Careful with autism 

This post was inspired by Rhi’s lovely post “An Autistic Anniversary“.  While reading it, my brain saw a butterfly and chased after it, like my brain tends to do.

Brains these days.

I fully realize that it’s been a year since my Asperger’s/autism spectrum discovery.  And while I fully realize that, I guess I haven’t fully processed it.  Every time I think I have, some new revelation emerges from the trees.  Or the wind.  Or the mountainous hills of which I live on the edge, in more ways than one.

Which means I’m still processing, which for me, involves reframing.

I realize that some might be saying, “good lord, girl, enough already!”

And after a year, they’re probably within their rights to say such a thing.  Or maybe they don’t have that right, and could only earn that right if they could climb inside my head and hang out there for a while.

The jury is out.

Anyway, remembering and reframing…

Early on in this whole discovery process last spring, I “came out” to my mum about it.  To my surprise, my mum wouldn’t say much when I brought up what was then, unbeknownst to me, a taboo idea: Asperger’s/autism.  And the fact that it almost assuredly applied to me.

Despite the fact that she knew her psychology, child development, and special Ed shizz, we had never had a discussion about autism.  Sure, we talked a lot (by phone, even!), waxing poetic and Noetic for hours on end, solving the world’s problems at least seven times over during each lively conversation, and we had covered pretty much all kinds of ground.

But it had never dawned on me that I couldn’t recall if I knew her thoughts on autism.  I don’t know if we had ever talked about it.  Well, it was too late, then, to obtain any of her thoughts by the time we did have such a conversation, because our first conversation about autism that I know of was when I “came out”, if you will, to her that I was on the spectrum myself.

Those lively conversations became…a little less lively.  What was it replaced with, on her side of the conversation?  Contemplation?  Guilt?   Shame?   Shock?   Interest. Curiosity?   Attempts at memory, which has faded since her brain injury?   Skepticism? (“Oh here we go again–Laina’s next borderline hypochondriac theory that justifies her character flaws in yet one more obscenely rare and unlikely way?” (My assumptive words, not hers).)

Her silence was no help; it revealed nothing.

I almost had to prompt, “hello?” to make sure the phone connection hadn’t gone dead.

She was there.  And I knew she was listening because eventually (as in, in subsequent phone conversations), she had replied to one of my excited lists of that week’s a-ha moments with, “that reminded me of your sister, the way she would line up her toys and whatnot.”

(Yes, we’re a somewhat stereotypical Asperger’s/autistic family at times.  We even had the Lego collection to prove it.)

I wanted to protest, “no, mom!  Me!  These are the answers I’d been looking for, without even knowing it!   This is my code-key!  This is my ticket to freedom!”

But I merely responded with, “that’s right!  She did, didn’t she?”

My bad (?)

But hey–mum had actually said something!  It meant she’d been listening, and not just playing computer solitaire, waiting for me to shut up and move on to happier, greener conversational pastures.

Indeed, everything I told her was positive, or at least neutral.  I was ecstatic inside.  I hadn’t banked on the lukewarm (at best) response.  I might have been doing cartwheels in my brain.  But apparently, she wasn’t.

Maybe it was just an internal question deep inside her that, while recovering from the bomb I just dropped, she was dazed and confused and wondering, “now what?”

Maybe she just needed (an agonizingly extended period of) time to collect her thoughts and find her words.

Hell, maybe she’s capable of losing her words, too.

One day (probably five to ten conversations after the initial ultimate “oh by the way, I’m autistic/an Aspie”), she finally said, “OK.  But don’t let it define you.”

To which I couldn’t help but respond with something like, “but don’t you see?  It does define me!   It explains, too neatly, everything that I am.”

Eventually, she said something along the lines of, “what I mean is, don’t let it limit you.”

I could agree with that.  Of course, the lonely dot that she might not yet have connected was, that it already had limited me, all my life.  Invisible, heavy chains had been attached to my ankles and wrists, weighing me down during every move, making every step, every motion harder.  Because no one, not even I, could see the chains, none of us knew they were there, and none of us knew why I couldn’t do what others did, or if I could, why it seemed to take so much more energy out of me than out of anyone else.  I had long since chocked it up to “everyone is like this” and gone on my not-so-merry way.

Now, however, I must be careful.  The temptation is there to say, “do I want to make this effort, see or talk to this person, accomplish this task, and so on, or do I need extra recharge time?”

How much of my desire to sit around and recharge is due to an actual need, or am I going a little overboard with the self-compassion?

Part of me wants to retroactively recharge under the (legitimate) guise of self-care, to make up for lost time not self-caring.

But the other part of me reminds me that that time has passed, there’s no getting it back, and there is indeed life that must be lived, with its tasks and obligations and meetings, today.  It might spell disaster if I tried to replenish my full energy deficit and pay myself back for all the extra effort that it turns out that I might-should not have had to make in the first place.  If I did that to perfection, my current life would probably suffer.

