Remembering school life as a child unknown to be on the Asperger’s / autism spectrum

Two years ago, before the damage to my brain last year, I was a more prolific writer, fueled in no small part by the newness of the discovery that I was almost assuredly on the Asperger’s/autism spectrum, a theory that would be confirmed about 6 weeks later by a licensed professional.

When one is found to be on the Asperger’s/autism spectrum later in life, much water has rushed under the bridge.  The later the discovery, the more “reframing” one finds themself (purposeful spelling) doing, in attempt to make order and sense of their life lived thus far through perception with greater clarity.  Suddenly, with such a discovery, may come the need for everything–one’s entire timeline–to be re-ordered, reassessed against a different measuring stick.  The “why”s and “how”s often emerge out of the woodwork.

And two years ago today, I had written a reflection on having gone through school, especially elementary/primary school, knowing who I was but unable to be successfully understood and accepted by others.  Back then, the conventional criteria for autism would never have fit me; it had not yet been sufficiently fine-tuned as it is today.  Thus, the best that anybody could come up with was “she’s different”.  I called myself “dreamy”, because that’s how I saw myself in relation to the other kids, a characteristic I could neither hide nor shed, a compulsory inclination.

Because I’m still dealing with my brain (apparently that mess is more severe than I realized), I figured I’d share something from the past because would have been relevant 35 years ago when I was going through school, it was relevant two years ago when I wrote it, and thus it might still be able to help someone today.  Because as much as my own period of intense AS-related exploration and discovery has been exhausted and lies behind me, other people may be finding that their stories are just beginning, their discoveries just unfolding.

So, here it is: Invisible Division: School life as a little Asperger’s/autistic girl.  I hope you enjoy the rewind!  I’m doing my best to gather energy to write new material, I promise 🙂

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50 Comments

    1. Thank you, my lovely! ❤ I definitely am. Finally finding some peace, making some measurable progress, finding some really effective solutions. Some bittersweetness, as sometimes the solutions I find show me, in hindsight, the severity and chronic-ness of what I'm dealing with ;). But one day at a time, right? 😉 Thank you so much for your support! ❤ xoxo

      Liked by 4 people

  1. You have described this incredibly well to give me, and others, a better insight into the experience of your diagnosis. I can appreciate the need to re-frame the past because, as you say, there’s a different measuring stick now and things look different when you have a different angle on it. Thank you for sharing this – it’s this kind of openness that can really help others in a similar boat, you should be proud for writing about what you’ve been through and continue to go through! xx

    Liked by 4 people

    1. Thank you, dear Caz! You explained it beautifully, and I really, really appreciate your kind words! ❤ Life can be such an interesting journey, can't it? Always something to battle, yet always something to discover, always something to appreciate, always something to question, and always something to conquer, and of course, always some way to help someone else on whatever level 🙂 I'm really happy that you enjoyed! ❤

      Liked by 3 people

  2. Oh goodness I sympathise so much! I knew very late as well (just this year) and I left school so many decades ago! Many things suddenly make sense (friends lasting a few weeks, me always alone, feeling odd and out of sync with everyone) but I always blamed it on me, on my intellectual abilities where I found refuge (I still read three books a week on average). Thank you for sharing. You put into words so many things I needed to read and others I guess as well. You are no alone, I am not alone, others like us are not either, it feels wonderful. Thank you. Kenza.

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    1. You’re very welcome, girl! I sense the relief in your words, maybe even healing on some level? 🙂 The concepts of which you speak are very familiar to me; they’re exactly how I felt about 2.5 years ago when I first made my discovery ❤ At the time, there were about 8-10 of us, all going through the same thing, which was extremely comforting, and that's basically what fueled this blog and several other wonderful ones ( 🙂 🙂 ). The self-blame, yes, also quite familiar; somehow we see ourselves as not being able to measure up, and that causes a deep, penetrating pain from which there are few ways to heal except, for me, finding out that the reason I wasn't "measuring up" was that I was using the wrong measuring system! 😀 I'll never forget the waves of tears of healing and the waves of relief washing over me, rising up and surrounding me like a really big hug from the universe or something 😉 Starting this blog helped me share that and perhaps help facilitate that for others ❤ I'm *so* glad it has helped you in some way ❤ ❤

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      1. Yes, thank you. It has been a tough year unfortunately with very little support. But I have my nine year old son who seems to understand it all better than anyone. And I have poeple like you who although far and few, help me in many ways. So thank you. Kenza.

