Autscriptic

You don’t look autistic.

Yes I do.

You don’t act autistic though.

Yes I do.

Yeah, but you’re not like “properly” autistic.

Yes I am.

You can make eye contact.

Yes I can.

You don’t flap all the time.

I do at birds.

You flap at birds?

I flap at birds.

Why do you flap at birds?

It would be rude not to wave at them when they wave at me.

That’s a bit weird.

Is it?

But you don’t do all that proper stimming and stuff, do you? Or do you?

Every day. Most moments of every day. See this?

Looks like a tiny bead mat.

Yup. I made it, I made lots of them, for when I lose them. I get distracted easily.

Can I have a go?

Go for it.

It feels nice.

It feels essential.

Why do you do it?

I’m an addict.

But it’s not like proper stimming, is it? I can feel that that’s nice.

Yes it is.

But you don’t look autistic. You’re not all twitches and movements.

Not at the moment.

What do you mean?

At the moment I’m devoting a certain amount of my brain to keeping my legs still and not twitching my nose. Even though my forehead feels too tight.

But if you can stop it, why don’t you just stop all the time?

I can’t process at that level all the time. It takes energy, I’d rather use that energy on something fun.

You’re smiling, that’s not very autistic, is it? We’re talking and you’re reacting?

Do autistic people not smile?

Don’t you, I mean they, I mean you, have less… Feelings? See! You’re smiling again.

No. I have feelings. Lots of them. I have huge empathy. I feel. I’m just not always great at putting out those feelings as visual signifiers.

As what?

Give me a second to think about how I want to say this.

Ok.

Right, when I feel something I react to it. I imagine it’s in a similar way to the way you do, but that reaction is an emotional one, it’s not necessarily an action.

What do you mean?

If I’ve got spare processing power, then I’ll use that to make sure that my face and my hands look like they’re supposed to when you have a feeling. I’ll behave appropriately. If I’m stressed or overloaded, I might look cold and expressionless. It’s not that I’m not feeling, it’s that I can’t project that emotion in a way you can understand it.

So you have to think about it?

Essentially, yes. Not always, at least not so I’ll notice, I’ve been doing this for decades, it’s not new. I do the relevant action almost automatically, but the action is not automatic.

But you move your hands when you talk. You gesture a lot.

Do I?

Yes, not always, but I’ve seen you do it. You’re doing it now. I thought autistic people didn’t do that.

Am I? Have you watched what I’m doing?

Not really.

See how I wave pointedly, and in between waving or emphasising something, I’m rubbing one hand against the other?

Yes.

It’s all just stimming. I noticed people do it. I do the waving to give myself some sensory information to have more of an idea of where my body is, and then I use the gaps inbetween to quickly stim in a way that isn’t obvious. It’s not a social gesture. It’s a designed one.

Really?

Yup.

It all sounds a bit… Exhausting.

It is. I get tired easily. When I was small I never had to be put to bed. I’d do it myself. Then I’d read for hours to try to calm my thoughts enough to sleep.

I do that sometimes.

That’s nice.

Is it?

It must be nice to only do it sometimes.

Oh. Have I offended you?

No.

So when you say that your emotions don’t always lead to actions, what does that mean?

It means I get a choice.

In what way?

Ok, for years I thought people were pathetic when it came to phobias.

Because you don’t have them.

Oh god no, I’m as irrational as the next person. Because they couldn’t choose their actions.

Is this an autistic thing then?

I don’t know. Maybe it’s a ‘me’ thing. But it comes from black and white thinking. I’ve always been scared of cockroaches. I don’t know why. But they terrify me. I think I have a fear that they’re winning on an evolutionary scale. Whatever it is they bring out the fear in me.

I’m like that with spiders.

Like you and spiders. So when I went to a local animal place, and they had hissing cockroaches, I felt the fear. The woman noticed my interest and asked if I wanted to hold one.

That’s horrible.

It was. I said yes. She put it on my hand and I held it up to my face. I’ve never been more scared.

I don’t think I could hold a tarantula to my face.

