19. Discovering you matter

It’s been eight months since my last post, and as you might imagine, a lot has changed in that time.

Where do I start? There have been so many discoveries about my husband, myself, my children, my feelings and their feelings and even other peoples’ feelings, about perceptions and misconceptions–some of them truly astonishing–that I find it hard to focus on one.

But let’s try. The biggest thing is something both my therapist and our family therapist suggested after observing us for a while: my husband might be on the autism spectrum.

Now, this was a shock, but maybe not for the reasons one would expect. To me, it was mindblowing for the simple reason that I finally realized I matter. You might not be able to understand how someone in a long-term, devoted relationship might be horribly lonely and think they don’t matter, but this is exactly how my life came to be after years (and years!) of being lonely while being with someone.

The times I screamed at my husband, “If you don’t want to be with me, just leave!” are too many to count. Nearly every evening of our life as a couple I spent practically alone–he had his computer, his programming books, his podcasts, the videos about fountain pens. Excursions were hell. Okay, we had small kids, which does complicate trips a lot, and it turned out I had high levels of chronic anxiety, so excursions were bound to be a strain, but still: my husband got squirmy, he resisted, he shouted, everyone got stressed whenever I tried to get us out of the house. Not a nice way to spend days that were supposed to be relaxing. But staying home all the time wasn’t an option either. Kids need fresh air and movement. They go crazy if they’re home all the time–something that has become obvious to many parents during this long, torturous lockdown.

So, here I was eight months ago: I’d never traveled as I wanted, because Urban never wanted to move from his favourite place–which is a chair in front of his computer. Stressed, juggling the emotional health of the family, dealing with a sensitive daughter who suffered from anxiety issues herself, and trying to keep dad on an even keel because his outbreaks were seriously damaging the peace in our family. And on top on all that, I realized I didn’t even want to spend time with my husband. I didn’t even feel remotely inclined to have a meal with him at a restaurant anymore, because there was nothing to talk about. I was bored. I knew there were things that interested him, but he sure as hell didn’t talk about them with me. So, I’d have meals alone, with a book, with a friend.

When I told my therapist all of this (and a bunch more), she frowned and asked, “Is he autistic?”

Welp, turns out the family therapist had the same suspicion, which is why he was insisting on Urban starting therapy ASAP. We found some online tests (on serious websites!) in which he scored highly, which means that there’s a high probability he’s on the spectrum. My husband was shocked. It couldn’t be. Could it?

Then we started thinking about what we knew to be his quirks. Never tolerating help at tasks like repairing things (trying to help him is a surefire way to cause a serious meltdown). Not being able to cope when days don’t follow their usual pattern (this is why Saturdays have been hell for the past 8 years). Not understanding what others feel. And, most of all, not being able to connect emotionally with me, although–it turns out–he actually has feelings. Strong feelings. Feelings he thought were clear.

Now, as you might expect, getting a diagnosis of adult autism during a lockdown is, to put it mildly, nearly impossible. There are precious few experts on the matter of adult autism, and stats show that high-functioning adult autism is often hard to detect because individuals learn to adjust and mask so well when questioned by others. The reason we came to the conclusion was that I knew Urban so well. In a conversation with someone who doesn’t know him, he appears perfectly neurotypical. This is why his therapist, I think, isn’t convinced. She doesn’t see the meltdowns. She doesn’t know about the fidgeting.

Anyway, next week Urban has a first appointment–with volunteers, not a therapist or psychiatrist, sadly–for a first assessment. We don’t know if they’ll find anything, or what they’ll find, but I surely think the suspicion of ASD has helped us already, if only by making me understand things aren’t always what they seem to be. Hostile reactions can have reasons other than mistrust or dislike. Being overwhelmed by tiny things as an adult is perfectly possible. And, most importantly, just because you don’t feel love from your partner, it doesn’t mean it’s not there. It might just mean his way of making connections is underdeveloped.

Anyway, that’s it from me for now. I’m writing, editing, trying to fix my family’s mental health, and as you might imagine, I’m exhausted. Still, I decided to not postpone publishing my books anymore. My writing is what brought this change about, and I’m going to keep writing and publishing for as long as life and our mental health journey can perplex and inspire.