I Am Autism

Married, With Aspergers

You don’t know me.

You see me sit, rocking.
You hear me talk to myself,
Repeating phrases from the TV.
You watch my hands as they flap
And touch. Seemingly random,
My patterns escape your notice.

You don’t know me.

You see me on the edges,
Quiet, listening but not speaking.
You hear my outbursts:
Violent eruptions of sound and motion.
You note my non-compliance
With black marks in your ledgers.

You don’t know me.

You try to change me,
Remake me in your own image.
You teach me that I am broken.
You punish me for being myself.
You make me fearful and anxious,
Afraid to break your rules.
You drive me deep inside myself.

You don’t know me.

You don’t empathize with me.
You don’t learn about me.
You don’t try to understand me.
You fear me, hurt me, hate me.
You don’t love me: if you did,

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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.

Keeping it real

One thing that always seems to surprise people, even the ones who are closest to me, is how easily scared I am.

Especially by things that aren’t real.

© Jenny Reiswig

© Jenny Reiswig | Flickr.com

I’ve been struggling with this a lot recently. It’s like those childish fears, of things that go bump in the night, never left me. And it’s not a momentary shiver either, or something that I can rationalise and then not worry about anymore. I am often utterly convinced that if I were to look out the window at that particular moment, I’d see several zombies or White Walkers pressed against the glass.

And it scares the crap out of me.

I know that I’m not the only one who is frightened of things like this, because otherwise we wouldn’t have scary movies. It’s a fear that speaks to a lot of people. Where I seem to be different from most people is that my fear is so disabling. I’ve never managed to get past the water cup scene in Jurassic Park. I had my best friend in stitches because I “watched” Arachnophobia from behind her sofa. Shaun of the Dead, even though it’s hilariously funny, had me scared out of my mind for weeks. Not helped in the least by my then-boyfriend, who thought that pretending to be a zombie whenever we were in the bedroom together would help me get over it. Or just to give himself a good laugh, I don’t know.

I didn’t think it was funny. I was unable to see that him pretending to be a zombie wasn’t real.

I have the same problem with dreams. I tend to have very vivid dreams, and the times that I’ve been truly upset with someone because of something they said or did to me in a dream are too many to count. Rationally, I know it was a dream. But it doesn’t feel that way. It feels just as real as zombies outside my window and bloodsucking spiders underneath my bed.

In a way, it’s probably related to perserveration. I can’t let the thought go. It takes hold of me, takes on a life of its own.

Again, it’s not that irrational fears are something abnormal. It’s how crippling they are. I want to be able to watch TV shows without turning off the sound, without covering my eyes, and without nightmares afterwards. I want to be able to climb up the stairs without fearfully looking over my shoulder and feeling my heart beat in my throat. I want to be able to get into bed without suddenly thinking that my feet will get bitten off if I don’t pull them up.

Swiss Family Robinson – a Japanese cartoon that had the family being chased by wolves in the dark in one episode, leading to me being afraid to get out of bed at night for months.

Even though it all sounds so childish, the fear feels real. Far too real.

I have been laughed at and made fun of, even by my nearest and dearest, for being so afraid of things that are fiction. At best, I get empty reassurances that it’s not actually real and there’s no need for me to be scared. But neither of those are any help. They weren’t helpful when I was a child, and they aren’t helpful now that I’m an adult.

Maybe I should just keep a poker next to my bed. Screw what anyone else thinks.

 But monsters were easy, at least. She’d learned how to deal with monsters. She picked up the poker from the nursery fender and went down the back stairs, with Twyla following her.
 ‘Susan? Er… what are you doing?’
 Susan looked at the poker and then back at the woman. ‘Twyla says she’s afraid of a monster in the cellar, Mrs Gaiter.’
 ‘Actually, that’s a very clever idea,’ said someone else. ‘Little gel gets it into her head there’s a monster in the cellar, you go in with the poker and make a few bashing noises while the child listens, and then everything’s all right. Good thinkin’, that girl. Ver’ sensible. Ver’ modern.’
 Susan sighed and went down the cellar stairs, while Twyla sat demurely at the top, hugging her knees.
 A door opened and shut.
 There was a short period of silence and then a terrifying scream.
 Susan pushed open the door. The poker was bent at right angles. There was nervous applause.
 The party went back up the hall. The last thing Susan heard before the door shut was ‘Dashed convincin’, the way she bent the poker like that…’
 She waited.
 ‘Have they all gone, Twyla?’
 ‘Yes, Susan.’
 ‘Good.’ Susan went back into the cellar and emerged towing something large and hairy with eight legs.

– Terry Pratchett, Hogfather

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.

Feeling guilty

I haven’t exactly been feeling guilty for not blogging much, but I’m still going to back-date this post so the February archives link doesn’t come up empty – because that “Page not found” thing annoys me. So. Yeah.

I don’t do guilty well. It’s an emotion I’ve never really gotten the hang of. Either I’m powerless to change an outcome, in which case feeling guilty isn’t going to help much, or I’m personally responsible for the outcome, in which case DOING something about it works much better. I’m sure that guilt is a far more complex feeling in others, but I have trouble with emotions anyway.

My silence here isn’t something I feel guilty about. Even though I love writing, I simply haven’t felt that itching in my fingers. Too much stuff going on in my life to be able to process it verbally. It’s one of those times where it really becomes clear how verbal thinking, no matter how verbal I may seem, isn’t my primary coping mechanism.

I’m slowly getting back into the verbal, but I’m not rushing myself. The words will come when they’re good and ready.

And in the meantime, here is a pretty picture.

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?

Cara

This is why I write. Why I reach out to others.

“On a sheet of paper I write a few lines. Blog addresses, websites, videos. I push it towards her. This is us.

This is how it starts. One by one, like exhausted swimmers, we pull them to safety. They sit in the boat, confused and scared, afraid to wonder if things might finally get better. And the pilots of the boats signal to one another. I’ve found one more. They’re safe. I’m bringing them home.

Lyssa and Me

Cara sits in the chair to my right. She looks everywhere but at me; at the floor, at my desk, at her hands. I read through the notes from my colleague’s consultation last month, and the letters from various agencies. Now twenty-two, Cara crashed out of university in what is described as a psychotic episode four years ago. Called to the lecturer’s office to discuss an unsatisfactory assignment, she refused to speak and ran from the room. Several staff attempted to restrain her, resulting in frantic head-banging until she was removed by ambulance to the local psychiatric department.

The years since then have been a pattern of admissions after similar episodes. Staff on the ward note that once she recovers she is calm and appropriate, but very scared of some of the more labile patients. She has moved from hostel to hostel, and has no friends, or support system

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