Point, counterpoint, actual point

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

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

And we don’t deserve to.

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

© Veronica Foale - Flickr.com

© Veronica Foale – Flickr.com

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

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

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

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

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

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

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

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

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

Contributions so far:

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

This is autism

Last Monday, Autism Speaks told the world that autism is:
. . . living in despair
. . . fear of the future
. . . exhausted, broken parents
. . . lost, helpless, burdensome children

That kind of autism is not my autism. My contribution to the This is Autism Flash Blog.

I enjoy the sounds of the city around me, the strains of birdsong that I can hear even through traffic, the purring of my cat that almost but not quite manages to drown out all other sounds, the clicking of my keyboard while I’m typing. I hear the trains going past in the distance and I love getting sucked into that rhythm. When I listen to music, I become the notes, the melody, I can pick out the individual instruments and still hear how they work together to create a single sound. I sing along with the counter melody almost by instinct.

I have problems when people raise their voices, start yelling, even from a street away. I have problems with loud cars and motorcycles and airplanes, those sounds hurt my ears so much. Locations with lots of echo send me into sensory overload. Loud bangs, or even just someone clapping suddenly, frighten the life out of me.

This is autism.

I’m able to make the most outrageous statements in a completely neutral tone of voice and with a neutral facial expression.

My friends call it deadpan.

This is autism.

I’m unable to reach the highest shelves in my kitchen or at the supermarket without assistance. That means I either have to buy specialist tools like stepladders with my own money, or ask others to get things down for me. There are no services available. Sometimes I want to cry with frustration when I can’t get something from the top shelf on my own.

This is being 5’3″.

Autumn makes me happy because the piles of fallen leaves make me want to play in them, throw them in the air, smell the mulchy scent of them, hear the whispery crispy sound of them as they’re crushed. Fallen leaves make me feel like a child.

Winter makes me happy because snow is beautiful and shimmery and light. It gives everything a new shape. It’s soft and crispy at the same time. Snowflakes have the most intricate patterns. And having a snowball fight is so much fun, even though the sensory overload from having a snowball land in your collar is indescribable. Snowball fights make me feel like a child.

Spring makes me happy because there is no colour more beautiful than the green of new leaves. I stare up at them and see the sunlight fall through them. And I feel the wonder of new life, of seeing everything for the first time, the wonder of a child.

Sometimes I am able to shake off the shackles of social expectations and act like a child. I wish I were able to do so more often. Not being aware of social rules has its benefits.

This is autism.

I have to deal with people who don’t think like me every day. One of the greatest gifts that autism has brought me is connecting with other autistic people. Sharing the same way of thinking doesn’t automatically mean that we get along, or that we’re all good people. But there is an instinctive level of understanding that has eluded me for so long. Something that is lacking in the majority of people I meet. They don’t understand. And sometimes it seems as if they don’t even want to understand. That they don’t want me to be me.

I’m tired of being told I’m smart enough to figure things out myself. I’m tired of being told to fit in, to stop being so contrary and different. I’m tired of trying harder. I’m tired of getting fired for not being sensitive to office politics, for speaking the truth at the wrong time, for not understanding that sometimes words are more important than actions. I’m tired of having people angry at me for shutting down, for not looking at them, for not responding quickly enough.

This is not autism.

It is not autism that makes people treat me like this. And it is not autism when I’m hurt by how people treat me.

Hang on, I’m different

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

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

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

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

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

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

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

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

It was heartbreaking. It was exhausting.

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

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

Wrong.

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

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

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

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

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

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

What a difference that makes.

Acceptance has made me different.

Why I’m so awesome at the work I do

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

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

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

    © Poznyakov – Dreamstime.com

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

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

> sudo make me a sandwich – xkcd.com

Stimmy songs

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



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

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

Crying

There was this moment when I had job coaching. I started job coaching because I’d gotten fired a few months previously, from a job I loved. And it wasn’t the first time I’d lost my job. And I figured maybe I could use some help figuring out why it always went wrong.

