‘More autistic’ after Asperger’s / autism diagnosis / discovery?

The first inkling I had that I might be Aspergian/autistic came from perusing medical journals.  I browsed through their archives, just like I had for the past three years.  It had become a routine and relaxing pastime.

The Evening In March was progressing along…well, comfortably routinely, much like any other.  There had been no visible difference, no yellow light to signal the plot-twist just ahead.

One journal article title does not a suspicion stimulate.  But 10?  30?  More?  They started piling up.  The evidence was cumulative, and so, thus, grew my intuition, that naggingly curious feeling that eventually catches flame and demands to be satisfied.

The online test result told me pretty much all I needed to know.  (Of course, I didn’t stop there, since I have an inflexible desire to be thorough and accurate, which includes a lot of Devil’s Advocate-playing and all that.)

My very first AQ (Asperger’s/Autism Quotient) score was 43 out of a possible 50.

And as it turns out, I never scored that low again.

As I began to flood my brain with information from people like Tony Attwood, Anna at Anonymously Autistic, Tania Marshall, Mae at Seventh Voice, Samantha Craft, Rudy Simone, Temple Grandin, and so many, many other amazing people, I knew that I had stumbled upon the key.

The key I had been looking for, but could never find.

As it turns out, I hadn’t been running the right Google searches.  Of course, it helps to type the right terms into the search box. 😉

Every so often, like many others on the Asperger’s/autism spectrum, I go back and take those online tests again.

Visual Vox/Aspie Under Your Radar wrote an excellent piece describing her version of this tendency (“Where am I on the autistic spectrum today?”).  I have to repeat my stock phrase here: I can relate!

One might assume that Asperger’s/autism discovery might result in one feeling “less autistic”, which might even translate to “more neurotypical” online test results.

The logic behind this belief may be rooted in the idea that after discovering that one is on the spectrum, one of two things might happen:

  1. That we “learn” more “successfully” how to act/be “less autistic”, now that we are aware of the traits within ourselves that coincide with those of the Asperger’s/autism spectrum, or
  2. That realizing that we are indeed on the spectrum might allow us to relax enough to display “less autistic” behavior.

Speaking only for myself (but having come across several other conversations or blog posts along similar lines), I can say that both of those possibilities would be wrong.

My scores never wavered and threatened to leave Asperger’s/autism spectrum territory.

If anything, they ventured further into it, displaying even stronger traits.

This may not surprise anyone.  Some might surmise (a third possible assumption) that during my reading up on All Things Asperger’s/Autistic, I might have subconsciously “learned” how to be “more autistic”.  They might figure that in order to feel “legit”, I might attempt to fit the profile that much more strongly, aligning myself with the traits listed.

While that may be a reasonable presumption, and that phenomenon may indeed happen to a select few, I can say that that particular assumption is also inaccurate, in my case.

I think that what actually happened was that I finally became comfortable with who I was.  I finally got back in touch with my true nature, the one that had collected dust and cobwebs for so long.  The one I had tried to conceal.  The one that even I didn’t believe had been socially acceptable.

I learned that it’s OK if I’d truly rather go to the library than the mall, to a museum instead of a theater, sit by myself instead of hang out with other people.

I learned that it’s OK if other people’s reactions often perplex me, that I don’t usually know what they’re thinking, that I can’t anticipate their responses after all.

I suck at that.

And that’s OK.

I’m good at other skills, like focusing deeper, contemplating the nature of the universe while staring, accumulating more information on topics, filing away background information on particular subjects, and so on.

I learned that I’m not a cold distant person or a hermit for wanting my space, that I’m not “hard to get along with” or “too repetitive” or “a stick in the mud” for sticking to my routine, that I’m not a narcissist just because I turn inward, and I’m not a snob just because in my world most of the action occurs on the inside.

Over the weeks and months that flew by after my discovery, I gave myself permission to be me, to stop masking so much, to decline to force myself to shift into my Social Mode so often, deciding to do so instead on my own terms, whenever I felt that it was actually necessary.

This meant that I only put the mask on when it was actually important to do so, such as when I met with clientele, and not simply when I tagged along at my partner’s arm when walking through the mall.

