Tag Archives: communication

Empathy by any other name

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

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

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

He stared at me. Flabbergasted.

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

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

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

© Agsandrew | Dreamstime.com

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

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

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

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

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

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

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

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

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

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

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

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

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

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Timing things

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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?

Why veggies made me cry

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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.

Hang on, I’m different

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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.

© Lucian Milasan – Fotolia.com

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.

© Alex E. Proimos – Flickr.com

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.

Asking for help

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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.

Lists are an autistic thing, but they’re not an impairment

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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.

Words are fucking difficult

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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.

Related articles

Normal is a bitch

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A couple of days ago, I got an email notification about a new comment on one of the blogs I follow, Feminist Aspie. Feminist Aspie has written an excellent rant about neurotypical privilege and the constant misconceptions and prejudice about autism that she has to do battle with. Being made to feel like she has to apologise just for being herself is not ever an OK thing.

Someone had found her rant by searching for the word neurotypical, and decided after reading to leave a comment outlining their thoughts.

There’s a lot in there that’s extremely problematic, which is why I’ve decided to re-post it in its entirety. Trigger warning for victim blaming, ableism, and minimisation. And probably some other shit too. I’m not very good at the terminology, I just know wrong when I see it.

Ah dear.. I googled neurotypical and found this blog. I love to complain about my lot, but am only a tiny bit on the spectrum if at all. Also used to scream after loud bangs, managed to get out of it. Then there is the elevated amount of effort required to have (fake) normal conversation and body language. Someone wrote somewhere about how if you’re tired and forget to maintain correct body language there’s nasty consequences.. There is a certain extra effort in things, have never had arm flapping quite but a few other strange body language maneuvers I have had to un-learn. For me it’s not that there’s nasty consequences, just that I will not make new friends/girlfriends or win respect if I’m not conscious and careful with my body language and conversation. With language in particular, I tend not to naturally adopt cool, trendy language. Naturally more formal, but have to consciously and deliberately use certain cooler words eg “wanna go somewhere?”.

Why are all you guys wanting “a diagnosis” ?

It’s a pain.. I think I have been living in the “normal” sphere for ages and not ever acknowledged that it takes me a generally higher effort to do so than those who are actually born normal rather than having to learn it.. Ah well it has its advantages and perks too 😉 faster learning of technical shit and foreign languages so shouldn’t complain too much.. Have to take the good with the bad.

A have a suspicion that these autistic conditions are partially curable, since at 19 you would say I was definitely on the spectrum, but at 35 I have become so normal, it only rarely crosses my mind.

Oh yes.. This anger at “neurotypical privilege”. I do get rather angry when I feel that one tiny body language slip-up and a girl can lose attraction for me, or an interview can go to shit. Thing is, you can turn it around in a sociopathic way and say “if I fake it up well, they fall for it..”. Some people worry about the “judging..” of neurotypicals, but trust me you can outsmart them some of the time 😉 I wish I could do it more often and even the score!

~ Felix – August 30, 2013 at 7:45 am

It’s taken me a couple of days to line up my thoughts about this. My first priority was to write a comment on Feminist Aspie’s blog because my sense of social justice won’t let me get away with ignoring things that have the potential to be extremely hurtful and harmful for so many people. So I wanted to take the responsibility to publicly point out the flaws in their comment and not wait around for someone else to hopefully do that job better than I could.

And I tried to be polite about it, because who knows. They might mean well and simply not realise how much they’ve internalised all the ableism in society, the pressure to fit in and conform. So I tried my hand at validating because validation is important and it’s something I often forget and that makes people angry and less inclined to listen.

If you want to take a minute to read the polite version, go ahead. I’ll wait.

Or you can stay here and read the rude version.

© lunamarina – Fotolia.com

“Ah dear”. SERIOUSLY? You start off by being condescending? OK, you might not be from an English speaking country and not aware of the overtones of the word “dear”. But I’m not from an English speaking country either. And this sounds very condescending to me. People who start any conversation with “Oh dear…” or “Listen, my dear…” are usually about to engage in a heavy bout of ‘explaining of things that should be obvious even to someone who is brain dead’. I should know. I do that a LOT myself.

“Only a tiny bit on the spectrum if at all”. That doesn’t really sound like a professional diagnosis, although I could be wrong because some professionals don’t like using the word autistic and try to explain symptoms away just as much as lay people do. But even if it’s your own opinion and not a professional diagnosis, that’s OK. If you don’t feel autistic, then far be it from me to criticise that. Even though you are criticising the hell out of everyone with a diagnosis all throughout your comment.

