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posted by [personal profile] 1ngi at 08:51pm on 04/01/2016 under , ,

"I've done such a great job at pretending to be normal that nobody really believes that I have Asperger’s”

I’ve been a keen observer of Asperger folk for many years. I’ve even prided myself on being a bit of an Aspie-whisperer with loved ones and colleagues. I’ve been a Henrick to a Saga, a Leonard to a Sheldon, a Watson to a Sherlock. I’m married to a wonderful person who is on the ASD spectrum - our relationship of 10 years has been the source of some of the happiest days of my life but our communication difficulties mean that we regularly confront painful times.

This weekend I had perhaps one of the biggest emotional meltdowns I’ve ever had - to the point of being unable to function properly for several days. However, I hid most of it from everyone around me. All they say was me being unwell, in pain and unable to come along to social functions.
I’ve hid most of me from everyone I’ve known. I’ve become so good at it, that I forgot I was even hiding it from myself. It’s only recently after a dear friend shared some of the journey of her own ASD self-awareness that I’ve begun to understand what is really going on. The primary piece of revelation for me when our couple’s counsellor suggested that we watch a Vimeo presentation by Tony Attwood of his research of ASD in women and girls. Sion watched it first and then said that I absolutely had to watch it. For 30 mins I sat dumbstruck as I saw about 95% of my childhood and adolescence mirrored by his findings.

I was without doubt a typically ‘geeky’ child. Telescopes, dinosaurs and lego were my favourite playthings. I was a child-expert on fungi at age 9. My best friend was a grumpy pony called Lady Diamond who I didn’t so much as ride as visit and fuss over and talk to. My ability to socialise was at best described as ‘precocious’ which is cute at 4 and unlikely to find you friends at 11. I was very much a ‘compulsive truth teller’. If an Aspergers diagnoses had been available in 1976 I’m certain I’d have ticked all the boxes.

The child I was has always puzzled me when I compare her to the adult I became. A creative director, a copywriter, a communications expert. Often the life and soul of the party, a determined friend, a wit and a bit of clown. Between my geeky childhood and sometime in my late twenties I learned how to be what people wanted me to be. To the point where I convinced myself that this was who I was - I was just a late developer, no longer an ugly duckling but a beautiful swan.

But I have to recognise that the swan has always been paddling furiously underneath. My life is pock-marked with failed jobs and failed relationships all of which came about through exhaustion and burnout. When I look back I have never been able to simultaneously hold down a good job and a relationship at the same time. I’ve made bad choices in both - picked the wrong jobs, the wrong people, but I’ve lost the good ones too. Being self-employed has become a coping strategy.

The primary difficulty I experience is staying in touch with me, my thoughts, my emotions, my desires. When I’m with someone else - I am utterly swamped by them. I have such heightened empathy that their desires/hopes/worries become my own and I can no longer hear myself think. I think this makes me both a truly intimate friend and a flakey friend in equal measure. I suspect I’m someone who may blow hot and cold but no one as yet has confronted me with it. As I get older I have become more aware of this happening, but despite piles of therapy and CBT I’m still no better at being able to fend off the sensory overload. The usual way for me to deal with it is serious downtime in the company of an empty room or field. When I watched the famously aspie character of Saga in The Bridge book a hotel room for a couple of nights to get away from her boyfriend for a bit ‘because I can’t hear myself think’ I jolted a bit. I’ve done that. I’ve actually done that.

I’m burning out in my marriage right now. I’ve spent a lot of time in couple counselling in the last year laying at the door of my partner all the things that make things difficult for me but at no time have we discussed my own mental abilities or lack of them to cope inside an intimate relationship. For the longest time we’ve been exploring our problems by accepting my spouse for who they are and I’ve been expecting myself to do most of the emotional heavy lifting and adaptation. I’ve been assuming that I’m actually capable of it. I may have learned to logically understand what is going on but I now understand, I don’t actually have the emotional capacity long-term without serious harm to myself.

