Ten Years post Diagnosis… What’s changed, What’s the same? Part One - Her (NT) viewpoint
- echodorr5
- 2 days ago
- 5 min read
By Carol Reller
Ten years ago, I realized my husband Greg had Autism Level 1 (then Asperger’s). Some of the details are in this past blog.
So, I wanted to share what has changed and what hasn’t in those ten years.
My husband is still autistic. Yes, that doesn’t change. It doesn’t get fixed, or go away with meds or therapy. Therefore, he still has the traits that go along with being autistic. Traits such as being literal, sequential processing (one thing at a time), memory issues, difficulty with perspective taking (Theory of mind, or mind blindness) and all the other traits that are part of that diagnosis. BUT (and my husband hates when I use that word, but this is a good ‘but’) so much has changed for the better. A snapshot of our journey has gone like this…
Identification (after 25 years married and lots of marriage books, communication books, classes at church, counseling, and lots of prayer)
found a counselor that is a Christian as well as neurodiverse couple specialist,
started therapy INDIVIDUALLY (this is key), we both were willing to be coached and to learn, we were both accepting of the diagnosis (he took a bit longer than me), and we have stayed in counseling/coaching for 10 years (now in maintenance).
Over the years we learned about ourselves and what we bring to the marriage, we read books with online therapy groups and learned strategies for handling various situations, we learned about how each other processes information, and we learned about over stimulation, what causes it and how to handle it. We learned about our brains and what can change and what can’t, as well as how to focus on joy and gratefulness. We also learned how to repair when conversations go bad, and how to pivot when we get stuck.
Now how does all this apply to real life. I’ll break down some of the things we did.
Sensory: Originally Greg would get upset for reasons that were not clear to me, and he would get angry, talk intensely and appear very mad at me. He would get mad at inanimate objects and throw dishtowels and other items (but never at a person and he was never physically violent towards myself or our children). Now, we have realized how he can get overstimulated easily (for example by going to church, walking through a store, having a long conversation, or being around a lot of people). I needed to tell him when he was overstimulated at first which he didn’t like but he has learned much more about how to identify when it is happening. Greg knows he can tell me (no matter where we are) he is getting overstimulated and we will leave or he will head out to the car. We plan our evenings so that we are not out much, and only schedule a few things a day. I tend to overstimulate him by talking too much, but I’m learning to realize how much to share in one sitting and he is learning to tell me kindly when he has had enough. I have also learned that I have many sensory needs myself and have been communicating what they are to Greg and he has been understanding and supportive. Implementing these things has made a huge difference in our lives.
Communication: This is a tough one since this is the crux of the disorder. Originally just about anything could put us into a circular argument (Stephanie calls this a word wrap). It wasn’t about ‘the thing’ (such as the drip system, how the light is installed, the fence post, chopping onions, bagging milk…) It was HOW we communicated (or didn’t) about what was going on in the situation and what we didn’t understand. These arguments, as we would try off and on to work through them, could last up to 3 days. Now, we have learned many strategies. Here are some I use.
Get his attention before I talk such as calling his name or asking if it’s a good time to talk. This refocuses his attention on me from his task.
Talk about projects and plans before they are initiated.
When conversations begin to circle, ask for a break and come back to it later when both have calmed down.
Keep in mind his sensory issues and if it is a good time to communicate.
Communication will always be an issue to a certain extent, but we are handling it much better with continued use of strategies we have learned.
Preferences: Greg has many preferences for how items should be placed or rotated. I didn’t know about many of them for years and so I would get upset when he changed all the dishes in the dishwasher after I had taken time to load it, moved his clothes around after I hung them up for him and when he rearranged and organized glasses already put away. I now know about all these things (well some still surprise me) and I have dealt with them individually. If it’s not an issue for me to change to his way, then I will, such as now I rotate his clothes as I put them away and I line up glasses in the cupboard. He is now in charge of all the dishes so he can do them any way he wants. This has stopped most arguments around these issues.
Motivation: Prior to diagnosis, I was often motivated by what author Jim Wilder calls ‘fear bonds’. I walked on eggshells around Greg, afraid to set him off. I did things out of fear that if I didn’t, he would get mad at me and get angry. After diagnosis, Greg and I were both motivated to make our marriage work. I was gung-ho to dive right in and learn lots of new strategies but Greg needed a lot of time to process. Over time, both of us have been willing to take classes, listen to podcasts, attempt to communicate more effectively with strategies learned, and we read lots of books on autism, the brain, and self-care. Maintenance in the marriage is important, so our motivation to have a good relationship and realize that we are ‘for each other’ has made a significant difference.
Fruits of the Spirit: I stated how autism doesn’t go away. This is true. Something that can have a big impact however, is growing in the fruit of the spirit. "But the Holy Spirit produces this kind of fruit in our lives: love, joy, peace, patience, kindness, goodness, faithfulness, gentleness, and self-control” (Galatians 5:22-23 NLT). We work on thinking about and sharing the joy in our lives. I walk and pray to have peace. We are reminded to show each other kindness and self-control. These are areas that the Holy Spirit can grow in everyone thanks to neuroplasticity. Growing in these areas takes time and work in spiritual formation, but as we grow closer to Christ and develop in the fruits of the spirit, when those moments of difficulty come, they can be handled in a more loving way.
Now all this to say, we are still a work in progress but (again a good ‘but’) our relationship is so much better. Not to say we don’t have issues. In fact, just the other day we had a big misunderstanding and I thought, how can I write a blog about how much we have changed when we continue to have issues. Then I remembered our coach saying, ‘It’s not if, but when something will happen’. The difference is how we handle it. We repair easier and we both realize (eventually) where we could have done better, and we talk it through when each of us is ready. We enjoy being together so much more now.
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