This next one is REALLY problematic, though. “Managed to get out of it.” “At 35 I have become so normal.” And the worst one, “A [sic] have a suspicion that these autistic conditions are partially curable”.

Here’s the thing. Brain flash: we are adults. We are not children anymore. Of course we are going to be better at certain things than we were at the age of 4. EVERYONE is better at certain things as an adult than they were at the age of 4. Like holding a f**king spoon. Autism is a developmental delay, not a complete inability to learn. Sometimes the things we experience the most “delays” in are the things that don’t really interest us and so we’re not really motivated to learn. Whoa, another brain flash: being slow to learn something you’re not interested in is true for EVERYONE as well. If you’re not motivated in some way to learn how to fix your own car, you are never going to learn how to fix your car, and you’re certainly never going to be GOOD at it. Autistic or not autistic.

Yeah, I am yelling. That’s because people who think autism can be cured make me want to stab things.

Again, just because we’ve learned how to do things that other people like parents and teachers thought were important for us to learn, doesn’t mean we’re less autistic than the day we were born. It just means we’ve learned to do something despite not being intrinsically motivated, usually because we got punished for getting it wrong. Like forgetting to keep our hands still. Or not looking someone in the eye. Or forgetting to put on deodorant (I still don’t think body odour, mine or other people’s, smells anywhere near as bad as using too much aftershave or perfume. But I’ve learned that other people think it’s important).

Don’t think for one second that punishment always takes the form of corporal punishment or getting yelled at. Sometimes it’s as simple as getting told that an intelligent child like you should be getting it right. Over and over. Until you start believing you’re stupid. You must be. Because otherwise it would be easy, right? Everyone says so.

So yeah. I learned how to do things other people thought were important for me to learn. Most of the time it took me a lot longer. I never got as good at some of those things as the other kids. But I learned. Does that mean I got less autistic? No. I just got better at hiding “problematic” behaviours and better at coping with the demands of the world around me. I realise that a lot of parents will consider that a success for their autistic child, but please, I beg you: always be mindful of how much extra effort it takes us to appear “normal”. And maybe consider putting in at least some of that effort into things that actually help us become happier, less insecure adults.

OK, back to the comment. “I will not make new friends/girlfriends or win respect if I’m not conscious and careful with my body language and conversation.” And later on, “One tiny body language slip-up and a girl can lose attraction for me, or an interview can go to shit.” And you call that no nasty consequences? Are you f**king kidding me? You’re saying you’re not worth getting hired, being in a relationship with, or even getting RESPECT unless you constantly monitor your verbal and non-verbal communication. I’d call those pretty nasty consequences. Not getting a job? Pretty nasty. Not getting respect? Not being treated like a human being? I’d say that is pretty much the CORE of nasty. Everyone is worthy of respect whether they’re the queen of Denmark or a person in an irreversible coma. Maybe you didn’t mean it like that but it’s what you said and probably what you believe on some level. That if you don’t behave “normally”, people will be justified in treating you like crap.

Christ. I’m actually starting to feel sorry for you.

“Why are all you guys wanting ‘a diagnosis’?” OK, not feeling as sorry now, because back to the condescending tone. (What on earth is up with the quotes around diagnosis? Still haven’t figured that one out). From your story I can’t really tell if you’ve ever gotten diagnosed yourself. You are 35 and would have been an adult or nearly so by the time the DSM started including symptoms for Asperger’s Syndrome. You are obviously committed to learning enough social skills to live in the “normal sphere” so I’m assuming you have enough verbal skills and motor skills to not worry about those two areas, unlike some with “classic” autism. So that makes it highly unlikely that you were ever diagnosed as a child. “At 19 you would say I was definitely on the spectrum” would suggest that you did get diagnosed at 19, though. So I’m not sure.

However. Just because you feel adult diagnosis “is a pain” and wouldn’t give YOU any benefits, does that mean that this should be true for everyone? How about some validation that doing some things actually does cost a bit more effort, not because you’re stupid but because you’re autistic? (Those two words are not synonymous, by the way). You’re obviously not expecting any acknowledgment from others that you don’t have it as easy as others, but does that really mean you need to judge other people for wanting a little bit of acknowledgement? Those two things, validation and acknowledgment, are usually at the heart of anyone seeking an adult diagnosis, the feeling of “it’s not my fault”. You obviously think that’s a pain. Well, if your way so far has worked for you, good for you.

