NOTE: I’ve found incredible support in an online support group, as well as a vast sea of resources for partners of people with ASD. I’ve also found a number of marriage counselors for neurodiverse relationships, individual counselors who are knowledgeable on ASD, online “101” courses for couples where on has ASD, etc. If you are the partner of someone with ASD or THE partner with ASD and want help or a list of the resources, email me: firstname.lastname@example.org. If you suspect your partner might have ASD and need help sorting it out, drop me a line. If you just need someone to list, DROP ME A LINE. I hear you. I see you. And I will never, ever doubt you.
I’ve been trying to write this for weeks, trying to figure out how to succinctly explain the last thirteen years of my life…but there’s no way to explain it in few enough words that anyone could read through it all. So I’ll just jump right in and weave the history over more time.
Up front, I’ll say that I’ve struggled with how to tell any of this without doing injustice to Autism Spectrum Disorder/Asperger’s. I’m not perfect. Not by a long shot. I have ADHD, though ironically, even my ADHD has taken a back seat to living with ASD. I’ll talk a lot about how people with ASD have different brain wiring—their perspectives are valid and real. I don’t think of these things as “disorders” but as neurotypes. They aren’t wrong. His perspective is no less valid than mine, there needs to be room for both.
But that being said: the impacts on a partner/spouse of living with ASD, particularly undiagnosed can be serious. And if all I do is spew rainbow farts at you about all the magical new tools we’re coming up with to navigate this properly, I’d be doing a huge disservice to myself. I have been putting my needs and feelings on the back burner for thirteen years. There are days where I feel like I’ve ceased to exist as anything other than an extension of him. My experience is not uncommon. At first, this realization felt like a revelation. Finally! Some answers! An explanation to the interactions that always left me feeling lost at sea. An explanation for the loneliness that cuts deeper than I ever imagined possible. I cannot fully explain it to you if you haven’t lived it. Even if you “know” someone with ASD, living with or being partnered with it is a very, very different experience to just knowing someone.
There are some really shitty people out there who say things about how all women think their husbands have Asperger’s or that any time a woman has issues with a man, she calls Asperger’s. Or that we claim Apserger’s so that we can blame all the problems on our husbands. Most of us have blamed ourselves to devastating degrees, isolating ourselves from everyone we knew because we couldn’t explain or expect understanding. We’ve exhausted ourselves with effort. Multiple marriage counselors. Individual counselors. Being called crazy. Taking it upon ourselves entirely to fix everything. We’ve danced around the idea that he might have Aspberger’s for YEARS, always been thrown off by something that didn’t fit the stereotypes on tv. It took us A LOT to finally get to this point, for us to brace ourselves as we say, “I think you have Aspberger’s. I know you have Aspberger’s.”
In my case… I’ve been extraordinarily fortunate that my husband was ready to listen to the descriptions, the diagnostic questions on psychiatric websites. Everything fit both his mom and him to a T. Thirteen years of pieces fell from the sky into place. I learned more about him in two weeks than I had in thirteen years. And I’m lucky. He bought a memoir about a guy his age who got diagnosed with Aspberger’s and the impact on his marriage undiagnosed and after being diagnosed—that was the first book I’d seen him plow through and finish… ever. He’s always only ever read books about economics, music theory or pop culture studies, music technology, biographies… We’ve never shared a book with each other. (Actually, I tried to once. And if you know anything about Murakami, you’ll know how comical it is to ask an Aspie, to read it.)
Also in my case… it’s not just Aspberger’s. My husband developed some dangerous and maladaptive coping mechanisms that have completely knocked the wind out of me. Because of the Aspberger’s, he didn’t connect that what he’d been doing behind my back for so many years would have real impact on me. He was almost… shocked? when I finally uncovered all of it and he was told by me and several therapists how damaging it was. Some of you might think you know what I’m talking about, because I’ve given out little pieces here and there. I’ve told some people a couple of things that felt safe, the little bits that I know people can sympathize with or even relate to. But I’ve held back the vast majority of it, the absolute worst of it. And because of the ASD, he hasn’t really done the repair work. He might never be able to, even if he wants to.
Aspberger’s, autism, autism spectrum disorder… it’s really hard to understand if you don’t live with it. My story is not unique. In fact, I’ve joined a support group for partner’s living with ASD and read so many books and articles… it’s shocking and somewhat comforting to realize how much my experience fits the model. It’s hard for me to wrap my mind around posting to this group with full honesty, realizing that they’ll actually get it.
