I’m a recently diagnosed, less recently self-identified autistic woman of fifty five years of age. Fifty two of those years I had no effing clue what was going on other than I didn’t fit in, never had. I spent thirty seven of those years looking for answers, starting with studying psychology at uni and running the whole gammut of weird and not so weird courses, workshops, and counselling trying to fix myself.

I have a brain. A pretty good one, with some interesting extra features when compared with the standard model. I want to use it. I want to contribute.

This blog is the beginning of the process of working out how I might do that without detriment to my well-being. My starting point is to explore what goes on inside my head when others see something they label weird on the outside. And perhaps maybe we can come to a better understanding.

Mismatched Communication

It’s funny how the most mundane of conversations can lead to an opening of awareness.

I went for lunch with two friends and whilst I tackled my masala dhosa, I recounted a conversation with my youngest son. He had accused me of thinking he was stupid. That he had already told me that (the thing that I had just said to him). Why did I keep taking his ideas and presenting them back to him as if they were mine?

Cue beam of light brightening the dark corner of “I’ve done it again? What did I do wrong?” that has plagued my social interactions for as long as I can remember. Little bits of information coming together to make sense of this mystery.

“No, no,” I said to him. “In my head, I’m not telling you to do something. When I repeat what you say, what’s in my head is affirmation. When I repeat what you say, I’m either confirming that I agree with you or I’m repeating it as a means of processing what you just said.” (Little bit of back story; I have problems with auditory processing, which until I read more about autism and sensory overwhelm, I had labelled as a-bit-deaf-when-there’s-background-noise-of-any-kind.)

Penny-drop. Echolalia. My kind of echolalia. It doesn’t sound like the classic autistic echolalia that we read in text books, but that’s what it amounts to. And why I think I do it; either an attempt at reciprocity or to take in and understand what’s being said. That’s what’s inside my head. This may or may not be true for other autistic people.

Back to my masala dhosa lunch…

Mysore Masala Dosa. Recipe, How to make Mysore Masala Dosa ...
These two friends are part of a small handful of people who I’ve told I’m autistic since I self-identified three years ago or got a formal diagnosis a few months back. (Late diagnosis; I’m fifty five and spent fifty two of those years thinking I’m broken.)
They’ve listened to me as I’ve tried to work out WTF is going on. It’s a big ask, as the saying goes.

Earlier in the conversation I told them that I was appreciating more and more just how often I am off-the-mark in everyday conversations. How much I hadn’t realised it and blithely carried on, thinking I was good at this communication lark.
I asked them to let me know when something I said was off because the last thing I wanted to do was hurt them.
One of these friends confirmed that she had been getting more and more annoyed with me. She hadn’t told me. We were in the territory of losing another friend and not knowing why. She couldn’t remember any specific examples, or was wanting to be kind. Probably the latter; she’s a kind person.

At the telling of my son’s I’m-not-stupid.-That’s-what-I-just-said! story, she sat up straight, looked at me and seemed to come to a decision. “That’s what I’ve been feeling,” she said. “That you think I’m stupid or something”. Nothing could be further from the truth.

My attempts at social bonding come across as insufferable-know-it-all-ness, whether it’s down to echolalia or my pin-you-to-the-wall enthusiasm for my latest favourite subject. It’s not my intention, but that’s kind of irrelevant. It’s how I’m perceived.

So, I make a plea to all neurotypical people reading this. If something seems off, tell us, with specific examples. Be courageous. Be honest. Or just be plain, bloody, mad at us, but tell us. We can’t read your minds. You can’t read ours.



Why should you listen?

For so long the actual lived experience of autistic people has been either ignored or translated through the eyes, ears and other senses, not to mention the brains, of largely neurotypical people.

The consequence of this is increased distress and decreased well-being for many if not all people on the spectrum (in my world ‘the spectrum’ is a three dimensional thing, not a straightline), no matter how ‘their autism’* looks on the outside.
What you see on the outside may bear no resemblance to what is happening inside us, either because we are masking so well or because we do not have a way of communicating it to you in a way that you will hear.

This means that a whole section of society is unable to contribute to their fullest for lack of adjustments and shifts in mindset. Even more, this lack of understanding and accommodation contributes to some of us needing more support than might otherwise be the case.

And that’s just the economics perspective.

More important is the human cost. I want to contribute. I want to make a difference, however small, to the society I am part of. And I want to do it in a way that doesn’t harm me and send me into burnout or suicide.

The recent #TaketheMaskOff campaign has challenged me to come out about being autistic (more on that later, trying very hard not to sidetrack, not to pin you to the wall with information). Baby steps. I’ll start with this blog, albeit incognito for now. Not out of shame, but because I don’t have the energy to deal with the ‘but you don’t look autistic’ and the ‘aren’t we all a little bit autistic?’ responses without resorting to STFU.

So, welcome to this exploration of the inside of autism as experienced by this particular autistic woman.

*There’s a whole thing around use of language. Sometimes I get bolshy about it, sometimes I go with mainstream language or with economy of words.
To avoid any confusion, I am autistic. It is the way my brain is wired. It is not a side order or a handbag I carry around. It is not an illness.

(meme courtesy of indentityfirstautistic.org )