Tag Archives: asd

Active consent and Aspergers: a wobbly week


hands and ringsI’ve written here before about navigating a marriage with my rather wonderful ASD (Autism Spectrum Disorder/Aspergers) partner and I guess it’s time for another installment because…what a week.

A week ago my husband and I decided to have children next year which is a massive step for us – and not without complications. Since it’ll be a non-neurotypical pregnancy all round – with one partner with Bipolar and PTSD on a cocktail of meds and the other with high functioning ASD – there’s been plenty of reason for our mutual therapist to question the sanity of having offspring. We’re a fairly determined, hard-working and stubborn pair with a lot of community support though, so we tend to have a fuck-you attitude to suggestions that we not have a family because our brains were born queered.

Of course, life has a sense of humour so it was inevitable that we’d have some AS roadblocks through the week. Honestly, it felt a little like the universe was taking our thrilled enthusiasm and poking at it, grinning, sneering “oh YEAH? We’ll see about that.”

So what happened and what have I learned?

One of the biggest issues for all ASD+non-ASD romances is communication. Because my husband is high functioning and has loads of shields that helps him move in the world of human relationships without tripping the radar of NTs (neuro-typical people), I sometimes forget he has ASD. Seriously. I forget. The moment in which I remember feels like the most horrible, stomach turning moment, when all becomes frozen and fractious and there feels like no way out.

In this case, it was during a moment of getting-it-on. I thought we were running one intimacy script and he thought we were running another, and playfulness ended in the most awkward irritation you could imagine. My bratty, cutesy taunting was taken not as bratty, cutesy taunting but on face value as real meanness. Things that another partner would understand as play and silly cheek, based on a bunch of non verbal cues and context, my husband takes literally. And the first I knew of this was when he suddenly withdrew, became extremely cold and irritated and asked with a degree of hurt in his voice “what are you doing?

It felt like standing in the snow in a warm jacket, only to have it ripped away. My reaction was one of sudden emotional whiplash, and this small and seemingly unimportant interaction took on huge significance and became about ALL intimacy and the WHOLE relationship. I was hurt and he was hurt and everyone was having a bad time. The ensuing conversation was not the best, and we fell asleep feeling exhausted and pained – two people on different continents, staring across at each other in hostile rebuke and wretched mystery.

The morning brought more discord and my ramping PMS did not add coins to the situation at all. I was back in jesus-fuck-I-don’t-get-you land and he was feeling…well, I don’t want to speak for what he was feeling, but it appeared difficult. We walked to our morning bus holding hands, trying hard to reach over the water between our continents and mostly succeeding.

All that morning I felt so isolated. It is difficult knowing not one soul in my situation. I don’t know anyone with an ASD partner and that’s lonely at the best of times. When in crisis, it feels utterly bleak. I reach out to friends and feel met with either a rejection of my partner (which angers me – I don’t want to leave him, I want strategies to stay with him!) or a rejection of me for having feelings (because apparently anything less than a wholesale celebration of ASD and a suppression of the difficulties of loving these wonderful people is flawed). Both stances are fucked and unhelpful. And then, of course, there’s the friends too busy with their lives to give a shit because they have their own problems.

What I really need is just one damn friend who has an ASD partner, with whom I can have coffee, who will reflect back to me the mutuality of love and frustration that is this way of life. From whom I feel no judgment, and receive unequivocal support – not just of me, but of my marriage.

That night, we went to see a movie together because we love doing that. We splashed a little cash to do it, despite needing to save for our Europe trip in September, and it was seriously the best decision. Being able to bond again over something that we found emotionally neutral and fun, to see each other again as desirable and a comrade, to make out in the dark on Norton street…these were ways to meet in the middle, and not travel to poles apart.

We briefly discussed through the day by text, too, the idea of moving towards a more heightened active consent model. Inspired by an article I’d read about how very active consent is good for people with ASD who find negotiating these situations hard, I suggested we talk about it. It came out that the problem with the intimacy exchange where things had blown up was because my husband had just not known what the fuck was going on. In my mind, it was obvious, but it wasn’t to him.

