From the beginning of our relationship and over all the years, there were things that came up that felt and seemed really… well, selfish. And though I called it selfish, something about it didn’t quite fit. He always seemed genuinely confused when I’d call it out. Or he’d get angry at me, feeling like I was being overly critical or he just didn’t see what the big deal was. Taken separately, any of these examples would seem benign or like “typical male behavior,” but they weren’t separate, they were part of a growing pattern that included far more than just a collection of selfish acts. A system of behavior that felt less like selfishness and more like clueless-ness… but the only “rational” thing I could come up with to explain it was to call it selfish:
When our time was up for that first week we spent together in LA, he was tearful on our last night together. I’d said something about going to the airport, and he was like, “Oh. I thought you’d just take a taxi.” I was stunned. Here we were in this new relationship, we’d just spent a great week together—the first time we’d had all to ourselves, and during which he asked me to move out to LA with him—and he had no intention of driving me to the airport when I was flying back to PA to give notice at work. He had planned to just shove me in a taxi and call it a day. In my mind, if I was willing to give up my job and my plans of living abroad again, he could certainly make the effort to drive me to the airport. But more to the point, it was an emotional thing. If I were in his shoes, it would be a no-brainer to spend every last second together, and to do the courtesy of a ride to the airport. I’ve done similar a million times. He did wind up driving me, but he was annoyed. This hurt me for years afterwards—something he’s acknowledged and apologized for in spades. But now we laugh about it because WOW. What an ASD moment. What a neurodiverse relationship moment. He was thinking in terms of practicality and convenience, not emotion. I was thinking in terms of emotion, fuck practicality; love is never convenient. (This was one of those “teachable moments.” Had we known then what we know now… I’d have not made the assumption. I’d have brought it up earlier than the last night. And I’d have not been so hurt when he wanted to just shove me in a taxi and send me on my way. He also would have taken the time to understand my feelings and realized it was something he should do because it was important to me and would make me feel cared for.)
There was the time, when we’d only been together for a few weeks, we were watching tv with my parents late at night. They were driving us to the airport early the next day, and at one point, he yawned and stretched dramatically, saying he’d better get to sleep because he had to get up early. I reminded him tersely, as even my mom had looked sharply at him when he said this, that we were all getting up early. In general, he only ever spoke in terms of “I.” To hear him talk about what he did over a weekend or a holiday, you’d think he lived completely alone. If it was getting to be around lunch time, and we were all home (my husband, our son, and myself), he’d go off and make or get himself something to eat without offering to make anything for our son and I.
He was working long hours throughout my pregnancy and rarely went to appointments with me. When he said he’d go with me to “the next one,” but the next one turned out to be at 7:45 am, he said he’d pass, because he wanted to sleep in.
There was that time, when our son was a baby and sleeping in our room, that he reached over to the nightstand to grab his ear plugs when our son was crying in the middle of the night. He was going to wear ear plugs so he could tune out the crying and go back to sleep. (This is also one I continued to bring up for years and years after.)
Over thirteen years, I’ve accumulated a massive list of incidents where he pretty much sounds like a narcissist. In fact, I tried to convince myself that he did actually have narcissistic personality disorder, down to the narcissistic rages. (I did first think autism, within the first year or so… and I went back to this notion several times over a decade. But I thought he was “too social” or too something or other.) As things got more and more confusing, and we hit the darkest time in our relationship about 4-5 years ago, I threw myself into the idea that he was, indeed, a narcissist. In my gut, it felt like it missed the mark by a few miles, but it was the closest thing I could find that made sense. I felt like I was living in an emotional black hole. I was exhausted from having to manage everything, I was suspicious of everything and hypervigilant, I was constantly rushing to play interference between him and our son, and I felt isolated and desperate. There were times I legitimately felt like I was losing my mind. (It was a huge relief when we realized the ASD thing, and I read stories and research articles and psych journals about this being the exact thing that many partners of people with undiagnosed ASD go through.)
FAAAS (Families of Adults Affected by Asperger’s Syndrome) has a lot of great info about this type of thing, including this chart that gives a rundown of the differences in “developmental levels” between people with Aspergers/Autism Spectrum Disorder and neurotypical people. A lot of this resonates and describes our issues. HOWEVER, it’s frustrating for me to find so many resources for neurotypical partners of people with ASD because I, myself, am not neurotypical. I am also 2e (gifted + ADHD) with misophonia (a neurological “disorder” in which I basically misinterpret trigger sounds), some OCD behaviors that come and go, and emotional hyperarousal (which is pretty common with ADHD and neurologically gifted people—again, “neurologically gifted” is just to remind you that “gifted” does not mean “academically gifted,” which I’ve written a lot about here. It’s really just a different brain wiring that often brings with it all these various “disorders,” causes intensities and sensory issues, and means that we learn and see things very differently from “the norm”).
