Kelly, neurotypical: I understand why it's said that people can't change. In some ways, that's true. I can't change that sleeping in a warm room or getting too little sleep can trigger my migraines. Josh can't change that too little sleep or a high fever can trigger an epileptic seizure, or that lack of a dependable schedule can send him into a tailspin of irritability and depression.
We can, however, change those behaviors of ours that are problematic for each other. And we can change our attitudes about the sacrifices that we make for each other. We can also change our expectations of each other and of our relationship.
None of these changes are easy, and very few of them are ‘fair.’ I continue to grieve the loss of the marriage that I expected I'd have. Sometimes I'm angry, sometimes I'm sad, and other times I'm happy about the ways my marriage is different than I thought it would be. I very frequently feel proud of the way that I've grown and changed to be a better wife to Josh - and consequently, a better person. And sometimes I feel sorry for myself.
We were so naïve when we started our married life together!
When we got married in 2015, I was very naïve about what it means to be in a marriage.. Josh and I both realized quickly that we needed to learn how to fight fairly, and we needed to change our approach to disagreement. When we fought, I would demand that we discuss the issue immediately, and I wouldn't relent until we had dealt with the issue to my satisfaction. I couldn't stand the idea of conflict lying unresolved, breeding resentment and content. Josh, on the other hand, would beg to discuss the issue later, and often became defensive, or even nasty. He much preferred letting issues lie, and often, not dealing with them at all, which terrified me. It wasn't until Josh received his diagnosis and we met with his therapist that she helped us understand the disconnect and the damage it was doing to our relationship. Josh couldn't simultaneously process my strong emotions, my words, and the issue itself. We had to learn how to de-escalate our verbal conflicts and set them aside until we reached a time and a place that we could productively resolve them. Often, this involves writing to each other - text or email. I have to sacrifice the immediate resolution that I have always thought I need, and he has to commit to seeing the conversation through to the end.
We've had to re-learn how to prioritize our needs - our own, and each other's. Josh' need for sensory detox time has had to take precedence over most other things. It took me a long time to get right with this. It wasn't until I began to liken his need for quiet and sensory deprivation to my own need for assistance when I have a migraine that I was able to understand. I deal with chronic migraine, and when I'm in the midst of an attack, I can't function; everything else is secondary to the need for pain relief. When Josh is overstimulated, it has to be dealt with with the same urgency.
We've had to learn to define terms for each other, clearly and quickly. Josh has to drop any masking or pretense and tell me when he needs what we call 'quiet time' - time alone with as little sensory stimulus as possible. And when I need affection, I have to tell him, in no uncertain terms - hug me! I've had to learn to change my attitude, as well. It's not productive for me to feel insecure about the lack of physical affection that's present in our marriage, or Josh' frequent need to be alone. I have to force myself to remember that it has nothing to do with me or the strength of our marriage. And I have learned to see that when Josh brings me a cup of coffee each morning, that's my morning hug!
These are just a few of the adjustments we have had to make to ensure that we can live well together and that Josh is healthy. The temptation is there to feel sorry for myself. And sometimes I do. However, it's important for me to remember that Josh and others like him, adult autistics, spend a lifetime masking their realities, trying to fit into a society that isn't built for them, sacrificing their own needs and pushing themselves to the point of exhaustion or breakdown. Any sacrifices or changes I have made pale in comparison to the reality of the toll that this daily struggle takes on adults with autism: "Research shows that autistic people are six times more likely to attempt death by suicide – and up to seven times more likely to die by suicide – compared to those who are not autistic."
https://theconversation.com/autistic-people-are-six-times-more-likely-to-attempt-suicide-poor-mental-health-support-may-be-to-blame-180266
What we wish we'd known:
-It is critical for us both that we clearly and regularly verbalize what we need.
-We both have to prioritize understanding our own needs and each other's needs, and separate our feelings about those needs from our feelings about our relationship. For example, Josh's frequent aversion to physical affection has nothing to do with me or his love for me. And Josh has to understand that my sadness at the occasional lack of affection doesn't undermine my love for him, and I have to be allowed to have feelings about that - and even grieve it from time to time.
Listening to the wind of change
The world is closing in
-Scorpions, Wind of Change
Josh, neurodivergent: I have always struggled with change- specifically, to my schedule. In general, if something comes up and changes my schedule the rest of the day is probably not going to be awesome. My response to something happening outside of when it was planned is to just not do anything. But that doesn’t apply at all to responding to the moment, like if someone pulled out in front of me or the power went out or something like that. But if I planned to go to the gym at 10 and all of a sudden I wasn’t able to, not good. I never realized this was an issue, but I also never realized most of the things that make me up were because of how I have existed for so long.
There was a time period when I was absolutely at my best. I was doing undergrad and had a very controlled schedule for classes. My entire day was meticulously planned out; when I would eat, when I worked out, when I slept, and when I could be social. I specifically built into my schedule that I could do something with friends between X and Y time on Tuesday or Thursday. To me, it just seemed like good time management but I’ve come to realize it was my brain protecting itself. Another good example is something I’ve mentioned elsewhere: in bodybuilding, health, and fitness. I respond excellently to a very specific program for my training. When I was eating the exact same thing everyday at the exact same times, I did fantastically well. If I just eat when I am hungry, I usually just don’t eat. I also think a lot of what made me different was masked by how controlled bodybuilding is. Ultimately, with both fitness goals and academic goals I was always able to prioritize them over things like being social.
When we got married, I didn’t realize any of this, so I am certain my wife didn’t. It didn’t go well. Kelly would not want me to go to the gym and instead do something with her. At first, it didn’t bother me at all. But overtime, it snowballed and really got bad for me. I think the combination between my schedule changing unexpectedly along with me “willingly” doing it just imploded upon itself. In prioritizing other people I was sacrificing myself which eventually led to the worst. But without the worst I don’t think I’d ever have sought help, so it wasn’t all bad. However with a better understanding we are able to far better manage things.
I think about all of the things that maybe should have been a red flag in the past and wish I’d have understood sooner. I will beat a dead horse and time and time again say that my diagnosis was probably the best thing that ever happened to me. I honestly believe I wouldn’t be here otherwise or if I were, in a far better way.
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