Path Diverted

When I started this blog back in September, I said I wanted to walk the South West Coast Path before I turned 40, but of course, I really wanted more than that. I was seeking the usual clichés: balance, contentment, challenge, happiness. The sense of feeling myself again. It’s the familiar wish-list of the thirtysomething mother. We had it all. We want it all back again.

But I knew, also, that my wish-list wasn’t quite the same as everyone else’s. Walking was both a symbolic and a practical act for me. I wanted it to bring me wellness and respite, certainly; but I also wanted to feel my feet on solid ground again. I thought I could walk back to a time when I knew what I was; when I was competent and sure-footed. Strangely, the more I explored, the more elusive that time seemed. The ground was crumbling under my feet.

In December, I learned that I have Asperger syndrome.

I hope that comes as a surprise to you. I hope I wasn’t the last to know. I have spent my whole life so far trying to cover it up, without understanding what I was concealing: only that I was different; only that, in my natural state, I wasn’t acceptable. It has mostly felt like I’m trying to zip an unruly bundle of clothes into a tiny suitcase. Every time I manage to restrain one, disordered corner (I talk for too long; I interrupt people), another one bursts out (I come off as aloof; I flinch when people touch me).

I grew up in an era when being on the autistic spectrum was not considered a positive attribute. Mind you, neither was being a friendless weirdo, but that’s another story. The thought of owning my new label still leaves me terrified: from now on, everything I say and do will be seen through the lens of autism. In many ways, I need that; I need my context to be understood. But I also want to be accepted as a person in my own right. My achievements are my own, and my mistakes are too. I hate the idea of being tolerated out of charity. I’ve fought all my life to be liked on my own terms, and I’m not letting go of that.

Mostly, I’m awash with relief at my diagnosis. Asperger syndrome is a secret I’ve been keeping from myself for a long time. Until a couple of months ago, I’d have told you that I love parties; that I’m a social animal. I wouldn’t have been lying; but, equally, that’s never represented the truth. I have spent my whole adult life believing that I love parties, and then making myself sick with anxiety in the run-up to them. If I attended at all, I hid in the toilets and then left early. Never once did I recognise this as a pattern, but apparently all my friends did. While I’ve been coming out – stutteringly, red-faced – nearly everyone has told me a story of my own disappearance at a social event. I don’t even remember half of them. It seems that I’m famous for vanishing.

I don’t have to go to a party ever again now, but I will. Perhaps just for an hour, just to show my face. Here’s the thing about being diagnosed with Asperger syndrome at 38: the worst of it is already over. I’ve worked out how to get by – successfully, actually – and I’ve found people who love me more than I love myself. And I love them, too, even if I’m sometimes baffled by how much feeling they manage to do.

That’s a joke, by the way. An Aspie joke. Everything I read seems to suggest they’re unlikely, but there you go. Over the last few months, I’ve had to accept that most of my assumptions about Asperger syndrome are wrong. I don’t think I’m alone in that. That’s partly because female Aspies are in the minority, and we’re different; but it’s also because it’s one of those popular labels that amateur psychologists like to bandy about, and they largely have no idea what they’re talking about. I have no right to criticise. I’m a learner-driver myself. Trust me, I’m still reeling from the shock that I’m the autistic one in my marriage.

But, anyway, this is supposed to be a walking blog, and thank goodness for that. I don’t know how walking led me to understand what I am, but I’m certain that it did. When I walk for a long time, my mind gradually blanks itself, and the natural sounds – water, wind, birdsong – calm me. In that space, the ground is laid for those big, life-changing thoughts. There was nothing conscious; no eureka moment. But one day, I was driving in my car, and a woman on the radio was describing life with Asperger syndrome, and I thought, simply, Oh yes; just like me.

There’s more to it than that, of course, but it’s enough for now. I’ll carry on walking and writing about it. It’s the best way I’ve ever found to reset myself. I’m not sure if I’ll be following quite the same walk that I planned, but then, I’m finding that a lot, lately.

12 Replies to “Path Diverted”

  1. My husband has Asperger’s. It was both a shock, and a HUGE relief when we figured it out. He is 42 now, so that would have been about 8 years ago.

    There was an awful lot of “Oh, well THAT explains it!” and it helped his mum and dad feel far less guilt about him growing up a loner.

    It helped ME by my realising that the lack of many hugs wasn’t my fault, or because of me.

    I love my Aspie, and I always will. You just know where you are with an Aspie. 🙂

    1. That’s just lovely. I think H has found it a relief too – he’s tolerated an awful lot, but apparently he kind of likes having me around too 😉

      1. It so helps to know WHY. Plus, I can say to people “Aspie, not a people person.” and they GET it. I wish his work would get it, but hey ho. (Aspies do not play well in group activities that they can see no point in or practical application of.)

        He’s just not demonstrative, at all, but now I know it *is* actually him, not me. *grin* (I’m basically a walking hug.)

        1. I think maybe you and H should get together and do all the hugging that we don’t want to do! I agree though – the ‘why’ is so useful and comforting. And it also means I can just say ‘sod it’ to the people who find me difficult. Not much I can do, frankly.

    1. There’s a lot of truth in that – I think the idea that Aspies are so totally alien is wrong. We actually mostly rub along quite well, as long as we’re allowed to do what we need. It’s likely only the ones who can’t cope that get diagnosed. Mind you, I was convinced that H was the aspergic one in our relationship. He took all the tests I took, and it turns out he’s not. Well: a bit borderline, but then he does work in IT….

  2. Thank you for sharing this. I was diagnosed last summer at the age of 47 and its been pretty weird and unsettling. I identify with what you have written, and have a pretty good idea about the bits you haven’t written! x

    1. Thanks Helen – it’s SO comforting to know that other people are finding out as late as me. As you say – hugely unsettling. I’m questioning my own grasp on reality slightly. But also hugely relieving to understand myself better.

  3. I’m another one with a probably Aspie husband–he acknowledges the probability but doesn’t feel the need for a diagnosis. For many, the diagnosis is a useful thing, so congratulations!

    My oldest daughter is cognitively disabled and has some traits found in people on the spectrum, but they could also be explained by her OCD, and also crop up regularly among her friends, many of whom have Down Syndrome. With our move to Rye imminent, I’m bracing myself to restart the process of explaining, testing, looking for the right advocates, and easing her into the “system” while she adjusts to England and looks for a job. I’m completely unfamiliar with the English medical system, having left England long before I had kids, so any tips would be appreciated!

    1. I’m afraid I don’t have much experience of this either Jane – but I’ll email a friend of mine to see if she can suggest a good place to start. Leave it with me.

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