Re-thinking things through an Autistic filter

Since being diagnosed with autism in my mid-30s, I’ve been re-thinking a lot of things.

I’ve spent a lifetime of trying to appear to be the same as everyone else. I’ve been watching. I’ve been studying. Every book, article, overheard conversation, brings me that little bit closer to passing for normal.

I’ve spent a long time thinking about who I ought to be.

And I thought you were all doing it too. Maybe not everyone. Maybe a few of you were in on the secret, but I assumed, as we all do, that the way I see the world is the way everyone does.

Now I know that when I don’t understand you, it’s not that I’ve missed out the rules of the game, it’s that you’re playing Monopoly whilst I’m playing Rugby Union.

It’s not that I’m coming at it from the wrong angle, it’s that I don’t have the… Whatever-it-is to understand you. I don’t get it. I can’t.

And that’s ok.

That’s what I’m coming to terms with. It’s ok. It’s ok that I don’t want to make small talk, and it’s ok that you do. There will be times when I will. I hope there will be times when you won’t.

I’ve been working on analogies. I like analogies. They’re pictures that you can lay over life to try to make sense of it.

Since finding out who I am, I have been struck by several things:-

When you try to describe what being Autistic is, everyone says, “Well I do that too.”

People say this because it’s hard to describe being autistic. Often you end up clutching a collection of behaviours, such as social exhaustion, hating the phone, wiggling your feet.

And other people say, “I don’t like using phones either, and I wiggle my feet, and I’m shattered after a night out, maybe I’m a bit spectrumy!”

You look at them and something inside dies a little, because you’ve not communicated what you wanted to, and you really don’t want to have to tell them about the time when you were walking down the corridor, and suddenly there was too much noise from all the people, and your head started spinning, and the lights were wrong, and the space was wrong and everything started shutting down on you, because that behaviour makes you vulnerable.

So you smile (because that’s what people do), and you try to stop the conversation, because now you’re upset at yourself, and you can’t maintain eye contact well when you’re upset.

(I say eye-contact! I mean it’s hard to even look at people’s noses, or anywhere near their faces, when it gets too much)

It’s ok. It’s ok that I cocked up because I focused on the behaviours and not the causes. It’s hard. It’s complicated.

How do you explain to someone what it’s like to not have something that you don’t even know exists?

It’s like trying to describe silence to someone who has always lived their life beneath a roaring waterfall. They won’t hear the water. They’ll take it for granted. They’ll say, “This is silence.”

How do I describe a lack of social processing to someone who doesn’t know they do it?

How do I describe how much active processing I put in to everyday tasks, which they can happily do on automatic without noticing?

Did you know that when asked a complicated question, most people will look away from the questioners face, because it frees up processing power? Processing that they don’t even know happens. They will be studying expression in great detail, without knowing it. It’s like having a computer that just provides the answers.

My computer tells me what it sees. It gives me a literal view of the face and its changes. I can use these to compare to what I have learned. I can use my stored knowledge to try to work out what you are thinking, what I should do, what it is you need from me.

But my computer doesn’t give me the answers. Mine gives me problems to solve.

When you’ve spent a lifetime pretending to be normal, you shouldn’t be surprised that people think you’re not autistic.

People have told me how normal I am. How they don’t see any part of me that is different. I think I should assume this is a compliment. I’m sure it’s meant as one.

To me it’s a mirror showing just how much effort I have put in to being someone socially acceptable. Each aspect of me that is deemed “presentable” is an effort. It’s a sort of me. It’s a kind of me.

But it ought not to be.

Oh dear lord the self doubt. I never thought I could accuse myself of not being who I deep-down know I am, in so many inventive and insidious ways.

Post-diagnosis has been a roller-coaster of elation and depression and acceptance and reluctance and “I get to be me forever?!” (Said sometimes joyously and sometimes in pain).

I am autistic.

I am an autistic woman.

I am an autistic mother, person, wife, daughter and so on and on and on.

I’ve taken against using Asperger’s to describe myself, even though it’s accurate, I think for some reason it feels euphemistic.

I don’t like euphemisms.

I don’t want a sanitised, socially acceptable me anymore. I want to be the me that I am. The me that I have always been.

Because I am socially acceptable. I might be a bit peculiar if I let it all hang out, I might seem a bit less self-assured and a bit more terrified, but that’s ok, isn’t it? Other people get to break those rules? I may not be good at breaking rules, but maybe I can add new ones, a few sub-clauses here and there.