I decided, who cares if the other mall-goers stared at me while I stimmed my way through the mall?  Who cares if I was verbally unresponsive, save for a wry, awkward smile when a store employee greeted me from across the store?  It’s not like they knew who I was in professional life.  It’s not like they would even remember much about me once I was gone.

Now that I’m more honest with myself about who and what I am, my AQ score has registered as high as 48.  My Systemizing Quotient (SQ) shot up higher, from 193 to 206.

I realize now that the original score of 43 must take into account the masking efforts.  And obviously, despite having worked so hard on developing those, I never stood a chance of convincing anyone that I was anything other than Aspergian/autistic.  It not only poked through; it shone through, and brightly.  I would never have escaped it or run successfully away from it or been able to hide it, even if I had wanted to.  It was Unquestionably Me.

Sure, I could memorize the online tests by taking them every day and experimenting with answers to see how they changed the score, but I don’t.  I like to take them every few months, purposefully not trying to remember the answers, answering the questions from a place of authenticity.  I feel that this approach “keeps it real”.

And it feels good to finally be real.  🙂

***

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22 Comments

  1. When I first took the AQ test (during my assessment) I misunderstood many of the questions. I also misunderstood myself quite a lot, since I had always assumed I was NT / the norm. Like you, I act more autistic nowadays. It’s good for my health. I didn’t have these tools before getting assessed, which led to depression, anxiety and physical tiredness and illness. Now when I have these tools I’m going to use them like my life depends on it, because hey, it kinda does. And that’s great.

    Liked by 4 people

    1. That’s so awesome! Thank you so much for sharing your story, luv! Wow! Kinda neat to see us have so many interesting things in common. It’s true; our lives, at least the quality of such, really did depend on these tools 😊 Great point! 👏🏼👏🏼😊❤️

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  2. I was diagnosed before the AQ came around so I’m curious. How would I score under the new evaluation system? For obvious reasons, I’d hope to fall out of that spectrum and by all means if I could learn how to “play the game” I would. As you know, I’m one of a few who is unsatisfied with my status so if I could learn to be less autistic (or not autistic at all) by god I would, however painful it would be.

    Liked by 2 people

    1. That’s an interesting question! I’d be curious, too! Did you see my blog post a while back about the different quizzes that are out there? (Not trying to plug, I just know that links to all of them are in one spot in that post.) 😊

      It’s also a “fluid and variable diagnosis “, apparently. I know one person who got stripped of their diagnosis (something that they did not want to have happen, as they are clearly on the spectrum). When my physiologist told me about the fluidity and variability of the diagnosis, I was shocked! I said, “for real?!” And he said, “yep, you’ve got to meet all the criteria to be considered. If there comes a point in your life when you don’t meet the criteria anymore, such as developing a ‘coping’ or masking strategy or something, such that it no longer impacts your life (think Part D of the diagnostic criteria), then you can lose the diagnosis.” Maybe that could work in your favor, bro! (?) 😊❤️👍🏼💞

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      1. It’s possible. We shall see. I’ll have to look into it. I’m too old to start an airline career unfortunately (I’d be forced to retire before I worked my way up the ranks) but it might be nice to just fly small aircraft for recreation.

        Liked by 1 person

        1. That would be too cool! At least you’d have something super-fun to do for fun. And who knows where it might take you beyond that? 🙏🏼💞🌟

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  3. I’m so happy for you that you have found your true self and are becoming more and more comfortable in your skin❣👏😘🌻 It’s a difficult road to get there sometimes but so so worth it! Proudly wear whatever hats (labels) you choose and throw the masks away! 💃🎉🎤☯🌟💞🌻🌹😎

    Liked by 1 person

  4. I’ve taken the AQ a dozen times, once administered by my therapist, and always score on the spectrum and always higher than the first time. I think part of that I’d because I was down playing my symptoms the first time, because I really didn’t want our suspicion to be true.

