Aug.07 - Blaugust Day 7 - Holy cats, my doctor thinks I'm autistic

My first Eleventy blunder

I set up the front matter for this page this afternoon, in order to write a post later - then accidentally published it when I was making some other files live. Title only, no text. Whoops! That's a lesson learned. In Hugo there was a way to set a page to "no publish" in the front matter, and I'm sure there's probably a way to do that in Eleventy too, but I haven't looked it up yet. I've had a lot on my mind today.

So this was news

I saw my doc this morning for a regular visit (chronic illness means I see her every 4-6 weeks, sometimes more), and she asked me how things were going. I told her truthfully: not so great. She asked why, and listened (she's awesome). Then she asked if I'd ever been evaluated for autism.

I think I almost startled. I told her I hadn't, but my autistic kid, home on college break, has been nudging this possibility at me for awhile, and especially the last few weeks as I've been having this recent downturn. She said having an autistic kid made her more convinced I was autistic, and that everything I was describing, the last couple months of severe sensory overwhelm, the panic and dysfunction, sounds very much like autistic burnout.

She said she was prescribing me a book. She wrote "Unmasking Autism by Devon Price" on her prescription pad, ripped off the page, and handed it to me. We talked some more. She said it might be hard to read, that I may get pretty emotional about how much it resonated.

This reminds me a bit of when I found out I had ADD. When I was diagnosed 25 years ago, there was both ADD and ADHD, and my diagnosis was ADD: Inattentive Type. I loved my therapist but didn't believe him, even though he'd just spent twenty minutes reading through a 3-page inventory of symptoms, and Greg was in the room with us and was affirming every bullet point with me.

He said, "Okay, well, even if you don't believe me, when you get home, get on the internet and look up experiences of people living with ADD - especially those of girls and women." I said sure, fine, whatever. I got home, opened my laptop, found my first website, then my second, and by my third, I was sobbing.

The intersection of this with chronic illness

I've talked a little bit about nervous system healing programs, also called brain retraining programs. I've (inconsistently) done several of them (more on that in a future post). I've watched other people (far more consistent in practice than myself) get significantly better with them. One person I know even went back to doing triathlons.

For me, the benefit of three years of off and on work with these programs has been overwhelmingly psychologically positive, but physically only mildly helpful. Which is not congruent with those who find success with them. Usually, the improved mental health correlates with an improved physical condition.

Mental health improvement

In mental health terms, the past few years has been a steady upward path. I'm so much happier, in life and with myself, than I was 3-4 years ago. It's a remarkable change, and I'm proud of the work I did to get here. To call it a transformation wouldn't be an exaggeration.

I was able to understand my story. Things that happened in the past, the way I was brought up, the experiences I had as a kid that were different and/or traumatic, my family, why my teens and twenties were so brutal, why I struggled with the things I struggled with; in just a few short years, this went from feeling like a chaotic, steaming, painful pile of personal history that I couldn't make heads or tails of and often felt utterly chained by, to an organized understanding of my story, and a sense of real release and freedom.

I mostly (<-- see note below) know why I struggled. I understand what happened. Getting perspective on all of that was deeply healing.

My nervous system: seemingly getting steadily worse this whole time

I've been so confused as I've watched my physical condition get a little better in some ways, while in other ways, it's much worse. It's such a strange, mixed bag. The basic problem seems to be that my nervous system is just fried, all the time. Fight or flight runs 24/7.

I startle easily, have chronic stress dreams, can't drive because of panic attacks, don't really travel, can't do a lot of things because of these. They aren't regular attacks. Oh I used to have those, years ago. How quaint they seem now! What cuties, those terrifying but short 15-minutes heart-racing episodes! These are what things like the DARE app are for. Normal attacks. Normal anxiety.

After twenty years of this, it's evolved to a whole new species of Predator-like attacks, including a constellation of debilitating physical symptoms. I'm worn out after every one. I lose whole days to this. Weeks even. For years I'd call them "episodes" in my journal. Now I call them "events".

I have joked for a long time that my nervous system is like a small woodland creature's. This descriptor was cute for awhile, but I'm a little weary of it now. It's deeply demoralizing to still feel so physically unstable, especially after so much good, solid, mental health work that has brought me real peace.

The whole AuDHD idea...

Being autistic at all is still startling. In the early 90's I worked in a preschool for developmentally delayed kids, and we had some autistic kids who were nonverbal and very much struggled to move through the world in the simplest ways. Later, I coached Special Olympics for a couple years and had similar experiences there. It's an old view of autism, and as the mom to a different kind of autistic kid, I know the picture has changed.

Still, I didn't expect to find myself in it.

I've done a little reading tonight about autistic burnout, and had to stop. I was getting overwhelmed. I did download Devon Price's book. Haven't had the brain space to look at it yet. Jupiter and I watched KPop Demon Hunters instead (it was fantastic, all the thumbs up).

This morning, I was texting Jupes from the exam room after my doc left to get some paperwork. They were like, "Obviously". My whole world was rocked, theirs was affirmed. What surprised me was when I got in the car and Greg said, "Yeah, I thought so." When did this happen? He'd apparently been listening to Jupiter's points on this issue over the last few months, and agreed.

On the drive home, we were laughing about the many times over the years when I've asked him to explain something to me, nearly always a social interaction that I either witnessed or was a part of, that I didn't understand. I always say, "Explain it to me like I'm autistic," because apparently I mask so well that even as a kid, people thought I was trolling them when I didn't understand something.

I can't fucking(!) count the number of times someone has not believed I was actually confused about something. I mean, thanks for the compliment I guess? But being disbelieved so many times, even teased for it (good lord that was confusing) or being accused of insincerity (have you met me?) was incredibly painful. Asking for an explanation "like I'm autistic" means, "consider this a good faith question from a sincerely befuddled person." It's pretty amusing now that I might...actually be autistic.

I think the thing that really got me was when I was telling my doc about all that good mental health work I'd done, and how I'd realized through it all that so much of my struggle has been the energy I spend trying to appear normal. We talked about masking, and she related some of her experience as a late-diagnosed AuDHD woman (her spouse is also neurotypical, like mine - I joked to Greg later that some people really enjoy a challenge), and she was putting these last few pieces together. That "mostly" I mentioned above, those little grey areas, were suddenly seeming a lot more clear.