It’s what I’m striving for. Being a bit more me. Now is the time.

So today I didn’t hide my hand in my pocket when I needed to stim. It’s the little things.

Tomorrow I will contemplate world domination.

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Published by Rhi

228 thoughts on “Re-thinking things through an Autistic filter”

  2. Well said. I am an autistic woman (diagnosis last year). I get it. The problem about explaining what autism is, IS the problem. I used to practise smiling until I got it right – or so I believed. Did alot of “people watching” so I could copy them. I did not know that others could automatically know what to do.
    I did not know there were others like me. Thank you for this.

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  3. Oh my goodness me. This is it. This is the perfect, spot on description for me. Thank you for expressing what I’ve been unable to. Also diagnosed in my mid-30s.

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    1. You are so very welcome! Thank you for letting me know. It’s a very strange feeling to realise that you are completely normal for how you are built, rather than an odd version of everyone else (if that makes any sense at all).

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  4. Well written, well put. I especially recognise the “well I do that too” and it is so frustrating even though they are trying to be kind! Thank you.

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    1. It’s definitely one of the things I’ve struggled with most. It’s so hard to argue against.

      We all know they’re trying to empathise and make us feel better, but it hurts and makes us feel like they think we’re exaggerating our difficulties.

      There are times I’ve wanted to shout, “You wouldn’t say to someone with severe hearing loss, or reduced sight, ‘Ooh I wear reading glasses and sometimes have to ask people to repeat themselves!”, or to someone in a wheelchair, “I stubbed my toe last week and had to hop for the rest of the day.” But I don’t think saying that would be helpful.

      I do think it all comes back to the Waterfall analogy. Because it’s not something simple to understand, like a sense or a visible ability, it’s something they find it so hard to comprehend what it’s like not to have.

      The last thing we want is to put people off trying to understand us! We want people to be kind!

      My most exhausting time of this came after telling someone close to me. They went on and on with, “But we all do that.” Over and over and over.

      But at the end of the conversation they finally said, “People must be utterly exhausting for you.” And there was a ‘hallelujah!’ Moment. They may not understand everything (and who does), but they finally saw that the effect on me was real.

      That’s all we want really. Acceptance.

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  5. Are you on Twitter or Facebook? I would love to follow you daily for any insights, comments or thoughts you have! I’m a “people person” mom desperately trying to understand and guide my 18-yr-old son who was diagnosed at 16. Everything you say gives me insight into what his experiences might be like, AND how to be more sensitive to him. (He’s not talking about it; he’s an 18-yr-old boy… oh yeah, and on the spectrum!) Thank you!

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    1. I’ve recently joined Twitter so there aren’t many posts yet but there will be more!

      I have got five articles lined up to post here too, and will tweet them when I do. So please feel free to follow me on @outfoxgloved on Twitter.

      It’s so great that you’re trying to see the world through his eyes. I think it’s particularly hard when you’re really sociable yourself.

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  6. Urgh. This made me cry. I just read the Rosie Project. That’s the first I’ve ever heard of aspergers. Reading more, especially this, I’m the same. Not sure what to do about it really.

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    1. Don’t feel like you have to do anything 🙂 it took me two years from first having that realisation to even thinking about chasing up a formal diagnosis.

      Sometimes it’s enough to just begin to understand who you are and how you function.

      It’s all about making your life the best it can possibly be, and not beating yourself up because you compare yourself to “everyone else”.

      Hope you’re ok.

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  8. Autistic women often get diagnosed very late compared to boys/men, because women just have to be good at social situations, so we, who don’t get it, copy everyone else’s behavior. I’m lucky being 19 and diagnosed last year, i can’t imagine what it would be like going just another year without knowing what’s wrong with me.
    When i tried telling my boyfriend what autism is, he also replied: “But, i do that too”, and it was so frustrating. Eventually he understood it. But the whole: “i do that too”-thing is really, well, annoying.
    I always get a little bit happier when hearing other autistic people’s stories, even though i know i’m not alone, it’s such a relief.
    Thank you for writing this, you’ve put everything i, and every autistic person, feel into words.

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    1. Thank you. I do wonder how differently my life might have turned out to date if I’d known earlier. It’s so great that people, particularly women, are now getting diagnosed.

      Hopefully it won’t be too long before slipping through the net is a thing of the past.