You could. All you have to do is move your hand and it happens. The woman said I was very calm and that she didn’t think I was scared of them at all. I was terrified. But I held it and looked at it all over its ridged body.

Why did you do it?

Because emotions aren’t actions, I guess, and I wanted to know it applied to all fears. That I could overcome them. That I didn’t have to be held back by them.

There must be more to it.

Because as much as I fear cockroaches, I can avoid them. All my other fears are everywhere.

What do you mean?

Coming here today, to a new place. Not knowing what the room looks like, where the switches and air vents are, how the doors open, who would be here, what they’d say, who they’d want me to be, what patterns might be on the floor, and so on and on, the fear that causes is immense.

You don’t look scared. You’re smiling again.

If I told you that everything in my head is currently in fight or flight overdrive, and I’m surprised you can’t hear the whirring of gears as I concentrate on decoding what you say and how you say it, in an unfamiliar place, whilst maintaining my look of relaxed interest, would you believe me?

I don’t know.

But it’s ok. Because I don’t look autistic.

No you don’t. I mean that as a compliment.

Because you don’t know what looking autistic means.

No I don’t.
And you think not being autistic is a compliment?

I didn’t mean it like that! It’s just… No one wants to be autistic, do they?
I don’t know. Do you want to be neurotypical? I bet there’s awful bits of being normal that I don’t have to deal with. The only difference is the world is designed to make life easier for you. Not me.

That makes no sense.

Doesn’t it? It made sense in my head.

It’s just hard when you look so… Normal.

What do you think autistic looks like?

I… A bit… Not as conversational.

Do you believe me when I say I’m autistic?

I believe you have a diagnosis.

Ah, weasel-words. That’s not answering the question.

I suppose it’s hard when…

When we look like versions of you?

Yes. Have I offended you again?

I’m trying to decide… No. I don’t think so. I don’t think I should be surprised that I look like everyone else when I’m trying to look like everyone else.

I think I believe you do that.

What? Pretend to be normal?

Yes.

I used to think everyone pretended to be normal all the time. That it was some big secret. That you all knew what I knew and thought how I thought.

Why did you think that?

For the same reason you’re assuming I’m just like you. Because I assumed you were just like me. I just thought everyone else was better at it. I couldn’t work out how people did it so effortlessly. It turned out it was because it involved no effort on their part.

Oh.

Anyway. I’d best be off or I’ll miss the school run.

You work with kids? Autistic kids?

No. My kids.

What? I thought autistic people didn’t like to be touched?

Haven’t we already established that you don’t know much about autistic people? Do you really think it’s appropriate to ask me about my sex life?

No! I mean, I didn’t mean to! Sorry. I won’t hold you up. Nice to meet you.

It was an education.

You’re smiling again.

I do that.

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Published by Rhi

247 thoughts on “Autscriptic”

    1. This was me. I am definitely at the neurotypical end of the spectrum but can recognise many of the things you describe in me. I HATE loud noises, they freak me out, unsettle me and have ever since I was tiny. When I started school, I couldn’t eat lunch because the playground was too noisy. I hate making eye contact- I look in the direction of someone’s face but just don’t focus and so I find it very hard to recognise faces.
      I’m not autistic. But your blog entry and the responses you make have made it easier to comprehend what people diagnosed with autism have to go through in a world that’s insensitive and unresponsive to anyone who doesn’t fit the neurotypical model. You’re awesome! Thank you so much for reaching out in this way.

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  3. I love this. The most valuable people I know are those who can challenge my pre-conceived notions in a non-threatening way because they enable me to grow & my whole world seems to expand. Thank you so much.

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  4. This is really well written. I have never had a chance to understand what its like to be autistic or have any sort of neurodevelopmental disorder, but at least I now have little understanding as to how much of a physical task it is for people to act ‘normal’. Thank you for a day trip in your head 😀

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  5. I love this! As I look for a voice as an Aspie and look for a way to help, I know that neurotypicals’ views of Asperger’s diagnoses of “normal looking” people is key to what I want to shine a light on and hopefully change. It’s a problem that hurts my heart: Not only you have to live with the thing, but you have to defend your diagnosis, too? Talk about adding insult to injury… My son and I both have Asperger’s. My mom does, too, but hers is not an official diagnosis–I just know. Thanks for this post.

