Why I’m still hiding my Asperger’s / autism from some people 

In the grand scheme of my life, my knowledge of my Neurodivergent neurological orientation is still fresh-ish.  After all, my awareness of being autistic only accounts for 3% of my lifetime.  (I actually did the math, even if I did some rounding so that I could work with nice, simple numbers on my mobile’s rudimentary calculator.) 😉

Despite the comparatively brief period during which I have known the truth, I feel as though I’ve hit a warp zone, plunging myself into another nook or cranny of the world.  There are some things you can’t un-know, nor would I want to, even if I could.

That’s not to say that these new lenses don’t come with some fine print of their own.  I’m reaching the realization that nothing is inherently black or white, soft or hard, warm or cold.  It just is.  And that’s OK.

That doesn’t mean that it’s easy, though.  It’s not the Asperger’s/autism that makes certain times challenging for me; it’s the mismatch between my way of thinking (of being) and that of the world in general.

The world in general can be so silly.  They make Aspergians out to be arseholes and autistic people out to be blank nothingness.  They react (or act?  I can’t tell) with shock and say things like “I’m so sorry” when (if) I tell them that I’m on the spectrum.  Even if those people are well-meaning, their response requires a response in turn, which usually consists of giving an explanation I may or may not have the mental energy for.  And, it’s an explanation that they might not even be open to receiving.  Do my explanations of liberation and validation make a difference?  Maybe they do, maybe they don’t, or maybe they don’t right now.  And maybe they will later, should any of those people stumble into an “a-ha!” moment of their own.

But as I mentioned, this takes energy.  Energy I don’t always have.  Words I can’t always find.  Expressions that might fail to convey my truth, might fail to convince those people that I really am OK.  And by then, I might not be, for their response is, as of now, the default one, based on a pervasive and global misunderstanding.

So, most of the time, I conceal my autism behind a semi-invisible cloak.

Sometimes I get the strange looks.   I don’t always know what various facial expressions mean, but I know a weird look when I see one.  The expression could be in response to practically anything.  Usually it’s something that I said or did, something that seemed perfectly logical, perfectly acceptable, perfectly appropriate.  Except that it wasn’t.  Some things you can’t un-say or undo.  Some facial expressions you just can’t un-make.  Better luck next time.

And then some people say, “you’re autistic?   You can’t be autistic!   You’re too ‘normal’!”  (And it is I who am accused of being too blunt?  The irony (hypocrisy?) sort of baffles me.)

And some people will tend to treat me differently after I tell them.  Suddenly, it’s like I magically regress in physical age, and they start talking to me like I’m a young child.  Or someone not to be believed.  Except that last time I checked, I was well within the realm of sound mind.

Usually, though, it’s more subtle than that.  I may not have much of a body language or facial expression decoder, but somehow I ended up with a pretty decent Intuition Antenna.  I can’t tell quite what their eyes or posture are saying, but there is indeed a signal coming through.  And I’m not so sure that it’s a signal I like.  It seems to say, “I’m treating you like a human being now because I was doing that two minutes ago before you told me, and it’s socially incorrect to treat you noticeably different now.”  Kind of how some companies express their low regard for their employees by paying them minimum wage; you know they’re only paying that much because it would be illegal to pay them less.

These awkward signals are visible.  It’s not like I can’t tell.  I can’t decode the specifics, but the general message is (too) loud and (too) clear.

And there are some times when there are some people who tell me to “just try harder”.  As if I’m not trying my best already.  I want to ask them if they think I’m holding out on them.  As if I’m suddenly going to fess up and say, “whoops!  You got me there.  Here, let me pull these aces out of my sleeve.”

And some people continue to believe that Asperger’s/autism is just an excuse.  A label that one simply slaps onto their chest so that life may somehow grant some kind of “get out of jail free” card.  I’d like one of those cards!  I would use it sparingly, of course, but it would come in handy during an emergency.  But alas, I have no such thing.  Having a diagnostic label only provides an explanation for that which is already there, for that which confused me, for that which frustrated me.  If anything, the realization allowed me to let myself off the hook for attributes that I never revealed to the world.  But I’ve never asked the world at large to tiptoe around me.  I simply want (need) to be accommodated, in tiny unobtrusive ways, a bit more often.

