“He would always speak the language of the heart with an awkward foreign accent.” – Orson Scott Card.
My partner has an Autism Spectrum Disorder. Specifically, in the old language before the nominally distinct branch was stricken from medical diagnosis, he has an informal diagnosis at a clinical level of high functioning Asperger’s Syndrome.
This post is written about my feelings and experiences, not all feelings and experiences. It is not written to try and describe ASD. Nor is it written in a politically clean way – it is written as a partner, as a very close loved one, who struggles to share life with someone who has behaviour we may organise and label as ASD. There will be things I write here that are seen almost entirely from my flawed perspective and won’t reflect how my partner sees himself. Such is life.
Nothing here is intended to demonise him or say he is a bad person. He is, in fact, better than any of you. He is the best. And certainly the best thing that has happened to me.
I knew from early on in our romantic entwinement that Something Was Up. Despite my partner (D) being a romantic, exuberant, involved and cheeky playmate – and despite his clear and intimate fondness for me – there were times when he just didn’t seem to ‘get’ emotion. He was also very specific and organised about certain things, enjoyed routine just a little too much and didn’t like when it was thrown out of whack. He was prone to sensory overload – noise, lights, touch. He had a tendency to fixate upon details, thoughts and could talk me under a table on a subject if it was the current subject of focus.
All of this was interesting, but in the throes of feeling all-the-things I pretty much thought it was cute, and ignored it.
Then there was That Night Of Crying, and that was the night that I knew something was actually, properly up.
One of evening I was distressed while ill and trying to fill out a medical form so that I could get antibiotics and not miss my first day of work in a new job. It was late, and I was in a horrid pickle, and needed assistance. I asked my partner for help and he expressed slight grumbles due to needing to go to bed for work the next day. I felt positively awful – and a burden – and began to cry. Solidly, for a very long time. D watched me and said nothing, seemingly impassive. After much hard and increasingly hysterical crying without any physical or verbal comfort from him, I ended up feeling even more upset and said something about it, albeit in a grumpy and sad way. He replied that he didn’t know what to do, so he was just doing nothing. I sat outside of our door and continued to cry on my own. Eventually I came back to bed under my own steam, and lay beside him in bed – still with zero cuddles or comforting words or understanding forthcoming.
It was an eye opening night, and after seeing a therapist and undergoing some testing, he was diagnosed informally with ASD. He fits the bill of a high functioning ASD person to almost a tee – though of course any description you read lumps people’s symptoms into a wholistic mass. Few ASD people have *every* symptom, but he inhabits many of them. And so a journey of discovery and heartache began.
The biggest, most painful discovery was that I was in love with a person who in this moment was not capable of meeting my emotional needs during my most vulnerable moments. Normal life events where a little empathy goes a long way are constant sources of stress in our house – at the end of a gruelling work day when I’m blowing off steam and needed a big hug and unconditional support, I get cool critique and emotional remove.
When I’m depressed and sad, he often just doesn’t have the words, or even the right questions. He’s awkward, stilted, absent or glazed. I know he’s in there, and cares in an odd yet feeling way, but it’s hard to remember when you already feel isolated and trashed by your day. You just want a comrade, someone to be beside you with their own anger at your shitty day. Or someone who understands the love language of physical touch and the wonderful healing power of a hard, wordless bearhug.
What’s terribly hard about this is that I *know* he isn’t an emotionless robot. Far from it – he is full of love, cheekiness, amusement and despair as the next sod. He feels plenty, it just doesn’t filter outwards like me and neither does the information he receives generate a similar response. I know, for instance, he cares in an abstract way about my happiness, and can also parse that a hard day at work interferes with said happiness. But that’s about as far as it goes, because many people with ASD do better with global empathy than specific empathy that requires projected imagining. If he can’t picture himself even close to walking in my shoes, he can’t react genuinely and empathically to my specific experiences. It just leaves him cold.
All he can do is coolly analyse what seems accessible, so a rant about a coworker is digested between us in a barely interested academic style where he picks apart whether my actions and thoughts are logical in the same way we would take down a movie with analysis during a cab ride home. Critique and lack of perceivable connection are obviously not the best in terms of tender loving care. What comes across is an icy, immovable exterior and all feelings inside him seem hidden behind a veil of snow and mist I can’t reach through or push aside.
It seems that it takes me ramping up to a state of absolute hysteria before he feels he can spontaneously wrap his arms around me; that same gesture, if given three hours before, would have met the lion’s share of my emotional needs. Simple gestures seem as far away as a distant star. I’ve taken on board the many suggestions my therapist has, who treats both of us, though I’ve certainly been more dedicated to therapy (and kind of wonder what a mess I *would* be like, without it!) Yet these suggestions don’t seem to advance us much right now beyond acknowledging realities and having the balls to deal with it head on.
At the moment what I’m finding crushing are two things: firstly, imagining the future and secondly, the impact it has on my sense of reality.
My concerns for the future are obvious. If D and I are to have the family together that we so dearly want, then I worry for our kids. I don’t really do distant dads; our kids aren’t having one if I can help it. So if my darling husband, who I love more than he can actually conceive of inside his bright and beautiful brain, can’t handle an articulate and thoughtful me after a hard day – how is he going to deal with the irrational explosive bundle of a baby? I can say “give me a hug” but a baby just bellows and has inarticulate, heavy needs that are unreasonable and potent. They are noisy and confronting. They create chaos, they wreck routines. We talk about this and he worries too. There’s no answer, and while it seems my therapist is determined that I should never have children, I’m not giving up. (If my grown children should ever read this, know I loved you enough to defy Jo.)
A large part of having a child, for me, will be enduring a Bipolar pregnancy which by all descriptions will be a special hell. If I manage to make it un-medicated through the entire thing without a psychotic episode, manic episode or depressive episode, it’ll be a miracle and I’ll have to seriously reconsider my current lack of commitment to the church. But it is likely I will be a pretty hard to handle wife in that time, while I cook a baby. And I’ll have big, unruly emotional needs that will almost require their own raft of solar panels to power and right now I’m scared that he just won’t have it in him to support me.
Secondly, I am just so scared of my reality changing. If you’re denied for long enough of basic hugs and cheering up and connected response from someone you’re close to, you shut off from them (horrible and not good for intimacy) or I think you may start to believe you are in some way wrong for needing what you need. Right *now* I can say firmly that there’s nothing wrong with expecting your husband to be in your corner and be making the tea and saying “WHAT a DICK! UGH!” and scowling when you describe someone street harassing you. I get that this is a normal expectation. But over time, when I just fail to get it over a long period of time, perhaps I’ll start to think I’m unreasonable or irrational, or worse: that I’m too much. I spent almost all of my twenties trying to kill that mindset. I’m not giving it new life now.
After a night of sleep deprivation and sobbing – all very dramatic – I’m feeling tired of a seemingly intractable incompatibility and unsure right now of accessible solutions. Do I accept that living with ASD is just going to suck and deal with it? Do I try to get these needs met elsewhere? Do I become a zen monk who has no emotional needs? Do I prod my partner back into therapy for skills building and concrete strategies?
In the end, I only know one thing for sure: for better and for worse, my Michaela. In sickness and in health. I’m so far from done yet, though I may be limping a little.