Congratulations… it’s an Aspie
Congratulations! It's an Aspie! Not quite the words my mother heard all those years ago as she finally expelled me into the world, although it would have made a lot of things a whole lot easier if she had, I'm sure.
She'd been in labour for some 36 hours before she managed to get me out of there, or so she told me, and I started out in life as I evidently meant to go on: obstinate, stubborn, determined, and doing things My Own Way.
But today, 24th April 2019, we caught up.
Today, we set the record straight.
Today, it all became clear and with a line drawn under it.
Today, I begin again, reborn.
First things first.
Hi... I'm Jon, and I'm autistic
I've just been officially diagnosed.
This very afternoon.
… I couldn't be happier about it.
But I'll get into that anon.
For the moment, though, I'm kind of euphoric, and feel a massive sense of relief.
Because while I'm the same person now I was when I woke up this morning, something has changed...
Three things, in fact.
Now I know...
It's official and I can draw an unequivocal line under any doubt and uncertainty and raise a stiff and deeply felt middle finger at everyone who scoffed, mocked, and sneered at the very idea I could be autistic.
“You’re too normal”, they’d say, obviously having some dribbling, thumb-sucking stereotype rocking away in the corner as their idea of what autistic people look like.
Alas, we can’t win. There’s constant pressure on us to conform, to be, look, and act normal…
… and when we do, often at great personal cost, we’re told there’s nothing wrong with you.
Right. I have a lot to say about this, but not right now.
Because right now I’m celebrating.
Let me start from the beginning…
I first began to have my suspicions I could be autistic, or, as they say in the trade, have Autistic Spectrum Disorder (ASD), some four or five years ago when a close friend asked me in a drunken conversation at one of the meetings of my Elite business mastermind if I'd considered the possibility I was on “the spectrum”.
And, no, I hadn't.
Hell, I knew I was different and had done since I was a young child. Most of the time it was just something I shrugged off as inconsequential and assumed everyone else felt the same way.
But as the years passed and it didn’t get any better — meaning, my ability to cope in this unfathomable world you've created for yourselves didn’t improve, no matter what I did — I began to think my lack of empathy and emotional connection to others as well as myself meant I was some kind of sociopath, albeit a fairly benign one (something I didn’t want to think about too much for obvious reasons).
So when the idea I could be autistic was pushed in my face, I started to learn about it...
... and the more I learned, the more it explained.
It explained everything.
And I mean everything, from being constantly told “look at me when I’m talking to you!” at school, to being laughably hopeless with girls until I reached the embarrassingly old age of 30 and started working as a Doorman (it wasn’t so much girls didn’t like me as I had not even the remotest, faintest, or most tenuous idea about what they felt about me).
The more I learned, the more obvious it became. I even asked someone I'd known for a long time and who I knew had autistic kids.
"Sure," she said, "I figured you knew but just wanted to keep it quiet".
The last one to get the joke, as usual (another common Aspie trait).
Why have I waited so long to get a diagnosis?
More about that later.
It’s enough right now to say regardless of why I waited, I got it done in the end, today.
It vindicates me
I'm not looking to make excuses, and I'm not complaining.
Let’s take a step back.
A common attitude among autistics is the world owes us something and should be forced to change to accommodate us.
That ain’t me.
Sure, I do want the world to change, but not in the way you might think. I want it to change through education and awareness. I want people to realise it’s in their rational self interest to make accommodations and allowances for us because, if treated right and given the opportunity, we bring immense value to the world.
What I don’t want is change to be forced by legislation and government diktat and coercion. I’m a libertarian and responsible for myself (and only myself). Suddenly finding I’m (apparently) disabled doesn’t change that.
Besides, on the whole I've had a good life so far and despite the constant battles and struggles, I've done well for myself. I have a happy marriage, have been instrumental in helping four children develop and grow into well-rounded and thoroughly decent young adults, and have made a name for myself in my chosen areas of expertise.
But that's not to say it's not all turned to shit at times, and, more often than not, unexpectedly and, worst of all, without compelling reason I could see — including two acrimonious divorces, broken friendships, and more arguments, misunderstandings, and fallings-out than I care to remember.
Fact is, from an NTs point of view I’m likely to be a difficult person to get on with for any length of time.
Because I’m lacking in neurotypical traits you can reasonably expect me to display since the vast majority of people you meet are not autistic; and when I don’t display them (because I’m incapable of doing so, even if I know both what they are and I’m supposed to display them), you understandably get pissed off with me.
Let’s take a simple generic example: any situation where you’re expecting me to show empathy, that highly-prized neurotypical trait.
It’s a common belief when people don’t show empathy, it means they don’t care, and if they don’t care it means they’re necessarily bad or broken people.
I even believed this myself for a long time, and figured I was sociopathic or just plain touched in the head in some way because I’m almost entirely lacking in affective empathy (sometimes referred to as emotional contagion, because you “catch” the emotions of others).
Without trying to make excuses, whether having affective empathy is intrinsically good or bad is moot, because we autistics frequently don’t have the neurological machinery to feel it.
We can’t help it, in other words.
To be fair, I wouldn’t want it even if I could have it, but that, too, is moot.
The best I could ever do is pretend, and any NTs worth their salt would see through that in a heartbeat, so I don’t bother.
But criticising us for it and labelling us as unfeeling and uncaring is profoundly crass and ignorant (and who’s lacking in empathy when you do that, eh?). It’s like criticising an epileptic for having a fit and spilling your coffee, and then calling her careless.