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  3. It increasingly looks like I’ll never know for sure if I’m autistic (although it’s interesting that you say that the diagnostic criteria have been refined… someone at my autism group suggested that I should get a (third) assessment, on the grounds that things have changed since my last one ten years or so ago). But I certainly felt strange at school. There was stuff going on at home that didn’t help, but I didn’t fit in. Academically, I did fine. I never rebelled against homework even when it bored me (and it did). I guess I took refuge in the rules rather than rebel against them, either from autistic love of rules or because they demarked and defended me against the kids who bullied me. And they bullied me a lot. I think I still have the scars in the form of social anxiety. I do sometimes wonder what would have happened if I had had help at school, but I guess I’ll never know.

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    1. I feel you, my friend; I sense what I think I can feel as a strain, an inner conflict, the knowing that you are different in many ways but perhaps not meeting the specific criteria as they’ve been spelled out (at least since 2013) ❤ ❤ I do recommend, if you don't already have it, the book by Tony Attwood, called "The Complete Guide To Asperger's Syndrome", which does talk about various criteria–the DSM-V is not the end-all, be-all; it's what much of the world uses as its diagnostic criteria for conditions like these (unfortunately), for insurance or assistance purposes, but those criteria do little for one's identity if they're not met precisely ❤

      And yes, they have changed much over time 🙂 Before 1980, autism itself was messily nestled under the now-defunct (I think?) "childhood schizophrenia" label (which was also erroneous, we've since realized), and the criteria would not have described the majority of us at all ❤ If you're interested, I delved into the history of AS and how the medical community characterized it, and the changes the DSM went through starting around World War II through the present (2016), and not much has changed since that post was written. Here's the direct link if you're interested 🙂

      https://thesilentwaveblog.wordpress.com/2016/10/11/an-interesting-look-at-the-history-of-the-autism-spectrum-and-its-ties-with-mental-illness/

      It's an interesting road, and I don't think we're quite done yet, with the refining and discovering. Change and transition are slow; there are egos involved (medical and scientific communities, professional associations, other authorities) and there are other interests involved (think "charity" groups, puzzle-piece organizations, etc), and whatnot. There's more to our story, obviously, and there are also those that display strong characteristics of AS, even if not *all* of the (arbitrarily-set) criteria. Just because one doesn't meet the contemporary definition of AS doesn't necessarily mean that they aren't 🙂 🙂 ❤ ❤

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      1. Yeah, I definitely do feel inner conflict. I’ve never fitted in; even in communities of misfits, like online geek communities, I feel different. And I’ve got a lot of mental health issues which are more treatment-resistant than they “should” be (i.e. than they are for most people), which increasingly makes me feel there’s something the doctors have missed. So I’ve come back to thinking about high-functioning autism, and someone from my autism support group got me thinking about complex trauma too. It’s easy to get lost looking at lists of criteria though. It’s hard to take my (often distressing) personal experience and fit it into diagnostic categories.

        Interesting post about how diagnostic criteria have changed over time, thanks for sharing.

        Liked by 2 people

        1. Yes! 👏🏼👏🏼. Health professionals miss stuff all the time 💗. So, just because they don’t pick up on something doesn’t mean that they’re right or that you’re wrong 🌷. I’ve been diagnosed (usually not officially, more on a theoretical level, where they muse out loud the suggestion that I might be This or That) with ADHD, depression, OCD, bipolar, etc, and, ok, some of the symptoms rang true but not all of them, and there were still other traits that those diagnoses didn’t explain, so what’s up with that, right? 😊💗. And it turned out that AS explained them all and then some, but it took me poring through research studies to start getting the inkling that I might be, and then several internet searches to find the online quizzes and tests that started pointing me in the right direction. It was definitely a journey and for a while I was in limbo, confused, undefined, never fitting. The online tests were of great help, though; the results were pretty unmistakable. Of course, some people score borderline-AS/non-AS on those but might still be AS, just a different, less-textbook type 💓. Testing can be distressing, though, yes 💞. And I’m sure we’re not done refining the criteria, because they’re based on Caucasian 6-year-old boys, so they still miss a lot. Adults and females/minorities of any/all ages still very often end up under the radar 🌷🌷

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  4. This post definitely hits home for me. I found out I was autistic around the age of 30, and it was mixed feelings. On one hand, SO MUCH suddenly made sense and I felt like I wasn’t as much of a freak as I had always felt. On the other hand, I was filled with so much sorrow that I had endured so much for so many years and been the subject of so much misunderstanding on the part of others (including family, teachers, kids, bosses, coworkers, etc.).