Except that it’s turned you into a wannabe sociopath who wishes they could turn the tables on neurotypical people and “outsmart them” more often, so you can “even the score” and get revenge for all the times they’ve judged you.

SERIOUSLY DUDE. THAT IS SO NOT COOL. Treating neurotypical people as the enemy? Talking about outsmarting them and making them fall for your manipulations? Basically treating someone badly just because someone else who you perceive to be from the same “group” has treated you badly in the past? Dude. Not OK. AT ALL.

If that’s the side effect of telling kids to try harder to “be normal” and “fit in” and hide their autistic traits and punishing them for mistakes in body language and other things by insinuating they’re stupid for getting it wrong… Then what are we aiming for when we teach all those things?

A well-adjusted, passing for normal, shiny aspie who dreams of getting even? Or a stimming, smiling, weirdo autistic who is just happy being themselves?

I know what I’d like to be when I grow up.

Highly verbal even when alone

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“There was something I wanted to blog about today. I just can’t remember what it was,” I say to the kitchen tap as I’m filling the kettle. “I should have made some preliminary notes last night.”

I play with the cat a bit, until the water starts boiling. “Sorry sweetie, I have to make water now.” As I walk into the kitchen I tell the kettle, “Make water, silly, I meant make tea. Tea tea tea.”

Then as I’m rummaging around for the tea bags, I lift my head and say to my teacup, “Oh! I just remembered. I wanted to write about talking to myself out loud!”

I’ve lost my marbles… © Johnsroad7 – Dreamstime.com

I think everyone is familiar with the trope of the “town crazy”. We had one in the town where I grew up. An old woman swathed in several colourful coats, shawls, skirts, and other pieces of fabric, walking around town with a small grocery buggy and muttering to herself. Sometimes she’d yell things that nobody understood. The children were usually a bit scared of her but the adults said she was harmless, just out of her mind. The only thing everyone agreed on was to leave her alone and don’t engage her in conversation because… well, you never knew. After all, she talked to herself out loud.

As do I.

I also meep to myself, sing phrases to myself, ummm to myself, shhh to myself, berate myself and laugh at myself. I sometimes do this via my cat because it’s more acceptable to talk to a cat and say “Oh, owner was being a bit silly wasn’t she? Yes she was!” than to directly address myself and tell myself I’m being silly. Out loud.

“You’re silly.” Yes self, I know I’m silly. Now shut up.

It’s funny because I don’t think I’m crazy. It’s just easier to vocalise thoughts sometimes, to get them out of my head when it’s getting crowded in there. Or just random sounds. One of my coworkers was the first to point out that I constantly made small noises while concentrating on a task. I’d never noticed. And while I knew I liked the sounds of certain words, I never realised I would sing them to myself over and over if I went to do something associated with that word.

“Cuppa tea cuppa tea cuppa tea tea tea.”
“Ooooh! Books! Books books books books books.”

(Note: I am actually choosing examples here with words that sound fairly similar in Dutch and English. I can’t make myself use an example where the Dutch word is just completely different, because translating it to English simply sounds wrong. I can’t do it).

So now I’ve described three ways of talking to myself. One is just sounds, meeps, ummms, pompoms. One is probably echolalia, repeating words or phrases (even though I’m repeating myself, not repeating someone else or something I heard on TV, so I’m not sure if that counts). And the last one is fully formed sentences that are a logical representation of what is going on in my head. A one-sided conversation, if you will.

It sort of feels like they all serve the same function. A way of soothing myself, of making myself focus, or helping me think and make concepts more concrete. It doesn’t feel very different to just be pomming to myself or to speak in full sentences. Except that with the full sentences, I become gradually aware at that particular moment that I’m talking to myself out loud and that this is the sign of a crazy person and not socially acceptable. But I don’t really give a damn, to be honest.

I’m still struggling with wrapping this post up in a nice and tidy conclusion.

The thing is, it’s all new to me. Not the talking out loud or making sounds. But the awareness of it. The fact that these are all well-known autistic behaviours. I didn’t even include any of them in the list of symptoms I wrote for my therapist. So other than describing what I do and how it feels to me, I’m at a loss to interpret any of it and give it some meaning. At a loss to embed it in the autistic framework that I’m slowly building for myself.

Never mind the social implications.

Because that old lady talking to herself? She’s just like me.