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  7. Pingback: Autscriptic — Autism and expectations | House of Magpies

  8. Reblogged this on The Misadventures of Mama Pineapple and commented:
    You know that validation thing I talked about in my last post? This, from the autnot blog, was a really pivotal post for me. I’d already been considering that I might be autistic, and by this point my GP had agreed to my request for a referral to the local adult autism service, but reading this crystallised my conviction that following this path was the right one.

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    1. It’s just good to know you’re not alone in experiencing some or all of these things. Even “severes” are incredibly diverse. We really don’t know that much except that there is an unmistakable pattern. I realised I was ASD myself after training as a carer for other ASDs, supposedly with stronger symptoms, but the more I reflect the less I think outward symptoms mean much. It’s the sensory experience, that’s what I think, and we all probably share that.

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  14. Great blog rhi! Fun to read and interesting to see a dialogue form.
    I had a chat about this with my sibling once (who does not have autism) and they are in a really difficult life situation at the moment which will only get worse. Thet were never aware of ‘working’ at appearing normal. Or rather, they never needed much effort to just be. Now they do as her energy is all going to survival. It made me think about this whole ‘trying to be normal’ thing. I don’t feel this way anymore since about a year or two. It feels like I’ve developed and am more comfy in my own skin. I still pick my lips as a way of coping or focusing my mind to think. But I am not so tired anymore.
    My mentor Martine calls this development. That every person, autism or not, when given the right support and situation, can develop at their own speed and order.
    I think maybe this is what I’m experiencing now in my life. And maybe some of what my sibling is experiencing. They have no energy for others. Rightly so considering the situation.
    There is hope. I think that’s what I’m experiencing.
    Just wanted to share that with you.
    Xx

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    1. That’s lovely, Monique. I definitely feel more peaceful the less I fight against my true self. Choosing who I want to be based on who I actually am, rather than on a “version of normal” has been so liberating.

      It feels like I can breathe for the first time 😊

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  18. The bit about having to expend so much energy and being tired – I wish my daughter’s teachers could actually understand this! I constantly get asked (in an accusing way) “Is she getting enough sleep? She was complaining that she was tired again in class today.” I have explained it to them so many times, but they just don’t get it.

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    1. It’s so frustrating when people don’t listen. Tiredness is my most common “symptom” and takes careful managing. I need the understanding of those around me.

      You have my sympathy.

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    1. We all make assumptions all the time. I don’t think theory of mind pondering apply to only autistic people but to all people. It’s a cognitive bias we use as a heuristic to process the world in a timely manner. The way I see it it’s about survival. If you are interested in a more in depth look I have detailed my full (and very wordy) thoughts on this here:

      https://rootlessintrospection.wordpress.com/2015/01/24/what-are-we-afraid-of-why-we-label-and-shun-the-others/

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  23. i would love to leave a pic of me stimming to show how much i love this, but as i cant ill do my best to use words. no one seems to get how exhausting it is for me to pass everyday, and to take part in basic human interactions. I’m lucking to have a teacher with a aspie daughter who helps me feel like i dont have to pass. i now have a bf who thinks my stimming is adorable, and dosent care if i happy flap instead of saying the words thank you. i just wish my language could be spoken as much as NT language and i dint have to translate all the time

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    1. Yes! The people who meet us half way are brilliant 🙂

      Being able to pass is a useful skill, but it’s really important to know that that’s all it is. We can be ourselves as well as imitate everyone else! That’s twice as much as most people. But it is exhausting.

      Thanks so much for your comment, it’s made me happy too 😊

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  24. I needed to hear this. I look very “normal” most of the time so when I don’t, people are shocked and even scared. I might show this to some of the people I deal with very often. Thank you for writing it.

