Empathy by any other name

A few days ago I was talking with a social worker about some of the issues I’ve been having, and we touched on my problems with asking people for help. I told him that even when I manage to identify the problem I need help with, I simply don’t know who to call. When I go over the list of people in my head, I can come up with too many reasons why I shouldn’t impose on them, why they have too much going on in their own lives.

And the social worker asked me, “How would it make you feel if someone needed YOUR help, but decided in their head that you’re far too overwhelmed or unemployed or autistic to be able to help them, without even giving you the chance to say yes or no?”

I said that I knew what he was trying to get at. That I was supposed to say that they should ask me, that I would feel hurt if they made assumptions about my ability to help. But I said I wouldn’t feel hurt. If they had decided for themselves that they didn’t want to bother me with something because of what – rightly or wrongly – they thought I was able to handle, that would be a completely valid feeling. And I wouldn’t feel hurt about them coming to such a conclusion, even if it wasn’t necessarily true. Because that would be their feeling, and therefore valid.

He stared at me. Flabbergasted.

I don’t think it had occurred to him that I would genuinely not feel hurt.

What hadn’t occurred to me was that others would be.

There you’ve got it. The limits of my theory of mind. And the limits of his theory of mind too, for that matter. Because that’s my biggest problem with Theory of Mind: pathologising it as something only autistic people struggle with.

© Agsandrew | Dreamstime.com

From what I’ve read, I believe empathy comes in four distinct steps.

  1. Perceiving that someone has a particular feeling
  2. Knowing the cause of their feeling
  3. Understanding why someone has a particular feeling
  4. Formulating an emotionally validating response

The strongest empaths, in my experience, are the ones that skip step 2 and 3. They don’t need to know the cause. They don’t even need to relate it to something they’ve experienced or felt themselves. They perceive an emotion in someone and immediately formulate an emotionally validating response. These are the people that everyone loves having as a friend, because they never even need to explain to them what’s wrong. As a Dutch idiom goes, people who “get enough information from only half a word”.

For the rest of the world, knowing and understanding are both needed to be able to respond in a validating and empathic way. Just look at the numerous occasions where a white person doesn’t understand the lived experience of a black person. Where a man doesn’t understand the lived experience of a woman. Where a straight person doesn’t understand the lived experience of a gay person. More often than not, this inability to match the narrated experience to a similar experience of their own results in miscommunication and hurt feelings, even outright dismissal and animosity.

“What’s wrong?”
“Nothing.”
“I can tell something’s wrong, you’ve been distant all evening.”
“Oh, don’t worry about it. You wouldn’t understand.”
“But I want to help you. Maybe you’ll feel better when you tell me.”
“Well, I’ve been killing demons all day, and none of them have dropped a Magic Lightning Sword. And there’s supposed to be a 100 in 1 chance. I should have had one by now. Paul from the Guild got his after only 15 kills. That isn’t right. I’m sure there’s a bug.”
“You mean you’ve been moping because of a silly game?”
“I told you you wouldn’t understand.”

This is Theory of Mind. This is the third step. Understanding, or perspective taking as it’s usually called, requires being able to put yourself in someone else’s shoes. It’s not perspective taking if it’s completely dependent on you having that same experience, being able to relate because you’ve gone through the same thing.

You can reason it out, compare their frustration over not getting a Magic Lightning Sword to your frustration when that gorgeous pair of shoes you saw is available in every size but your own. But reasoning it out is not something everyone can do all the time, because it depends on recognising the emotion is similar, even though the cause is different. And how can we really be sure that someone’s emotional distress is similar?

I care deeply for others. But my problems with empathy already begin at step 1. I can’t read non-verbal cues accurately, so I usually don’t notice that someone is feeling a certain way. And if by chance I do notice, I’m usually at a loss to identify it. I even manage to be oblivious when someone’s angry with me, unless they come out and say it. Then I move on to step 2, knowing the cause. I need a lot of information in this step. I’ve trained myself to ask a shitload of questions so that I can move on to step 3, understanding. Unfortunately, sometimes people resent having to explain the cause of their feelings. They tell me I know very well what’s causing it, and refuse to tell me anything concrete. They accuse me of pretending to be unaware so I can say I was innocent. This doesn’t help. I need to be told what they’re feeling because non-verbal cues don’t register with me, and I need to be told what caused it because I missed the non-verbal cues when whatever made them upset took place.