Got milk

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So I was reading this really funny and insightful post on Notesoncrazy.com about trying to get milk from the hardware store. Where milk was supposed to be maternal care and nurturing and how you shouldn’t expect your mother to give you milk when she’s not a grocery store. Or something like that. It was insightful. I’m doing a really bad job at explaining this.

© Nicholas Watts - Fotolia.com

© Nicholas Watts – Fotolia.com

Anyway. I started to write a comment, thinking of making a joke about how I never liked milk anyway and maybe that would explain why I never go looking for milk. Or maybe why I don’t have any maternal feelings. I’ve always said I don’t have maternal feelings. I like taking care of people though. But no maternal feelings.

And then I suddenly got hit by lightning.

Well no, not literally. Just this bright flash of really painful light *inside my brain*. Thoughts connecting. Sparks flying. Maybe some short circuiting going on. It felt painful. It still does while I’m typing this, but for a different reason.

You see, other women always told me that at a certain age, I’d get over my disinterest in babies and suddenly I’d feel those maternal urges welling up. (Or like the men said, my ovaries would start rattling). And then I would be able to think of nothing else and end up having children and love them to bits. Happens to all of us, apparently. And I would be deliriously happy even though it would be the complete opposite of how I felt about babies now.

I turned 30 and those feelings didn’t happen. I turned 33 and thought I wanted to have babies with someone, but it seemed more like a feeling of sexuality and horniness, not maternal anything. And the guy turned out to be a jerk so that was a narrow escape. And then I turned 36 and I sort of felt like maybe I do want children? Because it’s kind of sad that maybe I will no longer be able to in a few years time. But not an urge or anything. I held my little nephew and even though he was the cutest baby I’d ever seen, it didn’t awaken any feelings in me. So I was right, I simply don’t have that maternal instinct. I don’t think puppies are all that cute either. Kitten are extremely cute, but just as cute to look at as adult cats. See? No maternal urges.

I even said of myself I must have faulty brain wiring for not going gooey over babies. Because that’s supposed to be biologically hardwired. Big eyes and big mouth = need to nurture. So I must be faulty.

I made jokes about having a faulty brain.

© MAK - Fotolia.com

© MAK – Fotolia.com

All that based on what other people were telling me I was supposed to be feeling.

And I never considered that maybe I feel things differently from others. Even when I started figuring out that maybe I’m autistic, I still didn’t think that this might mean I simply feel things differently from others. That it doesn’t mean I don’t have emotions. But that how others describe those emotions simply isn’t related to how I feel them.

Until I started making a joke about how I don’t like milk.

The thing is. I think I do have maternal feelings. They just feel different from what I’ve always been told they should feel like.

I want to keep a child safe inside me. I want to know what it feels like to be pregnant and grow and learn new things about my body. I want to feel a child’s first kick. I want to feel the pain of contractions.

I want to keep a child warm and safe and sheltered during those first confusing days and weeks in the big world outside, all the bright lights and loud sharp noises unfiltered and all coming at them at once. I know what that feels like. I want to help them learn how to cope with that.

© annems - Fotolia.com

© annems – Fotolia.com

I want to feed a child and learn what is yummy and what is yucky all over again. I want to see their personality develop in their likes and dislikes. I want to see if they like soft blankets and dancing in puddles as much as me. Or maybe they will like something else and I will discover that joy through them.

I want to support a child and teach them that it’s ok to be curious and enthousiastic and passionate. I will help them understand things without shaming them for not knowing things right away. We all have to learn new things. I want to learn new things as well through teaching and supporting a child in their journey of discovery. I want them to teach me as well.

I want to care and give love. Even if that love isn’t expressed the way some people say love ought to be expressed. I know my parents love me, even though they sometimes expressed it in odd ways. I’m sure a child will know I love them too. Just as much as I love kittens.

I have no idea what to call this feeling.

But I know how to describe the feeling that I’ve always believed myself to be cold and uncaring and not maternal, because I trusted that others knew more about emotions than me.

That feeling is sort of anger and grief mixed up. I think.

And too many tears to count.

Cognitive love

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Hoera! (Hurrah in Dutch) – picture by my sister-in-law

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

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

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

I had no idea what was expected of me.

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

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

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

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

Smile

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I was thinking about how nervous I was about the diagnostic process and her reading my letter. Trying to keep my breathing even. Looking at a painting on the wall. Trying not to fidget too much.

“Do you realise you’re smiling right now?” said the therapist as she looked up from my letter.

I looked at her, feeling confused. “What do you mean?”