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  26. So what are autistics supposed to look like? Sheldon Cooper or like Alan Turing? I’ve had some people tols me I can’t be an aspie because I’m female, like ffs… gee I must have missed the memo that obviously was in the users manual for every new body of female type that i probably also missed.
    At best I’ve had a few people IRL confirm i “could be” a little on the spectrum when I’ve showed then the results and screenshots of the aspie wiring of my mind. Whatever. At least i try to do my best to dress in a way that is comfortable and leaves people questioning. Super soft clothes probably in weird colors, always really lose fit unless I’m running? Check. Dark shades indoors? Check. Headphones always on and listening to something? Check. No facial recognition of anyone? Absolutely. Observing humans like an animal species? Check. Not being fan of eye contact? (blank stare… yes, also macular degeneration so ain’t gonna happen). Dislike of being involved in empty small talk by strangers? Ayup. I feel like I’m obvious a mile away, or how far typical humans can see again…

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  32. Reblogged this on rootless introspection and commented:
    I am not aware if I have any stims but other than that it’s very much on point.

    I think it is an autistic thing to be able to surpress one’s initial fear reaction (or any other reaction based on emotions). Society asks us to just deal with neon lights, this horrible smell, the background music, eye contact. Whatever it is. And often it causes something very akin to physical pain. Expressing that pain is often social suicide. I’m sure there’s other marginalised group with the same issues.

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  33. Hello.

    Thank you for an entertaining and insightful dialogue, not to mention educational.

    I have recently experienced something very similar myself, being asked “But are you autistic?” to which I can only reply: “Well, that is what allegedly/assumed neurotypical psychologists have decided after using tests designed by neurotypical researchers, so if you trust that they know what they are doing, I guess that means I am autistic (to some degree, manner or form)”.

    Perhaps I should direct the person asking the question to your text? He is a psychologist, with a degree and all that, after all.

    yours,
    Rikard, former schoolteacher

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    1. Thank you for your comment, Rikard. Very interesting. I have been heartened to find that some Autism researchers are autistic too, and hope that there can be a drive to support and encourage “those in the know” to be at the forefront of support and planning in the future. We need representation from all neurotypes in all walks.

      There’s a reason we’re all here, each of us have strengths and weaknesses, and that’s what makes humanity so much richer and more interesting.

      Rhi

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  34. Reblogged this on notjustmama2ca and commented:
    An excellent read! Things I often see in my son, without recognizing this is what I’m seeing. And… seriously… what does its mean when someone says you (or he) “doesn’t look autistic”? I’ve never noticed they have a specific “look”!

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  35. Thank you for this!!! I have 7 beautiful kids 3 autistic…..these replies…I TOTALLY UNDERSTAND!!! They make sense to us!! I can’t thank you enough to make ppl understand that it’s ok with my son slaps and talks back to the birds!! Thank you!!! I’m in tears because not to many understand!!!!

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    1. Thank you! Sorry for making you cry (even if it is in a good way). One day the world will understand us all, and it will be a better place for accepting all our differences 🙂

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  36. > “But they terrify me. I think I have a fear that they’re winning on an evolutionary scale.”
    Don’t worry. Cockroaches are consigned to have a small size because of their respiration system functioning poorly at large sizes, so their bodies and therefore brains cannot evolve larger than a certain size. We could easily launch into a posthuman technological singularity era long before cockroaches evolved the lungs necessary for big brains.
    > “And you think not being autistic is a compliment?”
    AhaHAAA!
    > “The only difference is the world is designed to make life easier for you. Not me.”
    :l
    > “I used to think everyone pretended to be normal all the time. That it was some big secret.”
    Yes.

    I like to use http://rationalwiki.org/wiki/Category:Cognitive_biases and https://en.wikipedia.org/wiki/Perceptual_control_theory for modeling other people.

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    1. Hi, Phenoca – thanks a gazillion for the URL’s to the wiki-sites, just by quickly reading the content I’ve learned things already.(oh my, think what can happen after I’ve thorougly read it all. 😉 😉 )
      However, I’m not the smartest puppy on this planet, hence my question:
      Took me a while to figure out from which point of view was written, and I came to the conclusion that it’s from the POV of the *I*-person. (loosely translated it’s from MY POV.)
      Would you be so kind as to confirm or deny this?
      Thanks,
      Jos.
      (my grammar is even worse than it normally is, it gets better as the day progresses. 😉 )

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  38. THANK YOU for this. I have narcolepsy, and I want to write something like this and print it on business cards. That way I can just hand it to them and not have to have this conversation over and over again.