My job coach asked me to describe my wishes and goals. And somewhere along the line, I can’t remember how, I mentioned that all I really wanted was for my employer to accept me the way I am.

And I felt tears starting in my eyes.

The horrible thing was, my job coach noticed too. And she asked the dreaded question, “How does that make you feel?”

Please. Don’t ask that question. Don’t remark on the fact that you see the tears in my eyes.
I cannot cry. I MUST NOT CRY.

Not where you can see me.

I don’t know why I feel such a near-instinctive aversion to letting others see my vulnerability. It’s not reasoned out. As soon as I start feeling a “bad” emotion, my reaction is to STOP. HIDE. I feel bad about crying in private too, bad to the point where I will slap myself to stop crying. But when someone else is there it feels far, far worse.

I can vividly remember the times I sobbed like a child in a public place in the last 20 years. At the funeral of the mother of a friend of mine, when I thought of how the rest of the family would miss her (I didn’t know the woman at all). When I was managing a store all by myself and I had my first angry customer (I was 17). When a boyfriend broke up with me completely unexpectedly. All through the second half of the film “Once Were Warriors” (seriously unstoppable sobbing). When the manager in one of my jobs told me she didn’t want me to come back to work the next day, even though the company had offered me a permanent contract and we were in the middle of negotiations. When I was told in my last job, the job that I loved, that my putting in overtime to get the job done wasn’t appreciated. When I admitted that I wasn’t able to keep track of my finances and that I’d probably get evicted from my house very soon because of all the letters that were lying unopened on my bed. I mean the kind of sobbing that makes you gasp for breath. Buckets of tears. Uncontrollable.

And every time I felt so angry and embarrassed and awful that someone would see me like this.

It’s probably normal. Nobody likes crying.

But I never got that sense of “release” that other people kept mentioning. That I could “let it all out”. Crying just made me feel worse. Even when I cried in private. I just felt tired afterwards. But not relieved. It was all still there. Crying didn’t solve a thing.

And yet.

In the past few months, while I’m working on getting diagnosed, I’ve cried. I’ve cried so many times. Reading other people’s experiences. Their feelings. Their hopes. Their fears. I cried and cried and cried every time I recognised something. Something that touched on that idea of being accepted the way I am. So much crying. It’s always in private, but it’s a lot of crying.

I’m crying as I write this.

And weirdly enough, it doesn’t feel all that angry and embarrassed and awful. I haven’t slapped myself to make it stop. It’s not my idea of fun, but still. It feels a bit like at least it’s OK to cry. It’s a sad cry but also a happy cry. A forgiving and compassionate cry.

I cannot believe how much I’ve been crying.

And it feels like it’s going to be OK.

Normal is a bitch

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.

“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.

What is my face doing?

That dreaded moment has arrived again. Time to renew my passport. Of course my passport expired a couple of weeks ago already (yay executive function!) so I really need to get it done SOON. In the Netherlands you are required to have a valid ID document with you at all times, and that means a passport or an official ID card. Driving licenses aren’t always valid ID, and besides, I don’t have a driving license. So passport it is.

And that means getting my picture taken.

That’s what I hate about renewing my passport. The rest is fairly standard, scripted stuff, nothing much that might throw me off. But photos? Argh.

Because I have no idea what my face is doing.

With all the rules about “no smiling, no visible teeth, face has to be completely visible, neutral expression”, having my picture taken becomes a task of gigantic proportions. Especially the neutral expression bit. In my current passport picture I look like a particularly depressed heroin junkie. And that took about 25 minutes of non-stop instructions by the photographer. “Tilt your head a little bit to the left. No, LEFT, not right. Raise your chin. Don’t smile. Open your eyes wider. Stop tilting your head to the right. You’re smiling again. Don’t frown.” And so on and so on. It’s really stressful because I have no idea how I look. Am I smiling? Is this ok? WHAT IS MY FACE DOING?

I used to practice at home for hours, trying to see in the mirror what the “right” position is to put my face in, and trying to remember which muscles I’m tensing and which I’m relaxing and what facial configuration does that result in and can I reproduce it? But usually as soon as I get to the photographer, I forget everything I’ve practiced and simply adopt my standard “deer in headlights” look. Or inappropriate smiling.