This was thrown into sharp relief with the arrival of the in-laws on New Years Day. I was left, mostly on my own, to prepare a special meal. I have limited physical capacity due to arthritis and the pain and fatigue it causes. Due to my partner’s own emotional capacity being drowned out by their parents, my requests for help were rebuffed and I struggled on in pain trying to give everyone a nice meal. The micro abrasions of the day accumulated and made me unhappy but after the end of the evening I found it impossible to sleep due to the pain and frustration I felt. By 5 am, in between hyperventilating sobs I was trying to work out which hotel to spend the rest of the weekend in - and I swear to god - the only reason I didn’t go was because I couldn’t find the phone charger. I knew my departure would have an awful knock-on effect on my best-beloved and I wouldn’t have made myself uncontactable. 7 am I took 30mgs of dihydrocodiene which blissfully stopped my hands hurting and knocked me out until midday.

The four of us had been due to go out to dinner that evening and it occurred to me that my whole running away plan was mainly about not having to go out to a restaurant with my in-laws. I knew I had absolutely no capacity for anything at all - least of all getting ready to be social.  After a supportive phonecall with my sister I finally found my way into a lucid place where I could say to everyone ’Sorry, not well, staying at home, have a nice evening won’t you’.

My desire to be social and experience intimacy with good friends is completely at odds with my capacity to cope with the emotional sensory overload. When I was a child my meltdowns were often overridden by the overbearing nature of my father - who would frogmarch me through whatever was distressing me while I hyperventilated! I was trained to think than my actual distress in a situation was utterly irrelevant. No value was placed on my own self-knowledge. As a girl I think I was not just socialised but bullied into always putting everyone before me. This has lead to some appalling personal disasters. Reframing has made me put my history of anxiety in a new light. Being able to voice my concern for my emotional self in a situation is a place where I am very much having to learn to speak for the first time.

There is lot’s more to be learned and understand. How to stay married for one thing. If that’s actually possible? Now that we understand there are 2 aspies in the relationship it can’t be about overriding each other’s coping mechanisms but finding creative ways where we can accommodate them and live happily together. We’ve already ended up in separate bedrooms due to Sion’s restless legs and my arthritis. This upsets both of us but it does mean we get better sleep. How do you live next door to each other in the same house? Without drifting apart? I don’t want us to be over. I just want to be able to hear myself more clearly than I do Sion. Sion’s needs drown out mine. Not good long term.

For the last 2 months I’ve stared at the information about how ASD manifests in women and girls with a kind of detached wonder - not quite believing it. This weekend I was able to observe my lack of cope with new context and suddenly a personal paradigm has shifted which felt like an internal earthquake of some magnitude. I have no idea how to go forward. I guess I should mention it in our next counselling session on Sunday. 48 years old is a bit long in the tooth for this kind of revelation.

I used to think I was so self-aware.
There are 13 comments on this entry. (Reply.)
posted by [identity profile] etoile-violet.livejournal.com at 09:58pm on 04/01/2016
*hugs* Beautifully written.

I don't have the spoons to write more, but I do have the spoons to talk about it with you if you would like to: now, when I've moved, or at some point in between.

(I don't fully understand why writing and talking take up different mental spoons, but they do.)
posted by [identity profile] 1ngi.livejournal.com at 03:33pm on 05/01/2016
They do don't they? Perhaps now that I've written this down I'll be able to talk about it - it's been spoon costly to do that up until now. Mainly due to me worrying that most people just wouldn't believe me and I would verbally be unable to articulate sufficiently to validate myself in front of others.