Hyperarousal means that my feelings, my thoughts, and my reactions are just BIGGER than average people. Generally, if you think of “highs and lows,” the average person’s “highs” and “lows” are my resting state.
Here, I made a little graphic for you. (Did you know I went to art school at one point? har har.) The range of “normal” human emotion (the resting state) is the green. Normal emotional activation/reaction is yellow, and red is when you’d consider checking yourself in to a mental institution. I’m joking, but not. The red zone is what most people consider “bad” or “scary.” But for me (and many people with ADHD or sensory processing disorders), that green zone doesn’t exist for me, in neurotypical terms. I live in the yellow. It’s perfectly normal and fine for me—but to the average person, it can look like I’m distressed or manic or angrier than I am. When I go into the red zone, you might think I need to be checked in somewhere, or put on meds, STAT. But really, I just need time to regulate. This is why I’ve been misdiagnosed as bipolar and other mood disorders. I’ve got a long list of psychiatric meds that I’ve been on at some point (which never worked). One therapist even wanted to put me on lithium because I seemed so over the top talking about something that was going on in my life… even though as soon as I left her office, I was absolutely fine. Meaning, my emotions about what I was talking about were BIG. VERY BIG. But they were momentary, connected to talking about something in my life.
Emotional arousal is a HUGE thing in ADHD, but it’s rarely talked about. It’s a lot to do with executive function and other brain bits. But it’s also to do with the fact that it’s hard to stay calm when you’re being assaulted with sensory overload and information 24/7. I am always thinking about at least five different things at one time. I don’t sleep very well and never have. I’ve never been good at relaxing or sitting still, always driven by motors that never shut down. I can’t filter out all the “unnecessary” things that most people do: all those random background noises, movements of people around you, the tactile sensations of the seams on my clothing (especially if they’re “off center”), conversations of people that have nothing to do with me… I hear and see and smell and feel all of it, all of the time. In some ways, it’s kind of awesome: my “intuition” seems kind of scary sometimes, but it’s not really intuition so much as it is I notice things that other people don’t. I pick up, as I jokingly call it, disturbances in the force that go right over everyone else’s head. I often know how people are feeling before they even do. In other ways… it’s just fucking exhausting. I do not enjoy having a night out ruined by my inability to shut out things that irritate the living daylights out of me. If we’re out and I hear a sound that bothers me or something is doing some sort of repetitive motion, I hyperfocus on it. It becomes and obsession. (I once texted my husband for a full half hour, in a blind rage about a girl who was eating a bag of potato chips and licking her fingers in study room at the University of Washington when I was trying to study between classes. Between the crunchy sound of the bag, her chewing, the lipsmacking and finger licking… to say I was agitated would be an understatement. I was even more astounded that no one else seemed to notice. It was SO LOUD—but then I got a hearing test last year and discovered that I have insanely good hearing for the pitch of all the sounds that drive me mad. My husband, who is a sound guy, and the hearing specialist said that sounds in a particular pitch range pack more of a wallop for me, because they’re much louder than someone with average hearing hears it.)
So. Not sure if you can see where I’m going with this, but here it is: my husband’s ASD has caused some major issues in our marriage.
But so has my ADHD. Or, more to the point, my ADHD has exacerbated the things about ASD that cause issues in relationships. I will talk about those specific things in a dedicated post—things like how he needs more time to process a disagreement or conversation and lags behind with validation or responses. He’ll often throw out random words or sentences to buy himself some time, but those things usually miss the mark and cause more problems. Meanwhile, I process and think and speak at the speed of light, so while he’s still dealing with Thing #1, I’ve already run through about 5 more things and I’m also getting upset about those throwaway sentences that feel horrifically invalidating to me.
There are some fundamental, foundational, very important relational things that he needs to work on and learn. Things like empathy, and regulating his “tantrums” or anger when he’s frustrated, and using words to clearly communicate with me when he’s feeling overwhelmed or upset or disappointed. I need to work on slowing the fuck down, on controlling my propensity to go on a million tangents, on making clear and direct requests, etc. I’ll talk more about all of this, too. It is really, really, really hard for me to slow down, especially when I’m excited and want to share something. There are things that we will never be able to change, because we just aren’t wired that way—my emotions and responses will always be big, for example. He will always have a very low frustration tolerance, as another example. But what we CAN do is “massage the edges” and make it easier to manage so that tense moments are left as moments rather than making all the good moments impossible. All relationships have these things—we’re just fortunate in that we know exactly what they are. We all know that we need to accept the other person as who they are and not who we want them to be, we all know that we should manage our expectations and look past the other person’s faults and appreciate their intentions. I think that most people just don’t get forced to put this into practice and continue to push for the wrong changes. I’ve discovered that, for the majority of our relationship, I’d been missing all the ways he was showing me how much he cared and how important I am to him because I was so fixated on what I expected and what I thought “care” looked like.