She clarified, “Here in your letter it says you often smile at inappropriate moments. So I was wondering if that was what is happening now. You’re smiling. Are you aware of that?”
smile-right2
I started grinning and said I had no idea I was smiling. And then got completely confused about what I am saying because yes I know I am grinning now. But not smiling a minute ago, I didn’t know that. Was I really smiling?

She said she could see that the grinning was a nervous reaction. Those things are obvious to people who can read faces, I guess? And she said she understood what I was trying to say. So I could stop worrying about my words and what my face was doing without me having any control over it. When I had permission to stop doing words I could start feeling. I felt… at a loss for words. That’s how they call it when you can’t grasp a concept, when it doesn’t fit reality. When things simply don’t make sense. I don’t know how to describe my feeling.

I was smiling.

I didn’t know.

Yes, I’m sure

by

It’s taken me some time to get around to writing this. But I need to write it down, and do it well and concise and understandable and logical and open and as vulnerable as I can bring myself to be. Because this Tuesday I’m scheduled to have my last intake interview at the mental health clinic. Where they are going to tell me whether in their opinion I am autistic enough to get help. Or I should just accept whatever help they are willing to offer me, even if it’s treating the symptoms and not the cause. Or maybe I’m just a big crybaby who should go home and try harder.

To the person doing the interview,

When your colleague called me three weeks ago to tell me that the team wasn’t yet of one mind and that’s why you wanted to schedule another interview concentrating on my social interactions and the possibility of depression, I felt very angry. I understand that you want to be thorough in your approach and I support that. But I am very much afraid of not being taken seriously and not being listened to. That is why I am giving you this letter, instead of addressing these concerns verbally, because I have less trouble articulating myself on paper than I do in person, especially where emotions are concerned. And this is a very important and emotional subject to me. I hope you understand this. I would appreciate it if you read this letter through to the end before commenting, but please be assured that I will do my best to answer all questions and comments you might have afterwards.

Core problem

I am functioning at a reasonable level without any supports, except for the fact that I have been fired or otherwise let go from 8 of the 12 jobs I have held in the past 13 years. I have a university education (although without a degree), which has enabled me to work in professional or near-professional level jobs. I have never had formal or informal complaints from supervisors or coworkers about the quality of my work, meeting of deadlines, or other work-related issues.

Instead, in the cases where a reason was given for dismissing me, it was always along the lines of “stubborn”, “impossible to work with”, “doesn’t listen”, “undiplomatic”, “devious behaviour”, “untrustworthy”, and so on. This was never addressed during my employment, or not in such a way that I saw what was happening and could anticipate and address problems arising at work. Every time I’ve been dismissed, I was taken completely by surprise.

I do not have any problems or complaints in other areas of my life that pose an impairment to my current functioning.

Depression

I understand that you wish to talk about depression. I do believe this is a logical request related to the suicide attempt that I have listed on my intake form. However, as discussed with your colleague in the previous interviews, I do not have any complaints or feelings of depression. My attempt was over 15 years ago, and I haven’t had any suicidal or depressed feelings since. I do not feel it has any bearing on the core problem I have sketched in the paragraphs above. I hope you can see why I feel this way.

Other concerns

As mentioned, I don’t experience other significant impairments. However, there are several traits that I feel might be related to my core problem, based on the official diagnostic criteria for autism and keeping in mind specific development in not previously diagnosed adult women. “Often” in the below context means more than once every two months. “Occasionally” means around once or twice a year.