Once I have all that information, step 3 is the next hurdle. I depend mostly on reasoning here. I can understand the idea that the social worker mentioned, that someone would be upset because I didn’t ask them for help, but I can’t relate it to any experience of my own. It’s an alien feeling to me. Fortunately, I have a lot of training in trying to understand alien feelings. Most of the people around me experience the world in a way that’s completely different from my own. I’ve learned for example that another person wearing the same dress to a certain event as my friend can be a good thing or a bad thing depending on how close my friend feels to that person. I’ve learned that feelings don’t need to make sense to be valid. I don’t always understand, but because they’re my friend, I will do everything I can to help them feel better.

Unfortunately sometimes step 4 gets in the way here as well. I’ve done all that hard work of perceiving, knowing, and understanding… and then my awkward social skills make me say exactly the wrong thing. Because I don’t always instinctively know why someone feels a certain way, I don’t instinctively understand what will help in processing that feeling either. By trial and error – mostly a lot of error – I’ve learned which responses get the best results, but it’s still not instinctive. I am constantly weighing options in my head, “Is this the time for a hug? Should I just make soothing sounds now or should I make them laugh? Do they want to hear affirmation or should I help put things in perspective for them?”

This is especially hard because I don’t have many examples to draw from. I can observe how non-autistic people show empathy towards other non-autistic people. But it’s only rarely that someone who’s not autistic does that towards me. Because my lived experience is so entirely different from their own. All those problems that I have with perceiving, knowing, understanding and responding? Those are the same problems others have with me. They can’t tell that I’m upset because I have a flat affect. They don’t know what I’m feeling unless I tell them. They don’t understand why I’m feeling that way because they wouldn’t feel that way in similar situations. And they respond in ways that don’t validate my emotions, but instead let me know how different I am for feeling like that in the first place.

Having problems with loud noises?
“Just ignore it.”
Feeling confused and lost because I can’t figure out which household chore to tackle first?
“Just pick one and be done with it.”
Struggling how to make friends?
“Just get out of the house more.”
Crying because life is just so fucking hard?
“It’s hard for everyone.”

Let me tell you something. That’s not empathy.

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When I was just a little girl

It’s taken me a few months to gather my thoughts sufficiently to be able to write about this.

In September 2013 I was at the mental health clinic with my mother, getting interviewed on my childhood behaviours. This part of the adult autism diagnosis refers specifically to the section in the DSM-5 that says:

“Symptoms must be present in the early developmental period (but may not become fully manifest until social demands exceed limited capacities, or may be masked by learned strategies in later life).”

I felt incredibly nervous about this part of the diagnosis.

Mostly because I knew I didn’t exhibit many symptoms in childhood. Sure, I always had hobbies that I was intensely occupied with, and that weren’t very typical of other children my age, but overall I just seemed a shy, studious, slightly naive but happy young girl. My parents were very supportive of me and my interests and never made me socialise with others if I didn’t feel like it. It was perfectly acceptable in our family to spend most of Christmas Day reading the books we had received as presents.

© Grecaud Paul - Fotolia.com

© Grecaud Paul – Fotolia.com

My mother was nervous about the interview too. I noticed she was clutching her hands so hard that her knuckles were turning white. Up until that point, the therapist had addressed most of her questions to my mother, so I’d kept quiet and let my mother do the talking. But she wasn’t doing much talking. So when I saw her hands, I took control.

The questionnaire

Maybe the questionnaire had set us both up for feeling a bit unsettled about this part of the diagnosis. It was obviously meant for the diagnosis of children, with some half-hearted attempts to make it suitable for adults. And by half-hearted, I mean questions like:

As a child [section heading says 0-5 years old], did he look at people (meet their eyes) when they were talking to him?