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    2. Please excuse those of us who don’t get it yet 🙂 – we might say “But I do that too” and I guess that’s not meant to diminish your experience. It’s us trying to empathize, normalize, relate and understand by comparing to our own experiences. it’s where “our” brains go, and I for one am hoping to learn and internalize that “people seeing things differently” can also be a very literal term- not just imagining yourself in someone else’s very different shoes that will never fit. Our brains are amazingly diverse (I yell to no one!)!
      You are a year older than my son who was diagnosed at 16, and I have so much to learn. If you are on social media and don’t mind “followers”, I’d be grateful to listen and learn (while promising not to ask a million questions)! Thanks for your comments above.

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      1. Don’t worry about asking questions 🙂 I’m on Twitter and have a page on Facebook (the links are on the article, let me know if you can’t find them).

        The vast majority of people who say, “I do that to” are being kind and empathic. I think the problem arises because it’s a type of empathy that work for neuro-typical brains, but not for ASD brains.

        It’s a miscommunication. Don’t feel bad for having done it. We’re used to miscommunication. I was thinking about this last night. I might write another article today about it.

        Thank you for your comment. And as I said before, I’m more than happy with questions, how else will we all learn about each other? 🙂

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  12. Thank you so much for sharing your thoughts. I love your writing style. It is good to hear that you are deciding to be more yourself rather than hide who you are away. When we continually hide who we are we often end up hurting ourselves. I am conducting research on the topic of confidence and would love to have you participate by way of filling out a survey I have created. Here is the link if you (or anyone else) is interested in taking it. https://melaniefellmanwrites.wordpress.com/2016/04/08/a-survey/

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  13. Pingback: Re-thinking things through an Autistic filter — Autism and expectations – What Aphrodyuti Sees

  15. Beautifully written. I have always felt different than everyone else and now in my late 30’s, I feel it more. I could so relate to what ypu were saying. I’m not sure what it means about me but it has got me thinking a little differently about myself. Thank you for sharing life from your perspective.

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    1. I think it’s about accepting who you are and finding ways to work with yourself, rather than berating yourself for not being like everyone else.

      And that doesn’t just apply to autistic people!

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  19. Hi Rhi,

    Wonderful article, thank you so much for sharing.

    I volunteer with a charity working with young people with autism (and/or learning difficulties) with a large variation on the ‘spectrum’. One of the things I love about the charity is it’s not about labels or the medical terminology; Our work is about people first and foremost and empowering, collaborating and cooperating as equals on our clubs and social development projects.

    Much of what you describe about social processing and the exhaustion of understanding social cues, questions, and expectations applies to not only our members but some of my friends. My wife, although introvert rather than autistic, similarly describes the exhaustion she feels engaging with other people and needing to recharge her batteries. It’s easy to take for granted the things we don’t even think about.

    Unfortunately society are quick to single out anyone who is ‘other’ – like you said, you have to mirror other people to pass for normal – and especially with hidden disabilities where there is so little understanding of what is going on under the surface. Personal perspectives like yours go a long way to raising awareness and encouraging understanding and compassion. On a side note, I wonder, have you ever read The Curious Incident of the Dog in the Nighttime?

    I’m glad I found your blog today and looking forward to your updates. I’ve just read How To Make An Autistic Person Normal too which I love for your clay analogy☺️

    Liked by 7 people

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    1. Thanks Dan. Sounds like a great charity.

      I read “The Curious Incident” years and years ago when it was first published. Long before it even occurred to me that I might have ASD too.

      I hope that the more people understand, the more awareness there is, the more we can all just be people.

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  20. This is lovely. I am not sure if i am autistic, but the way you described and out it down so accurately, I sometimes my find myself in the same place.

    Keep up with the good work!

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  21. Pingback: Great Article for Autism Awareness | alejaespanablog

  22. Its not showing in mine as well 😅
    I really liked this post. It’s lovely. I’m not sure if I’m autistic, but I’ve found myself in a similar situation. Keep up with the good work!