  • Social interaction
    • I often get told not to take everything literally
    • I often get told how naive I am
    • I often get told that I said something very rude without realising it
    • I often get told I sound authoritarian or overly sure of myself
    • I often get told my spoken and written language is overly correct and formal
    • I often have trouble identifying emotions in others
    • I occasionally get told off for inappropriate copying of other people’s words or mannerisms
    • I often get told to smile more
      This is my smile when I practice a few times
      This is my smile when I don’t pay attention
    • I often get told smiling at that particular moment was inappropriate
    • My mother often told me when I was a child that my face and posture were unresponsive
    • I am often able to repeat an entire conversation word for word, but have no idea what kind of facial expression the other participant(s) had during the conversation
    • I occasionally get confused about who is currently speaking when talking to several people in a noisy environment
    • I often get confused when someone asks me “how are you?”
    • I often have no idea how to maintain my side of a social, informal conversation that does not revolve around the exchange of pertinent information
    • People often have to tell me specifically that certain information is restricted or sensitive or private.
    • I often get told I come across as uninterested in how other people feel or what they say
    • I often get told I come across as intensely focused and interested if the subject of conversation matches my interests
    • I occasionally get told I appear obsessed with people in the early stages of a friendship or relationship
    • I often have trouble maintaining friendships
    • I often don’t realise someone doesn’t like me until someone else tells me
    • People often don’t laugh at my jokes
  • Restricted interests or behaviours
    • I have (and have had as a child) several intense interests that do not match peer or age appropriate interests
      • I never got the hang of colouring outside the lines. That was what the lines were for.
      • I liked calligraphy although I never really got the hang of it. I settled on typography instead. At age 9.
      • I created passports for all my Fabuland figurines so I’d know how they were related to each other. I included imagined genealogies and “passport photos” I’d cut out from toy catalogues.
      • Another hobby from around the age of 10 was drawing detailed floor plans of fictional houses.
      • On holiday, one of my favourite pastimes was to look up German license plates we saw on the road and see which city they came from. We had a list in the back of our German road atlas where I crossed off the ones we’d seen.
      • I collected rocks, shells, bits of pottery, stickers, postcards, pressed flowers, things with cats on them, colouring pencils and crayons, buttons, beads, coins, and stamps. I adopted my dad’s match book and sugar bag collections. I still collect stamps and still haven’t found the courage to get rid of my buttons and beads. Or my foreign coins, come to think of it.
      • I have had the entire script of “Monty Python’s Life of Brian” memorised since around the age of 13. Yes, I made that website. It’s horrible and I made it a few days after I taught myself HTML.
      • When we watched “I, Claudius” at school when I was 14, I made a complete genealogical tree listing all the characters and their relations to each other, for fun. I had read the book by Robert Graves (in English) but I also got Suetonius from the library to use as source material. I took the tree with me to class.
      • By age 16, I knew the lyrics to around 150 Beatles songs by heart, and to nearly all the songs Ella Fitzgerald has sung (and I can sing them, too).
      • When the student I was partnered up with – to do a tour of Bernini’s sculptures in Rome – forgot to make a photocopy of the notes I’d given him, I did an improvised tour instead by narrating the Greek myths the statues were inspired by. I’d watched The Storyteller a lot.
      • I am not a complete Star Trek geek. I just know the general storylines and names of all the main and most of the secondary characters – up to Voyager – and I’ve probably seen most episodes more than three times. I also like to read articles on Memory Alpha for fun.
      • At the age of 35, I methodically and systematically changed my fashion awareness. I bought over 50 pairs of shoes in less than 2 months to make sure I had a pair in every necessary colour and style. Those were not impulse buys to make myself feel good, or behaviour that I was unable to control. It was on purpose.
      • I often get referred to as “the walking encyclopaedia” for my love of trivia and extensive knowledge of facts and figures.
      • I know everything there is to know about ingredient lists and additives and cheap substitutes for proper food and will gladly bore the tits off anyone about nutrition.
      • I need to have my books sorted first by language, then by alphabet. No exceptions. I have held discussions with friends on how to properly organise my books.
      • I have taught myself electrical engineering.
      • I have taught myself HTML.
      • I have taught myself Italian. Although not fluently.
      • In many of the online games I play, I’ll be the one making the list of all the player coordinates on the map. Or the list of quest items my alliance needs to collect. Or the Excel sheets with formulas to track character development.
    • I often have trouble moving on from a project when it’s not “finished” or “perfect” yet
    • I love watching things spin, like the washing machine
    • A visual break in or deviancy from a pattern can make me feel physically uncomfortable. (Especially #3, #7, #14 and #19).
    • I am hyperreactive to auditory, tactile, olfactory and visual stimuli
      • For as long as I can remember, I have twirled or stroked my hair or stroked my own clothes to comfort myself.
      • I can’t sleep when there’s sand or crumbs in my bed. I’ve been told not to make such a fuss by others. Princess and the Pea style.
      • Occasionally the tags in my clothes, or a seam that rubs against my skin, can drive me crazy.
      • I can’t have a conversation while the TV is on or the radio is playing.
      • I often get laughed at for visibly jumping when something makes a loud or unexpected noise.
      • I don’t like bright directional light or overhead fluorescent light.
      • I get very uncomfortable with images shown in quick succession, or with lots of variation in orientation and tilt. Watching a Minecraft roller coaster video makes me feel ill.
      • I am very sensitive to strong artificial scents, like being able to smell other people’s laundry detergent and shampoo – not to mention perfume or aftershave (Axe/Lynx should be classed as a WMD in my opinion). I could do this even when I was smoking two packs of cigarettes a day. It’s worse now.
      • I used to be a very picky eater, now it’s only vinegar that makes me physically ill. And hard-boiled eggs.
      • Even as a baby I refused to drink cow’s milk. My mother weaned me off breastfeeding when I was around 10-12 months old and I haven’t drunk any milk since.
    • I have not-so-good spatial awareness and proprioception
    • I often get called clumsy
      • I drop things daily
      • I often cut my fingers or hit myself accidentally
      • I often walk into things
      • I often have bruises on my legs and arms that I don’t remember getting
      • I occasionally fall backwards without any particular reason
      • I have to be very careful when going up or down the stairs, I trip easily
    • I used to have problems with fine motor skills as a child
      • I have very good handwriting now, but I still hold my pen “the wrong way”

