Autism Is…

My good friend over at The Silent Wave responded to a twitter request for the hashtag #autismis with this great post and I wanted to add my voice too because autism is a widely misunderstood condition that really deserves not to be. 

The criteria for an autism diagnosis is complex because it affects us, as individuals, in profound and unique ways. And yet I have noticed that people are reluctant to ask autistics how they are personally affected. Maybe out of lack of knowledge, maybe out of embarrassment, maybe because they are wary of being asked for support or maybe because they just don’t know the questions to ask. I don’t know. But as being misunderstood can be one of the most distressing aspects of being autistic I’d be ever so grateful if more people would put any preconceptions to the side and ask questions. 

See if this post helps for you to get the conversation started! 

For me personally – Autism is…

… having had to study reading body language, tone of voice and facial expressions as a kid by watching others, figuring it out and practising in front of a mirror. Still misinterpreting the subtleties. Being gullible. Assuming that someone being sad or angry is my fault and getting highly stressed at not being able to resolve that. Being completely clueless as to someone’s intentions towards me. I honestly find it almost impossible to know if someone wants to be friends with me, can’t stand me, wants to end a conversation or is flirting with me. This can result in crippling paranoia. 

…not undertaking anything (parenting, making health/lifestyle changes) without thoroughly researching it first but being unable to learn, research or revise anything that doesn’t hold my complete attention. I read six books on parenting babies before the birth of my first but didn’t read three of the four set texts for my Literature A level; and while I might spend months reading obsessively on, say, gut health I didn’t revise at all for my undergraduate finals. 

… obsessively cleaning or tidying a clothes drawer / under the bed / the bathroom cupboard half an hour before a guest turns up while panicking about the messy pile of washing up / living room in disarray / floor in need of vacuuming. 

… crying at sappy songs, Disney movies and happy endings in books. Not being able to watch the news or see certain films because of the inevitable nightmares that may still haunt me months later. 

… not being able to remember a basic sequence of verbal instructions, a phone number, someone’s birthday, or even memorise a simple musical phrase (I have a music degree). Often speaking or writing complete gibberish because I can’t access the words or put them in the right order. If I have to try and push through this state for an extended time or under stress I may not be able to speak at all. 

…walking into walls, missing my mouth with a glass, tripping up, mis-estimating how quickly a car is moving towards me (I’ve been in several road accidents and so have not learned to drive), not knowing how physically close I am to someone, being unable to throw or catch a ball. 

…being caused physical pain by the smell of strong perfumes, peoples breath, sweaty dogs, mould, washing powder, fabric conditioner and air “fresheners.”

…being thoroughly nauseated by stickiness, oxidising fruit, other people’s or animals saliva.

…being unable to function at all in busy, noisy, brightly lit places such as department stores or even some museums. I become quickly overwhelmed; unable to do much but find somewhere to sit and focus on trying to breathe and not be sick. 

…not being able to distinguish between concurrent conversations in a room. I guess that for most people it’s similar to being in a very noisy and echoing indoor swimming pool or gym hall. 

…finding all social transaction  exhausting. I want to be able to do it but every aspect of it is tiring. I’d like to spend time with friends, go to parties, go out spontaneously or even have an easy conversation in the street but all of these often cause a tailspin of anxiety due to the communication issues as mentioned above and are compounded by changes of plan, lateness and the potential addition of other people in the mix. A four hour shift at my pharmacy job leaves me in the state most people are from an eight to ten hour shift. 

… having behaviours that can seem childish. Jumping up and down when excited, doing a happy dance, hugging people enthusiastically, running away under stress. And crying. Always crying! 

…being misunderstood and talked down to all the damn time. I think I know why. I ask a lot of questions because I like to be sure of things, and I have a perplexed expression when I’m listening to the answer because my brain is a) filtering out other distractions b) figuring out the speaker’s facial expressions and c) jumping around making multiple connections to other knowledge or ideas I have. But I have a really high IQ. And a wide knowledge base. So it’s really frustrating when someone dumbs stuff down for me, doesn’t answer the question I asked, gives me an opinion rather than fact or just can’t be bothered to elaborate. 