I know most of you won’t get it. Some of you might think I sound a little bit crazy, something I’ve become accustomed to over the years. Some of you might be scratching your head because you’ve met him and he doesn’t seem the slightest bit autistic. Well, that’s because of something called masking and camouflaging. It’s his “character.” It’s effort on his part. You have never seen who he really is, and I’m just beginning to see it more. All marriages, all relationships have issues—but when you don’t know what those issues are and that you’re speaking two different languages… it’s harder than usual.
I’ve always been eerily good at reading people, but I’ve gotten even more so over the years. It’s a superhuman skill at this point. I’ve often watched him and, when no one was looking or listening, or after we left, I’ve hissed, “Would you stop performing!” I didn’t know what was going on, only that it sounded so fake and performative. I’m shocked at how few people noticed or questioned why I thought he was performing. Or worse, gave me the, “Oh, my husband acts a little differently, too, when he’s around people.” That’s not what I’m talking about. This is different. When I’ve tried to share or vent, I get people projecting their lives onto me, their own experiences, and their desire to be wise and all-knowing in the ways of the world and human interactions. I cannot tell you how damaging it is to constantly have neurotypical expectations and perceptions shoved on to you at every turn. But when I do try to share, when I dip my toe in the waters and hand you little bits of information to see if it’s safe, if you’ll listen… I’m also often met with the sound of crickets.
So if you do care, and you do want to listen, then I’m telling you that what we—partners of people with ASD–need most is to be heard. We need you to hear this and to not question it. You can ask questions about it, but not question if it’s “real” or we’re seeing things wrongly. Don’t tell me “all people do that to some degree” or “that’s a normal relationship issue.” You don’t need to totally understand it, but you do need to accept that it’s real. I read someone describe a neurodiverse marriage as “caricatured bigger.” What an apt description.
I don’t mean to paint this horrifically bleak picture. Knowing is half the battle, as they say, and there are some really wonderful stories from people who’ve been married for decades. I hope to be one of those people. But there’s so many factors, including whether or not the partner with ASD is willing and open to accept the ASD and work with it. There can be other pathologies at play, which is our case. Trauma, which my husband ALSO has, plays a role. (For some reason, people think you can’t have trauma AND ASD? That’s nonsense.)
It’s not bleak, and I have a lot of compassion for my husband as I learn more about what his life has been like with this—including how my lack of knowing made things worse and hard for him, too. The “real” him, without the characters and personas and masking, is a really sweet guy who wants nothing more than to make me happy, and he feels immense frustration and shame over what he perceives as “failing” with me so often. He is really, really, really smart and his ASD singular focus has made him brilliant in his career. I’ve never done well with “normal,” and when I get to hear the real him, the “weird” shit running through his mind is fascinating and amazing and I freakin’ love it. With the awareness of ASD, he can look back and see his behavior clearly now—I’m lucky in that he does really understand how much he’s hurt me, and he’s willing to do anything and everything to learn how to engage differently. We both are. I never knew how much I mattered to him, but now I can see it very clearly—that what I couldn’t see was how he expressed it differently than what I know. But for me, the last thirteen years have been really, really, really hard. If we knew he had ASD right away, and if he hadn’t inflicted so much damage with his “characters,” we’d be in a much better place. I go out of my way to keep the focus on other people in conversation. I am skittish. I am paranoid. I am secretive. But I’m also comforted that after all this time, I really feel from him that I am something to hold on to because of my willingness to keep looking for answers, to work with him on this, for the fact that I have kept after him for thirteen years to “stop performing” and be his authentic self. I’m the only person who really knows him and knows who that person is, and that means something to me. Just as it means something to me that he’s seen the ugliness I’ve become capable of. When I feel like I’ve lost myself completely, he tells me that he was always confused by me because it always seemed like everyone else is performing, like he is—he thought that’s just what people do—but that I was always nothing but genuine and real. He was confused but also drawn to it. We’ve laughed about how hard it is for him to read people… but since we first met, he said I was never the slightest bit hard to read because I was, to him, always so raw and real. That makes me happy. That makes me realize how far I’ve gotten from that, and that I need to start talking again, to start being that person that I’ve lost.
This realization about the ASD has been a revelation. I was elated, at first. FINALLY! EXPLANATIONS! I AM NOT CRAZY! But now the grief and panic is setting in. My entire universe has been upended and I’m having a hard time adjusting to this new reality. I will adjust, I have no doubt. But conversations with him about his experiences and how he moves through the world are… surreal, sometimes.
I’ll talk more about why I suspected ASD and what finally made me pursue it. Spoiler: eye contact had fuck all to do with anything. ASD is about social and relational interactions. In some ways, I’m starting to understand the masking and camouflaging because it’s what I’ve learned to do. Though not at all to the degree that he has.
So I’ll leave you with three things, or ideas, for now.