Some people might think I’m vying for special attention when I tell them.  “Ohhhh, you’re one of those,” say their eyes, as those eyes roll inside.

This response incites an internal eyeroll of my own in return.  It’s not attention that I want.  In fact, the reality is, ironically, the opposite.  All I wanted for most of my life was for people like that not to pay attention, but instead, to look away and ignore me.  Certainly, I wasn’t all that interesting.  Out of all of the elements in the chaotic surroundings, surely there was something or someone who was louder, faster, more dynamic, more fun, or more fascinating to latch one’s gaze onto.  So why me?  I wasn’t parading myself in front of the crowd, turning classrooms and lunchtime cafeterias into my own personal stage.  I wasn’t calling any attention to myself, so why did anyone give it to me?  I was the Quiet One, and now the same types of people who gave me unwanted attention as a child are the ones who would accuse me of merely using my Asperger’s/autism spectrum status for attention now.  Oh, the irony.  Or would that be projection?  I’m almost too jaded to care.

One of the most irksome responses to my spectrum disclosure–that I’ve heard plenty–is the misguided statement that “everybody’s like that.”  No.  They aren’t.  And it’s almost insulting to insinuate otherwise.

I’m cautious about autism disclosure these days because there are some people who might be inclined to suddenly come to see me as a “burden”, where they didn’t before.  And they might never have, had I not disclosed my status to them.

I’m still “Laina”, after all.  I’m not “Autistic Laina” or “Laina the Aspie” now, any more than I was before I told anyone, not even any more than I had been before I found out the truth for myself.

I withhold my Asperger’s/autism diagnosis from people in my professional career because there’s always the (likely) chance that I might lose credibility with many in my profession if I come out fully.

And the neurotypical world is not the only potentially hostile agent; there are even some (a tiny few) who are/claim to be autistic themselves who have said, “have you been officially diagnosed?  Because if not, you can’t say you are.”

Although I have since been fully formally diagnosed (and dually at that), I endured that sentiment occasionally from a small-but-snobby sliver of officially-diagnosed autistic people, and I call Bullshizz on that philosophy.  I get where it comes from.  I understand that some people on the Asperger’s/autism spectrum have been manipulated or otherwise wronged in various ways by those who are just looking for attention.  I have yet to witness such a deception, but apparently it has happened to some.  But even though I can empathize with the backstory behind the sentiment, that doesn’t make it right.  I’ve gone there before, so I won’t go there again.  Let’s just say that no one has the right to tell another person what they can or can’t call themselves.  It’s fine to have an opinion, but it’s not fine to further alienate and marginalize people one doesn’t even know.

When I make the effort to open up about my truth and my reality, I’m taking a risk.  Once the cat is out of the bag, I’m at the mercy of other people’s levels of tolerance and open-mindedness.  I’m at the mercy of their reaction, an element which is beyond my control.  I’m at the mercy of their previous experiences and current knowledge bases.  There’s the very real chance that they might shut down, shun me, turn on me or turn away from me, and silently vow never to talk to me again.

Every time I disclose, I must ask myself if this is a person I’m willing to let go of, to never see again.  I must grill myself about whether or not I’m OK with this being my last contact with them, before I fall off their planet and evaporate from their world.

Happily, most people don’t seem to care.  Luckily, the responses I’ve described above are relatively uncommon (except for a few).  Fortunately, I don’t encounter most of them on a regular basis.

