Talents

There are so many things I can do, and do well at that.

A picture of freehand nail art, done on my own nails using nail polishes, showing a drawing of a small gnome with a bright red hat, surrounded by berries and flowers, on a green to brown gradient background

I’ve gotten a lot of compliments on my nail art, for starters, and a lot of people have suggested I could do this professionally. I don’t think I’m at the level yet that I’ve seen from professional nail techs, but it’s a special interest and I’d probably get there within a year.

I’m a good cook. Not at restaurant level (mostly because my presentation sucks), but if someone asked me to cater an event for 30 people, I’d nail that. I’m really good with taste and texture and what foods work well together. And I rock beer pairings.

I’m a damn good writer. Mostly blog posts, sometimes essays. Even release notes and user manuals. I’m detailed and structured and I have an awesome command of language. I know how to grab someone’s attention.

I’m a good carpenter. I simply *know* how things fit together. It’s called carpenter’s eye in Dutch, just seeing how something might be a millimetre off level without measuring. And I can think up creative solutions when things don’t work out the way you planned.

I can do both front-end and back-end web development. I taught myself. It’s a special interest (another one). And I know I could be even better if I really dedicated myself to a single thing. As it is now, I’m more of a troubleshooter, finding bugs in existing code. I can build simple websites by myself, though. And I know how to work with databases, web servers, and domain name configuration. There is nothing that I can’t figure out with a little bit of time and some Google Fu.

I have an eye for fashion and styling. I know what looks good on people, what silhouettes and colours enhance their natural beauty. I see beauty in everyone, which helps a lot. And I love colour theory. Another special interest.

I’m a cat whisperer. I could do fostering or shelter work. Nothing about cat behaviour fazes me, and I can usually fix it. Mia was a bad case, peeing everywhere out of stress and separation anxiety, but she is a healthy and lovely cat these days. Guido chose me at the cat shelter by ripping my arm open from elbow to wrist. Sweet Guido. ❤

I’m a good photographer, and with better equipment I could take even better photos. The stuff I do now is just by using my camera phone and a little bit of editing. I have an eye for detail, lighting, and framing.


I could probably think of a dozen other talents or occupations I’d excel at, but the fact is that none of it will work. For every single thing I’m good at, the biggest stumbling block will be that I’m horrible at acquiring new clients, or not offending my managers with my bluntness, or performing those little social rituals that make people trust you and want to do business with you. My talents don’t count.

And the effort of performing at that social level, even at a basic level that people expect from everyone, not even succeeding at that, leaves me so exhausted that I call in sick far more often than other people, thereby guaranteeing even more marks against me. I can’t stop doing it because 40+ years of experience has taught me that if I stop paying attention to the unwritten social rules, stop trying to fit myself into that mold, the results are even more disastrous. So I keep doing it. To survive.

And I still end up unemployed and unappreciated.

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.

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.

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.

Autistics Speaking Day 2013: Fear

I want to speak to you about fear.

I am autistic. And I am afraid.

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

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

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

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

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

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

Fear of being told I have no feelings.

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

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

I am speaking of fear.

And you?

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

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

Detail oriented

While cleaning up a pile of paperwork (yay executive function! yay me!) I came across a time sheet from my previous job.

The close-up reads as follows (because I know you’ll want to know):

11:59 planning
12:00 smoke break/lunch
12:31 put phone call through
12:34 create new email address
12:37 put phone call through
12:38 figure out problem with content management system of client
12:42 create CWP [planning app] for client
12:47 add new image to website for client
13:00 figure out problem with CAV [car app] for client
13:13 put phone call through
13:18 put appointments in calendar
13:23 smoke break
13:29 discuss CAV [car app] with coworker
13:38 put phone call through
13:40 create Google Analytics for client
14:01 help coworker
14:04 help coworker

The reason the entries are struck through is because at the end of the day I added up the time spent on particular tasks, in order to enter them into the administrative system. Because that was counted in 15 minute increments. And as you can see from the detailed view, I logged everything minute by minute.

What do you mean, detail oriented? My employer wanted to know how much time I spent on separate tasks and on different clients. So I showed them. Every employer would love to have someone like me.

Hang on, I’m different

This article is part of the T-21 Blog Hop. Although the name is reflective of Down syndrome, this hop is open to all blogs in the disability and special needs communities. Self-advocates, allies, parent advocates, all are welcome. Posts should be about advocacy or activism.

Join Down Wit Dat on the 21st of Every Month!Click here to enter your link and view all the participating blogs.

In my entire road towards an autism diagnosis, it seemed a bit strange that I’d only talked to autistic bloggers, through blog posts and comments and email. On top of that, the majority of those bloggers came from the US, the UK, and Australia. Aspie Story and Blogging Astrid were the only fellow Dutchies I’d found so far. I still hadn’t met a single autistic adult in person.

