“But you’re not that autistic, are you?”

“But you’re not that autistic, are you?”

This is something people say to me all the time. I think it’s supposed to be received as a compliment from people who don’t understand that being disabled isn’t necessarily a bad thing, but a compliment is the last thing I see it as. The observation isn’t exactly helpful, either.

This opinion is mostly upheld by people who know me on a professional level as opposed to a personal one. In principle, people seem to understand that a lot of my behaviour occurs as the result of masking my true behaviours in public, because I’ve explained this a lot in the past, but in reality, this understanding is often forgotten.

If you know me on a more personal level, you’re likely to see things that other people don’t. You’re likely to notice my social blunders, like the way I initially act overconfident in a new environment, and my inability to understand the social rules in new places, before I settle into a pattern of observation that is often mistaken for shyness, which lasts anywhere from a few weeks onwards before my true personality is revealed.

My communication struggles become more evident over time, too. Like when I’m tired and I talk out of turn or interrupt someone by accident because my brain is too tired to tell me to wait, or when I respond incorrectly to a simple question such as “how are you?” because I’ve been relying on scripts to get me through, and my scripts become confused.

You might even begin to understand my sensory issues, like how I struggle to process verbal communication when there’s background noise going on because I am unable to filter it out and will instead subconsciously try and process everything, which doesn’t often work. You might learn that I avoid certain fabrics, and some are so gross for me, that I’ll physically gag just talking about them. Velvet is a good example of this; even writing it down makes me feel like my skin is crawling. The thought of touching it is even worse.

The truth is, people who believe I’m not that autistic probably don’t know me as well as they think they do. They’re probably yet to experience my behaviour in an environment I feel comfortable in, or comfortable enough in to let my guard down and stop trying to act completely neurotypical, at the very least. I believe part of my desperation to hide my autistic behaviours—although it’s already more common in females—comes down to the fact that I received a late diagnosis, and that sometimes, I don’t even realize that I’m hiding my behaviours in order to fit in, or at all. Sometimes I do notice, but I’m finding it hard to verbalize what I want to say, and in those cases, hiding who I am is just easier than getting frustrated because my brain can’t do what I want it to be able to.

Overall, I think it’s important to remember that autistic people are just as individualized as neurotypical people are. We all have struggles and difficulties that may not be apparent at first glance, as is the case with neurotypical people we all come across on a daily basis. You wouldn’t go up to someone and make observational comments about other aspects of their identity, so why is making an assumption about someone’s disability based on the way you view them any different?

Like I said earlier, I understand the sentiment behind this comment, but it’s difficult not to feel like I’m being disbelieved when I hear this on an almost daily basis on my everyday life.

I’m not sure why, but despite the amount of people who say this to me, I have yet to come up with a scripted response to say in return. This means I often feel out of my depth, and throw the comment off with a nervous laugh, but I hope from now on I can show people this blog post and they will realize why it’s not as much of a compliment as they once thought.

Thank you for reading, and until next time,

Goodbye

 

 

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32 Comments

  1. roxauthor

    21/01/2017 at 7:46 PM

    What an insight! Thank you for sharing this, and stay beautiful 🙂

  2. nouman khan

    21/01/2017 at 8:08 PM

    Good and concise content

  3. Sarah @tortoisehappy.com

    23/01/2017 at 8:18 AM

    I think it is sometimes an automatic response by people who don’t know what to say. It isn’t something I would say, although I am always worried about offending people. I am sure you could come up with a script that would help people to understand a bit more, because the problem stems from not understanding. Perhaps your script could say “I deal with everyday encounters with routines and and scripts, so the true amount of my autism probably isn’t visible. But there is an autism spectrum, and my autism could be much more severe but I am further down the spectrum than most people realise”. I don’t know if I have articulated your perspective here well or not, I certainly don’t intend offence. I have a little understanding of autism; my sister’s friend and brother are autistic. One is similar to you and many people will not realise, whereas the other has a severe form and has limited communication abilities. Thank you for your enlightening post.

    1. rebekahgillian

      23/01/2017 at 5:57 PM

      It’s often from people who don’t understand, I agree, though there are times when it comes from people who should be knowledgeable! Thanks for the idea, although the spectrum is more of a colour wheel of symptoms as oposed to a line with “mild” at one end and “severe” at the other. It’s quite a difficult thing to word a response to, though, especially when you try and come up with ways to script it before you’ve spoken to someone! I’m glad you enjoyed my blog post! 🙂

  4. abrightclearweb

    23/01/2017 at 5:27 PM

    Brilliantly written. Reminds me of the saying “If you’ve met one person with autism, you’ve met one person with autism.” We are all unique.

    1. rebekahgillian

      23/01/2017 at 5:58 PM

      Thank you. Yes, that phrase is definitely true!