But that doesn’t mean the chance isn’t still there.  That doesn’t mean I will never hear these things (again).  It doesn’t mean I’m home-free.  It simply means that I’m not ready to tell the whole world yet.  Because I think that one factor that has saved me from being met with these responses and sentiments may be the caution I’ve taken and the people I’ve chosen when deciding whether or not to speak up about being autistic.  I proceed as though there’s a crack in every sidewalk, a land mine in every field, and a ghost in every machine.  It might be a lonely, limiting, and deceptive way to live life, but it’s my way, and it’s the only way that I can deal with. 🙂

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43 Comments

  1. “After all, my awareness of being autistic only accounts for 3% of my lifetime.” Thats best! Most people (also myself) before reading you lines didnt know anything about autism. Thank you for your explaination. Have a nice weekend. 😉 Michael

    Liked by 3 people

  2. I think people project. Mom started taking out her long suppressed frustrations toward dad (an undiagnosed autistic) onto me. I had to call her out on it and say that I was still me, if I needed help it would mostly be with social situations, not website navigation. I had to remind her I was still the same person, we just finally had a label for it.

    A coworker I trusted wasn’t really as accepting as I thought he was even though he told me my autism was a medical condition (and something I really needed to hear at the time…since, I’ve accepted it as a disability). He was just afraid. I suspect he projected too because it was somehow a reflection of him or people he knew who had a disability. I still don’t know if he was afraid because I would be bullied if I came out, because he didn’t know how to help, or because he was just afraid. At that point, he was only thinking of himself. It took a piece of paper for him to be nicer, but even then, his niceness seemed fake; the instructions they gave me for some tasks, even though they were clearer, were, in my opinion, completely unethical.

    On the other hand, sometimes you really have to give people time. Two other people I came out to were in shock at first about my suspicions. But later, even when I hadn’t been diagnosed yet, they asked me about these overlays I used to help my sensory problems. They knew I wasn’t as aware of my surroundings, so they watched out for me. One of them knew I needed concrete numbers to help with budgeting as opposed to “that’s about right” so he gave me numerical estimates for each task. It was a nice gesture.

    Liked by 4 people

    1. Thank you so much for sharing your experience and your thoughts on this 😊. I’m so sorry to hear what you went through with some, and relieved to hear about the thoughtful gestures of others 💙. It’s unfortunate that the gracious ones are still the exception to the rule and not the rule itself, but I think you’re spot on – some will need more time. My theory is that others have their own processing to do, and they have to reconcile the new information coming out with the slanted perception still perpetuated by others. Keep on keeping on, luv! I really admire your strength and appreciate your perspective 👏🏼👏🏼💖🌺

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  3. I can understand being cautious in your professional life. Your concerns are real, unfortunately 😠 If anyone in your private life acts any differently towards you maybe they need to hit the road anyway!👋 🐜You are a brilliant, fantastic, awesome (more adjectives) person, “quirks” & “weirdness” included! 😍💐💞🌻💖🌴😎

    Liked by 3 people

    1. “Your concerns are real, unfortunately. If anyone in your private life acts any differently towards you maybe they need to hit the road anyway!”

      True that! 🖐🏼🖐🏼

      Thank you so much for your lovely words of encouragement and support, Spirit Sis! The feeling is always mutual, of course! Mwah! 😘💖🌴🍀🐉🎊🎉

      Liked by 2 people

  4. i’ve never had much clue of facial expressions, efen after learning them from books as a kid. so these days… i often opt for half-open disclosure. without specifying the exact or the extents of the disabilities. none of the business of random people… and sometimes i think it shows too well though. when i’m in a group of sighted neurotypical people somewhere, wearing dark shades, not keeping eyes open or bother to appear to stare in the direction of someone talking etc

    Liked by 2 people

    1. Oooh, I like this strategy! Half-open disclosure – that sounds “just right”! Kind of like Goldilocks and the three bears – too much or too little? Why not halfway? That way, you can decide which direction to go; you’re not fully out and fully committed yet until you want to be. This rocks! 👏🏼🌷🌺

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  5. I’ve been very very cautious who I directly tell my suspicions to (I still feel I have to call them suspicions until I decide to get it formalised). Its only been to three friends I trust, knowing their own issues and that they would understand. I have other people I don’t trust so much, as I don’t think I know their reaction – some I think will be the ‘we all are like that sometimes’ crew. With my increase in liking various articles etc. on Facebook, none should be entirely surprised, that is if they pay any attention to what I do, I suspect many don’t. Right now I’m at the point of ‘to hell with it, just make the appointment and get it done’ and almost emailed the clinic 5 minutes ago before the anxiety go the better of me. Once I get the formal nod (assuming I do of course) I might feel a little more secure in telling people within my circle.