    Does this look like good handwriting?
    Does this look uncomfortable?
  • Other
    • I often do not hear someone speaking to me when I’m focused on an activity, like reading a book
    • I often have executive dysfunctions in the following areas
    • I’m often anxious about social interactions
    • I’m often overwhelmed by sensory input
    • I have strengths in the following areas:
      • Attention to detail (for example proofreading, I can spot a typo from a mile off)
      • Problem solving and analysis
      • Very good phone voice. I didn’t get a pleasant voice by accident. It takes concentration and practice.
      • Not letting angry customers “get to me”
      • Scripting customer interaction
      • Writing user manuals
      • Highly acute sense of fairness and honesty
      • Very loyal
      • Love to learn new things and apply knowledge in new ways
      • Getting along with programmers

In summary, I don’t feel very impaired by these traits, but I do think they shouldn’t be seen separately from my core problem.

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Some questions for you

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Yes, you. The person who reads this. I have some questions for you!

I have a little bit of background in websites and internet and that sort of thing. And one of the things I’m always very focused on is usability, the art of making a website nice for the visitor instead of the owner. I mean, I’m not an expert, but I know enough about it to catch the most common mistakes and to help people build better websites. But I don’t have any knowledge whatsoever about blog usability. So, I figured, I’m just going to ask my awesome reader panel. 🙂

  1. Which of the following do you prefer?
    • A homepage with each post having a short introduction and a “Read more” link, which makes it easier to scroll through and see if there’s anything you’re interested in (this is what I have now)
    • A homepage with every post published in full (all information in one single glance)

     

  2. What would you like to happen when you click on a link to another post?
    • Open in the same window or tab, so you have to use the back button (this is what I have now)
    • Open in a new window or tab, so before you know it you have 15 windows open

    Links to other websites always open in a new window or tab, by the way. It’s just the internal links I’m curious about.

  3. What do you usually pay more attention to?
    • Categories and the top navigation menu (I don’t really have one at the moment)
    • Tags and the tag cloud in the side bar

     

  4. I sometimes use smaller version of images and photos inside my posts. How would you like to look at the larger image?
    • Open as a new page, with the top navigation still there (this is mostly what I have now, although I’d like to be able to add the right hand navigation as well)
    • Open as a “pop-up” gallery which you can close with the little X in the upper corner (I have this sometimes for posts with multiple images)

     

  5. Anything else that annoys the sh!t out of you every time you come here? I love honest criticism (yay! honesty! no unintelligible social scripts!) so please take this chance to unburden your frustrations.

I would love to hear from you all in the comments! And to make it even harder to resist, I’m going to call you all awesome again. I mean, look at this. YOU ARE AWESOME. 😀 *doing bouncy happy thing*

Social scripts: a play in one act

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Or, what happens when a co-worker wants to ask you a question about something work-related but feels the need to have some chit-chat first.

© pholidito – Fotolia.com

Co-worker:
hi, had a good weekend?

Autisticook:
yeah sure, you too?

Co-worker:
can’t complain, 2 nights north sea jazz and 2 birthdays on saturday

Co-worker:
so yes 🙂

Co-worker:
you done anything fun?

Autisticook:
north sea jazz, great!

Autisticook:
who did you see?

Co-worker:
err… do you have an hour or two?

Autisticook:
hahaha

Co-worker:
Friday Roy Hargrove, Diana Krall, Seesick steve
Sunday Nynke Laveman, Javier Limon, Marcus Miller, Ben Harper, Bonnie Raitt, and Sting

Co-worker:
all never seen before and all very awesome

Co-worker:
and some bits here and there from other artists

Autisticook:
yeah that’s how it goes at north sea, that’s what makes it fun 🙂

Co-worker:
indeedy

Co-worker:
you’ve been?

