"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.