    Liked by 2 people

    1. “Suspicions” is a great word 😊. I also used the phrase “identify as” or “discovered that I’m probably (on the spectrum, etc)” 😊💖. I really respect your caution! I started coming out kinda like you are; I liked and shared a few articles, with just a heart icon/emoji as a comment. Nobody was all that surprised when I finally made it official a few months later 😊. Go ahead and press “send” on that email, dear one 😉😊. I totally understand the anxiety though! Been there, done that 💓. Getting the diagnosis, for me, was a huge relief and a total solidification of my knowledge/suspicion. I felt much more comfortable telling people after that. Hopefully your journey will have a similar benefit for you! 💪🏼💙💜

      Liked by 1 person

  6. Thank you! Very well-said, friend. ❤ Caution has always been a huge part of my nature as it is, so adding an extra layer is actually not too far from instinctual for me, though I did try for a while there to share my status in efforts to disprove some of those nasty, faulty theories floating around. But, after so many times of “You would never know it.” ( as if I am looking for reassurance it’s not showing!), being told, “It’s being overdiagnosed. Everyone’s got something.” or suddenly being talked to like a two-year-old, ( grrr.) I am learning to revert to my more cautious state for my own mental health. Now, it mostly comes up if someone is looking askance at why I do or don’t do certain things. Of course, if I lead off with describing my EDS, I usually don’t have to plunge very deep into the autism part. THEN, I am busy explaining where I look like an average lady in her late 30’s, my body feels more like 80- a tired 80 at that. But that’s a whole different area of an ongoing battle…lol.

    Liked by 3 people

    1. 😘😘. I can relate so much, my lovely ❣❣. At first I wanted to go tell it on the mountain (I never ended up being quite that open, though). Then I drew in a little, bit by bit, until now I only disclose if I feel the need to, or if I’m feeling particularly resilient and I decide I want to. But I put people through a series of mental “checkpoints” first, using more caution these days to ensure that they’re “safe”. 😊💞💙

      Liked by 2 people

  7. Its so hard to know who to tell. I’ve told a few close friends, but have held off on telling anyone, especially family, else until its “official.” Even then I’m not sure who to tell. Its something I probably spend too much time worrying about

    Liked by 2 people

    1. Oh yes! My friend, you are in lots of company 😊. I know what you mean, at least through my filters. It’s hard to tell! Please please give yourself all the permission and leeway you need, in order to think it through fully. You can always wait to tell someone, test their waters first; much easier to do that than to tell someone prematurely, the way I see it 💓. It’s perfectly ok to obsess about it, IMHO; it’s not a light decision to make, and the potential responses are often not light, either, meaning that they can make or break someone. I think you’re really wise to be cautious; it makes the going-ahead with telling your chosen people that much more comfortable (I hope) 🍀💙💜

      Liked by 1 person

  8. Your life – your decision, and an authentic choice either way, in my opinion. Meanwhile, you do a great service here on your blog, articulating the challenges and your experience so well! I love this particular post because I know you give voice to many who are “secretly” agonizing over making the disclosure decision.

    I decided to be waaaay out about my ADD dx (at 38 – and it was quite stigmatized at the time) because I made up my mind to be an advocate almost immediately upon diagnosis. I had been in therapy searching for what was “wrong” with me for a decade already – and I can be pretty glib about most things so I’m a good choice to take the pies in the face. Still, more than a few comments have made me angry and often hurt my feelings.

    That said, I do NOT advise outing oneself at work, whatever your dx, unless you simply must (and there ARE a few reasons there). It CAN jeopardize your livelihood.

    Also, I believe that ASD is equated with “practically retarded” in the minds of so many people who are relatively ignorant where neurodiversity is concerned, so I understand only too well why you’d want to be cautious, even in your private life. They don’t get “spectrum” – non-verbal geniuses included. It breaks my heart that this is so, but that changes little.
    xx,
    mgh
    (Madelyn Griffith-Haynie – ADDandSoMuchMORE dot com)
    ADD Coach Training Field founder; ADD Coaching co-founder
    “It takes a village to transform a world!”

