u/Stone-Salad-427

I’ve been disabled for a few years.

Going for the second part of a neuropsych tomorrow to evaluate my asd and specifically the autistic burnout costing so much function. I am struggling significantly with executive function, interpersonal anything, self care, sensory overwhelm.

The trick is it’s a 5 hour long appointment and I am still recovering from the first 3 hour appt a month ago. I can’t human for that long.

And they’ve changed the time, the length, even the doctor on me… there’s so much uncertainty and I’ve been a wreck.

My MCAS, POTS, hEDS all acting up because of the stress.

Trying to succeed within a system that is inherently unaccommodating in order to be accommodated is a real mind fuck.

Thanks for listening. ♥️

I wish I were pitching feature stories, writing op-eds, sitting on a backlog of content to share on Substack. I wish it were easier to feed my family, not in the financial sense (although that, too), but in the planning, shopping, and preparing of meals. I wish I were more on top of my kids’ medical appointments, extracurricular demands, more able to support their budding social lives.

But I’m not. I can’t.

Not for a lack of desire. It’s the invisible chain of executive steps. It’s sensory overwhelm. It’s the inability to navigate interpersonal ambiguity. Meal prep, for instance, requires knowing what is already in the fridge, deciding what to make, considering what everyone will actually eat, remembering others’ schedules and planned events, building the grocery list, sequencing the trip or ordering the groceries, putting it all away, focusing on the multi-step process of cooking while constantly interrupted, timing it all right, then recovering from the cognitive load of the whole thing.

For most of my life, my neurodivergence was the vehicle by which I drove harder and faster, until autistic burnout was what careened me off the cliff of my purported capacity. Raymaker and colleagues (2020) describe autistic burnout as pervasive, long-term exhaustion (mental, emotional, physical), loss of function (difficulty with executive functioning, communication, daily living, or previously manageable responsibilities), and reduced tolerance to stimulus (increased sensory overwhelm and lower capacity for cognitive/social demands).

Perhaps you relate because you’re also navigating this burnout, or maybe because you’ve reckoned with your limits some other way, due to chronic illness, disability, caregiving, job-loss, or grief. Maybe it’s perimenopause, adjusting to sobriety, or crawling through mental health issues.

And yet recovering is treated as a consumer choice made from abundance, when for many of us it must be attempted from depletion. Wellness culture promises we can buy or hack our way to a better us, but what about a relationship with limitation that doesn’t require us to overcome it? Attunement over optimization, or an ethic of accommodation and self-compassion rather than self-punishment.

Therapist and researcher Megan Anna Neff, who is herself autistic, teaches that autistic burnout recovery requires a genuine and sustained reduction in demands, not a new system for managing them. The instinct, one I have had a hundred times, is to rebuild the productivity structure, to install the right app or adopt the right routine that will finally make output feel manageable. How many times have I been “almost there” on a Notion system to finally make it all work? Dr. Neff explains that the optimization compulsion is itself a symptom, soothing in the moment but avoidant of the actual need. The actual need might be less. Not better management of too much. Actually less.

Unpredictably, writing is sometimes easy. Other times, I spend weeks wandering through the hours with an empty whiteboard for a mind, unable to locate the marker. Both of those are me. “But I might lose subscribers” is a worry somehow eased through acceptance. I might, and I’ll survive.

I’m doing what I can, as I’m able. The version of me that crushes a live, global news interview is not more real than the version that cannot answer the door. I’ve learned that while many will take the most visible version of us as the truest one, we are allowed to know otherwise.

If you haven’t experienced capacity loss yourself, it’s hard to understand that both versions can be real. People tend to anchor to whichever one they saw first, or whichever one they need you to be most. Our mountaintops become the new baseline–every moment that falls short of it feels like failure, evidence of something wrong or worse, deception.

Capitalism doesn’t run on compassion, we have to carve it out for ourselves. There are likely many people in your life who stand to benefit from believing it’s a lie. For me it’s the former employer I’m suing, my disability insurance, the man I’m divorcing. Maybe, for you, it’s the friends whose own self denial depends on yours, or the partner who’d rather you suffer than he step up.

“Their job is to invalidate you,” my therapist said once, “your job is to take care of yourself anyway.”

Variable capacity demands we stop treating our peaks as promises. The version of you where capacity and ambition were aligned was not a lie, and neither is the one who can’t get out of bed.

I am not offering a solution. Wellness culture has enough of those, and most of them were designed for people with a surplus I don’t have and you may not either. I’m suggesting the metaphorical freezer dinner (or a real one, if cooking is as hard for you, too). I’m suggesting paper plates. I’m suggesting that peanut butter on crackers can be a complete meal.

My kids don’t have a mom who is on top of everything, but I’m modeling that I can love and accept myself anyway. That I can ask for help, that my worth is not measured by my output. That some mornings I can make waffles from scratch, but most of the time I rely on someone I never expected to be my lifeline, their dad (who, fortunately, is not the man I’m currently divorcing), to plan and execute the meals that land on my table.

Learning the actual shape of our capacity rather than the shape we wish it had, or the shape others need it to have, is the beginning of becoming truly well. Not optimization, not hustle. Just: this is what I have today, and I will work with that, and that will have to be enough. Sometimes it will be, and sometimes it won’t, and both are survivable. Gentleness can guide me either way. And sometimes, there will even be waffles.