So when my psychiatrist offered me the chance to participate in a series of group sessions for autistic adults to learn more about autism, I thought that would be a pretty good idea. Even though the session subjects seemed to cover a lot of ground that I was already familiar with, I was looking forward to meeting other Dutch people on the spectrum.

The group consisted of me and three other women. I won’t go into details to respect their privacy, but what really stood out for me was the reaction when I told the group about my own experiences in coming to terms with autism, about wanting to be autistic because it was the only thing that felt like all my experiences finally made some sense. About redirecting my energy and efforts towards things that would help me cope, instead of things that would make me appear normal. Allowing myself to be more visibly autistic.

At those last words, the entire group gasped in shock.

I’m not joking. I was the only one there who thought it wasn’t actually all that bad to be stimming in public.

Throughout the session, that impression was reinforced over and over. People were asking “If I don’t do things like that, then maybe I’m not actually autistic?” Looking for things that would prove they weren’t doomed for the rest of their lives. Looking for hope that maybe some day they could be fixed and be normal. Only seeing the negatives. I felt like I was the only one emphasising the good bits, the strengths, the FUN aspect of autism, the connection with other autistic adults, the recognition and acceptance that comes from finally belonging somewhere.

It was heartbreaking. It was exhausting.

So naturally, I decided to attend another networking group for autistic adults in the evening.

Yeah. That bit where I talked about learning how to redirect my energy and efforts to cope? I was lying. I’m used to a lifetime of pushing myself to do things. To push through the exhaustion. So of course it made sense to go to the evening gathering as well. Because autistic people, right? I can be myself there, right?

Wrong.

There was a pub quiz. People told me, like they always do at pub quizzes, “How do you know all that stuff?”, with the that-is-SO-not-normal look in their eyes that I recognise so well. I had my Tangle with me and people asked why I was constantly fiddling with it. People made remarks about how nice it was that this evening was just for high-functioning people and then looked at me and noticed me rocking. Unapologetically. Smiling. And I could see them judge me. Rocking is for Rain Man types.

In a gathering of autistic people who all tried to outdo each other in how high functioning they were, I talked about going non-verbal, and how emotions often feel overwhelming, and how hard it is to take good care of myself by eating on time and keeping my house clean. I made them laugh and nod in recognition. I talked about the energy and frustration it costs to pass for non-autistic, and why. I talked about not passing even when I try so hard. I talked about all the things that I read on all the blogs I’d been reading since the start of my diagnosis.

And in the middle of a discussion about high functioning and low functioning labels, and how maybe we should look at what a person is actually capable of, one of them said to me that maybe I needed a time-out to calm down, because I was rocking back and forth so much. And when I said I was just focusing on the conversation, and not feeling anxious at all, he didn’t believe me.

I still can’t truly come to terms with the fact that this happened. It happened. In a group of autistic people. It was just so entirely different from the autistic community I had experienced so far. The online blogging community. The community I’d taken to be… well, NORMAL. With their acceptance. The explanations that made so much sense. The empathy.

What I’d taken to be normal for being among our own.

In reality, the blogging community – that I accidentally stumbled upon when researching ways to get diagnosed as an adult  – was completely different from the real life community that I’d hoped to find. And it made me realise. My ENTIRE perception of autism as something that is intrinsically part of me, with the good and the bad, the meltdowns and the laughter, has been shaped by autistic adults who write from a place of acceptance.

What a difference that makes.

Acceptance has made me different.

Why I’m so awesome at the work I do

Does that sound arrogant? Maybe. I live in a culture where being honest about your accomplishments is seen as bragging. And bragging is a deadly sin in the country that admires their royal family for “being so ordinary”.

Thanks to my love for everything English, I have been able to adopt a middle way: being slightly eccentric while also pretending that this is just a harmless, funny thing and not my “normal” behaviour; being honest and direct while using sentence constructions that are similar to English ones with all their woulds and mights; and pretending it’s not a big deal while being completely upfront about my strengths.