  • Never or rarely
  • Only with parents
  • Usually did

And at a later age? [emphasis mine]

Some of the questions did indicate that they were meant to cover specific ages, like 0 to 4 years old, 1 to 5 years old, or 4 “and older”, but none of the questions specified HOW MUCH older. Not even adolescence was mentioned specifically.

I had planned to go through the questionnaire together with my mother, to explain things and to give feedback on her recollections. But about halfway through reading through the questions, my mother gave up. She said they were such leading questions that they were making her feel anxious and she couldn’t remember all those things about my childhood anyway. We did spend some time reminiscing about my childhood and even getting out my baby book, so that was fun. But filling out the actual questionnaire wasn’t going to happen with me there.

She brought the filled out questionnaire with her to the interview, so I had about 2 minutes to scan through her answers before the therapist came in. She’d basically answered “my child was normal” to every single question.

As a child, did he feel very afraid or anxious?

  • Normal
  • Yes, about strangers or specific people
  • Yes, about animals, noises, or (mechanical) objects
  • No, showed no fear or sense of danger

Yep, they used the word normal.

The interview

Of course, it’s been a while since the interview, so my recollection is a bit hazy. There were a lot of questions about how I interacted with others. Like, did I have any friends (yes, I did). Did I get invited for birthday parties (my mum’s answer was, “We didn’t do birthday parties”, ha!). Did I come across as bossy or controlling when playing with other kids (my mum ran into my nursery teacher a few days before the interview, and even she remembered how much I enjoyed “playing teacher”. I was in nursery school in 1981). Things like that.

Me taking control of the interview meant that I started answering the questions with how I remembered things. Like playing with other kids but not knowing when it was OK to join in. Constantly feeling puzzled by the behaviour of other kids. A very vivid memory about not understanding when someone’s joking or serious. (Still makes me cringe to remember that: I’d given a presentation in class about windmills, and a classmate asked me how windmills actually worked. I thought he was joking, so I gave an extremely scathing reply. And got reprimanded by the teacher for making the kid look ridiculous, because it was a serious question. Ouch).

My mother started relaxing a bit more when I was the one doing most of the talking, and started adding and elaborating on my recollections as well. It got to the point where it was mostly a conversation between me and her, with the therapist desperately trying to keep us on subject and within the time limit. That was fun.

The diagnosis

Of course, with my mother seeing me as normal and that attitude colouring all of her replies, I wasn’t feeling all too sure about the conclusions the therapist would draw from the interview and the questionnaire. I knew my diagnosis would hinge on autistic traits being present in childhood.

To counteract the “normal”, I got in touch with the therapist the day after and explained a bit about my family. About how most of my family members exhibit the same traits as I have. How within my family, I am indeed our kind of normal. Which, I can tell you, didn’t seem all that normal to others who got introduced to our family. My youngest brother even made a point of warning friends who stayed for sleepovers that they shouldn’t pay attention to anything happening at breakfast, because, in his words, “They all like to have these discussions, you know?”

© Alon Brik | Dreamstime.com

The fact that I grew up in such a family meant that I never had to explain why I’d rather read books than play football. That it was perfectly OK to hate crowds. My parents never told me that it was my own fault for getting bullied because I should try harder to behave in a certain way; they encouraged me to remain true to myself and to take pride in my differences. They never expected me to read between the lines, to understand things instinctively just because “everyone knows how to do that”. My parents provided me with the support I needed to function in an overwhelming world.

My diagnosis took this information into account. Yay!

From the official diagnostic report:

Judging by early childhood, there are very few indications of an autism spectrum disorder, although there are several examples of not understanding social interaction as a child. There are several explanations for the lack of symptoms in childhood, such as the close ties within the family and more family members possibly having undiagnosed autism spectrum disorders. For example, patient indicates that it is very normal in her family to talk in a formal, old-fashioned way (they often talked about scientific subjects and regularly consulted the encyclopedia during discussions).

Even though in the Netherlands the DSM-5 has not yet been adopted, the idea that “symptoms may not become fully manifest until social demands exceed limited capacities, or may be masked by learned strategies in later life” has obviously been accepted. This will hopefully help others get diagnosed. Others who, like me, don’t seem all that autistic until you realise how many supports they have in place.