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    1. I hear you girl (applause) 🙂 It’s like receiving a code-key; suddenly all the gibberish and gobbldeygook makes sense! And no, we’re not wrong, not freakish, not defective–just different, and Different Is Good 😉 The sorrow, oh god(dess) yes, the sorrow – all the lost years, the falling outs, the feelings of failure, the hurt feelings through misunderstandings, the awkward moments, the relentless desire for that mythical Undo Button ❤ I understand those themes very well. I'm with you, shoulder to shoulder ❤ Thank you so much for reaching out 😀 ❤

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  5. I didn’t know you had a recent TBI. I acquired one while serving and was a bit freaked out when I saw a brain image. The nurse made a joke about my being an airhead when she saw I was about to cry. It was perfect and we both had a nice belly laugh. It’s a gift I still cherish. I’m still holding your hand in spirit, little sister. We’ll get through no matter the challenges. Tag. 💜💜💜💪🏽✌🏽🙃

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    1. Howdy my lovely! 😍. Omg girl I have more and more respect for you each day 🙌. Mine wasn’t a TBI in the classical sense; it was more of an insidious combination of factors that eventually resulted in a straw breaking the camel’s back 💗. The straw being accidental nickel poisoning, only finding out later about nickel being a pretty potent neurotoxin. Could’ve easily not made it through last year, so I’m really grateful to be here now 🍀😁. I’ll probably explain more later 😉. Thank you *so* much for sharing your story, luv! Honored to be holding your hand, too! We will definitely get through our challenges, and as quiet as I may be sometimes, just please know that I’m very often thinking of you and always by your side 💓🙌💜💙☮💕

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  6. I see a lot of similarities in this post. My experiences in school were that of “he’s different” and nobody taking the time to make sure I really understood the material. It was those aggravating snot nosed kids that really turned me away in school. When you’re not like them, you’re grounds for ridicule. On top of a lonely, confusing, frustrating childhood, I had to deal with these kids who would not try to get to know me, would not befriend me and were too busy being in the cool kids club, or desperately trying to be in it and being associated with me, they too would receive equal treatment…

    Academically, what I was good at, I excelled in. What I wasn’t good at, I wasn’t…. for a good many years, I basically did what I had to to keep from failing. I too went to a small school where there was no excitement. I was going nowhere and my parents decided to send me elsewhere. This new school told my parents that they did me no favors by sending me to the last school. But, the new school basically tested me and found out what I could do and then stuck me doing those same things year after year until I took the exit exam in high school. Of course I flunked it! Having never took the subjects I was tested on, I had no idea how to solve them correctly!! So I had to take a special class to learn.. and I give credit to God for me passing the second time. And of course, the social awkwardness that followed me through those years at a new school with new challenges and the quarter ton of aggravation that came along with it… graduation was the best thing I could ever accomplish in school. I.E. getting as far away from that place and those people as possible.

    I’m not sure if I can be taught. I’ve learned more on my own since school than I did the entirety of time I was there. Because I can learn, study and test myself at my own pace and nobody is there to mock me when I fail. Comfort equals confidence.

    Liked by 2 people

    1. Oh my goodness, I’m always amazed by the theme of no-matter-how-unusual-your-experience-there’s-always-someone-else-who-can-relate that I’ve noticed along my journey! 😁 It’s too cool to know we’re not alone. We’ve even used the same words to describe ourselves, or had the same words used by others to describe us. Your experience is very very similar to mine 😍❣️

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  7. I’m glad you chose to share this story with everyone again. Those formative years are arguably the most important in our lives. From that tender, loving home-learning environment to what sounds like a godawful school… that’d be enough to ruin any child. My heart goes out to you.

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  8. ” Back then, the conventional criteria for autism would never have fit me; it had not yet been sufficiently fine-tuned as it is today. Thus, the best that anybody could come up with was “she’s different”. ” Yeah, we’ve come a LOOOONG way to understand autism. I grew up a 90s kid, so I understand how far we’ve come from understand all the various sectors of behavioral health and knowing not put an “exact” label on what having a behavioral health condition looks like. While I don’t have autism, but mental health disorder, it is funny looking back from the outside in of your childhood and seeing how far we’ve come even when we didn’t know what we had, although we knew we were different. It’s when you look back and smile and say, “I was a tough little chick!”😄

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  9. Laina, you are so sweet, kind and open about your early childhood experience. This is bound​ to help others who live with someone with autism or Asperger’s, who actually is dealing personally with this or being a professional who is hoping to connect and help those who are facing challenges​. Love you lots, I’m at work so will find my way back here, dear. xo 😘 💞 hugs 🤗

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  10. Such a fascinating insight into your world growing up. Sorry to hear that nobody seemed to help you earlier on in life. My 16 year old son read your lovely post as he too has Aspergers and he related a lot to it. I have worked in education for a few years and it always annoys me how many children slip through the net in receiving a diagnosis and understandingwhen it can sometimes be so plainly obvious. Keep being you ❤

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