Wednesday, July 10, 2013

My Life with a man who has Aspergers

"Who washed the dishes?" my husband asked last week.  I put up my hand and said wearily "I did, what did I do wrong?" he sighed, rolled his eyes and brought me through by the hand to show me that I had stacked the plates facing the right instead of his preferred left. I promptly fixed them as he stared at them closely to check they were done right. He gave me a lecture that I was putting 'the plates wrong, they could fall and break and the knives and forks need to be facing down" He still reminds me of this daily.

No, am not married to the bloke from Sleeping With The Enemy, though I do say that onstage. I am married to a man who has Aspergers and now has been recently told he may have low spectrum Autism.

I watched him as he stood in the kitchen with me, 33 years of marriage down the line, I recall the sixteen year old boy who put a diamond ring on my finger one month and pretty soon after that, he tried to commit suicide as he 'felt out of his skin'. Not something the doctors of Glasgow Royal Infirmary understood in 1980. Not something his hard -nosed gangster father who had six other sons could make sense of either -which is understandable.

I try hard not to think of the sleepless nights of the 80s where he ranted, raved and would develop violent rages that left me exhausted and terrified. I try hard to recall the young man who tenderly held his baby daughter moments after she was born and asked a bewildered midwife if he could 'now take the baby home and I could follow when am ready' (he was convinced Ashley would hate the feel of the hospital sheets).

The memories of the social awkwardness when he would ask the strangest questions of people like "Do you like boiled beef?" in the middle of a normal business conversation as that thought had just popped into his head, still make me shudder. Or the times when he would deliver a monologue on his favourite Roman Emperors as I am trying to tell him I have a lump in my breast. And then me laughing as he gave me space to explain the breast lump and the minute my mouth shut he explained Claudius in depth and ignored my concern, still make me giggle.

Loud sudden noises, velvet, courgettes, aubergines, lemon flavoured cakes, people being factually incorrect, Princess Diana, public displays of grief for celebrities, reality shows about talentless people, people who don't pick up litter, pets in small apartments, large cutlery, square plates, comedy oversized glasses, clowns, Michael Jackson, speaking to people, comedy where people have to join in and clap or stand up etc, people who cycle through traffic lights, audio libraries that release part 5 of a series of ten and not the previous four books are just some of the THINGS he HATES.

Black pens, lists, opera, poetry, buying five pairs of his favourite shoes, Roman history, audio books, history books, collections of elastic bands, soft fabrics, warm coffee cakes, mint tea, babies, doing anything with numbers, driving, photography, small cutlery, china cups- are just some of the things he loves.

His Aspergers can control his basic emotions, for example when my beloved step mum was dying in a hospital bed, he sat with her for hours and when she finally passed he was distraught as he couldn't feel the same sadness as everyone. We were deep in grief and he announced to the gathered family "I dont feel anything, what is wrong with me?" I ushered him away from the sad group to explain "that's not nice to say to people who do feel stricken" he nodded and walked away bewildered.

His need to walk to the right shop and buy the milk that is cheapest, the exhausting way he associates words I am saying into the line of a song he remembers, his compelling drive to wake up and move everything about in the cupboards as it has 'been bothering him all night' can be so frustrating to live with.

Imagine living with a man who had done so many hurtful things that are seared into your memory, yet you can't recriminate as the majority of them are due to a syndrome he lives with? There is no marriage guidance for a man who doesn't understand  what he did wrong and his only answer is "leave me then, am damaged".

This is the man in 1996, who demanded we all sit in a darkened hotel room at Disney Land Orlando and not turn the TV on as he wanted to sleep and me and his ten year old daughter weren't to move. I can still recall the tantrum he took when we walked into the sunshine and left him behind. I still recall the tears of confusion as he tried to explain why he behaved like that when we returned. Our daughter will have her own tale to tell and I can't speak for her here. She loves her dad.

I love this man and yet when I see other women sit round dinner tables at events I attend to do comedy or go to a night out, I feel a deep pang of jealousy. My husband will never dress in a dinner suit and pour me wine and chat idly to the guy on his left, neither did he see me collect any of the comedy awards that I won, as he can't cope with those events.

He sat in the car near a beach in Troon on the day his daughter graduated university as he was worried he would embarrass her in front of her peers. He listened to his favourite Roman book as she walked off the stage. I watched other proud parents hug each other and I felt alone, yet relieved he wasn't in a situation that would stress him.

My husband in his younger days was very sociable, he ran a bar and used to regularly take customers on European bus runs and host events in the pub. Having spoken to his psychologist it turns out he was 'role playing' the part. Is he 'role playing' being my husband? Is he 'pretending' to be a father?