  1. I’m an awesome writer
    Yeah, I know. You’re reading this blog so you probably think “Why mention that?”. But it’s worth mentioning. I have done copy writing for websites, rewriting long-winded marketing copy to fit short attention spans on the internet, highlighting strong points and paying attention to search engine stuff. (Which is one of the reasons I never use a link like here). In nearly every job I’ve had, I ended up writing manuals for stuff that people kept asking me about. Because I have a knack for describing things in clear, uncluttered language. I have also taught coworkers how to write better emails, paying attention to what question they’re replying to, acknowledging the other person’s initial issue and only then moving on to describing the solution. (And also making sure that the solution sounds like hard work so we can charge more). Not just telling them “it’s fixed, kthxbai“. And let’s not forget CHECK YOUR SPELLING AND GRAMMAR. I can spot a typo from a mile off. And I firmly believe that if you have a lot of spelling mistakes in an email to a customer, you’re signalling to them that you think they’re not worth the extra time to do a careful check of your writing before hitting “Send”.
  2. I’m good with customers
    You wouldn’t expect that from someone with persistent deficits in social communication and social interaction across multiple contexts, would you? But I am really good with customers. In both email and phone contact, I mirror their words in several ways, so they feel heard and understood (and also to make sure that I’ve actually understood them). I use clear and non-ambiguous language and don’t make promises I can’t keep. And I also follow through on the promises that I can keep. I’m not as good in face-to-face contact, but if I’m in a meeting as the technical expert, I can concentrate on just adding in the specifics and details, which gives me a way to avoid all the body language and emotional attachment. And the lack of emotional attachment is also why I’m one of the best people to deal with angry customers. I’m calm and professional. I know it’s not about me. The customer just wants to get taken seriously. Doesn’t everyone get angry when they think people aren’t listening? I’ve only had someone hang up on me ONCE, and he dropped by the office the next day to bring cake.

    © Poznyakov – Dreamstime.com

  3. I know something about everything
    No, seriously. I might not be the person who knows the most about a single subject, I might not be a CSS guru or a PHP wizard or a kick-ass sysadmin, but I know about all those things. Show me something I haven’t worked with yet, and I’ll get the hang of its general function and purpose within a week. And then I’ll write a manual about it. And be able to explain it to customers. And create realistic expectations of how much work it will be to implement something. Because I get the technical stuff. I often call myself a translator between customers and programmers, because I have the knowledge but not the baggage. I can think outside the box. And then explain the box to others. But my strength is not just knowing a lot of stuff, I also go in there and get my hands dirty. Image not loading? I’ll have a quick look and fix it. No probs.
  4. I fix things
    I’m a typical first responder. Sometimes my fixes won’t be pretty, but they will be fast and efficient. Because I have incredible focus and pattern recognition. I can see where things are going wrong, I can find those bugs, and then I don’t spend ages trying to figure out why the bug is there in the first place, but I simply think up a solution. (And put a comment in the code explaining the ugliness, because I’m professional like that). I see the nail. Sometimes my quick fixes are only a temporary solution, in which case I write up a short description of the problem and what I’ve done so far, and then send it on to a programmer. This saves the customer from having to explain the problem twice, and it saves the programmer from having to spend time looking for the problem, and listening to non-technical stuff.
  5. I’m detail oriented
    Yeah, people often think of details in relation to “getting bogged down in details”. But it is a strength, and an awesome one at that. It means I don’t overlook a step, no matter how small it is. I don’t fix something and then forget to send an email about it. I remember exactly how much time I spent on the phone so I can do my hours registration or invoicing. I write amazing manuals (there they are again, but seriously, it’s a skill) because I don’t skip a SINGLE step. I describe each click and command. (Which is not something most people do. Like that one time a coworker kept telling me to set up a VPN connection, and I kept going to the Windows Configuration screen and click “Set up a VPN connection” – sounds logical right? – but what he forgot to tell me was that I was supposed to do that by right-clicking a tray icon. Took us HALF AN HOUR before we’d solved that little communication problem. He wasn’t very detail oriented).
  6. I really really enjoy my work
    Dedicated is the word I’d use. Because obsession sounds so… autistic. But in fact, my obsessiveness is my main autistic trait. When I’m working, I’m in the zone. I’m utterly focused. I love writing the perfect email, making a customer happy by simply listening to them on the phone, implementing the perfect fix, making that light bulb go off in other people’s heads. I love beautiful bits of coding and well-structured databases. I love not being afraid of command lines and root privileges (although I did accidentally kill an entire web server once by executing a CHMOD command in the wrong directory. But that’s another strength: I always take responsibility for my mistakes).

    And most of all, I love being a nerd girl in a nerd world.

> sudo make me a sandwich – xkcd.com

Stimmy songs

So there’s two things. First of all, I was at this autistic people networking event tonight which is all kinds of awesome but also kind of overloading. So after about two hours I went outside for a bit and stimmed my heart out to these songs. And I’m sharing because I just think they’re brilliant and who knows, someone else might like them too.



And yeah I mean I stimmed my heart out with all the elbow flapping and shoulder twitching and head nodding that implies. Fuck whatever anyone thought about it. IT FELT SO GOOD.

