What it feels like…

Monday, I went fabric shopping. With an official date for the wedding now, I feel overwhelmed with all the things that need doing. A wedding dress to sew, bridal bouquet to crochet, bridesmaids crowns and bouquets too. Invites to make and send, place cards. It boggles the mind how a small, simple wedding can cause such a fuss.

But that was not what was so remarkable about this trip. What made it noteworthy was the fact that for the first time in a few months, I went into town alone, did my errands, and got back without a complete shutdown or meltdown.

What do I mean?

Well, the time before that, I had gone into town for grocery shopping. I was hungry when I left the house, but planned to stop at Burger King. Except when I got there, it was closed for refurbishment. Of course, chili-cheese bites was all I wanted to eat but were not an option. I decided to go with McDonald’s instead, for the sake of expediency. But there were so many people there that I did not even bother going in.

Plan C – grab something quick at Tesco’s cafe before shopping. They too were packed. Most of the tables were full, even the few empty ones were stacked with dirty dishes. So, I parked my buggy in a corner, cleared a table right next to it, and got in line. Except when I looked up, some man had moved the buggy and taken the table I had cleared. I lost it.

I probably should have left then but I was desperate for something for PanKwake. I did abandon all pretense of eating though. I grabbed my buggy and headed off to shop. Except this family was looking at school clothes. The four of them had lined up in just such a way to block the whole aisle. I lie not, I wanted to run these people over with my cart. Seriously.

Finally, they moved their fat a$$es (yes, I certainly have nothing to say considering the size of mine). I spent the next fifteen minutes rushing around the store, cursing. Yes, cussing. Swear words. Not loudly, but quietly. It was my verbal stim. And the only way, I could manage at that point.

I bought three times what I needed. Some of that food ended up in the waste, something I absolutely hate doing for environmental reasons. But I was beyond my capacity to think logically at that point. I even bought a chocolate delight doughnut from Krispy Kreme and a Pepsi.

But my trials were not over yet. There were no cabs. I called and was told one would be with me in a couple of minutes. I ate my doughnut and still no taxi. I had to walk across to the one at the bus stop, pushing my buggy.

I barely made it home and collapsed in his arms. I spent the rest of that day and much of the following one almost catatonic. I could barely do the things I needed to for PanKwake.

But what is even worse is the guilt and disappointment. I keep asking myself: what is wrong with you? I spent over forty years ‘faking it’ from the time I started school and realized I was not like the other children until at least my nervous breakdown at forty-five following my miscarriage. While I was never one of the ‘in-crowd’ or ‘highly successful’, I finished school, married, had children, held jobs, kept my home, drove, and generally did all those things that everyone else did. Now, I can barely leave our @HomeCrazzyHome without melting down?

Why? What has happened to me?

My mask is broken.

That ‘mask’ of ‘normality’ that as an autistic little girl I had created is not just cracked (as it perhaps always was), but it is utterly and completely shattered. Broken so badly that all the superglue in the world cannot put it back together again.

On the one hand, that is good. I always knew that mask came at an incredibly high cost. Even before I recognized my own autism, I was never in favor of teaching PanKwake masking skills. If she melted down, as long as she and others were safe, that was all that mattered. And certainly, things like her clothes, hair, and education need not be ‘normal.’

Her best friend is a schooler and autistic. She struggles with bullying. This year she decided that she was going to dye her hair, get the ‘cool’ clothes, and ‘stop being weird’. She would make friends at school and all would be great. My heart broke. I remember being a teen; thinking and doing just that.

It does NOT work. You can never completely mask, simply because the cost is too high. To change not just the way you dress and how you act, but who you are, is not possible.

Just a couple of weeks into the new school year and already her friend is discovering that. All we can do is be there for her.

No, masking does not work. And its cost to your mental health of this need to be ‘normal’ is probably one of the reasons that autistic people suffer such high rates of mental health issues and suicide.

Nonetheless, at moments like those in Tesco, I hate myself. Why can I not just go to the store, get what I need, and go home…like everyone else?

The issue for me is one of control. I need a plan. I need things to go according to that plan. Then I can function. But when things happen…like Burger King being closed, I can no longer cope with unexpected changes.

What frustrates me is…I once could. I made a whole career as an event planner and fundraiser by planning, making contingencies, and adapting on my feet. But I have lost that ability.

I have burned out. All those years of trying to be ‘normal’ have taken their toll on my executive functioning. You see all my to-do-lists, my plans, those contingencies, my constant self-regulation, and analyzing were coping mechanisms. They were never easy or natural for me. They were tools and skills that I developed to survive. But I overused them. And now they don’t work the same for me anymore.

Don’t get me wrong, I can still do things that are important to me. I can mostly keep our @HomeCrazzyHome. I can care for PanKwake and Alan. I can even have friendships…but on my terms now. I still use those lists and have added reminders from Alexa and on my phone to help. Day-to-day, in the familiar and safety of @HomeCrazzyHome, I do pretty okay.

But when I go out THERE, when I must deal with ‘society’, when I am expected to obey rules that make no sense in a world that values the wrong things, a world over which I have no control, then I cannot handle the hiccups. I can no longer adapt to sudden changes.

So, I find myself staying home more. Thankfully, in this modern world, much of what you need can be delivered to you. And I am incredibly blessed to have a life partner who understands and accepts. One who will more often than not go to the store for me. We joke now that I should not leave the house ‘without my carer’, i.e. Alan.

Has it come to that? Perhaps not completely. But I must also face the fact that PanKwake has better coping mechanisms than I do. I think and hope that is partly because she has never felt the intense pressure to be ‘normal’, to mask. She certainly has more understanding and empathy for society than I do.

So, that is how it feels… At least for this autistic woman, who discovered her identity late in life. Would it have been different if I had known earlier? Would it have mattered? On the other hand, would I have accomplished as much as I did by ‘masking’? Were those experiences worth the high costs? These are the thoughts I ponder as I go about my daily life. A square peg in a round hole world.


2 responses to “What it feels like…”

  1. Thanks for this post Tara. It resonates with me. I’ve really begun to notice that I can only cope for an hour or so at busy museums, stately homes and events – even if I’m really interested in what’s on display. I’m then itching to get home to my comfort zone as I’m “out of spoons”. This is frustrating – but it’s how it is. Last weekend my husband, Andy, went to a fabulous aeronautical museum as he wanted to spend a day there. As much as I want to be with him, I just couldn’t do it. It would have finished me off. Fortunately, he gets me and I get him.

    So as usual – I hear you sister!

    1. Gla dthat you enjoyed the post. And miss you!

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