But that was before I knew about autism and maybe it’s not just me who gets confused by all the facial expression stuff. So this time I was determined to do it differently.

I took a mirror with me.

At the photographer’s, I tried to explain that I have trouble knowing what expression I have on my face and would it be OK if I kept the mirror in my hand so I could check? He just looked at me and asked me why on earth did I need to do that for? OK, fail. He then started explaining all about the requirements which I KNOW BY HEART so really that’s not the problem here. Fail again. Just take the damn picture already.

And then I went to a second photographer.

Yes, it’s an expensive solution. But I figured, if I just get as many passport photos taken as possible, at least one should fit the requirements. I can’t deal with the stress of not knowing whether my photo will be accepted or not. And if it doesn’t get accepted, I’ll have to do the entire thing ALL OVER AGAIN. So I’d rather have some extra expenses than all that added stress. I’m learning to accommodate myself. Which rocks, by the way.

When I explained to the second photographer, he turned the computer screen so I could watch and see each picture he took and adjust my face in whatever way I felt comfortable doing. And he helped me get my errant left incisor under control as well (it has a tendency to slip over my lower lip). And it took about 15 tries but I didn’t feel as self-conscious as at the first photographer’s.

Maybe I should go to a third photographer as well, but I’m sort of out of spoons and I think the second set is probably going to fit the requirements. Although I look cuter in the first set, I think. Oh well. I’ll take both of them with me when I go to the passport office.

Cognitive love

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.

Leave your heart unlocked

I don’t often post things without commenting on it or saying why I wanted to write about it. I saw this video in a post from George Takei on Facebook, which in turn was a link to an article on Upworthy… but I’d like to post the video like this. My heart broke into a million pieces in the last 10 seconds.

Neil Hilborn, you are an amazing and courageous man.

Shame

This article has been reprinted with permission on We Are Like Your Child.

I want to test a theory. The theory of shame going away when it’s out in the open.

I seem to have this thing. Which could or might possibly be related to decreased pain sensitivity. Or maybe executive function.

I don’t feel my bladder getting full. Usually the first signal that really gets me to pay attention is “bladder completely full cannot hold it need to find toilet within next 30 seconds!” Mad scramble for toilet ensues.

That or peeing myself.

© Bartlomiej Zyczynski – Fotolia.com

I’m 36 years old. I’m a pretty successful career woman (I can still bluff my way around the gaps in my resume). I have bought a house on my own (mortgaged of course, but still). I have a small but close circle of friends. I’m close with my family. I’m highly verbal. If I wanted, I could easily be seen as a shiny Aspie.

And the last time I peed myself in public was 6 weeks ago. And I don’t mean a few dribbles. I don’t mean “bit of incontinence, here’s some Depends”. I mean not being able to stop until my bladder is empty. Thank god this time the train platform was fairly dark and I was wearing a skirt so only my shoes got soaked. Made a nice squishy sound when I walked away from the puddle in the hopes that nobody would see.

Have I forgiven myself for not being able to feel my bladder until it’s bursting? Oh, years and years ago. It’s just a thing that happens. I can’t do anything about it except frequent toilet breaks even when I don’t feel like I have to go, and sometimes I simply forget to do that. It’s part of being me.

Do I still feel absolutely mortified when I pee myself in public? Does telling this story make me cringe? Did anyone here reading that story feel embarrassment on my behalf? Or even disgust?… Yeah, thought so.

But I’m glad you listened.

Edited to add some background:
When I wrote this, I was incredibly angry. Angry at the idea that shame was just some silly notion that would disappear as soon as it got examined. So I wanted to prove that there were some things that would not be less shameful when brought out in the open, because it wasn’t irrational to feel ashamed of them. That it was actually
normal to feel ashamed for wetting myself as an adult.