    Liked by 1 person

  5. Yes, very much relate. I guess I could say I have seen an emergence of more autistic traits in myself over the last year, but I think it has more to do with recognition of what they are and giving myself permission to release rather than all the squashing down I did for so many years. I like to think of it as growing into who we are. Embracing ourselves is an important part of healing. I smile knowing you are getting comfortable. Inspires me to keep working on it, too. And I am glad to know I am not the only one who revisits the tests. 😀❤

    Liked by 2 people

  6. I remember so much of my life in the most horrific ways. I think to a lot of people finding out they’re on the Autism Spectrum, particularly those with Asperger’s comes almost as a relief. Something finally about themselves just clicks. A sudden understanding of themselves…would that it were so easy for us all.

    I was diagnosed young and at a time the world was aware of it but not accepting. I frequently ran into conflicts from adults, even my own family noting my withdrawn, isolated behaviors. I disliked bright places, crowds made me have full blown panic attacks, I would listen to a single song on repeat for days if you let me, I would draw the same thing over and over and over and over…I couldn’t lie my way through life like most kids, I hated being hugged or touched and the slightest change to any of my standard routine would result in massive meltdowns.

    Brat, spoiled, undisciplined, ungrateful, rude…yeah I’m pretty sure my one aunt even called me a detestable child. My school experiences were no better. I was years ahead of so many of my peers in my general understanding of things. Like many people with asperger’s, for all my amazing advanced skills I had one major detriment. Math. At 30 I still can’t do basic math without a calculator and being put on the spot to do so as a child in class resulted in more meltdowns. My circle of friends at 7 quickly shrank from 5 girls to 1 and remained that way most of my life.

    There were no accommodations for individuals with autism when I was in school. I think most of my friends only put up with my odd ways because I could memorize anything. Highschool was so terrible because we had hit the age where no one cares how cruel or abusive they are. These are the years when we are expected to toughen up…thicken our skin. My classmates took great pleasure in tearing mine apart. My own friend, the only one I had, was part of a plot to get me expelled. My desire to be alone, write instead of talk [I could always convey my thoughts better in writing], draw and passively memorize rather than participate in class made me an easy target and my ability to see through duplicity was nonexistent. I failed my junior year from the harassment, thefts, and disinterest of the school.

    I made it to college when my peers had graduated already. Fortunately by 23, the world finally cared and understood more. A dedicated set of teachers and counselors took me from a girl told she’d never get into college, much less graduate , to a young woman fiercely determined to prove the world wrong. I still was harassed. I had very few friends…but I was a girl on a mission. I maintained a 3.8 GPA. I passed a math class. I wrote 18 page research papers and even had time to help my classmates spell and grammar check theirs. I got such high marks in college writing my professor asked me to sit in on her class to help her with student writing. I still memorized everything but now my younger classmates revered my abilities–first pick for every study session group [not that I needed to study]…take that last picked for gym!

    Working in my field after graduating has only brought more pain. I miss college more than anything because I felt genuinely alright then. Now my coworkers are abusive, my employer doesn’t much care, my supervisor is content to ignore my basic rights to be treated with respect…

    I’m so glad this isn’t everyone’s experience with aspergers. I’m glad for most people it’s a relief to understand themselves. It will always be my personal uphill battle.

    Liked by 1 person

    1. Oh wow!! Thank you so much for sharing your story! I can totally relate to so much of it. For a long time, math was one of my enemies, too. Ugh. I’m so sorry that your high school experience was that horrible 💐💐. It’s truly traumatic when our own friends turn on us! Gah, what a hell that must have been! I’m so happy you found some solace in college. I think that’s true for several of us, simply because it’s a generally more mature lot, not to mention usually a bigger one, so it’s easier to voluntarily get lost in the crowd 🌺. Hooray for awesome professors! The ones who notice us in positive ways. I wish the workplace was like that! But too often, it’s like being stuck back in high school again. My mom always said that whatever doesn’t kill you makes you stronger, but that doesn’t mean that there weren’t times when I wanted to disappear. You’ve always got judgment-free friends here 💝💝

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  7. “Over the weeks and months that flew by after my discovery, I gave myself permission to be me, to stop masking so much, to decline to force myself to shift into my Social Mode so often, deciding to do so instead on my own terms, whenever I felt that it was actually necessary. This meant that I only put the mask on when it was actually important to do so, such as when I met with clientele, and not simply when I tagged along at my partner’s arm when walking through the mall.” Yes, i absolutely relate. This is where I am right now. Although I much prefer not going out at all atm, and only do so if I really have to, of which I will suffer an exhaustion hangover that carries over to the next day or two. It’s so much easier when you don’t have to ‘do people. I currently want to sleep all the time, but my husband says this is not healthy. I, however, feel this is what I need right now, healing I suppose?