My point is this: my not having affective empathy is beyond my control.
I’m simply not wired up to have it.
And the same’s true of a whole raft of NT traits I’m missing, all of which cause me problems in an NT world.
But I’m not broken, I’m not deficient, and I don’t need fixing (and couldn’t be fixed in any case because there’s no “cure” for autism, just like there’s no cure for tallness, blonde-hair, or short arms).
I get that my lack of certain NT traits might be upsetting for you, but there’s nothing I can do about it.
For good or for ill, I can’t help it.
Your feelings are genuine, and you have every right to feel upset if I don’t react the way you expect me to as a human being.
What you don’t have the right to do is judge me for it.
It avoids frustrating and frankly upsetting conversations
You know what I often get from people?
Condescending doubt and questions.
"But you're so normal", they say, "are you sure?".
Well yeah. I was sure…
... but I could have been wrong.
And therein lay the problem.
Because I'd explain what it's like — the difficulties, and the constant struggle to make sense of a largely unfathomable world of unreadable people. I’d wax lyrical about the difficulty in dealing with busy malls, shops, hotels, and airports; I’d describe in detail how difficult it is trying to interact with a group of people, especially when I don’t know them, and the sheer impossibility of figuring out what they really want from me from their hints, facial expressions, and body language alone. Their mouths tell me one thing, but the rest (apparently) is telling me something else — and that something else is the real message and one I’m supposed to get.
Cuz that’s what everyone does, right?
So what kind of response do I get?
"I feel like that myself, sometimes. It's just natural. Here, have some lavender foot balm".
"You're OK. You’re probably just overreacting".
Or (most infuriating of all)...
"I think we’re all a little bit autistic. Don’t worry about it".
That's about the point where I get the desire to throat punch them, because they have no idea how difficult it is.
Clue, for the hard of thinking: occasionally presenting a few autistic traits does not an autistic make, just as being occasionally forgetful doesn’t mean you have Alzheimer’s.
Autism is more than skin deep. It runs through every part of us, a fundamental difference in the way we're wired up.
An NT might feel a little tired and frustrated by, say, a busy mall after a long day’s shopping with fractious kids and find themselves wanting to go home for a bit of peace and quiet and a nice cuppa.
That’s the kind of thing they seem to imagine we autistics feel in the same situation.
But it’s not even close.
The lights, the noise, the sheer busyness of these places can become overwhelming to the point where we can’t speak or act coherently. We can’t even think straight.
“Breathe”, they say, and trot out the latest self-help mantra from the guru du jour.
But they fundamentally misunderstand the depth and intensity of the sensory overload.
Having a diagnosis means I no longer have to justify and explain any of this shit without a rational and objective context to put it in. If they piss me off enough I can now just point them at the literature and tell them to go and educate themselves.
More pragmatic is now I can talk about autism and advocate for autistics authentically, with authority, and possessing a mandate from my diagnosis.
No one can accuse me of being a fraud, overwrought, or overreacting.
You may have heard the old Zen saying before: “Before Enlightenment chop wood, carry water. After enlightenment chop wood, carry water".
Well, it’s kinda like that.
“Before Diagnosis run my business, live my life; after Diagnosis run my business, live my life".
Nothing materially has changed.
I’ve still got work to do, bills to pay, clients to serve.
Life will go on.
More: I was physically the same man walking out of the psychologist’s office as I was walking into it. A few hours’ extra aging on the old clock is neither here nor there.
So, if anything’s changed, it’s all in my head.
And it has — far more than I thought it would.
I see myself, the world I live in, and how I relate to it all differently.
I knew how I was different before.
Now I know why I’m different.
And that’s tough to swallow at the moment.
I don’t expect you to understand, and that’s OK.
You don’t have to.
Some people don’t like labels, and for the very reason I’m talking about. They say they’re afraid the label will come to define the person it’s attached to. I think it’s less clear-cut than that. (I guess they imagine labels can also cause those trendy “limiting beliefs” you hear about. That’s possible, I imagine, but I think the positives far outweigh that ephemeral and tenuous possibility).
In short, labels can help.
For me, the autistic label is a starting point for me and others to begin to (try to) understand what makes me tick and where my limitations may lie.
But notwithstanding how any of us feel about the label we use, the fact is whatever the label refers to is real now.
Hitherto it was almost a game, a bit of fun. I had a lingering sense at the back of my mind I could, given sufficient effort and motivation, and the right tools, somehow change. Changing the way I was could have been perhaps as simple as a matter of effort, and the moment the pain of changing was less than the pain of not changing, I would change, no matter how hard it was.
But now I know I can’t.
The choice has been taken away, illusory though it was.
It’s frankly scary.
The choice was never really there, of course, but half-thinking it was gave me some comfort.
But this will pass.
And I have plans, plans my diagnosis, as well as this blog is central to.
Anyway… that’s enough for now.
If you want to ask me a question about me, autism, my diagnosis, or, indeed, anything else, you can do that here.
Or just leave a comment below.
But, please, spare me any condolences or pep-talk. I don’t need to be told I’ll be OK, things will turn out fine, or it doesn’t change who I am.
I know all this already.
Allow me my moment of wailing and gnashing of teeth.
Jon McCulloch, The Evil Bald Genius
Author, speaker, business owner, and autism advocate