56 & spectrum

Do I look Autistic?

I know, maybe that’s in poor taste. Do I look Southern? Or chronically ill?

When we pass someone on the street, or reconnect with an old friend, how can we know what they’re going through, if they don’t tell us? Most of us know we need to tell people when there’s something going on, not wait for them to ask.

Still, it’s taken me that long to get around to this post, so my friends can know what’s been up with me.

I learned a few weeks ago that I’m on the Spectrum. Autism Spectrum Disorder, Level One. There’s something almost humorous about learning this at my age. It’s a long time to go around nearly clueless, 56 years.

Over the past few months, I’ve also learned I have Lupus, Candida, Leaky Gut, and a parasite (ew.) The first one, along with the Autism, is not going away. The others can, if I follow instructions and get lots of rest.

Combined with the Arthritis that I already knew about, most of these hitchhikers share a lot of symptoms. Now that I’m on a few meds and supplements, and a diet that’s restricted to items I can count on my fingers, I’m feeling a lot better.

Of all the diagnoses, the Autism one knocked me off my feet.

Funny thing is, I suspected I was on the Spectrum. Most of my friends know I’ve raised a son on the Spectrum (and he’s doing very well, thank you!). I had a hunch from the first online questionnaire I answered about Lucas back in 2000.

“But, I do that too… What do you mean, Autism?”

I wasn’t really in denial about him, I just had a particular view of what the diagnosis meant. How it would impact our lives. My most militant opinion about it – in his case – has been that it’s not so much a disability as a state of being that merits a different kind of attention, education, patience. The times I’ve been angriest are when folks haven’t taken the time to ask him how he feels, what he wants and needs. Haven’t taken the time to pry the answers out of him, because sometimes that’s what it takes.

And over the years, he’s learned to advocate for himself a bit. He still needs support.

So I thought I had a pretty good understanding of what an Autism diagnosis meant.

To hear that label applied to myself shifted the tune. I drove home from the therapist’s office relieved, on the one hand. On the other, all I could hear was my life in a minor key.

My head reeled with all the challenges I’d faced over the years. Somehow I’d managed to adapt and almost fit in. Make lasting friendships. Keep jobs. Sometimes.

What was new, was that now it became clear that it wasn’t just my imagination that it was all so… hard.

Most people don’t think and perceive like me. Really? Now that I look around, I can see it. I first began to pick up on it in my forties, but I didn’t know what to make of it.

It’s not uncommon for folks on the Spectrum also to be powerful empaths, even psychics (raises hand). Maybe that’s what helps us get along. We can sense when we’re off key, when we need to adjust. And if we’re able and willing, we shift, in hopes of finding companions.

The thing is, when we spend our lives doing that – trying to figure out how to act so we seem to fit in – it’s not only exhausting. By the time we’re 56, we can lose track of who we are. What we want. Our dreams.

Starting Lotus Dance Press in 2016 was one of the most exciting and terrifying things I’ve done.

It’s also the most hope-filled. It’s a dream I’ve held in secret since my early teens, despite all the other things I’ve done for a paycheck. I’ve always wanted to illustrate children’s books.

It’s ironic that it’s taken great difficulty to unlock the door to that dream. When I filed the LLC papers in 2016, I was still reeling from severe concussion symptoms after a car accident that June. I’d lost my job shortly after returning to work (does anyone really expect to keep a job when they’ve been out for 3 months?), was at my wit’s end, and scared s***less.

Making a self-affirming statement seemed essential.

Receiving the medical diagnoses earlier this year underlined the need to get on with it, if I ever hoped to see that dream blossom. Time might be short for me from here on out. No way to know.

The words “ASD, Level One” wrapped it up into a package I could get my head around. That bit told me, between the lines, that there was no point in waiting any longer. I was not likely to discover some magic secret to doing this successfully. I’d already done the research. Crossed the t’s and dotted my i’s.

It’s just time to do it. Stop worrying about what others will think, because you’re not gonna do it the way they would have, no matter how hard you try.

Here’s more irony, that a diagnosis which might appear unfortunate actually opens the door to a freedom I’ve never fully known.

To be myself, without hoping expecting others to understand.

So 21 Steps To Happiness sits on Amazon, awaiting purchasers. Maybe the price is a bit too high. I dunno. Maybe only family members will buy it. Maybe no one but my Mom will ever review it. Of course I care, but I’m still having my party.

It’s not so much a book as a symbol. A gesture to myself that acknowledges: Yes, 56 years is a long time to hope someone will understand.

Now I’m free to be eccentric and not wonder if I need to somehow, magically, change.


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