And that brings me to the second thing. Work in progress, but Ben and Nattily have helped me put a first version of The Stimming Checklist online. You can find it at http://what-is-stimming.org. We will be adding new features soon but for now you can at least see an overview of the ONE THOUSAND TWO HUNDRED THIRTEEN stims that have been submitted so far. Stay tuned!

Job interview advice – Situation

This article was first published with permission on Invisible Autistic.

In my previous post, I discussed personal hygiene and what to do with accessories, like shoes and jewellery. Things that may seem superficial but have the ability to get you rejected for a job before you even open your mouth.

This week we’re going to enter the danger zone: what to do when you arrive at the interview.

Strong currents sign

Arriving on time

“On time” is a terrible phrase when you have a literal mind. If your interview starts at 10:00am, then being “on time” does not mean walking in the door at 10:00am sharp. When planning your journey to the place where you’re having your interview, make sure to be there at least 15 to 20 minutes early. That’s excluding any extra time you may need to navigate traffic, deal with public transport, or making sure you’re not getting lost (tip: I always print out a map with street names of the surrounding area. Having a look around on Google Streetview beforehand is also a good way to familiarise yourself with the area).

The 15 to 20 minutes early is meant as your own private prep time. I’ll explain what you can use that prep time for in a bit.

Arriving too early

If you arrive much earlier than 15 minutes, walk around the neighbourhood for a bit, make note of any interesting features of the area so you’ll have something to use in smalltalk if needed. If the weather isn’t suitable for walking around, you can also go up to the receptionist or office manager (if they have someone like that) and say the following: “I’m sorry, I have an appointment with Ms. Jones and Mr. Smith at 10:00am, but I seem to have arrived a bit too early. Can you please let them know that I’ve arrived, but that I don’t mind waiting somewhere until the start time of the interview?” You can even say that you have brought something to read in the meantime, or things like that. It shows that you are self-sufficient but also take other people’s priorities into account.

Arriving too late

If you’re late: DON’T PANIC! If you’re not at the location 15 minutes before the start of the interview, call the company. This is really important (and also why those 15 minutes are so important to focus on). Tell them that you’re running late and that you’re really sorry. DON’T GIVE REASONS, except when they ask you why. To neurotypical people, reasons sound like excuses, even when you only want to explain. Just say “I’m so sorry, but I’m running late and probably won’t arrive until 10:15am. I know you have other responsibilities as well, so do you want to reschedule the interview to another date?” If you can’t give an estimate (because you’re thoroughly lost, again something you don’t want to say because it will make you seem helpless), simply say that you’re running late and don’t know what time you will arrive, so it’s probably better to reschedule.

Where’s the receptionist?

One of the things I really hate is when I arrive at a company and there’s no clear indication of who to approach. (Actually, I really hated that in my previous job as well, where we didn’t have a receptionist so the managers stationed my desk near the door. Just because I’m the only woman in the company doesn’t mean I want to drop my tasks as HEAD OF MY DEPARTMENT to welcome guests and sign for packages, thanks. Sorry for the digression). If there’s no receptionist or office manager in sight, walk up to the first person you see or knock on the nearest office door, and ask, “I’m sorry, I’m looking for your office manager.” Even if they don’t have one, this question will get you to someone who can guide you and help you settle in. Don’t ask for the person you’re having the interview with. You don’t want to meet them until you’re ready! Still, in very small companies, chances are everyone knows that someone’s coming for an interview, so they might end up getting the person who’s going to interview you. The rule here is to not assume anything, but ASK the next person you see what their name and their job is.

Prep time

Now, if all has went well, you’ve got 15 to 20 minutes to kill until the start of your interview. Use this time to go to the bathroom, make sure your bladder is empty, your palms aren’t too sweaty (use anti-perspirant to make them less so), and your clothing isn’t torn or stained. You can also use this time to swap your shoes in the bathroom if you’re not wearing dress shoes.

But the most valuable use of personal prep time is to make yourself feel confident.

Sound too good to be true? OK, here’s some official research showing that adopting a “power pose” before your interview will make you feel less anxious and more in control. Literally. Your intentional poses can affect testosterone and cortisol levels in the brain (start watching at 10:20 for some examples of power poses). You can do this in the bathroom, or you can adopt some discrete power poses while sitting and waiting. Doing these will also prevent you from slouching too much, something that a receptionist or office manager will mention to others as you appearing uninterested before the interview.

Small talk

The thing so many of us dread. Because a lot of people find it hard, not just autistic people, you can find a lot of resources and information on how to do small talk, like this article on WikiHow or this article with tips from Bernardo Carducci, director of the Shyness Research Institute (YES REALLY), but I want to highlight some examples of acceptable small talk in an interview situation. Be prepared to do small talk with the interviewer from the moment you shake hands until a few minutes after you’ve sat down!