Thank you x
sfred: (Default)
posted by [personal profile] sfred at 10:11pm on 04/01/2016
Thank you for writing about this. I hope the realisation leads to useful ways forward.
posted by [identity profile] 1ngi.livejournal.com at 03:31pm on 05/01/2016
Me too - working out how to set myself up in an optimal way is going to be a challenge.
emperor: (Phoenix)
posted by [personal profile] emperor at 08:44am on 05/01/2016
*hugs* I hope this is a really useful thing to have realised!
posted by [identity profile] 1ngi.livejournal.com at 03:30pm on 05/01/2016
Thank you :)
posted by [identity profile] biascut.livejournal.com at 10:20am on 05/01/2016
Oh wow, that is a lot of Big Thoughts. I hope you have a safe space and time to process them. And that it helps you and S find a better balance of self- and each-other-managing. *hugs*
posted by [identity profile] 1ngi.livejournal.com at 03:30pm on 05/01/2016
Thank you :)
posted by [identity profile] monkeyhands.livejournal.com at 03:19pm on 05/01/2016
...if you are going to be diagnosed with a condition that makes you reinterpret all your past patterns of behaviour and brings up a load of painful stuff to work through, isn't it nice when it's a condition that you've already spent many years understanding and accommodating in others?

Re: the meal you had to cook, THANK GOD my partner and I both understand that cooking is the easy bit of having difficult-ish family/friends round for a meal and the emotional labour of actually talking to them is the hard bit. So we mostly have a kind of unwritten deal that the person who's going to find it hardest to do the talking/entertaining in this particular instance does the cooking. Every time we break that agreement by having the person who's closest to the guests do the cooking, the guests just will not stop wandering into the kitchen and talking to the person who's trying to cook, while the other person feels like they've failed at their job of being entertaining enough to keep the guests the fuck out of the kitchen. In your case, I'm guessing that a big source of the stress from your in-laws is that they are not self-entertaining and that if your partner came into the kitchen to help you, they would follow.
posted by [identity profile] 1ngi.livejournal.com at 03:28pm on 05/01/2016
Before the advent of sore paws, I would agree that the emotional labour of keeping awkward guests entertained while getting stuff done would be a priority. Now I can't manhandle boiling water, roasting tins in and out of ovens, chopping etc etc without sever reprecussions - both injuring myself at the time and then pain flare-ups afterwards. In fact explaining this to you now reminds me that I shouldn't probably being doing potentially injurious activities on my own. It is a big learning curve for me and for S. 'Changing gear' and adapting to this new situation is v hard for S and it's hard for me to be so much less independent.

Now I'm not sure how we would have handled keeping them the fuck out of the kitchen while trying to manage at the same time. I guess S should do the cooking and I should do the entertaining. But Noooooooo. Right, they just can't come any more.

Sigh. Actually I'll just avoid them from now on I think. We can go out for dinner when they arrive and then I'll just sod off for the rest of the weekend :)
posted by [identity profile] monkeyhands.livejournal.com at 07:19pm on 05/01/2016
I understand about the sore paws. Going out for dinner sounds like a good option. I'm so happy to have in-laws who often want to take us both out for dinner!

Failing that, I would let S cook and then pretend you're super-keen to watch some telly show or other (assuming you've got a telly). I wouldn't just put the telly on, because that's rude, but I would feign enthusiasm for a specific in-law-friendly show and then put it on if they wanted to watch it too. And then the next day, you're so happy to have caught up with them but now you have an appointment for a manicure/lunch with a friend/wandering round the art gallery...

I call this tactic "being pro-rabbit, not anti-plug" but the backstory to that is tedious. Anyway. Enough derailing. :)
rmc28: Rachel smiling against background of trees, with newly-cut short hair (Default)
posted by [personal profile] rmc28 at 08:38pm on 05/01/2016

wishing you the very best outcomes from this revelation
kake: The word "kake" written in white fixed-font on a black background. (Default)
posted by [personal profile] kake at 06:38pm on 06/01/2016
We never stop learning things about ourselves, do we? This seems a positive realisation, in that it gives you a basis to find ways of making your life work more smoothly.

Separate bedrooms is fairly normal, I think? Not everyone likes sleeping every night in the same bed as another person, however much they love them. (I realise this isn't the case for you — it sounds like you do want to sleep in the same bed but are prevented due to health reasons — but there are plenty of people who sleep apart from their partner without it hurting their relationship. And it doesn't mean you can't get into the other person's bed ever, far from it. Happy to talk more about this if you like, though perhaps not in a public post.)


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