This post is going to branch off a bit from my usual topics of writing, book reviews and so on, and into a personal concern. This is more to get things off my chest than anything else, so basically I’m writing it entirely for my own benefit, but I guess it might be somewhat enlightening for people who know me.
Diving straight in at the deep end, what’s been on my mind a lot recently is that I’ve come to believe (or very strongly suspect) I’m on the autism spectrum. Or more specifically, that I have what used to be known as Asperger’s Syndrome.
Obviously if I do, it’s pretty mild, considering I’ve got to this stage in my life before realising what the issue was. And when I mention this suspicion to people, and my desire to get a formal diagnosis, the general consensus is: “it’s just your personality, Kay” and “does a diagnosis matter”?
I can see their point, and yet I feel that a diagnosis does matter, it matters a lot. The difficulty I’ve been having is in explaining why, even to myself.
So I’m going to have a crack at it. Let me put it like this:
Imagine, hypothetically, that you’ve always had difficulty getting up in the morning.
It’s a common problem, right?
So what do you do? You might be careful about what time you go to bed and how much sleep you get. You might set alarms on your watch and your phone and your clock/radio. Thanks to these, you manage to drag yourself out of bed and get to work on time.
The trouble is, every day you feel tired, so very tired. You wonder how on earth everyone else manages to look so bright-eyed and alert. You wonder why it is that you collapse in exhaustion when you get home and other people still have the energy to go out. It doesn’t make sense.
Eventually, you start getting the picture. You’ve tried everything you can think of to stick to the same schedule as everyone else, to fit in with other people’s timetables, and still you struggle. So maybe this is just the way you are, the way you’ll always be. You just have to work around it.
So you ask your boss to let you start later in the day, making up some excuse about needing to take your kids to school. Because how can you tell him that you simply can’t get out of bed in the morning?
You ask your husband to take over evening chores, so that you can concentrate on your supposed “health routine”. Because how can you tell him you’re just too tired, even though he works longer hours than you?
And all the time you feel guilty and inadequate that you struggle to cope with such a simple thing as getting up in the morning, which everyone else takes in their stride. And you worry over how many allowances your boss and your husband are willing to make.
Then you discover there’s a recognised disorder called “sleeping-late syndrome”, which fits your situation perfectly, which explains everything.
Would you seek a diagnosis?
Okay, so obviously, autism spectrum has nothing to do with sleeping late (I just enjoy thinking in metaphor). But the fact is that the issues that affect people with mild autism are, to a certain extent, issues that everyone has to deal with. So an autistic person has difficulties with social interactions, but doesn’t everybody, sometimes? So we’re bad at remembering names and faces. That’s not so unusual. So we might get overwhelmed in noisy, crowded places, but why not just avoid them? On the face of it, these issues don’t seem like a big deal. And therein lies so much misunderstanding.
Unfortunately, these seemingly minor issues can actually have major consequences. Because what you don’t see is the amount of effort even a mildly autistic person is putting in, every day, to function in society at a level which would be considered ‘normal’. There’s constant pressure to perform in a way that goes against their nature, just to fit in.
And what you may not be aware of is that every day a person with Aspergers walks the edge of a precipice. It only takes one inappropriate comment in an important meeting to lose that job. It might only take one ill-judged remark to wreck a friendship, or one serious meltdown to destroy a marriage. It’s all too easy for an autistic person to find themselves both jobless and socially isolated.
A presentation I saw on youtube by Michelle Vines (author of ‘Asperger’s on the inside’) made a lot of sense. She said that autism is a classic case of the square peg in the round hole. This rang a bell with me, because I feel as though I’ve spent much of my adult life being that square peg and trying to hammer myself into that round hole.
A few years ago, after coming way too close to a breakdown, I finally recognised how much stress being ‘normal’ was causing me. I threw away the hammer. No more forcing myself into situations that made me uncomfortable.
Unfortunately, that didn’t work well at all, because when you’re married with kids, you have responsibilities which mean that retreating into one’s autistic comfort zone is simply not an option.
Basically, I was stuck, halfway in and halfway out of that stupid hole, unable to hammer myself further without breaking, and unable to retreat.
Realising I’m (probably) on the autism spectrum has been a relief. Now I understand that however hard I try, my autistic brain is never going to be completely compatible with ‘normal’ expectations, I’m in a better position to accept my hard-wired limitations.
While I have no intention of using ASD as an excuse for the worst of my behaviour (and I hope people will give me a kick up the backside if I try), maybe I can ease up on the feelings of guilt and inadequacy when I do get things wrong.
Which is not to say this awkward peg can never get through that hole. Here’s how I imagine having a diagnosis would help:
- It would allow me access to the Asperger community. Already, from reading about the way others on the spectrum deal with the same issues I have, I can see positive changes I can make in my life – and this time they’re changes that work with autistic traits and ways of thinking, rather than against them.
- It’s belatedly occurred to me that sometimes I ought to ask for help. When I do so, if I have a diagnosis, I’ll finally have a way to explain the true nature of the issue, without being met with a dismissive “doesn’t everybody feel like that sometimes?”
- Hopefully, I might get help that works for me, rather than being presented with solutions based on neurotypical expectations. And if that means sometimes asking society to adjust to my needs, instead of the other way around, so be it.
Maybe, by getting a formal diagnosis, I’ll be able to swap that hammer for a chisel, and start reshaping that round hole into a square.
(Of course, I might not get a diagnosis at all, but that’s another topic for another day…)