Autism and me
Photo by Polina Kovaleva from Pexels
I’m 56 and in January 2022 I was diagnosed with autism.
I’m going to try to explain that to you - the impact of what undiagnosed autism has had on me and what diagnosis at this age means. Stay with me. I promise this is all going to make sense.
There’s an app called Letterboxd which is a database of films, actors and crew and it allows you to rate films, review them and keep a record of what you’ve seen. You click on a film and it brings up user reviews and a full cast and crew list. You can click on any person and it brings up their filmography, and each of those films has a cast and crew list and so on. On the home screen are the posters of popular, high-scoring films which change as film ratings and popularity do, and you can see about 14 of them before scrolling for more. I absolutely love it. For a film fanatic, which I am, it’s a rabbit hole of pleasure.
The other night I pulled up the app on the TV and my husband casually asked what rating the 2014 Swedish film Force Majeure has. (I know what you’re thinking - we sound like such a fun household). At this point, most people would have headed for the search function. But I never do that. Instead, when looking for any film or person on Letterboxd, I take what I can see on the screen and start to make connections until I arrive at the film or person I want to find.
So, in this case…
One of the 14 films on the home screen was Her which stars Joaquin Phoenix who starred in The Master which was directed by Paul Thomas Anderson who also directed Magnolia which starred John C Reily who starred in Step Brothers with Will Ferrell who starred in Downhill which has a writing credit for Ruben Östlund because it is an American remake of a Swedish film written and directed by Östlund, Force Majeure.
In my head, I got from one film to the other via these connections in about the same amount of time it would have taken me to type the film’s title into the search bar. I then clicked through that journey to confirm it all.
It’s like the dullest party trick ever.
But, this is a good illustration of how my mind works. Not always, but often. It instantly searches for connections, links, commonalities, reference points and patterns. It takes a start point and an end point and connects the dots. I guess we all do that. I just hadn’t really been aware that the way and extent to which I do it is unusual.
My need to connect things was the reason behind seeking a diagnosis in the first place. In a work context the year before, during a communications exercise, I explained to colleagues the ways that I need to receive information in order to do my best work, and the processes that need to be in place before I can make sense of a task or project. I pointed out that the end point is always the thing I need first in order to make sense of what will follow. I talked about structure, procedures, rules. The need for logic, to make connections.
Later, it was gently pointed out to me that the traits I was describing can be signs of autism. I shrugged it off but then, intrigued and looking further, other indicators were there, like my overly emotional affinity with animals, my inability to accept other points of view, my need to be in control, my requirement for things to be logical, my early childhood defined by trauma and loss. When I asked people close to me if they thought I could be on the spectrum, they had clearly thought so for some time. But it was a surprise to me.
Jump forward half a year and yes, I am officially autistic. I’ve been assessed, I’ve done the tests. I think it means I’m allowed to skip ahead in queues but I don't get free parking. Damn.
Like many people relatively low down on this spectrum, I’m outwardly fine, chatty, sociable you might say. Inside, there’s a lot going on. The nightmare of eye contact awareness (too much? too little? both are rude), the effort of listening whilst trying to come up with something connected to say, the self-checking required to make sure someone hasn’t nodded off because I’ve been going on about the same subject for too long or, perhaps worst of all, the lack of a filter that stops me from saying something that I shouldn’t say, especially if I think someone has broken a rule. Oh, the trouble that’s got me into…
It’s been a few months since I gained this self-awareness. But what now can I do with the knowledge that, this late in life, I find that there’s a reason why I’ve always wondered what’s wrong with me?
And anyway, what is wrong with me? Autism comes with a lot of baggage and, whilst it’s different for different people, here’s some of what’s been going around for years on the conveyor belt of my internal baggage claim…
“You’ve been very good at masking for your entire life. You’ve done amazingly well to get this far in work and in your life without the support that you’ve needed.”
Wow. That’s quite impactful, actually, hearing that at 56. Those words make a difference. They help. It’s taking a while for them to fully sink in, but they are.
So, what am I doing with the knowledge that I’m autistic? Here’s what.
Partly, I’ve been dealing with a lot of that baggage. Some of it is pretty heavy and has been hanging around for a long time, revolving on that belt, going away for a bit but always coming back. Well, it’s of no use to me anymore, so I’ve been claiming it, rummaging around and sorting it out. Unpacking it feels good, like a weight is lifting because now there’s an underlying explanation behind some of it, a connection to it that makes sense to me. And whilst it won’t all go away - a diagnosis only explains part of me, not all of me - at least it feels like I’m travelling lighter.
That urge to connect things, to find or create a pattern, to make sense of something by understanding what you’re aiming towards, it informs almost everything about me. To connect things, I need to know the start and the end points so that the journey of everything in between makes sense. It’s how I think, how I work, how I live.
For my entire life, I’ve struggled because I don't know where or what or how the end point is. I can’t define it, I can’t control it and it doesn’t make sense. So, for me, the journey never has, either. I wonder if that’s a pretty common experience.
That mysterious, uncertain, unknown journey IS the point, but not for my brain that seeks logic and patterns and a purpose. Consequently, I spent years lying awake in bed at night terrified of uncertainty, of what might happen, who might leave me, how that might occur, searching for reason, for a point. And I don't mean in a religious sense at all, far from it. I mean in a logical one. Who knew that autism could contribute so much towards existential anxiety?
One of the most profoundly interesting sessions I was asked to talk through during my assessments is summed up by this:
“How do you know when you’re happy?”
“I don’t feel unhappy.”
“What’s something that makes you happy?”
“Being with close friends and family.”
“What does friendship feel like?”
“Because my inner monologue switches off and stops getting in the way. It means I can forget myself for a while.”
Since my diagnosis, that over-analysing intrusive inner monologue is getting in the way less and less, which suggests that I’m happier. And whilst my existential worries will never fully go away, lately, I’ve been sleeping like a baby. I’m more in control. I’m more accepting of myself. That feels both liberating and powerful
If that’s what being diagnosed as autistic means to me at 56, then that’s a very, very good thing.
And that’s because, ironically, one of the benefits of finding out what’s wrong with you is the realisation that there’s been nothing wrong with you.
In fact, I feel a bit like Bruce Willis in the film Unbreakable which is about someone who doesn’t know they’re a superhero and who starts discovering their latent powers in middle age. At first, it's strange, then frightening, then amazing. And it only makes sense when the character connects all the dots from what went before to where he is now. Yes, I feel like that, except that he was invincible to harm and all I can do is connect two films faster than a search engine can…
Still, I loved that film. It was directed by M Night Shyamalan who also directed Signs and The Village both of which starred Joaquin Phoenix who was also the star of Her…
Keith s. Barrett
This is exceptionally visual as a written explanation... Nailed it. Thank you.
Rob, ❤...just that.
Robert - a brilliant explanation from a special super hero! You should be very proud of yourself not just for what you’ve written here but for who you are.
Rob. This is such a brilliant, insightful compellingly written explanation of something many of us fail to comprehend. Thank you so much
Beautifully written Rob and from such a heartfelt place. You are a superhero and your open honesty not only helps me understand the benefits of an assessment in adulthood but also why you are my dear friend ❤️Xx
Rob, thank you. What a great post. I'm in my 50s, not yet diagnosed but highly suspect I am somewhere on the spectrum.
Oh I LOVEArrival - it's a great film!
Now you have me thinking at 67!!!
Oh, the lack of filter. Jimminy Cricket, yes.
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