This is a PDF chart on “Effects of Differing Neuro/Developmental Levels on Neurotypical/
Autism Spectrum Adult Relationships” from FAAAS (Families of Adults Affected by Asperberger’s Syndrome)
Also from FAAAS is this PDF on “Help for NT spouses whose partner has Asperger’s/high functioning autism,” including information about OTRS and CP: Ongoing Traumatic Relationship Syndrome and Cassandra Phenomenon. OTRS is about the fact that we experience trauma, but it’s unintentional, so what do you do with it? Cassandra Phenomenon is “a metaphor for the emotional and physical suffering to spouses and children of adult individuals with AS and high functioning autism, because spouses and children are typically disbelieved as they attempt to share the cause of their sufferings with others.”
Lastly, this is an article about the masking and camouflaging that people with ASD do for social interactions. The article is specifically about women, but my husband and I read it together and it describes him and what he does 150%. It’s exhausting and draining, and he’s *just* realized he doesn’t need to keep doing it. Maybe you’ll meet him for real sometime. You can read the full article, it’s kind of mind-blowing. But the more interesting bits I’ll paste here. The efforts to control “stimming,” the personas, the “catch phrases” and the gestures & expressions he uses in conversation when he’s masking—I can identify every single one of them:
To compensate, Jennifer says she practices how to act. Before attending a birthday party with her son, for example, she prepares herself to be “on,” correcting her posture and habitual fidgeting. She demonstrates for me how she sits up straight and becomes still. Her face takes on a pleasant and engaged expression, one she might adopt during conversation with another parent. To keep a dialogue going, she might drop in a few well-rehearsed catchphrases, such as “good grief” or “go big or go home.” “I feel if I do the nods, they won’t feel I’m uninterested,” she says.
Nearly everyone makes small adjustments to fit in better or conform to social norms, but camouflaging calls for constant and elaborate effort. It can help women with autism maintain their relationships and careers, but those gains often come at a heavy cost, including physical exhaustion and extreme anxiety.
“Camouflaging is often about a desperate and sometimes subconscious survival battle,” says Kajsa Igelström, assistant professor of neuroscience at Linköping University in Sweden. “And this is an important point, I think — that camouflaging often develops as a natural adaptation strategy to navigate reality,” she says.…
The adults in the survey described an imaginative store of tools they call upon in different situations to avoid pain and gain acceptance. If, for example, someone has trouble starting a conversation, she might practice smiling first, Lai says, or prepare jokes as an ice-breaker. Many women develop a repertoire of personas for different audiences. Jennifer says she studies other people’s behavior and learns gestures or phrases that, to her, seem to project confidence; she often practices in front of a mirror.
Before a job interview, she writes down the questions she thinks she will be asked, and then writes down and memorizes the answers. She has also committed to memory four anecdotes she can tell about how she met a challenging deadline. The survey found that women on the spectrum often create similar rules and scripts for themselves for having conversations. To avoid speaking too much about a restricted interest, they may rehearse stories about other topics. To hide the full extent of her anxiety when she is “shaking inside” because, say, an event is not starting on time, Swearman has prepared herself to say, “I’m upset right now. I can’t focus; I can’t talk to you right now.”…..
Some women say that, in particular, they put in a great deal of effort into disguising their stimming. “For many people, stimming may be a way to self-soothe, self-regulate and relieve anxiety, among other things,” Lai says. And yet these motions — which can include flapping hands, spinning, scratching and head-banging — can also readily ‘out’ these people as having autism.
Igelström and her colleagues interviewed 342 people, mostly women and a few transpeople, about camouflaging their stimming. Many of the participants had self-diagnosed, but 155 women have an official autism diagnosis. Nearly 80 percent of the participants had tried to implement strategies to make stimming less detectable, Igelström says. The most common method is redirecting their energy into less visible muscle movements, such as sucking and clenching their teeth or tensing and relaxing their thigh muscles. The majority also try to channel their need to stim into more socially acceptable movements, such as tapping a pen, doodling or playing with objects under the table. Many try to confine their stimming to times when they are alone or in a safe place, such as with family. Igelström found that a few individuals try to prevent stimming altogether by way of sheer will or by restraining themselves — by sitting on their hands, for example.…….
It’s only after a diagnosis that a woman may ask, “Which parts of myself are an act and which parts of me have been hidden? What do I have that’s valuable inside myself that can’t be expressed because I’m constantly and automatically camouflaging my autistic traits?” Igelström says. “None of those questions can be processed without first getting diagnosed, or at least self-identify, and then replaying the past with this new insight. And for many women, this happens late in life after years of camouflaging in a very uncontrolled, destructive and subconscious way, with many mental-health problems as a consequence.”