There are things I did want that I have to accept I will never have. But that’s ok. He will never be the one to plan our trip to Russia. (We almost went to St. Petersburg this past March, when the pandemic started! Thank god we didn’t!) He will never think to do many of the random housekeeping tasks that used to overwhelm me or made me angry that I always had to be the one to think of this mundane crap. He will often have to be reminded to respond or just acknowledge that he heard me when I tell him some random thing that I read. He will almost never be able to soothe me or say the right thing during an argument, often leaving me feeling temporarily gutted.
BUT. He will happily go along with me (even though travel and “the unexpected” stress him out) when I plan trips. Even better, since travel and experience and adventure are a fundamental need for me, he is completely supportive of my going off to Prague to write for two weeks or anywhere I want to go to let me have that time to just be me. (A few years ago, I went to Berlin for 4 weeks as part of a study abroad program through UW—I had a great time with the other people on the program, but I also had a lot of time to just wander around Berlin by myself. It was the most glorious reminder of all the parts of me I had been neglecting for years.) Complaining for years about the exact same household tasks that he never remembered or thought of to do never worked. But a few weeks ago, we followed advice from a book on ASD marriages and created a shared online calendar. I put repeating calendar events on it like: wash towels, wash bedding, give dogs their heartworm pills, turn on the downstairs air filter, etc. The idea isn’t that *he* needs to do them, but that he can see these things that need to be done, and he’ll do them if I haven’t yet or if I’m extra busy. I also put things on the calendar like “schedule a date night” (which, these days usually just means driving around listening to podcasts that we love together). Sure, that doesn’t fit the mold of spontaneous romance, but if the point of “spontaneous romance” is to create feelings of connection and being loved… guess what? Seeing that someone is eager to care for you and make you happy, but they struggle with figuring it out on their own and will jump to follow easy-to-understand instructions for the sole purpose of doing things for you—that can make you feel pretty damn loved. You just have to let go of preconceived notions of what that looks like.
Conventional wisdom has always told women (or people who identify as women) to stop expecting your boyfriend/husband/partner to read your mind and just “know” what you feel or what you want. But society has drilled into us that if someone really loves us, they will just know. Living with someone with ASD is that, in the extreme. They will never just know. So what’s better—hoping and expecting someone will just know and being disappointed when they don’t, or telling someone exactly what you feel, need, and want, and seeing that they care enough to deliver? Within just a couple of months, my life has become infinitely easier by giving my husband a calendar full of all the mundane details of every day life that need to be taken care of, as well as sprinkling it with “quality time” suggestions.
And while I might feel temporarily gutted after an argument or a tense conversation that he can’t respond immediately to, if I just give him time to process, he’ll come back to me with the most profound emails or texts (he’s better at expressing himself in writing) that never fail to blow my mind and settle my unease. All arguments between couples tend to be, at their core, about not feeling understood, validated, or seen. When I give him time, I’m actually shocked to discover how well he understands or sees me. He actually “gets” me far better than anyone without ASD ever has.
It’s a myth that people with ASD don’t have empathy, by the way. They have plenty of it, to the point where it’s overwhelming. They just don’t know what to do with it, so to speak.
Then there’s the fact that his stability and career obsession give me the freedom to “have ADHD.” I really struggled with the typical working world. (In my twenties, I was fired from or quit more jobs than I can count. My work life was chaos, until I fell into technology. But even then, it was touch and go.) I can figure out how to do or fix or put together just about anything, but when I can’t and have to resort to *gasp!* reading instructions… he takes over. I can’t follow instructions and never could—aside from the fact that I have a hard time focusing on reading them, following a linear, step-by-step way of doing things confuses me something fierce. (Our son is the same way.) AND! I used to lose things all the time—until I just made sure I had specific places to put things (like keys, glasses, wallets, a book I’m reading, a package I need to send…). If I don’t put things in the exact same designated spot every time, I “lose” it. Guess who always reliably finds everything for me?
As the song goes, You can’t always get what you want. But if you try sometimes, well, you just might find you get what you need.