To me it was incomprehensible that it wasn’t obvious but that’s where the divide between ASD thinking and non-ASD thinking comes in: what I can intuit is often a garbled non-language to my husband. He needs it stated, he needs the checkin, he needs the clear-cut discussion. He needs me to use a safeword or to signal that I’m playing before I play. Non-verbal cues that might just be enough with another partner are lost on him. He doesn’t do information that way. And while that’s completely excellent to know (now), I hadn’t known that before and adjusting to that new way of doing things requires practice and some thinking.

This morning we had another one of those overwhelming “different planet” discussions where I brought up where we were going towards active-consent practices and what we were reading/doing/thinking, really eager to do some work with him on it (I tend to get over-excited about relationship work and want to roll up my sleeves and get cracking right away).

Thrown, he became immediately stressed and hostile that I’d raised it in that moment, saying we had too much to do today. As the discussion wound on, with ebbs and flows of arrrgh, wtf, etc, it became apparent that the very same issue that had come up with the intimacy exchange 48 hours before had blocked us again. After some teariness and wariness of each other, he eventually stepped me through the fact that having no time to reflect and consider before entering into a difficult emotional discussion freaked him out immensely. In his mind, the plan of the day was eat pancakes, do dishes, hang laundry, do study…not discuss emotional things with no notice. The plan was disrupted and the plan was important, and disruptions to the plan were unacceptable or at the least really difficult.

Everything was ok once I understood this…not perfectly ok, or crytallised into easiness, but I could see how it had come to pass that this conversation (so easy and natural for me) was actually fairly horrifying for him.

I find it hard to admit just how much of the work we do is slowly skewing towards supporting the ASD perspective in our relationship, but in the end, that’s life. I am the more flexible one, thus I must bend. What else is there to do? I will feel angry and I will feel tired, but would I change out him for someone else? Fuck no. I love him for all his complexities, just as he loves me for mine. And there are many things about his ASD that make him a kickass partner, and much better for me than someone without ASD.

I can honestly say that despite the tears and the exhaustion, the week has rounded out with us both even stronger in our bond and our resolve to be our best selves for each other.

What’s my takeaway learning from this? It’s a little like a lot of what I’ve been reading on teh internets and more and more the penny drop moments that partners of an ASD cutie express really track for me too.

1. My partner needs notice before things that are potentially emotionally fraught. This includes intimacy – which is hard to read for a lot of us, but sometimes completely unfathomable for my partner. Active consent practices are something that can help – simplifying the feeling of ‘not knowing’ for him by integrating systematic checking in regardless of how time goes on, or however comfortable we feel. Rather than waiting for him to intuit, open up the floor for him to tell me and ask questions by starting a conversation every time we are close.

2. My partner needs notice before emotional discussions, to gather his thoughts and do reading, research or even just note what he’d like to say and feel prepared. I need to find out too what is happening in his head before emotional discussions. Does he have a script running that I’m disrupting? If the goal is a healthy, happy discussion, how can I help facilitate that and accommodate the fact that he has additional needs in these contexts?

3. Accept the ASD/non-ASD divide and the fact that there is inbuilt inflexibility in working on problems that mean things will tend to go towards accommodating the ASD perspective. Having to do a lot of work and make ‘concessions’ is part of the package. Rather than complain about the dark, light a candle, and if you just don’t want to deal with the dark, you know what you need to do. If leaving the relationship is really not your goal, then it is time to accept some things – and vent, sure, but ultimately work on your shit.

4. Find your people. This is my big project because I really feel like I don’t have anyone, yet, who I feel can support me well in this aspect of my relationship. And yeah, I feel pretty scared about that in the runup to having kids. So since I’m working on my shit, it really is time to make “finding a tribe” (so to speak) a bigger priority. Because fuck, coffee with another partner of an ASD person sounds like the biggest craving I have right now.

It’s all a continuous learning curve that leaves me very aware of just how deep my connection with my spouse runs. We stick out the hard times for each other consistently, and that’s what my grandparents and parents have taught me of love.

We are not mere mortals. We are something more when we are together, and that more is difficult to put into words. So instead of try, when I hit post on this post, I’m going to go give my husband a massive life-affirming hug.

 

 

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The art of crying alone: living alongside an ASD partner


“He would always speak the language of the heart with an awkward foreign accent.” – Orson Scott Card.

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The snowy, misty veils as you ascend Grouse Mountain, Vancouver.

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.


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