  5. queenmeh

    23/01/2017 at 5:30 PM

    Thank you for this post, very illuminating.

  6. thetongueinchic

    23/01/2017 at 8:29 PM

    Wow! What a piece, thanks for sharing.
    Autism is not a one size fits all. My brother is on the spectrum and I really appreciate this.

    1. rebekahgillian

      23/01/2017 at 9:18 PM

      Thank you! Yeah, definitely; once you’ve met one autistic person, you’ve met one autistic person. I’m glad you appreciate it! 🙂

  7. nadine cathleen (@karateandcaviar)

    23/01/2017 at 9:22 PM

    I can understand why you feel that way. Must be quite annoying to get these type of questions constantly. I would probably just answer in an ironic way and put a sweet smile..

    1. rebekahgillian

      23/01/2017 at 10:13 PM

      Yeah, it’s alright the first time you hear it, but it quickly gets annoying! I’m too honest to do that; I just try and get it over with as quickly as possible so I don’t have to lie, haha!

  8. Enlightenment for Schmucks

    23/01/2017 at 9:42 PM

    This is great! Sometimes I think people tend to group things as ‘good’ or ‘ bad’, when in fact there’s both highlights and challenges in everything. I’m sure you know some great things about being autistic that those of us who aren’t autistic don’t get to experience.

    1. rebekahgillian

      23/01/2017 at 10:14 PM

      Yeah! That’s a great way of describing it, for sure! That’s why I started writing this blog, actually; I wanted to highlight that autism isn’t this death sentence many parents of autistic children lead people to believe. It’s actually a good thing in many ways, too.

  9. angela

    23/01/2017 at 10:42 PM

    Thanks for sharing this–i love your insight and it totally inspires me to let go a bit more and be more open in my writing. ?

    1. rebekahgillian

      23/01/2017 at 10:51 PM

      Thank you! Good luck with that. 🙂

  10. Sabrina Sangha-Myers

    23/01/2017 at 11:02 PM

    Reblogged this on Sabrina Sangha-Myers and commented:
    Thought this was amazing and can relate to it because of my Aspergers diagnosis. Great read.

    1. rebekahgillian

      24/01/2017 at 12:05 AM

      Thank you! I’m glad you liked it and could relate to it! 🙂

  11. chasingournewnormal

    23/01/2017 at 11:14 PM

    Oh I love this so much. We just started out Autism journey with my 6 year old son. I truly loved how raw and honest you were in your writing!

    1. rebekahgillian

      24/01/2017 at 12:06 AM

      Thank you! The autistic community is definitely the best place to get true accounts of the condition, haha!

  12. Andrea Broom

    24/01/2017 at 12:33 AM

    Thanks for sharing something so personal. I’m bipolar and I know it’s not the same thing, your insight in this. its amazing. Sometimes people don’t know how to respond or react. It’s difficult.

    1. rebekahgillian

      24/01/2017 at 12:54 AM

      It really is, isn’t it? Sometimes people go one step further and purposely insult you in a sweet way and it’s like, “Wait, do you actually /want/ me to respond to what you said like you weren’t just trying to annoy me?” It’s difficult!

  13. Julie

    24/01/2017 at 2:24 AM

    I enjoyed this thank you much food for thought.

    1. rebekahgillian

      24/01/2017 at 8:21 PM

      I’m glad you enjoyed it! 🙂

  14. Frank Verpaelst

    24/01/2017 at 3:44 PM

    Thank you for sharing, and explaining so well.

    1. rebekahgillian

      24/01/2017 at 8:22 PM

      I’m glad you enjoyed it!

  15. Lia

    27/01/2017 at 2:13 AM

    Actually, i think im less severe than i am and its others that pick up on my behaviours because i dont notice them as it’s something I’ve done my entire life. Sometimes tho because of my late diagnosis people go “so you weren’t always autistic?” xD a lot of people know autism exists but not enough about it and that lack of knowledge makes me feel uneasy a lot! Thanks for this post

    1. rebekahgillian

      27/01/2017 at 8:04 PM

      That’s a unique point of view, but it totally makes sense! I guess, since my diagnosis, I’ve been through all my behaviours and kinda discovered they aren’t normal, and now it sticks in my head to hide them in front of others, replaced with something more “socially acceptable”. It’s quite difficult to explain, actually.
      Oh my god, yes!! I hate that! Like, no, my brain’s development in the womb totally changed at 17 years old, because that’s totally possible.
      Yeah. Same here. I wish people would understand more than they did at the moment. It’s a shame, isn’t it?!

      1. Lia

        27/01/2017 at 8:21 PM

        I do kinda try to fit in top but i never really do xD i completely agree

        1. rebekahgillian

          28/01/2017 at 12:18 PM

          That’s pretty much me! I think people get used to me pretty quickly though, and I’m more toned down around certain people, so I hope I’m not that infuriating to be around! 😉

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