I don't believe he is. I believe that his role playing was his 'coping mechanism'.
He faked to the world that he was regular member of society and inside waited for the world to catch him being the fake he always felt.
It is no surprise his mental health suffered, and explains his few suicide attempts and his struggle to make sense of a world where he doesn't feel he can fit in.

The upside's are he is completely accepting of every race, creed, colour and sexuality. He doesn't think lateral he thinks literal, and doesn't understand why anyone would discriminate against people for no good reason.

He was a feminist back in the early 80s when men in the East End of Glasgow were worse than radio sport commentators of today. He takes people as he finds them and doesn't have a single Daily Mail bone in his body, as that attitude doesn't make any sense to him.

He is also great when I need someone to run my comedy past, as he can immediately tell me if he doesn't understand the joke or what am trying to say, and makes me reword stories so they make more sense.

When asked to describe his Aspergers he said "Every day I fight with emotions and feelings I can't control, I suppose it's like being homosexual and trying to pretend am straight to the world, or I feel like my skin doesn't feel right and my brain wants to take me into a place I can't get out of. Sometimes there are so many things to cover up in one day, my dyslexia, my depression, my inability to make eye contact, my disdain of other people, my obvious disinterest when someone talks to me and I don't want them near me anymore...it's hard to hide all that inside....and the knowledge of all the things I did to you".

He just sounds like a grumpy old man, but he isn't he can be hilarious and loves that I joke about his syndrome on stage. He can be funny with people he trusts and they are very few, he can be a constant font of information as he retains screeds of facts and figures. His advice on relationships to my girlfriends is utterly genius "he doesn't call you because he doesn't like you enough, get over him now and find a man that isn't indifferent to your needs". (they prefer his advice over mine every time).

The array of nieces and nephews love their uncle and as they got older understood he was 'a bit different' but always found him loving and helpful.

Last year we had booked a Disney on Ice for our wee niece Abigail, I got ill and couldn't take her. Husband stepped in and sat through a giant arena of screaming kids and Disney caterwauling. She was over the moon and explained later "Uncle loved it and sung along with every song" he told us later it was utter hell, the seats were velvet and he faked the whole evening to keep her happy. That's one of the many reasons I love him.

Our daughter is very proud of her dad and her mates come to him for support and advice and even stay over when we are both out of the country on tour, as they enjoy his company and like to hang out with him.

If you are ever in need of someone to face a dilemma with my husband is the most practical, helpful and rational person you could find. He cuts through all emotion and sorts the problems.

When asked what he is happiest about, he often says "that my daughter can read, write and is educated"


I once asked him if he was relieved that Ashley doesn't have Aspergers and he replied "That's a stupid thing to say, she doesn't have it, why would you ask that stupid question, as if you would consider your kid being any other way than the way she is" and that is a brilliant Aspergers answer. 

5 comments:

Leon Clowes said...

Janey, I came across this blog on Twitter and wanted say thank you for such warm and tender writing. Your family sound fantastic. It was a happy coincidence that I came across your blog; my birth-mother died recently, and I promised I would look after her husband Peter, who has never been diagnosed as Aspergers but undoubtedly is. I never grew up with them as my parents but they have both been part of my life as my grandparents raised me, so I am only just getting to know her husband in many ways. I can relate to how tense social situations can be, and they can also be hilarious as Peter will invariably say the most inappropriate thing. He can be crying about his wife's passing, then suddenly he will stop and say something like "I wouldn't want to be a cow, standing in a field all day, in the rain. Only eating grass." Thanks again, I will look out for any London gigs you do, I think I've much to learn! Very best to you, Leon

Frank Brennan said...

Janey, I am a friend on Facebook and think what you have written is oot only brave but also very shows how much humility you and your family have. I am also a fan of your podcasts with Ashley and love how you are so connected with the people who have helped put you where you are. Wee Glesga wummin or not, you really capture what it's like to be a Glaswegian today. Thank you for your sense of humour and outlook on life, you have made this (almost 40 year old) guy's life a bit easier. Much love to you and all of your family. Xxx

Marilla Wex said...

This is great, Janey. I love my Aspergers friends and enjoy their difference. It's a breath of fresh air sometimes!

Karen Redman said...

Janey, So much of what you say is so familiar to me ... I'm fairly convinced that my husband has Aspergers. I asked my MIL about it years ago but he is of a family that could never ever be less than perfect & he grew up always feeling that he was letting his parents down which wasn't helpful to him or to anyone else either. Thanks for posting such an honest blog. I could hug you! Karen (@RedMummy on Twitter)

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