So I have to check myself at the door.  My life is one giant, long tightrope.  Do I legitimately need this downtime, this day off, this half-day, this day at home, this time to goof off and do nothing,…

…or, am I babying myself too much and giving myself too much of a pass, using the Spoon Theory as an excuse?

Sometimes, it’s hard to tell.  Especially when it comes to situations like this.  Is that alexithymia talking?  Or am I simply trying to justify avoiding something because it’s emotionally difficult to face?

It’s like walking a tightrope.  One that is pulled taught, with no leeway, no latitude, no room for error.

Brains these days.

Some people might have choice words for me right now.   “Well, if you can’t even tell if you’re out of spoons or not, then you still have some left, and you’re not a real spoonie!   A real spoonie can’t forget that they’re out of spoons, because it’s always staring them in the face!”

That might be true.

Or have I really been running dangerously low on spoons for a much longer time than I realize, and I’ve been going for so long, learning to ignore my own needs, because I didn’t know that I actually had the choice, and didn’t know how to preserve myself?

If the latter is the case, would that fall under Hyposensitivity, Executive Function issues, or a Theory of Mind turned inward toward myself?

See?  I’m still a new kid on the block.  I don’t know everything (at least not yet (grin)).

Hell, I can’t even tell if I’m dealing with internalized ableism, or asking legitimate questions.  And the fact that I’m even questioning my own questions on the basis of the alexithymic and Theory of Mind elements of my Asperger’s/autism might even in itself be internalized ableism.  Do I have a right to ask those questions anyway?

I think the issue is, for me, probably a combo of executive function and Hyposensitivity.   I tend to yin and yang a lot with sensitivity.  The same applies to my own self-awareness.  It’s all one big yin-yang.

That doesn’t let me off the hook for taking caution, though (at least, I don’t think so?).  I do have to recognize when I’m trying to give myself a more frivolous excuse.  And I have to take just as great a care in making sure I’m not ignoring a genuine need.

The tightrope never ends.

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47 Comments

  1. I can understand. I think, for me, I am still unwinding so much of the old junk in my brain I am still learning how to recognize the spoons and not fault myself for having limits. I tend to have a lot of go-arounds in my head. I seesaw between scolding myself for laziness and defending my right to self-care. And I still find myself feeling the need to justify to others why I do or don’t do certain things. I experienced it last night, as a matter of fact when asked if I was volunteering for a certain function. It was truly an innocent question, I believe, and, luckily, for once, I was met with some understanding, particularly as we then compared notes on physical pain. ( my EDS, her RA) But, I thought later in my usual ruminating over conversation how much I still go on the defensive. Needless to say, still a tangled web. I think we have to give ourselves whatever time it takes to arrive at our comfortable and expect to examine and re-examine as life rolls along and we make new discoveries. So…don’t worry about “enough already”. Just do what you need to do for you. 😊 ❤

    Liked by 3 people

    1. I totally hear you, girl 😘❤️. Yep, you’re singing my song! Omg the words “defensive”, “justify”, and “ruminate”, yep, familiar words indeed! And wow, you have EDS too? Yep! You’re in plenty of company once again 💖🌟💖🌺

      Liked by 1 person

        1. Oh yeah 😊. I’ve been lucky so far in that I don’t have much pain. But I can’t take frequent joint manipulation or I’ll get messed up ❤️.

          Liked by 1 person

  2. You’re singing my song. These are the exact questions I ask myself daily at the moment as I progress from A-HA! to self-diagnosis and onwards to clinical diagnosis. Am I “more autistic” now because of confirmation bias or because of burnout that led me to seek an explanation for my increased sensitivity and prolongued loss of energy? Am I more sensitive and tired because I’m weaker, or because
    I’m indulging myself? Should I try harder to plough through or risk taking longer to recover?

    I say care for yourself and do what you need to do to feel well. When you’ve been fighting your body for so long you need to care for it.

    Liked by 5 people

  3. I’m still learning to say NO. Guilt, guilt, guilt😩😤 I’ve pushed myself to total collapse and I don’t recommend it😒 I *am* learning though, so that something. If I take a day that may not be “necessary* I figure it evens out with the days I pushed more than I should’ve. 👍😘💐😎

    Liked by 5 people

        1. “keep myself entertained and laughing or run screaming naked down the middle of the street.”

          why cant it be both of those?

          “NOBODY wants to see that”

          sure, i can pretend to go along with that.

          Liked by 2 people

  4. its like when you tell your family youre gay, and they say “thats alright, its just a phase.” in other news, i have no family. well, ive got a sister ❤

    its not just "stressful" that a wasted a few years trying to get them to understand. the harm i did myself by not cutting off from them entirely / sooner / at every opportunity, has already cost me so much. there were perks, but none worth the costs. theyre nothing like my family anyway. the family i grew up with might have understood. these are the family that wash their hands of everything, except their imaginary "straight" (normal) son. all bastards.