    Liked by 1 person

    1. I was hoping you would weigh in! 😉. Thank you so much for sharing your perspective 😊 Your words are incredibly wise. And very true! Especially regarding work situations. At this moment, a friend of mine on the spectrum has been tangled up in an employment dispute that only began when they asked for reasonable accommodations at work. They were indeed reasonable and even in the US (where we both live), it’s federal law, but that didn’t protect them from losing their job. I’m not an attorney but from what I know, that’s highly illegal, and yet it goes on, every day. Job loss isn’t the only potential problem, either; the autistic person might retain their position, but start getting passed over for promotions, or maybe start encountering a slightly less smooth/more hostile work environment. It’s a jungle out there, my pretties 🍀💖💙

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  9. Over the course of a couple of years, I had a series of personal challenges: I split with my husband, had to sell the house, move to an apartment, buy another house, renovate said house, and move again. The week I moved into the new house, my teenage son started boarding school.

    During this time I went through many levels of burnout and breakdown, which drastically screwed up my performance at work. All the criticisms were things like “Can’t problem-solve under pressure”, “Has trouble meeting deadlines”, “Did not convey a sense of security to clients”, you get the picture. I suspected ADD, went to get evaluated (mainly because I had the sense that medication would help me), and emerged with dual DX of ADD and ASD Lvl 1. The autism stuff was primary, and so incredibly obvious once pointed out.

    All the feedback at work started to sound like, “Quit being autistic” so I felt obligated to disclose. Still there, but not sure for how much longer. Getting a list of recommended accommodations will just allow them to point to my job description and say the accommodations are incompatible with the job. So I’m looking. I have many years of experience in the industry, but this particular shop is both sexist and very high-touch and given the history, I don’ know if I’ll ever be able to measure up.

    Liked by 1 person

    1. Oh wow, my dear friend, that’s a heck of a lot to shoulder in such a short time! And the fact that things are still far from certain. Oooh, I feel for you! 💐💐. I definitely hope that sunnier skies and more solid ground head your way and find you ASAP 🍀👍🏼💝. Here’s my favorite dragon for luck 😊 = 🐉🐉

      Liked by 1 person

  10. I’ve only told one person in real life about my suspicions (my sister), just to have someone’s opinion if it’s even worth looking. Otherwise I’m only talking about it anonymously on the web. I still think it could all turn out to be a huge mistake and I’m “making” myself autistic by putting myself under the microscope. But anyway, from knowing for yourself to telling others is quite a big step for all the reasons you talk about. 💜🌸🗽

    Like

  11. I love reading your blog and being educated about Autism and Asperger’s. Keep being you and embracing everything about yourself that makes you who you are. ❤🌷🌹👏 I applaud and admire your brave courage to disclose. No worries, those people who react ridiculously towards you or treat you different don’t deserve to know you or have any of your light. 💓

    Liked by 2 people

    1. Thank you, kind friend! I really appreciate your support; your words are extremely encouraging and beautiful 😘❤️. Thank you for saying what you said; because I know you really mean it 💚💙💜💟💖🙌🏼😊

      Liked by 1 person

  12. I’ve told one person about it in person, and they reacted with “oh, but you seem so normal”…it made it so communication with them was even more difficult as I stumbled over my words trying to explain myself. I just ended up doing myself more harm than good. I’ve found it safer to only talk about it online, unless I absolutely have to disclose in person. I usually just tell people I have sensory issues, and even that is difficult to explain to people who don’t understand. They notice the earplugs/headphones I’m always wearing and treat me like I’m some sort of weirdo for it. PTSD is about the easiest thing for me to tell people. I can’t even say C-PTSD because then I have to go in explaining how complex PTSD is different, and it’s way too exhausting. Telling people I have Dissociative Identity Disorder is completely out of the question. There’s even more stigma that comes with that due to the way we’re treated in the media, like we’re all a bunch of psycho killers. SO yeah, I definitely get it. Thanks for writing this, it was relatable as always. Take care.

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