I’ve been noticing that a common experience among myself and my autistic loved ones, as well as autistic people I hear from online, is the experience of crippling distress in reaction to a perceived loss of agency or autonomy.

Some close-to-home examples:

• If my 9-year-old autistic daughter has had a long day, and I say that she has to brush her teeth before having more screen time, she utterly melts down.

• If I give my 4-year-old something to eat that she hasn’t consented to, she’ll throw it right on the floor.

• My autistic BFF sometimes gets debilitating depression and emotional paralysis when she feels powerless to protect herself from victimization.

• My autistic sibling has been known to lash out when feeling trapped in some way.

• I (diagnosed level 1 autistic) notice that I start emotionally shutting down in significant distress when I feel trapped and unable to take care of my needs, like at an overwhelming social event that I feel powerless (even just too overwhelmed/paralyzed) to leave.

These examples are overt, but I often notice many more subtle instances of this dynamic in all of the individuals above, especially myself.

The common thread is that we feel like our autonomy has been taken away—our consent has been railroaded over—and we are powerless, helpless, and trapped in an unaccommodating situation.

We then react like my cat Milky when he’s forced into a cat carrier: scrambling and squawling, in our own particular ways.

Here’s an earlier version of this perspective, from my journal in June:

Maybe the main difference between being regulated/grounded/“in my seat”/well and not—at least for me—is whether I feel enabled to make my own free choices and get what I need, or I feel trapped and subjected to constraints from outside myself. (I’m guessing this is a common experience of autism.) Autonomy —> wellness; constraints —> depression.

Understanding this about myself and my autistic loved ones shows me how to better help us: in addition to general practices of regulation (routine, connection, etc.), during distress, try to find choice points of autonomy. For example:

• With my kids, when they’re melting down, reduce (if possible, eliminate) demands, and try to find real choices I can offer them. (This may have to wait until they’re calmed down enough to think/hear me. I try to stay right with them during meltdowns, until their nervous system slows and co-regulates with mine.)

• For myself, when I’m feeling overwhelmed or powerless, get as rational and mindful as I can in looking for choice points and options. It can even help to name options that aren’t actually options I want, just to show myself that I have options: I could not fix lunch for my kids; I could skip work today; I could leave the milk and other food out to spoil overnight. When I choose not to take those options, I am instead choosing what seems to me my “best-guess best option” (a helpful phrase my friend and I use a lot), even if it’s hard and I just have to get through it. It’s still an option, and just recognizing that can help tremendously to shift me from feeling like a helpless child to feeling like a mindful, consenting adult.

I think the word “agency” is a helpful distillation of all this. We need a sense of agency in order for our nervous systems to feel regulated and safe. This is perhaps true for everyone, but at least/especially for autistic people like me and my loved ones.

All of these thoughts were part of what went into my latest Serenity Splash poem, “Enduring (self-abandoned) vs. Enduring (self-companioned),” so I’d like to close this by sharing it again here.

Text within this block will maintain its original spacing when published

There's a kind of enduring
  hard moments and tasks
    that’s not the same at all
as the kind of enduring—
  helpless and alone—
    we did when we were small.

I learned to suppress
  my feelings and needs
    and pretend everything was fine.
You learned that there
  was no one anywhere
    who cared about your cries.

Now we’re grown
  and in the grind,
    but we have points of choice—
to recognize our options
  and respond 
    to our own voice. 💗

I’ve been newly coming to understand that I need a lot of downtime in order to be well.

By “downtime” I mean solitary time without external pressures when I can gather my wits, move about freely, tend to my body’s needs, get my essential belongings organized, and generally see how I’m feeling, see what I need and want, and so on.

I’m coming to see “downtime” like this as an essential, basic human need. Perhaps that is obvious to you...but I didn’t realize it until recently!

I feel like I spent the majority of my growing up years, especially my adolescence, in acute survival mode just from not getting enough downtime. I thought that was just normal, what life was like for everyone.

I don’t know about everyone else, but increasingly I gather that neurodivergent people need a lot more downtime than neurotypical people.

That model helps to explain my experience—why I have been so slow to understand that 1) I need a lot of downtime in order to feel well, and 2) it’s okay and essential to avail myself of downtime as much as I can.

Without enough downtime, I live in burnout, frustration, stress, strain, and survival mode/sense of crisis.

But when I get some solid downtime, I can return to a sense of true inner choosing, of being able to capably consent or not consent to things, and to being truly present—with myself and with others, most crucially my kids.

