Why I'm gonna start talking about Autism

Last Spring we found out Corey [my husband] has autism. That doesn’t sound to everyone like it’d be good news, but it has surprisingly been one of the most helpful things that’s happened in our marriage. When we found out, if felt like a massive relief of pressure and one huge answer to a million tiny questions.

Let’s rewind a bit. Right before Corey and I got into a relationship, someone close to both of us asked me “so why won’t you just be with him? Do you think you’re too good for him?” and that question upset me because the answer was yes, but it wasn’t because I actually was too good for him, or that he wasn’t good enough. I was wildly into him. I loved so many things about him. We seemed perfect together. It was for a whole lot of reasons, some that were based in fear and what it would look like to others for me to be in a relationship with him. That might sound mean, but I had never been in a romantic relationship with anyone, and the idea that my identity would be immediately associated with someone else scared me. Corey had a reputation for being….weird. And yeah, a lot of people are weird. But Corey was like…not really a COOL weird. Not like a “that guy is super weird, you’re going to love him” weird, but a “oh that guy? He’s f*ckin’ weird” weird. It meant something to be with him, and not necessarily something I liked being associated with. It’s not that Corey didn’t have a good heart, or even that he did anything wrong, he just really doesn’t follow social norms. He doesn’t always understand unspoken expectations or hints or how people normally act to make others not uncomfortable. As someone who is obsessed with making people around me feel comfortable, that was a tough hurdle to get over, but once I did, I tried not to look back. Luckily I’m known for embracing the weird (hi, I spend all my savings visiting gross old adults-only theme hotels because they’re fascinating. I spent years being known as the girl who digs up bones in her spare time. I started a photo series of my husbands butt. I can embrace weird.) It was just new for me to have to embrace someone else’s weird and call it beautiful. I’d only ever done that for myself.

So, I fall for Corey, I love Corey, I embrace his weird and for the most part I get over the fear of what others think of me and of him. It was probably the best decision I ever made. I think we’re good together and I think we’re good for each other. He says I give him too much credit but I don’t think I’d be the strong independent person I am today without him. I think being together makes both of us look cooler, I really do. Experiencing life with him has been one of the greatest joys of being alive. I never know what he’s going to do next to embarrass and delight me. His “weirdness” has been good for us in so many ways. It’s also been a challenge for us in many ways, because until last year, I didn’t know what to call it when he did something “weird” that actually caused an issue, or a fight, or a misunderstanding. I just didn’t have the language. There were times something would upset him to tears (like, every other day in some seasons) and I couldn’t figure out what it was. At times, everything would seem normal to me until something would set him off, and then it was just like he was throwing a tantrum, but without being bratty. Just a completely unexplainable show of emotions that did not make any sense to me. There were nights he would cry, then I would cry, because he couldn’t figure out how to explain to me what was making him so upset. There were nights I would google things like “what does it mean when someone is ‘going crazy’” because that’s all the language I’d been handed to explain some of his behavior. There were things that I thought were totally normal and they’d send him into a frenzy of crying, hitting a pillow, slapping himself, just an extreme show of emotions that terrified and embarrassed me. I didn’t want to tell anyone about it, because I didn’t think they would understand. I thought they would try and tell me not to be with him. He’s never hit me or shown any physical violence towards me, but it scared me just as much to see him physically rough towards himself. Things got to an all-time high of confusion and fear last year. During one of our nights of crying and desperately-try-and-figure-out-what-Corey’s-feeling fights, I finally told him “I love you so much and I want to work through these feelings with you. But if we’re in this same place in 5 years because you choose not to work through what it is you’re feeling, and get help to find out what’s going on in your head, I’m not sure I can stay with you after that.” 

