Kelly, neurotypical: Driving home from our first date, I knew that Josh could be the one. He was the only man I'd ever encountered who had truly expressed empathy and understanding for one of my biggest life challenges - chronic migraine - and he didn't seem scared away by the challenge either.
I've dealt with migraines since I was 6 or 7 years old, and there have been several points in my life when I've reached the chronic level, or 15 or more migraine days during the course of a month. This condition has been severely debilitating at times, and has caused significant issues in friendships and relationships.
Knowing the way my medical issue had become problematic in prior relationships, I decided to just get it out in the open on our first date. To my surprise and relief, Josh was completely unfazed. He explained that he had been diagnosed with epilepsy when he was just a small child, and knew very well what it was like to live with a chronic medical condition. It was and continues to be an immense source of peace and comfort to know that my husband empathizes with me and supports me in a significant struggle I face.
So imagine my surprise when that feeling of reassuring solidarity began to slip away. When Josh was at his lowest point, prior to receiving his diagnosis, he was incredibly irritable and had seemingly no affection for me - and especially no sympathy for me on my bad days - which left me susceptible to the rabbit hole of garbage online about ASD (autism spectrum disorder) once Josh received his diagnosis.
"Autism is linked to lower levels of empathy"... "People with ASD are sometimes described as lacking in empathy"... I couldn't understand how I could have been so wrong about the person I had married. How could I have fallen in love with someone, thinking he was the only person to ever really understand my life with a chronic medical condition, to turn around a few years later and discover that I was completely wrong?
Conversations with doctors and therapists, and time spent learning and healing, allowed me to again see Josh as I had when we met. First of all, Josh's therapist helped me dispel some of the myths about ASD that I'd fallen prey to as I struggled to navigate his diagnosis (we've mentioned before just how few resources there are for adults who receive an ASD diagnosis, and for their loved ones). And as Josh healed and came to understand himself better, I was able to see that his irritability and withdrawal from our relationship were not permanent(though at times it seemed like they would be). Finally, I was reassured that Josh very deeply experiences empathy, but he has some obstacles to overcome that I do not.
1. Hypothetical thinking is not Josh's forte. Thankfully, his therapist was able to explain this to me. This tells me that it's easier for Josh to empathize with experiences that most closely and explicitly align with his own (this, of course, is true for all of us, but more pronounced for Josh).
2. Josh does not 'read the room' well. He doesn't pick up on the 'signals' I send. Fortunately, his therapist explained this to me as well. If I don't tell Josh that I'm upset, he will likely not notice. He's just not wired that way. It's incumbent upon me to speak up and tell Josh how I'm feeling and what I need.
3. As an undiagnosed autistic adult, Josh lived most of his life with his basic needs unmet, and you can't pour from an empty cup. When Josh was at his low point, he was not yet diagnosed. His environment wasn't what he needed it to be, because we didn't understand his needs. As a result, he was constantly triggered, which led to irritability and emotional withdrawal. In that state, empathy for someone else's feelings is not easy, and wouldn't be for anyone.
In the end, I've landed right back where I started. Josh is an incredibly empathetic person and I'm grateful for the way his life experiences have formed the man I fell in love with.
What I wish I'd known (Kelly): I was right all along about the person I thought Josh was, and I wish that our struggle leading up to and throughout his diagnostic process hadn't caused me to doubt myself or him. There is a great need for a diagnostic process and patient education materials for adults who receive ASD diagnoses and for their loved ones.
Josh, neurodivergent: I have heard more than once either as a question or a statement that autistic folks don’t feel things. It doesn’t phase me when people say something ignorant, because it’s just that. They don’t know and are operating on an invalid assumption. This is something I think about a lot and always have tried to figure out why I feel as I do about what I do (and don’t).
I have come to believe it isn’t that I, and maybe we, are perceived as emotionless - it's more a framing issue. If I don’t think like you do, why would I feel things like you do? Generally, I am well aware when what I am feeling does not correspond with what you were expecting. But something else to consider - my response is the result of my experiences. I tend to think about things very logically to boot.
When our daughter was a few months old, she began choking on milk or maybe formula. Not that coughing and sputtering kind, but the turning blue kind of choking. Luckily, I have always been certified in CPR and first aid, and was even a Red Cross instructor at the time. I remember thinking of the order of things to try to resolve it and it would either work or she’d likely die. But I wasn’t afraid and probably should have been. But to me at the time, there were two outcomes and I could either save her or not. Another example is when she was born. One of the nurses said something about how Kelly felt or emotions running through her or something like that, and it made me think about how I felt. I didn’t feel anything really. I remember going through everything like a drop down menu in my head of emotions and none of them seemed to fit. Then she was born and it didn’t matter. But despite that, it wasn't that I wasn’t interested or that I didn’t care- I very much did. I just process things like that significantly differently than the accepted norm.
When anything happens I categorize it and that is how I respond. If I can have an effect on the outcome I see things very differently than when I can’t. What is vs. what could be, or the hypothetical, trips me up a bit I suppose. I focus on what is relevant.
Josh, when our daughter was born.
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