    Liked by 1 person

  8. This was your first blog I read and boy it resonates! Since my realisation of my place on the spectrum, I’ve worried that I’m trying to fit into the definition, that I’m exaggerating, making it up, trying to be something I’m. For years I’d been attempting self diagnosis, running through various disorders trying to make them fit like the ugly sister with Cinderella’s glass slipper, to explain my oddness. When my Aspie husband said I was like him, getting me to take the tests, I dismissed it. I wasn’t like the stereotype of Aspergers I thought I knew. It took seeing a play in London to make me realise he was right, and started researching in earnest. But then the doubts crept in. Much to do with a past relationship with a parent that made me doubt my own perceptions, I didnt trust what I knew in my bones to be true. Still don’t to an extent, and its why I think I need the official diagnosis. But since realising and also since I stopped working, I have become more Aspie, but I think its because the masks I was wearing have fallen off, I’ve stopped pretending to be what I’m not, rather than pretending to be something. Its taken 43 years to finally see myself for who I am. A little scary tbh.

    Liked by 1 person

    1. You rock, my friend 😘. I can relate to so much of what you said. Everything from the doubting critical parent to the self-doubt to the not liking what I (thought I) knew about Asperger’s to the trying to explain my oddness to the becoming more (openly) Aspie over time. We’re even similar in age! I turn 40 at the end of the summer 😁🖐🏼💞💜💙

      Liked by 1 person

  9. I’ve just been referred at the age of 47, with 46 points on the AQ50 and 18 points on the EQ60. Finding this out, last Wed was the mosy signjficant moment of my life, by quite an magnitude.

    Having started to research the subject, Aspergers seems to be running commentary of my life. The implications of this change everything, both past, present and future – it’s been really overwhelming so far.

    I’m the technical director of a theatre company, with 5 touring shows, touring worldwide, so it’s a pretty high stress job – amazing job, and I love it, but still high stress.

    This added stress seems to have started to make my coping mechanisms glitch. Methods that I’ve developed (albeit subconsciously) over the years. Are failing badly.

    It feels like my whole life has been marred, with all the signs being there, in plain view. A really strange experience. A few years, had a psychotic episode, which was very serious, but something I remained emotionally detached from, to the point of putting the whole experience on the stage, as a solo theatre show. The only thing that disturbed me about the whole episode was the fact that I wasn’t disturbed by it. The first thing I did when I ‘came down’ was to ask for pen and paper, so I could document the whole experience! I look at my script now, and the signs are there in abundance.

    I feel the same way about documenting my discovery of asd, at 47 – it’s how I deal with things – research and documentation – it always makes everything more manageable.

    I’m really confused at the moment. I’ve always known that something was different, but to get some sort of next step in a diagnosis is a truly surreal experience.

    Just to ask you all a question: I’ve always been dreadful at recognising faces, but I’ve spotted the strategy that I use – often I’m at theatre venues, and I need to talk to the same person repeatedly throughout the day. Even when I talk to them, I could walk past them in a corridor minutes later, will no recognition whatsoever. When trying to find them again, I find another member if the venue staff, on their own, so I can ask where ‘x’ is, so that if they’re standing in plain sight, I can feign surprise (‘sorry, didn’t see her there – I can’ t see for looking etc.) anyone else use this one?

    From my point of view, thus far, it changes everything. Pennies are cascading, rather than dropping. It’s by far the most important time of my life. Whether it’s good or bad remains to be seen…..

    Will update as thing develop – interesting times!

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