Some of you may think that’s incredibly cruel and harsh, and part of me agrees, but part of me thinks the reason our marriage has been so great is that we both know we’re not actually tied to each other forever. Like, I’m fully aware I could lose him, and he’s aware he could lose me. Yeah we made some promises to each other when we were 21, but I also promised I would finish college. I promised I would never try drugs. I promised I would never go into credit card debt. My point is, things change. Marriage continues to work when you both do, not when you act like the other person is forced to stay with you. So, I tell him for my sake I need him to start figuring out what’s actually going on. I also start doing more research, doing lots of googling, phrases like “who to ask about mental health” and “how to know if you’re going crazy” and all sorts of generals. We had consultations with several therapists but didn’t end up going to one because it’s very expensive and we didn’t feel like we’d found one we liked and trusted at that point. I also wrote out texts to friends that I always ended up deleting because, again, I was afraid if I told them what was going on people would try to pull me away from Corey. I didn’t think anyone would understand. Fast forward a couple weeks, I’m listening to a Podcast by my friend Mike Mchargue (“Ask Science Mike”) and he talks about finding out (in his 40’s) that he’s autistic. I’m at home alone listening to this, and as he’s explaining his symptoms I just start sobbing. I’d never heard anyone else talk about some of the things that were happening to Corey…never. Obviously that didn’t prove to me then and there that what Corey was experiencing was autism, but it showed me that whatever it was, there’s probably an explanation that will help me understand him. It felt so freeing and relieving and it made me really hopeful. I texted Corey who was at the office and said “you should listen to Mike’s new episode…I think you’re gonna like it.” He said he was starting it right then and would let me know what he thought. I showed up at the office about an hour later and found Corey laying on the floor with puffy red eyes and tears down his cheeks. I laughed and cried and hugged him (and photographed him, obviously) and it was the most hopeful I’d felt in months. 

We talked about how we were both feeling, like how everything aligned and made so much sense, and we immediately went to work researching autism. We both read articles and books and listened to podcasts and took tests. Corey reached out to Mike and got more resources. Corey talked to his parents and got more clarity about his childhood and the signs that were there all along. (btw, his parents are incredible and his mom talked about how she’d seen a professional to help her know how to raise Corey who was clearly different than her other kids. Some of her stories with learning how to help him function better were similar to my own.) Within a week it was clear that Corey was autistic. That word that is so terrifying and stigmatized was weirdly comforting. The first time I listened to a book about autism it felt like it explained so many mysteries in our life. The first time I read an article about what it’s like to date someone “on the spectrum” I laughed and cried so hard because I’d never felt so seen. It changed everything. Not overnight, but as we learned how to put language to these symptoms and what they were showing us, it quite literally changed everything.

Corey isn’t defined by his autism. There are so many other things about him that inform who he is as a person. His personality, his experiences, his beliefs, his family, his place in the world, his humor…but I already knew all of those things, so this was just the key to understanding his invisible experiences. His very valid, very invisible (to me) experiences.

Recently someone close to me who knew about what we’d gone through asked why I hadn’t told people about Corey’s autism. Again, I felt that pain and fear that comes with worrying about what people will think. I hated that feeling but I recognized it. Just because I knew how to love and embrace Corey’s weirdness didn’t mean other people would know how to. I was afraid of what people would think of me. Wait…I AM afraid of what people will think of me. I’m afraid of what people will think of him. I’m afraid of what people will assume about us because no one knows what autism really is. (Not no one…but the general public). I’m afraid we won’t get hired. I’m afraid people will use it against him. I’m afraid people will pity us, see us as unreliable, think of us differently. I have these fears not because they’d be right, but because I know what I thought autism was 10 months ago, and I was wrong. I was uninformed. I knew the stereotypes. I knew the movie Rain Man. I knew what 90’s rom-coms and 2000’s TV shows showed in an “autistic” character. I had no real information or experience, and most of us probably don’t. I guess the reason I actually want to share about our experience is to show another side. A side that makes it way more relatable, way more understandable, acceptable, and even a little less weird. I want the future generations of autistic people to be known and loved and understood and accepted as they are.

My fears of what people will think of Corey are valid. People are largely misinformed, or just uninformed. If all you know is a word and a stereotype of what Autism is, you just think it’s weird. You’ll just think those people are “freaks”. But, if you get to know what it actually is, how it shows up with different people (it is a “spectrum” disorder for a reason), you’ll actually realize it’s all pretty freaking normal, understandable, and even really freaking refreshing and funny and real. And yeah, Corey is a total freak, but so am I, and I’m very grateful for that.

This is a lot at once, and I feel like there’s so much more to say, but we’ll save that for another day. I realize I have much to learn about autism and how to best talk about it, but I’m excited to continue doing that and sharing the process with others so they can learn too. I always want to learn more and if there’s anything I’ve stated incorrectly or anything offensive I’m open to feedback! Everything I’m sharing has been approved by Corey. He keeps saying he wishes I would tell people so he wouldn’t have to (lol) so…this is helping us both. Don’t worry, you’ll hear from him as this series unfolds but I had to start somewhere. Thank you for listening.

Corey

Corey

Corey June 4th 2018

Corey June 4th 2018

Corey June 5th, 2018 (crying on the floor, still spinning his fidget spinner)

Corey June 5th, 2018 (crying on the floor, still spinning his fidget spinner)

Us 2010

Us 2010

Us 2019 : photo by  Emily Talsma

Us 2019 : photo by Emily Talsma