Autisticook:
i went when it was still in the hague but haven’t been to rotterdam yet

Autisticook:
so it’s been a while

Co-worker:
ahhh, i haven’t been for years either when it left the hague but it’s more fun than i thought even though ahoy [the venue, ed.] is so massive

Co-worker:
so simply go 🙂

Co-worker:
i had a question about that ftp issue…

© pholidito – Fotolia.com

What follows next is meant to be a funny explanation of how I process social cues, a bit like a fake anthropological article. It’s not meant to be taken 100% seriously although the tips and tricks will very likely work in real-life situations. If you can’t laugh at yourself, what’s the point? However, from some (non-autistic) reactions it appeared I was too subtle in my humour, that’s why I added this explanation. If confusion persists, I might have to resort to colour-coding the funny bits.🙂

I’ve developed my script for dealing with “how was your weekend?” because I noticed that answering truthfully wasn’t a socially acceptable option for me. Apparently neurotypical people get very uncomfortable when you say “I played computer games” or “I read a book” (well, actually 3 books).

Note the first strategy in line 4: deflection. Mostly, people who ask about your weekend do so for two reasons: because they think it’s the polite thing to do and because what they really want is for you to ask them about their weekend. So, deflect the question back to the other person.

Sometimes they don’t take the hint and will ask you again, as in line 10. In that case, deploy the second strategy: ask them specific questions about something they casually referred to in their first answer. In this case, I could have asked whose birthdays, and get them talking about their family or their friends. I picked North Sea Jazz because I have some specific knowledge about this so it’s easier to ask questions that will keep the other person talking. You can even volunteer some information but only do this if you’re absolutely sure about how it will be received. In this case, I mentioned I had been to North Sea Jazz as well because I know that people like having shared experiences (*). However, I didn’t mention that I stopped going because the crowds and the noise drive me bonkers. That’s too much information.

Keep on doing this until the other person gets to the question that prompted them to start a conversation or until they walk away. Neurotypical people don’t have hyperfocus and have a low boredom threshold so it usually doesn’t take too long. Good luck!

(*) Edited to add: This is only true for general locations or actions. If it’s talking about specific experiences that trigger an emotion within the NT, they will think you’re selfish for trying to focus the conversation on yourself. A safe course of action would be to keep on asking the NT questions or to only agree in short sentences like “Oh, me too!” or “I know exactly what you mean” when you’re not sure of the emotional content of the experience.

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Let’s talk cat

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I have a friend. His name is Guido. He likes a lot of the same things I do. He also likes to do things that I think are weird. But that’s ok. He probably thinks the same thing about me.

He is a cat which means his brain is quite small. He doesn’t spend a lot of time talking about abstract concepts. But he is very outspoken about things in the here and now. Like give me food. Or let’s snuggle. Or leave me alone. This makes it easy to know what he wants. I never have to guess or worry that he might say one thing but mean something else.

This is Guido. He likes sitting in plastic bags. He was purring.
This means happy

I like being friends with my cat even though our different abilities mean that sometimes it may seem a slightly inequal friendship. I get food for him, clean his litter box, and open doors when he wants to go out. He gives me headbutts and makes me laugh. But I know that he is here because he wants to be, not because he needs me. If anything, I feel slightly bad for wanting him to need me. After all, a cat can hunt his own food. So me choosing food that he can’t get by himself: that is my preferences making him disabled in that area. The same goes for his litter box. Just because I want him to use the litter box doesn’t mean he is less than me for not being able to clean the litter box that I want him to use. We both understand that.

Sometimes people joke about me being “crazy cat lady” for referring to my cat as a person. Which is silly. Because my cat is not a person and I don’t see him as such. He’s a cat. If I pretended he was a person, I’d be denying the things that make him a cat. So. He’s not a person, he’s not my baby, I’m not his mommy. But he is my friend, because he likes spending time with me. How else would you define friendship?

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Words words words

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I am so helpless like this. I need words.

My brain is locked. Where is the key? I think maybe smiling is the key.

Frowning makes it harder.

But I am frowning because all my words are locked up.

It’s not the fault of writing in English. My words are just as hard to access in Dutch.

In person I would probably not say anything.

It’s why they say autistic people are stupid. No words. They’re wrong. This is not stupid. It is disability.

Reading words makes it easier to find words. I am using your words to find my own.

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