Timing things

I haven’t had a single job where I haven’t at some point been disciplined for not arriving on time. Usually, the complaint takes the form of “You’re always late!” and that doesn’t mesh with my literal brain, so I’ll argue that I wasn’t late the past three days, or that I’ve only been 15 minutes late once in the last month and this was the reason, or something like that. Which then gives me a reputation for being intransigent and argumentative.

But aside from whether I’m actually “always” late or not, I do have a problem with timing things.

jablonec-stationWhen I have a specific appointment, I suffer from overbuffering. I’ll go, “Right… I’ll need to catch the 10:55 train, better be at the station at 10:50 so I don’t have to run… Hm, need to buy a ticket, never know how long the line’s going to be, better be there at 10:40… It takes me 5 minutes to get to the station… or is it 10 minutes? I’ve never actually timed it, better be on the safe side, leave the house at 10:25… That means I’d better have my coat on and my bag packed at 10:15, otherwise I’ll be rushing all over the place and panicking… OK, I’ll have to get ready at 10:00.” And the end result is usually that I’m at the station by 10:20, 35 minutes early. (Or, in even sadder cases, that I’m so stuck on the idea of leaving the house at 10:25, that I’ll be sitting on the sofa with my coat on for 15 minutes until it’s time to leave). Which is not really a problem, but it is a tad inefficient, and shows that I don’t really have a good grasp of how long things actually take me.

As soon as it’s a recurring appointment, though, I start getting careless. I remember that last time I twiddled my thumbs for 35 minutes, so I’ll just get myself an extra cup of tea and play on the laptop for a bit before leaving. And that’s when the real shit starts happening. Before I know it, it’s actually 10:45, and I have absolutely no chance of still making it to the station on time.

It’s even more complicated when it gets to work. I think in absolutes. The train leaves at 10:55, which is an absolute. One minute late and the train will have left. Even when I’m messing up how long things take, I still have a very clear end goal. With jobs, it’s not that easy. To my immense surprise, I learned last year that a 9:00am start time doesn’t actually mean the goal is to be there at 9. Because we’re dealing with people here, and their perceptions of me. The goal is that I should be seen to be WORKING at 9. So no getting coffee, no starting up my computer, no going through my schedule. I need to be AT WORK. And that doesn’t mean “present at the office”.

A complicating factor is that when I ask about starting times, I often get the answer of “oh, we’re not that particular about times, as long as you get the work done.” That is a lie. (And it has taken me nearly two decades to figure out it’s a lie). People get annoyed when I always get in later than they do, never mind that I’m also always the last to leave (usually by one or two hours). It doesn’t make sense. It’s all about messy human perceptions. It’s not about how much work I do, or how many hours I’m working. It’s only about how it makes people feel. And apparently, me getting in late makes them feel like I don’t really care about making an effort.

So, knowing all this, why is it still so incredibly hard for me to get anywhere on time?

Because I struggle. I struggle with timing, knowing how long things take me. I struggle with executive function, initiating the actions that will get me somewhere on time. I struggle with why it’s important, because to be honest, how it makes others feel is not a paramount motivation for me.

If there is a specific reason why I need to be at the office ahead of time (like manning the phone line that opens at 8:30, or having a website go live at 10:00), I can manage just fine. But simply keeping up appearances? Not logical. No motivation.

And I think the last part might be crucial. Because I’m hardly ever late for appointments with friends (although that’s also because the one-off schedule overbuffering kicks in there). But with people I’m not emotionally invested in? Not really. And maybe that’s why I get grief for being late for work. Not because it’s a rule not to be late, because others get away with being late on occasion, and I never get away with it. But because people can somehow tell that making them happy just by doing something completely illogical is not that important to me.

The problem is made up of so many unrelated but heavily interactive elements, that I have no idea where to start in fixing it. And I’m not even sure I want to fix it. Deep down, I just want to yell at employers to simply let me be. Let me do my job, because I do my job well and I put in all the hours and I always get things done on time. So why make my life miserable by focusing only on what time I get in? Is that really the most important thing about my job? Get a f***ing grip!

But this is the way people feel. Will I try changing them, or will I try to change myself?

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.

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.