    Liked by 2 people

    1. In my world (uh oh) Biology doesn’t make “family”. Family is people who care about & support each other. My mother, my brother…Not so supportive, so I haven’t seen or spoken to them in about a year. Life is too stressful already. No need to deal with poopie heads just cuz they’re “family”

      Liked by 2 people

          1. What an amazing end to my day, to be able to read y’all’s comments and giggle with your conversations and bask in the shared siblinghood 😘. Thank you for that 💖💜🎉🎊

            Liked by 2 people

          1. i was thinking of it too! (after i looked up the best lyric to post)

            i frequently compare masking to being closeted and acceptance to celebrating/loving your gay children completely, instead of “despite” autism. i also compare a$ to the churches that “cure” homosexuality. we need to find the cause of being gay! im still generally “closeted” about asd in person, but im “out” to some friends. im somewhat closeted online, but i will be outed if i get well known enough. i sometimes advocate in person, especially around this time of year.

            Liked by 2 people

          2. ive got a lovely sister and im still looking for a (kind of sexy?) aunt if youre interested. i dont think youre old enough to be lainas mother but we arent sticklers, you know.

            Liked by 2 people

  5. if the spoonie brigade start wandering around the forest and declaring people to be true spoonies and poseur spoonies, i intend to throw a portion of my spoons at them, and aim for places that sting or thud.

    Like

  6. Once again, you are echoing my thoughts. I don’t know why I bother with my own blog since everything I could say has already been said 😉
    At the moment I can’t even imagine coming out to my mum, not even about the questioning. I can hear all kinds of things in my head that she might say. But perhaps I’m doing her an injustice, and she would not actually say any of them. Anyway, one step at a time…
    I’m only just realizing that I never realized how draining and exhausting things are and how my energy is being sapped in the background without me actually noticing. And then I immediately think, perhaps there is nothing to notice and I’m just looking for an excuse to avoid tasks and spoil myself. I can feel the tightrope under my feet as well.

    Liked by 2 people

    1. You rock, my friend! So cool to know that there are other (awesome!!) people out there who experience the same thing! Especially when the phenomenon in question is otherwise so unique 😊

      One step at a time, for sure. I think I came out a bit too soon and a bit too abruptly 😉. I probably should have taken a little more time to formulate my approach and choose my words. Needless to say, I’m a bit more careful now 😉

      Please please keep bothering with your blog! 😉😘❤️. I adore your writing 💖🌟💖

      Liked by 1 person

      1. Oh, I wasn’t serious, hence the winking face! I’ve had a tough week, been quite overwhelmed with other things so I haven’t been able to devote any energy to the blog in the past few days, but there is some downtime ahead, so it will definitely continue.
        Thanks for your encouraging words!

        Liked by 1 person

        1. Lol 😘😘. Relieved!! Please forgive me for my reading comprehension fail 😉💞. I’m so sorry to hear you’ve had a rough week! I hope that the tough streak has reached its end and that today is much gentler to you 💐🌷💞🌟

          Like

  7. When I first got diagnosed I had the same thought. Am I really that bad of an accountant, or maybe if I tried harder and found another job with a different environment, I could do better?

    I’m lucky that my fam let me stay at home after I quit, because I have had time to think about it. I’ve been able to acknowledge that the performance issues I had at work were because I did too much without any clear detailed instruction and was low on spoons fairly quickly.

    Liked by 1 person

    1. Thank you so much for sharing your story ❤️❤️. Ahh yes, I know the Inner Critic all too well; what could I have done differently, how should I have handled this, what should I have said, why can’t you do this or that, and so on–at least, those things are what my Inner Critic said (and still says) 💚💙.

      I’m so glad your family was supportive! And I’m really happy for you that you’ve been able to examine your past without judgment, simply acknowledging what happened. Spoons are so important! 💜💓💜

      Like

  8. Regarding resource-management:

    If you ever wonder where the diving line between laziness and fatigue is, it is likely that you’re yet upon the shores of fatigue.

    If you don’t wonder, then you’re either ignorant of the concept (of resource-management) or – this is *very* unlikely – you’ve arrived at the region of lazy.

    This is trebly so if one is autistic (irrespective of actual expression). The reason for this: you are likely to have a fair number of (predatory) Norms getting after you – and if you’re like most autists, you will be 1) outraged – and not in a Normie way, but in a ***real*** one. 2) you will tend to redouble your efforts, presuming you are able to do so.

    Finally, if you accuse yourself of laziness, it is likely that “the implanted Normie named ableism is doing so. Remember: most of the people accusing you of ‘character flaws’ were likely to ***not*** be ignorant. They had ulterior motives, most likely; and by accusing you of ‘moral decrepitude’, they made themselves look better via ***relational aggression***.

    I had to learn this the hard way – namely, that treating much of what I dealt with then (and now) as a ‘character flaw’ did ***not*** favorably affect the situation. (I needed to treat it like the physical handicap(s) I was born with / had acquired to achieve ***anything*** of a favorable nature.)

    This is ***more so*** when one is saddled with chronic fatigue syndrome, or something that looks like it (caused by chronic pancreatitis, at least in part.)

    Like

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