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  26. I really like this post. I agree that autistic people can come off as normal. My boyfriend’s little sister is autistic and she seems normal, but from living with her for so long I’ve noticed some things about her that are different then other kids her age.
    1. She’s quick to cry.
    2. If she feels a certain way, she doesn’t always speak up about it. Ex: My boyfriend made her a pancake and she hold’s her plate out to him to put syrup on it. He then put’s a drop probably about the size of a dime on her pancake. He did this because he wanted her to speak up and not be intimidated by him to ask for more syrup. She ended up not asking until his mom then says, “Selena do you want more?” She replies, “Sure.” truth is, she wanted more from the beginning she just didn’t want to speak up and ask for it.
    3. When she eats, sometimes the fork from her plate to her mouth (with food on it) her hand and head kind of jerks/twitches but not overally noticeable, only if you pay attention.
    4. She is a GREAT listener. You ask her to do something and she does it without even questioning it.
    Off the top of my head those are a couple things that she does that I’ve noticed is different about other kids, other then that, I think she’s pretty normal.

    Great post, I really enjoyed reading, and I look forward to reading more about Autism!
    Xoxo, Kate

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    1. It’s interesting isn’t it? Sometimes I think it’s like one big iceberg. You get to see some little behaviours that don’t quite make sense, but beneath the surface there’ll be something behind all of them. Thanks for your comment.

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    1. It’s sometimes hard to tell what is and what isn’t. The spectrum is so wide that it encapsulates so many things, but sometimes I still do weird things just because I’m a person, not because of the autism 🙂

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  30. Thank you for being so brave and posting this. You should never be afraid of being yourself. So what if people look at you a little funny? So what if they don’t understand? I don’t always think that we’re meant to understand each other. Frankly, it’s our differences that make us great. It’s our differences that make some people creative and others analytical. These are the things that make us individuals. So just keep being yourself. One day, the rest of the world will catch up with you.

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    2. Yes. It’s improved it enormously.

      Knowing has been the thing that’s given me permission to start thinking about what it is I need to make life easier.

      Knowing has meant that my wonderful husband understands me even better than before, and that when I do certain things, he knows it’s not because of him.

      The adult years when I didn’t know, left me very vulnerable. There’s a problem for people who seem normal but are utterly trusting and literal. I look back at my life, in particular my 20s, and I think that I would have been a lot happier and safer if I had known.

      The things that sometimes weigh me down about knowing, would still be there if I didn’t know. I’d still have the same issues, I would just be trying to squash and hide them, instead of dealing with them and recognising them.

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      1. I actually completely understand that. It gave you license to be you. I wish you could have been who you are with or without that diagnosis though. They want everyone to fit in their neat little box of what’s considered normal. I’m not even sure who they is, but they exist lol. I can see it even more now that I have a child. It’s especially evident in our educational system.

        I saw on LinkedIn where a company was actually searching out people on the spectrum because of some extraordinary skills with numbers. They were designing a special interview process that was spectrum friendly as typical interview procedures are so counterintuitive to those on the autism spectrum.

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        1. Sounds like a perfect process for me! Although I know lots of people on the spectrum can’t do numbers at all.

          I think so much of it is simple not comparing myself to everyone else. That’s where the danger lies.

          The wonderful Sarah Hendrickx described it as finding out that you’re not just a bit crap at life, you’re able to do different things.

          So without knowing, I would still (to a certain extent) be thinking that everyone else does and thinks the same as me, and they cope fine, so why aren’t I? Now I know that I can’t compare myself like that.

          And yes to no neat little boxes! Not for anything. Wouldn’t the world be a wonderful place?!

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  33. I’ve been pretty certain that my daughter is on the spectrum for years. It made me worry for her and when I’d tell people they’d seem concerned too. Years later I’ve learned about Autism Acceptance and how it’s not something to stress about. She is different but different is wonderful. She should pace, jump, spin because it makes her happy . She doesn’t want to look people in the eye because it makes her uncomfortable. I tell her just glance quick just to acknowledge the person. I’m amazed by the person she is and will always be her cheerleader. Thank you for posting this because you inspire me.

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  34. Well said. I am a synesthete, and it is so hard to communicate to people-what it’s like, and things like why the numbers 4 and 6 just don’t work well together. I’ve spent so long pretending that I actually like math, but in reality, writing is so much better. Writing allows me to have twenty-six different units to arrange in different ways, and letters actually usually work well with each other. Numbers are different. There are only ten digits, and some of them disagree with each other.

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    1. Joni! I have that too! I love numbers, they all have shapes and feelings associated with them (from boring to exciting). Combinations create new shapes, and so on and on.

      Numbers are great, but words have it too. Their shape and flow and sound make me genuinely happy.

      Thanks for sharing! Just another thing that makes us utterly normal in the best of ways.