…being great at acting for short periods of time. Because it’s easier to smile and tell people you are fine than it is to explain all of the above all the time! And because I don’t know if you have the time or emotional energy to take it on board either. And because the more stressed I am, the less I’m going to be able to find the words to communicate how I’m feeling anyway. So, yep, I’m Fine Thanks! 

If you’ve made it reading all the way here – Thank You! You are a most awesome human being and if I was with you I might be jumping up and down and hugging you right now!

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26 thoughts on “Autism Is…

  1. Yes! I understand because I too behave in similar ways and it all becomes too intense trying to explain it to people, especially in the ‘ too much information”response age.
    I feel that what I find difficult/annoying about myself and how i relate to the world is perceived by others as being trivial, petty e.g. I gag going down the detergent isle in the supermarket and have to hold my breath until i’ve reached the end.

    In my twenties at Uni a woman , younger than me, smiled and said something to the effect that I was like a little girl. She didn’t say it nastily but with a warm sort of amusement… that was how i saw it… but with my inability to ” read people’ who knows what was really being said?

    You’ve expressed so well what I find difficult to put together and I thank you for your patience in addressing ‘ autism is”. It has given me much to think about and confirmed that I am not alone in many of mii idiosyncrasies.

    Liked by 4 people

    • I’m so glad you liked it, thank you! I’ve been wanting to write this post for months but couldn’t get my head around it until yesterday. And today I’m kicking myself for the things I missed out!

      And you’re right, when reading people is difficult it’s hard to interpret some of the most throw away lines, leaving you still trying to figure them out years later.

      You’re definitely not alone!

      Liked by 3 people

    • The “like a little girl” comment is interesting to me: I was just diagnosed as autistic at the age of thirty-eight, at the urging of my wife of four months. She has a very childlike aspect in much of her behavior (I find it to be one of her best and worst attributes), and sitting in on some of my therapy sessions, my therapist has mused that she herself could be autistic—I’m sure we’ll spend some time in-session delving into that, but I think she might identify with as many of these bullet points as I do.

      Liked by 1 person

      • Interesting times for you! My diagnosis was a year ago and I’m 44 now. So much starts to make sense after a diagnosis!

        Being childlike can definitely be a thing. It’s not the same as being childish, more of an unchecked enthusiasm at times 🙂
        I think most of us autistics identify with a curious combination of childlike behaviours and old-soul wisdom. Best of luck to the two of you as you learn more!

        Liked by 1 person

      • As someone who’s ordinarily pretty careful about his use of language, it’s not lost on me that there are certainly fine distinctions I’ve still yet to learn, certainly when my wife is both a freeing influence and an irritation of sorts all at once. 🙂 I felt pretty good that I knew something of “balance” before this, but in some ways I’m perhaps seeking equilibrium all over again!

        Liked by 1 person

  2. Aww thank you for the mention, my pretty 🙂 I love this! Your words are beautiful and amazing. I admire their “real-ness” ❤

    Liked by 2 people

  3. Hi there, I am also autistic and the way you specified autism is so true on how we people on the spectrum go through it daily. I don’t think a lot of people do understand the stresses yet blessings on having autism .

    Like

    • Hi! I was surprised at how many people identified with this post!

      Having only been assessed as autistic this year I’ve only recently understood the shared stresses. And more recently appreciated the shared blessings. Thank you for commenting 🙂 x

      Liked by 1 person

      • Yea I am a female on the spectrum which yet I was reading an article saying female aspies are harder to diagnose than male aspies but I don’t know if u are a male or a female by the writing nor statement in the post so yeah if u have any questions I be able to answer i was diagnosed at 13 now age 27

        Liked by 1 person

    • Thank you so much! Ah that vulnerability… I’ve been looking back over my life and realising how much of an issue that has been. You take care too, both from the safety of your box and when you are out and about! 😊😊

      Liked by 1 person

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