Good conversation topics are:

  • the weather (corny but effective, especially if you relate it to your journey getting to the location, which can lead to you asking what kind of weather is the interviewer’s favourite and do they choose their holidays based on the weather)
  • the city the company is located in (do some research on things that make this city interesting if you’re not familiar with it, or mention how long you’ve lived there, which can lead to you asking where the interviewer lives and why they like living there)
  • some features of the exact area or building the company or office is located in (even if it’s an industrial park, say something about the amount of greenery, or the architecture of the building, or ask if there’s any good places to eat, which can lead to you asking what types of food the interviewer likes)
  • the interviewer’s career – this is a good one since it’s far easier to segue into the actual interview from here, and people love talking about themselves! Ask them how they ended up in their current position, what college they attended, what they love about their work. Do some research by seeing if they have a LinkedIn profile or other online presence. Google is your friend. But don’t mention that you already know the things they’re telling you because you looked it up! Let them do most of the talking.

In my next guest post, I will focus on the actual interview and what to say and do to make a good impression.

People giving high marks

Asking for help

I curled up into a foetal position in bed, where I had been reading a chapter in Business for Aspies: 42 Best Practices for Using Asperger Syndrome Traits at Work Successfully by Ashley Stanford. On a side note, why do subtitles always need to be so incredibly long and cumbersome? Anyway. Here I was, curled up, tears running down my face. Not because something had reminded me of work, which you would expect from a book with that long cumbersome title.

No. The author had written about asking for help.

Her example was a young single mother with a full time job who was having a particular bad day. Overload. The thing she ended up getting stuck on was having to clean two plates to be able to give her daughter her dinner. And. She. Just. Couldn’t. Her brain simply stopped. Meltdown.

The only thing she could think of to do in a meltdown was to grab her “need help” list. First item, call parents. Say “Dishes”. Mother says string of words. No verbal recognition. Move on to second item, go to neighbour. Say “Dishes”. Neighbour can read between the lines. Comes home with her. Does dishes. Serves dinner.

And I cried. And I got so upset that I had to leave my safe space, my bedroom, and get dressed and come downstairs. Because my bedroom no longer felt safe. Because that’s where I realised.

I don’t have a “need help” list.

© Yong Hian Lim - Dreamstime.com

© Yong Hian Lim – Dreamstime.com


This is what goes on in my mind when I hit my brick wall.

  1. I should be able to do this myself.
  2. I will look like an idiot for needing help with this thing that I should be able to do myself.
  3. If I call my parents, they’ll worry about me. Because I’m 36 and I should be able to do this myself.
  4. My parents are over 60 and they live 30km away and I can’t ask them to come all the way here to help me with something I should be able to do myself.
  5. My youngest brother lives 30km away and he has his own young family and I know he often feels overloaded dealing with his own stuff. I should be helping him, not asking him to help me.
  6. My younger brother lives 70km away and doesn’t have a car. I can’t honestly ask him to help me with something this small and that I should be able to do myself.
  7. My best friend lives in London. I’m not even going to calculate how far away that is. And she’s busy with work and getting her law degree and doesn’t spend much time online these days, so I can’t whine to her about how difficult this thing is that I should be able to do myself.
  8. My ex works close to where I live. I can ask him, but he enjoys it when I need help because that makes me dependent on him and that might mean I want to get back together. And I’m afraid he will make jokes about sleeping with him as a thank you, and I never know if it’s just a joke or am I actually expected to sleep with him.
  9. I have another friend close to where I live. I can ask him, but his wife hates me because she thinks I flirt too much even when I’m not aware of doing it. And I’m afraid he will make jokes about sleeping with him as a thank you, and I never know if it’s just a joke or am I actually expected to sleep with him.
  10. Another good friend lives 60km away and doesn’t have a car. He would help me with this thing. But he never answers his phone or email. And besides, I can’t honestly ask him to travel all this way to help me with something this small and that I should be able to do myself.
  11. I don’t know anyone else close by.
  12. People will know I’m not the strong person they always say I am if I ask for help.
  13. I should be able to do this myself.

The stuff about being seen as not strong, or as a helpless idiot, are on that list because it wouldn’t be accurate to deny that they’re a part of the problem. But they are far less important than the fact that I simply don’t know WHO to ask. I know there are people willing to help me, but the practical obstacles to them actually getting here and helping me are HUGE.

And I don’t feel I’m worth all that effort. Other people’s problems always seem bigger than mine. What’s not being able to do my dishes compared to not being able to spend enough time with your children, or not having the money to jump on the train at a moment’s notice, or feeling exhausted from doing a full time job and getting a degree at the same time? I simply can’t feel that sense of entitlement. Other people’s problems should have priority to them.

But when I do manage to overcome all those objections in my own head and reach out and tell people I’m not coping, the results aren’t always favourable either.

