Post Diagnostic Regression
I've learned some new jargon: post-diagnostic regression. The body-self regresses in its ability to function as it struggles to assimilate all the new information a diagnosis throws up. I guess I have "mid-diagnosis regression," since I've months to wait for the formal interview. But filling in the diagnostic forms for myself, and a parental form for one of my children, and various other stuff, makes it pretty obvious what's going on with me.
That said, I wonder if there are not other things to consider. I've coped by masking for most of my life; since starting school, I suspect. Which means that like everyone else, I learned to fit in, what was appropriate, and what was not. How to stay out of trouble (mostly) and how to stay safe. Except it seems like I learned it all "the long way round," and it's worn me out.
My self diagnosis has not come because someone told me I was autistic. My kids did say that, but I filed it away in my card index of amusing stories to tell when I had to pretend I was enjoying being in a group of people and had to take part in the small-talk. So I could say, "So it seems like I'm a bit weird as well as Queer." But I thought my kids were over-egging the custard.
Diagnosis came because I have become exhausted to the point of not functioning. Somewhere, around 2017 or 2018 I began needing afternoon sleeps several times a week. Although, like so many other things, the signs were there much earlier: my daughter, growing up, observed my sleeping during the day—I'd been doing it much earlier than I realised—and, later, thought all adults did that and that she was just the same, instead of realising that her own exhaustion was a symptom of her own autism.
In late 2019, working in an interim in the Henley-Fulham congregation—which I loved—I became too tired, and had to leave early. By the end of January 2020 I’d left parish work entirely and knew I would not be going back. This removed all the life coping mechanisms I had unconsciously put in place and I basically fell apart. The more one falls apart, the harder it is to cope, or even to do the things that re-energise. Which means that the huge input of data—all those “I thought everyone did that” moments—lands upon someone who is already overwhelmed by life.
And that's where the regression comes in. There is so much going on that even the things we could do well, that we'd got "down pat" become too hard. It's not that the regression is a thing of itself; rather it's a a part of the burn out. The body finally just keep coping. They say that "it is important to note that autistic burnout is not necessarily an omen of permanent regression or skill loss." I only hope they are correct, because right now, I'm cooked.
Andrea (March 2026)
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