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    1. Sounds like an excellent plan! A lot of people don’t really think about how many times you have to have the same conversation, just to be understood. It can be exhausting.

      Really glad you identified with it too 🙂

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  39. Very nice example. Indeed.
    Since I had my diagnosis only fairly recently (about a year ago), I have read and watched alot about it and it all makes so much sense and explains so much, about myself and about so many misunderstandings and tricky situations I got into, that only happened because I thought that was how I was supposed to react (or overdo it, because you get confused, and then oops, you get stuck and it all goes wacky). But I too now have to face these kind of questions. Family even, who without words pull a face of disbelief so that even I can easily understand what they are thinking. But, yes, I am. And yes there is a lot I can. I have accumulated an enormous database and I am bloody good chameleon.

    This situation requires red, okay, I’ll be red. That person needs purple, okay, I’ll be purple. And over there orange is needed, okay, fine. And then in my head I am stuck in a rainbow soup I have to fight really hard to make sense of, mostly I do that when I am on my own. Just because one doesn’t see it, doesn’t mean it’s not there.

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  41. So perfect! You’ve articulated more fully and successfully what I’ve tried so hard to explain to doctors, family, and even many “friends.” I may print it out and carry it as well!

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  42. Pingback: You don’t look autistic – En kattslavs dagbok

  43. I really enjoyed this! This was very satisfying to ‘hear’ (yes, it was a type of texture–that of a way of thinking/being) what others experience that I do, too. I’m old enough that those of us who could pass went unnoticed as you so adroitly expressed. Ye Gods! The amount of processing power just to keep up the appearance (I’m a school teacher). Fortunately I’m eccentric enough that the ‘oddness’ gets passed over: Hawaiian shirts have such delightful visual stimulation. My daughter, who is extremely sensitive, says its exhausting to live with me (drat).

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        1. Hi Joss 🙂 you can copy a portion of it, and then stick a link to my blog underneath for those who want to read the whole thing. Is that ok?

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  46. Thank you for writing this. I know not everyone’s experience with autism is the same, but I feel like you gave me a glimpse of what it might be like, at least a little, for my little girl. She can’t verbalize her feelings or thought processes at all yet and I always feel so lost trying to figure out what she needs or what is making her uncomfortable or unhappy. I appreciate you sharing your perspective.

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  47. Rhi, The first time I read this I was in awe. Awe of learning how many of my own behaviors are neuro-diverse normal. I am actually normal in enough way to pass as merely odd, until I start dancing or forget to tone the puns/jokes/humor or stop melting into the wallpaper. But your writing here helped me to be defined as another variety of normal. I don’t know how many times I’ve read this piece of yours–more than several. It’s a bit of a touchstone–contextualization for rubbing my fingers together or over fabric or art; another reason why I’m twitchy fidgety, and reading this was the first time I understood why I am so much in my head with my brain overactive to exhaustion. Thank you yet again.

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  50. What a wonderful article and I am pleased that you have children and I am pleased that here some things have been made clear. I have tried to read and understand all the comments, but the translation is difficult and my understanding is certainly very limited. It begs the question if I need any understanding at all for something that, in my view, has no need to discuss…don´t get me wrong I understand the problems, but for my person there are no problems.
    Honestly, I wonder, what the whole thing is about? Why should people pretend to be someone else, when they do no harm to others? Just because they have the ability to do it? To play the clown? Even though today there are more and more people putting on a mask….this is lifestyle? Life is not about being an actor, life is just about being you. And frankly, I do not care if the people I love behave differently than me. On the contrary, perhaps it frees me from the constraints of behaving according to the norm….i love people behaving different…..Who wants a unified world of genormteen gray men? Momo is asking.

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