An example of that happened recently.

I’d started a new job at the same time as I started the diagnosis process for autism. I soon got overwhelmed. Not only was the diagnosis draining my resources, but the job was something I’d never done before and I soon realised I didn’t have the knowledge to perform it accurately. After two and a half months, I crashed. I told my employer I had a burnout and asked for sick leave. I also asked him to get me in touch with work health services (this is a legal requirement in the Netherlands so wouldn’t be an additional burden for my employer) to help me get back to work as quickly as possible. I made an appointment with my GP and I called the clinic where I was doing my diagnosis to say I was having a crisis.

My employer asked me if I was OK with signing an agreement that I was not suitable for the job (which would qualify me for unemployment), and when I agreed he didn’t log my sick leave and didn’t get work health services involved.

My GP said that because of the diagnostic process, she thought I’d be better off asking the clinic for help because they had more experience with that sort of thing.

And the clinic said they couldn’t help me until I was officially diagnosed.

I was in crisis. I was losing my job and completely unable to function. I was desperate and asking over and over if there was anything anyone could do to help me get through this and start working again. And they all said I was on my own.

© Eladora - Dreamstime.com

© Eladora – Dreamstime.com

It’s just an example, but this sort of thing happens too often for me to be able to write it off as a fluke. Or as just bad luck. Or as people being stupid and inattentive.

No. This has to be me. This has to be the way in which I ask for help. It has to be the words I’m not using, the emotions I’m not showing, the way in which I am wired SO DIFFERENTLY from others that even professionals don’t recognise my despair.

Does that mean it’s my own fault for not getting the help I need? NO. MOST EMPHATICALLY NO. I can’t help being this way. Other people can’t help having their own preconceptions about what “asking for help” is supposed to look like. It’s nobody’s fault that I don’t match those preconceptions.

Does that suck? YES. MOST EMPHATICALLY YES. But I don’t have the power to change the world in one fell swoop. I will have to start small. Small changes. Creating awareness.

Does that mean I need to tailor my needs to fit what people expect? To make my needs fit a predictable pattern? NO. MOST EMPHATICALLY NO. But I will have to take responsibility for my own needs. Those needs are mine. I need them met. I will just have to get more creative in getting them met by others.

And the crying? That hasn’t changed. I need to forgive myself for crying about the fact that I have absolutely no idea how to make a list of people I can call when I need help. It’s OK to feel sad about that. Maybe I will never have a list. But I need to stop feeling like a failure for not even knowing who to call.

I’m me

Just a quickie.

I had my second diagnostic test today.

The therapist said she saw no need for the third appointment because those tests wouldn’t add any useful additional information. She said she only ordered those tests in case things weren’t all that clear cut.

And that I had obvious impairments.

I’ll get the official diagnosis on October 14th.

I have trouble coming to terms with the fact that I can stop fighting now. I no longer have a goal. I don’t know how to go on from here.

I’ve reached my goal. I’m autistic.

im-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.

Pig-tailed macaque at Khao Yai National Park

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

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.

Strong currents sign

Job interview advice – Clothes

This article was first published with permission on Invisible Autistic.

For my first post on job interviews, I would like to tackle something that seems straightforward but actually has a lot of hidden social implications: what to wear to an interview.

There’s a lot of advice on the internet, but I always ended up feeling very frustrated because none of the articles would explain what I needed to wear to this particular interview. And their generalisations sort of seemed to hint at things that I was clueless about.

So I simply muddled along, trying to find what worked. And now, after countless job interviews (literally. I can’t count them anymore. I’ve had a lot) I’d like to share with you what I’ve learned. Autistic style!

Casual Friday?

First of all, there are certain levels of informality / formality that are implied in the clothes you wear. Casual and business attire simply doesn’t cover all the options. So I’ve made a little chart.

Level Men Women
1 Naked Naked
2 Underwear Underwear
3 Swimsuit Swimsuit
4 Shorts Shorts and tank top
5 T-shirt and jeans T-shirt and jeans
6 Shirt and jeans Blouse/top and jeans
7 Jacket and jeans Jacket and slacks/skirt
8 Suit without tie Trouser suit
9 Suit with tie Skirt suit
10 Tuxedo Gala dress

You’ll notice that it’s mostly the same for men and women, although men can get away with jeans for a bit longer and women have a few more styles to choose from. I’ll give you a few examples.

The level 9 guy is wearing the same suit as the level 8 guy, just with the addition of a tie. I thought it would be interesting to see the difference in close up.

