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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(Image Credit: Isabel Sophia)

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