Downtime is thus critical for my mental health, physical health, and relational health.

May I get some soon—and may you get some too!

I have a guess that many autistic/neurodivergent people, especially those who grew up undiagnosed and “high-masking,” experience a constant background drone of self-doubt that goes “Maybe I’m doing it wrong.”

Raise your hand (figuratively) if that’s true for you. I’m raising mine!

I’m interested in this dynamic, and I have some guesses about how we developed this default soundtrack of “maybe I’m doing it wrong”:

1. We grew up straining to figure out the social rules that came naturally to others. This includes the implicit rules and expectations of our parents, as well as of the culture around us (like my fundamentalist evangelical culture).

   --> So we developed the instinct that if something felt uncomfortable interpersonally, it must be our fault.

2. Other people treated us--and we learned to present ourselves--as though we were more capable of handling things than we really were.

   --> So we developed a belief that we theoretically could handle/manage things, and it was our fault if we didn’t do it well enough.

3. We lacked clear awareness of our own feelings, physically and emotionally, due to our innate autistic struggles in that area combined with the external pressure to ignore our inner experience and conform to others’ expectations instead.

   --> So when something felt bad, we didn’t have the capacity to understand that we were having feelings--much less to respond usefully to them; we just absorbed a sense that we had somehow caused this vague, all-encompassing awfulness.

What else do you think contributes?

Helping myself unlearn this core belief is a major theme of my healing journey, and I hope to write more about self-doubt specifically in the near future. Let me know if this is something that resonates with you. 💙

I’ll close with my “Serenity Splash” poem from yesterday on this topic:

🪷self-doubt fog

Like midsummer’s humid air,
my self-doubt fog is dense today.
Drops of shame stick to my skin;
worry vapor enervates
my mind. Have I screwed things up?
Is So-and-so displeased with me?
My spirit sags--I need a breeze
of fresh, cool rationality.

How can a person possibly keep “the independence of solitude” while “in the midst of the crowd”? I’ve long needed an answer to that question…and I think I’ve finally begun to find it.

In the past year or so, I’ve changed a lot, mostly in my “persona”—how I present myself and relate to people externally.

For example, years ago, the people who interacted with me and passed me in the halls at daycare met a version of me that was friendly, smiley, and prone to awkward conversation. That was “masking” me—my persona of performing the social conventions I was taught.

Now, those same people meet someone quite different. I keep quietly to myself, not interacting except when the occasion truly warrants, and then keeping my words to a minimum. I’m usually wearing headphones, sometimes plus sunglasses and/or a hat as well. This is “unmasked” me.

I still smile at people and talk to them sometimes, and I don’t think my overall vibe is unfriendly. I aim to project an air of quiet calm—which actually can be true to how I’m feeling when I’m not straining so hard to appear sociable!!

As another example, all year at my kids’ dance classes, I didn’t try to be one of the social moms chatting and managing everybody, as I would have before, thinking that was what I was supposed to do. Instead, unless my kids or someone else needed me, I sat with my headphones and my knitting/writing/reading. Ahhh…so much better.

More and more, being that old persona of friendly competence feels strange to me, and being quiet is what feels authentic.

I’m still the same on the inside—but now I can much more easily stay present with my inside-self, because I’m actively protecting myself instead of straining to pretend to be like everyone else.

It’s like I’m a turtle now, instead of a chameleon! 🐢

Or in verse form:

I’m still me inside,
if you cannot tell;
but instead of a mask,
I wear a shell.

🐢

It feels like I’m finally figuring out how to exist in this world and still be me.

Part of me wants to sing in celebration of this growth.

Part of me wants to cry with grief for how long I strained to be someone I was not.

I’ll just let those parts take turns. ❤️‍🩹

When I look back on my growing up years, I’m boggled at how much time I spent in places and situations that felt uncomfortable to me—so much of school, church, and youth group, especially.

But it was all I knew; it was the air I breathed. There was no use in paying attention to my feelings of discomfort, because they were just part of how the world was. There wasn’t even a concept of “I am feeling uncomfortable”—just “this is how life feels.”

Now, decades later, as I sit at my kids’ dance studio feeling uncomfortable with the noise and people moving around me, I understand that this is not just how the world is. This is an experience of suffering particular to my special needs (i.e., autism)— which now I do pay attention to, make discerning choices about, and find ways to accommodate.

Life feels infinitely better now, and I’m infinitely grateful.