A few things to keep in mind: it’s never ok to wear shorts, cut-offs, short skirts, tank tops, or crop tops to a job interview, no matter what the position. Well, unless you’re applying for a job serving drinks at the beach, maybe. But even then it’s not a bad idea to at least keep your thighs covered and most of your chest (a shirt can be open to about armpit level). And always wear something with sleeves. This goes for men as well as women.

Trick the company

For most interviews generally, you’ll want to be aiming for about a level 7-9. A lot depends on the company where you’re applying for a job. But don’t worry! There is actually a magic trick that hardly anybody tells you about.

You can simply ask the person you’re doing the interview what you should wear.

Not literally, of course. I’ll give you two scenarios. You can choose whichever one you feel comfortable with. Phone is quicker but scarier because there’s more interaction needed. Make sure to keep a pen and paper handy so you can make notes!

Phone

“Hi, this is Karen, I’m calling to say that I’m really looking forward to our interview on Monday. I’m doing a bit of prep work on the company and I was wondering if you could tell me what most people wear around the office.”
[Answer]
“Oh, that sounds fun / practical / very professional*. Is that for customer facing / non-customer facing positions** or just in general?”
[Answer]
“Thank you, that gives me a lot of valuable information about your company! Well, thanks for your time and if you have any questions for me, you can always reach me through e-mail or phone. See you on Monday!”

* Choose which of the three works best. Fun is shorts and flip flops. Professional is suits. Practical is everything in between. Yes, this will require some improvisation on your part.
** Choose which of the two YOU are applying for.

E-mail

“Hi,
Thank you again for scheduling an interview with me next Monday. In preparing for the interview it would help me immensely to get a copy of your company’s dress code, or a general idea of what other employees in a customer facing / non-customer facing position*** usually wear from day to day. Could you let me know before Friday? Thank you and I look forward to discussing other aspects of the job with you on Monday!”

*** Choose which of the two YOU are applying for.

The beauty of this setup is that you are being honest about what you need (instructions on what to wear), and they get the feeling that you are genuinely interested and want to get to know the people as well as the company. They LIKE it when you ask them what you should wear! Isn’t it awesome?

Uncertainty and colours

If you’re not sure where on the scale their answer falls (especially in IT this happens a lot – IT people don’t pay that much attention to clothes so they can’t or won’t give you a straight answer), err on the side of caution and overdress a little bit, or choose a similar outfit as what they describe other people wearing but with more conservative colours. For levels 5, 6 and 7 conservative basically means no patterns or prints, only solid colours with a preference for muted blues, reds, and greens. Purple is also an option for women. You can do blacks and greys but in those levels you run a risk of being seen as boring. So some colour is better than none. For levels 8 and 9, stick to dark to light blues or greys. Dark to light brown is possible but risky. Black makes you seem like an undertaker.

Comfort level

One important part that I haven’t mentioned so far is your own comfort level.

For a lot of autistic people, clothes can cause a major sensory overload. If this is the case with you, DON’T force yourself to wear something you’re uncomfortable in. It will do you more harm than good. If you think you can make it through an interview in uncomfortable clothing, then by all means do so, but test it out first. Put on your interview clothes inside your own home and do random stuff for an hour or so. If that’s already overloading you, then no way are you going to make it through a stressful interview.

Two options: turn down the interview and look for a job that expects a lower formality of clothing, or disclose to the people doing the interview that you have sensory issues. You don’t need to mention autism if you’re not comfortable doing so, but it’s better to tell people beforehand why you won’t be wearing appropriate clothing. Otherwise they will be surprised and they will hold that against you because interviewers don’t like to be taken by surprise, because that diminishes their power and control over the interview.

If you have some clothing that you feel comfortable in, that fits your body well (not too tight or too baggy), and that still conforms to the expected level of formality, then you’re all set. You won’t have to worry about sending the wrong messages and it will enable you to appear more confident and self-assured. And that’s what half the interview is about.

Final tip

If you feel up to it, ask a trusted and honest friend how you look. Or take a picture of you in your interview clothes and post it in an online community where you can expect honest feedback. I still do this for every interview I have. It really helps to have someone look at your clothes with a fresh eye, and it has nothing to do with being autistic or not! Everyone can make clothing mistakes sometimes.

In my next post, I’ll be talking about accessories, make-up, and grooming. Not the monkey kind.

Pig-tailed macaque at Khao Yai National Park

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.

High and low

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

Guess what? I disagree.

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

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

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

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

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

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

Guess what? I can be low functioning too.

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

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

Triplets eating lunch on a couch

We are alike © Msphotographic – Dreamstime.com

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

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

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

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

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

Words are fucking difficult

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

But the talking?

Yeah, not so good.

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…

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The stimlist needs your help

we-can-do-it-stamp
A couple of days ago, I wrote a blog post about stimming and why I’d always thought I didn’t stim.