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      1. Wow! So glad to see that I’m not the only one!!
        What types of synesthesia do you have?
        I have lexical-gustatory, a mild form of mirror-touch, and the one where numbers have personalities.
        When I was a little kid, I thought that everyone knew about numbers’ personalities, words’ flavors, etc.

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        1. Numbers having personalities and shapes (the bigger the number, the more complex it gets as I have to take into account ways to create those numbers as well as their simple form).

          And yes to thinking that everyone had it! I remember trying to explain why the seven times table was really the easiest. Because it flips back and forth between different categories. And getting this blank expression back!

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    2. I still don’t know why but as a kid I had a problem with distinguishing tens from hundreds from thousands. I somehow eventually over came it but numeral anomaly’s returned later in my life with a vengeance and at a time I could ill afford it. I like to call it “binary dyslexia”. It’s like somewhere between my cognitive brain and my perceptual brain opposites swap places, which is a death sentence to a programmer. One would think that a numeral system with only two digits it would be easier but anomalies in thought processes are relative and the mind doesn’t care in what base it is expressed.

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      2. Wow….there are so many different things that can ‘go wrong’ with the mind, and that are labeled as ‘disorders’.
        However, I think that the reason people hate their ‘disorders’ is because it makes them different from everyone else. People that label them as ‘disabled’ are just jealous of their special abilities. 🙂
        Love who you are and the way your mind works, because you are officially really cool in my book.

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  36. This was really interesting! Thanks for taking the time to gather all these thoughts. I’m not autistic but I can COMPLETELY relate (from an ADD perspective) to people saying, “Oh, I have such-and-such symptom, as well” and, “You seem normal to me”. I can understand the feeling of having been dismissed when you describe a seemingly small thing that can shake your whole world, and to someone else it may have inconvenienced them once or twice, and they perceive this as even.

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    1. I’m glad you could relate… Well… Not “glad” but you know what I mean!

      It’s hard isn’t it? It’s something said when they’re trying to be kind, but it just leaves you feeling deflated.

      We need something new to say.

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  39. I get it … I don’t have autism but I get it …

    I live with type two bipolar and Marfan’s and I know exactly how you feel. I know that oh so familiar speech of “Everyone experiences what you experience and everyone cope oh so well with it.” I’d hate to break it to them but they have no idea what I experience. One day in my shoes and they will be lying in a fetal position in the corner, crying for a shot of morphine and that’s just from the Marfan’s. I’d love to see them cope with a head that has a mind of it’s own, propensity to paranoia and a love for thinking up anxiety inducing scenarios, to name but a few.

    Something recently snapped in me and it made me feel very much the same… “This was not my doing or my wish but it is me. You either accept me or you don’t, the choice is yours. My happiness will no longer depend on what you think, but on what I need.”

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    1. It’s amazing how many invisible conditions it covers.

      So many people say it in a well-meaning way. They want to make you feel better, they want you to feel like they understand, but instead it makes you feel dismissed and belittled.

      There’s a major miscommunication in there somewhere. We need to find a new way.

      Thank you for sharing your experience with me.

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  44. Love this…’ So today I didn’t hide my hand in my pocket when I needed to stim. It’s the little things’ – I have started to stim openly, it helps me calm down and concentrate.
    Thank you for sharing

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    1. It’s great isn’t it? It doesn’t hurt anyone. The vast majority of people don’t even notice, but it makes life that little bit easier, so it’s daft not to do it.

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      1. Your words reflect my thoughts and feelings so well, it’s strange coming to terms with the fact that the reason we have always felt so different, is because we are. I always thought under the surface everyone was as unsure and processing things the same way as me…its both a relief and a revelation 🙂

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  49. Thank you for sharing this. I have a son who is Aspie and its hard to describe it to people. Sometimes they think I am making it up b/c he seems so normal most of the time. Sigh

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  50. I’m glad you’re now free from your disease, and by free I mean: you don’t need to pretend anymore. You don’t need to be ashamed of those things that makes you vulnerable. You’re much more than that.

    Be comfortable with who you are. Who cares if others get uncomfortable by that? It’s their problem. You deserve to be you, and to be with people that understand you.

    Be magic,

    Nícia

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    1. Thanks Nicia 🙂 it’s a condition rather than a disease (autistm makes me have to say the right thing!), but I agree with everything else you’ve said! Thank you for your kind words.

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