Here, have a pebble.

Why The Late Diagnosed Diaries is like my penguin gift to you. “I found this thing, and I thought it was pretty interesting. Maybe you will too.”

Nearly 80% of autistic girls and women remain undiagnosed at age 18.¹

Read that again.

Not 10%.

Not even 50%.

The vast majority of autistic women and girls traverse their entire childhood, adolescence, and young adulthood without being acknowledged by any of the systems designed to identify, diagnose, and support them. And for many, that’s just the beginning of their undiagnosed life.

👋 It’s me. Hi. I’m the vast majority.

Last year, I was diagnosed as autistic at 31 years old, nearly a year after I self-diagnosed.

There are lots of folks who question the validity and accuracy of self-diagnosis, but most of them are neurotypical (aka not autistic, aka “allistic”).

Because the thing is, it’s kind of one of our defining traits, as autistic women, that we don’t really do things “casually” or “lightly.”

So when an autistic woman has decided she is sure enough to give herself a diagnosis, the rest of us know it was preceded by months of intense research, completion of every available online assessment, participation in multiple forums, and a solid week — at LEAST — of wondering if you made the whole thing up because you’ve spent your entire life up to that point having your feelings dismissed and invalidated to the point where you don’t even trust your own knowledge of yourself.

It’s a canon event in a late-diagnosed woman’s journey. And if they’re still sure that the shoe fits, after all that, then they’re as good as guaranteed in our books.

My journey to diagnosis included a 12-18 month period of intense study and research. I read every book related to autism I could get my hands on and I printed out and annotated more scientific studies and journal articles than I can disclose without feeling bad about the number of trees that sacrificed themselves to make it possible. I even took an 8-week training course for caretakers of autistic adults (because, you know, #selfcare).

A few years ago, I would have told you that I did all this because I am a former journalist conditioned to investigate things I don’t understand. Turns out, I was just unwittingly rebranding textbook autistic hyper-fixation as a career choice.

And it turns out, autism itself is my special interest.

You know how some penguins² are known to give pretty pebbles as a gift to the other penguins as a sign of affection? Well, in a way, I guess this newsletter is my way of picking up little gems on my late-diagnosed journey and passing them along to the auti-curious, the auti-allies, and my fellow late-diagnosed autistic women.

“Here’s a thing I found. I thought it was pretty interesting, and maybe you will too.”

Image via BBC Earth.

Is this me currently and wittingly rebranding “info-dumping” as a generous and selfless act and packaging it up into a newsletter?

Yes.

But it’s also a way for me to build in public as I work on a forthcoming book on this same topic, and to get back to a regular (public) writing practice.

So there.

Welcome to The Late-Diagnosed Diaries.

And thanks for making space for my pebbles in your inbox.

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1. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8870038/

2. Since I’m guessing at least a few of you have seen Atypical on Netflix, I feel the need to disclose that I am not, nor will I ever be, a penguin expert. The whole penguin-giving-a-pebble is just a particularly apt and adorable metaphor, regardless of whether the tuxedo-clad cuties are your special interest or not. And they’re not mine.

I learned about this phenomenon in the 1995 animated movie, The Pebble and The Penguin. Despite the fact that it has a dismal 25% from the expert reviewers on Rotten Tomatoes, our VHS of this movie had to be surgically repaired with Scotch tape due to its loving overuse. (See: not doing anything casually.)

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