In that post, I added a survey so people could list their own stims. Autistic stims, but also ADHD stims, OCD stims, Tourette stims, manic stims, depressed stims, stressed stims, and any other stim you can think of.

The response has been overwhelming. Over 250 stims have been added so far, with more coming in every day.

Have a look at the responses so far.

So. This is big. And I want to make it even bigger. Because perfectionism, right?

But I can’t do it alone (argh!). I need your help.

Please post a link to the stimming survey on your blog, Facebook page, Twitter feed, Google+ circle, Tumblr, or Pinterest. Or link to this post. Comment on other blogs. Spread the word.

We’re doing this for everyone who’s ever been judged for their stimming and for everyone who never knew that their “nervous habits” were stims. We’re doing this for awareness and acceptance. We’re doing this for all of us. Let’s see if we can get this to 1000 stims!

Direct link to the survey:
https://docs.google.com/forms/d/1-eKrnAu29UFatFCS3FrJOs-ghAh436uZKewiWvBOO_A/viewform

Direct link to the survey results:
https://docs.google.com/forms/d/1-eKrnAu29UFatFCS3FrJOs-ghAh436uZKewiWvBOO_A/viewanalytics

To embed the survey on your WordPress.com blog:
[googleapps domain="docs" dir="forms/d/1-eKrnAu29UFatFCS3FrJOs-ghAh436uZKewiWvBOO_A/viewform" query="embedded=true" width="760" height="600" /]

To embed the survey on another website:
<iframe src="https://docs.google.com/forms/d/1-eKrnAu29UFatFCS3FrJOs-ghAh436uZKewiWvBOO_A/viewform?embedded=true" width="760" height="600" frameborder="0" marginheight="0" marginwidth="0">Loading...</iframe>

Twirling my brains out

Stimming. Probably one of the most controversial of all autistic behaviours.

Man, people get upset about it.

On the one hand there’s ABA therapy which (as far as I’m aware) aims to analyse stimming behaviours and tries to modify or eliminate the ones that are classified as “non-functional” or “inappropriate” as much as possible. People saying that stimming means the autistic person can’t concentrate, or is not paying attention. Or that it makes others uncomfortable around the autistic person because it’s so obviously different. That to be accepted as “normal”, the stimming needs to be as unnoticeable as possible. That stimming makes autistic people the target of bullies.

On the other hand, there’s Autistic Pride. Loud Hands. The joy of stimming. The fact that it is a very effective way to self-regulate, especially when dealing with sensory processing issues or overwhelming emotions. The emerging notion that it actually helps autistic people with learning and getting better results in school. That trying to take away the coping mechanisms of the autistic person, increases the chances of a new coping mechanism popping up, one that might actually be more harmful because the autistic person couldn’t use a less harmful one to cope sooner. And the anger and pain that despite what others have said and maybe hoped for their autistic child, hiding or eliminating more obvious stims doesn’t truly help in getting accepted and not getting bullied.

Despite all the controversy, there’s still a lot of confusion over what stimming actually is.

When I first read about autism, I started looking at things in a new light. Things in my life that seemed to fit the description. I looked at experiences that I’d never linked together and suddenly things made sense to me. I was sure I was autistic.

But I was convinced I didn’t stim. It actually rather worried me, because I was afraid that without stims I wouldn’t be autistic enough to get diagnosed. Well, alright, I did have a tendency to get very bouncy when I was excited about something. But that’s not really stimming is it? Stimming is the flapping and the rocking, right?

And then I read somewhere that playing with your hair is a stim. And I thought, “Hey, I do that. A lot. Actually a whole lot. In fact, my mum was always telling me to leave my hair alone.” And then I read that Alyssa of Yes, That Too strokes the satin binding on her blanket as a stim. And I thought, “Mmm satin binding, that feels nice, I need to buy more stuff wi… Hang on. That’s stimming too? I do that.”

So. After reading that Alana of Sleep wake hope and then thought she didn’t stim either (hey, it’s not just me), I had this idea that maybe we need to put together a resource. A list showing all our unique ways of coping with our environment. A list that might help others recognise the same things in themselves.

Autistic people. But also neurotypical people.

Because everyone stims. And it’s so much more than just rocking.

If you think this is a great idea, please add your stimming behaviours to the list by filling in the survey above! It doesn’t matter if you’re autistic or not. They can be as normal or as odd as you like. The only criterium is that YOU feel it’s a stim. After filling in the form you will see a link to the survey answers so far. Who knows, maybe you’ll recognise some extra ones! In that case, no worries, you can fill in the survey as many times as you like.

I’m not entirely sure yet how I’m going to make the results permanently accessible, but I hope this will at least be an interesting start!

Edit: I’ve figured out how to link to the stimming survey results!