committee.

The minutes of the Executive Meeting of 14 February 1963 read: ‘The Committee decided that the symbol of the Society should be the puzzle as this did not look like any other commercial or charitable one as far as they could discover’.

From Perspectives on a puzzle piece

However, it wasn’t just a puzzle piece. It was a puzzle piece with a weeping child inside of it.

The puzzle piece is so effective because it tells us something about autism: our children are handicapped by a puzzling condition; this isolates them from normal human contact and therefore they do not ‘fit in’. The suggestion of a weeping child is a reminder that autistic people do indeed suffer from their handicap.

From a presentation by Helen Green Allison given in 1987

They actually changed their name from The Society for Autistic Children to The National Autistic Society in 1982, recognising that autism is a disorder that affects adults as well, something that several well-known organisations still struggle with today. But the puzzle piece with the weeping child remained in place until as late as 2002, around the same time they started making an effort to include autistic people on their board.

Their current logo symbolises inclusion and support, and a lot of what they do speaks of focusing on acquiring supports and services for autistic people and looking at the social model of disability instead of the recovery/cure rhetoric that a lot of other organisations still engage in. But it took a lot of pressure and criticism from autistic activists before they got to that spot, and it’s only been a relatively recent change.

I’m going to be a bit stubborn, though. Despite what Helen Allison wrote in 1987, the original meeting notes only mentioned the puzzle piece as being different. The notions of “not fitting in” or “solving the puzzle” were tacked on at a later stage.

Just different. As we are all different. No more. No less.

I think every person should decide for themselves whether they want to take back the puzzle symbolism, or refuse it because it’s been tainted by organisations that do not speak for us. We could let the puzzle piece divide the community, or we could accept that it’s still a recognisable symbol to many people, or we could try and find something that appeals to all of us. But in the end, it’s up to you.

But I do like knowing a little bit more about the history of the puzzle piece symbol and its origins.

Batteries and procrastination

Do you want to know what having executive function looks like?

Red bicycle light

It’s getting ready to go to the grocery store (on my bicycle, it’s a local store) and realising it’s dark out. It’s making the connection between “it’s dark out” and bicycle lights. It’s remembering that the last time I rode my bike, the batteries in the red light on the back were nearly dead. It’s walking back into the living room to get the spare batteries from the big fruit bowl, and putting them in the bicycle light. It’s putting the dead batteries in my coat pocket. It’s remembering the dead batteries are in my coat pocket as I enter the grocery store. It’s walking to the recycling bin and dropping the batteries in.

It’s not crisscrossing the grocery store trying to think of everything I need to buy, because I didn’t bother making a list. A little executive function fail there. But let’s go on.

It’s heading towards the checkout lane with a basket full of food, and stopping to pick up extra batteries. It’s putting the new batteries in the big fruit bowl when I get home. It’s throwing the old empty packaging in the bin.

It’s amazing.

All my life, I wondered why things that other people claimed were so simple, for me were so incredibly hard to do. I thought I was making a fuss over nothing. I thought I was being lazy. I thought I was procrastinating. But this little scenario? Can I honestly say that NOT doing all of this would have been procrastination? Laziness? Making a fuss over nothing?

Seriously. I can think of far more interesting things to procrastinate on. I can think of far more efficient ways to be gloriously lazy.

This little scenario. Most people probably wouldn’t understand why I’m even mentioning it. Because they don’t even think about it. It’s normal for them. It’s how they live their lives. But me? If you had told me a month ago that I’d be capable of doing this, I would have laughed at you. I had spent 37 years trying to learn how to do this, and I knew I’d failed. This was not something I was capable of.

And now I know why.

Executive function. And medication has fixed it.

White bicycle light

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.