But now I feel pride. Pride that I had the courage to come out and admit that there are some things that will always be a problem for me. Pride that I was asked to publish my story on We Are Like Your Child, which is a blog full of articles by bloggers I very much admire. And pride that maybe, just maybe, someone else out there will read this and find some consolation and courage in here too. Bless you all. Wetters and non-wetters alike.

Guess that means I'm doomed ;-)

Guess that means I’m doomed *giggles*

Let’s talk cat

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.

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?

Awkward pose

While researching the second part of my yoga post, I came across a list of yoga poses that mentions “utkatasana” or Awkward Pose. Awkward. No kidding. That brings me to what happened after I overslept for my first yoga class.

After going through all the trouble of buying sports clothes, I wasn’t going to waste my momentum. So I planned a new appointment in the evening, figuring that would make it harder to oversleep (well, unless I was going to take a nap after work). Again, I was so grateful for not having to call but being able to simply book online. I probably would have had to rehearse the phone call in my head about 5 times before being able to call. If I would have done it at all. I know other people don’t show up for appointments too. But I have this rigid rule in my head that says it’s simply NOT OK and that’s why I need to have an excuse and sleeping late is not a socially acceptable excuse and oh my god ANXIETY. So, it felt good to avoid all that.

Tuesday evening arrives and I make my way down to the yoga studio. When I step in, there’s a big sign saying “no shoes” and an arrow pointing to an area next to the reception desk. There are other shoes sitting there. Good, I like clear instructions and this gives me something to do while I take stock of my surroundings. A white cellar with a round, low ceiling and no windows. This is the sort of location the city is famous for and it definitely has its charms, although in all likelihood it’s going to be very hot on this summer evening.

Example of medieval cellar (photo by Puur* events)

I say to the woman manning the desk that I’ve come for my first lesson, she tells me to go ahead and pick a spot. At the back I notice some people so I walk over there thinking maybe one of them will look like they could be the teacher. No, they are changing into different clothes and putting their bags in lockers, so I copy their behaviour. When I’m done doing that I turn around and notice nearly all the yoga mats are now occupied. I start getting a little bit anxious because I don’t know what is acceptable behaviour in a yoga class. Should I take the nearest mat? Does everyone have a favourite spot? Where is the teacher? What should I do? How can I avoid offending people?

As I slowly walk between the mats, trying not to bump into people doing yogaish stuff (meditating?), I notice that even the mat that I’d sort of picked out has a towel lying on it. Oh bugger. Full panic now. And then I do something that I’m still awfully proud of: I walk back to the reception desk and say to the woman: “I’m sorry but I’m feeling a bit overwhelmed. I have an autistic spectrum disorder and new situations make me anxious. Could you help me get started?” GO ME! You’ll have to imagine the flat voice, slight stutter and frowny face for yourself. However, she immediately says, “No problem! Come along, I’ll walk with you to the back where you can get your own yoga mat and then we’ll find a spot for you where you’re comfortable and can see what I’m doing.” So I guess she’s the teacher then. GO HER! This is all kinds of awesome.

During the yoga class I have several more moments where I get a bit overwhelmed, especially when the instructions are very verbal (like “stretch your left hand, bend your right knee, twist your body to the right while stretching out your right hand behind you and then twist your head to the left”. OK, I lost you at stretch your left hand. Which side is left again?). During the sun salutation, a classic flow of yoga poses that I used to love doing as a child, the instructions follow each other so rapidly that I freeze completely. But then I remember. This is yoga. It doesn’t matter if I can’t do it perfectly. I’ll get there in my own time. Breathe. Find a pose that works for my body, instead of frantically trying to figure out what everyone else is doing. Breathe. Stretch. Breathe. I wait out the sun salutations and start participating again when the class moves to the next pose.

At the end of the class, I’m very dizzy so I don’t get up when everyone else does. I’ll get there in my own time. I think this is the most valuable lesson yoga can teach me. The muscle control, the workout, and the stretching are just a bonus. And even with my imperfect execution, I already feel like the child I used to be, just enjoying the movement. Now I just need to find a tree to climb.

Update: apparently the best tree for tree-climbing is in Wallington, Northumberland (UK).