Reflecting on being Married to a Disabled Autistic Person Today

As I was blending up this perfect, little smoothie this afternoon, I thought it might be a lovely illustration of the love I treasure and sometimes get asked about. I’d like to share this story along with a few more illustrations.

Even though these are snippets, when taken together they hopefully show what my married life is like, and a bit of how it works. I hope this glimpse is useful.

The Smoothie

Erika and I go to her Dietician appointments together since she cannot drive right now. She also often asks me to go with her to appointments to help her keep track of the details, support for ADHD.

With her recent dental emergencies and continued malnutrition, Erika asked the Dietician about creating a “magic potion” (Erika’s actual words) that could potentially address nutritional shortcoming left behind from a diet primarily made up of Ensure and saltines. The dietician had great suggestions of fruits and vegetables that fit in with Erika’s current restrictions.

The challenge is that one of the ingredients is plain, nonfat Greek yogurt, and occasionally that product has turned sour in our refrigerator before its expiration date. When Erika encounters this she is unable to eat yogurt for months. She has plenty of safe foods and dairy’s place is tenuous at best.

Bottom line: neither of us wants to break the smoothie.

Therefore, I make smoothies. I make the smoothies because Erika is doing everything she can to be healthy so we can grow old together. I love her and want to do everything I can to support her efforts in being as healthy as possible. Sometimes this takes the form of making smoothies.

This is part of what it CAN look like to be married to a disabled, autistic person today.

But that’s not ALL it can look like…

The Wedding Portrait

Erika’s gift for our 13th wedding anniversary this year was to use the technology only invented in 2023 to digitally restore and remaster a blurry, low-resolution image from our wedding day, in order to create a proper wedding portrait, which we never had before.

 

Receiving a gift (this portrait) that I never thought would even be possible? She has skills I do not, nor do I have the patience for what feels tedious to me – things like photo restoration using technology.

This is also what it CAN look like to be married to a disabled, autistic person today.

But that’s not ALL it can look like…

The Miscommunication

It’s not always easy. Whenever we’ve had any arguments, it began with some kind of misunderstanding or miscommunication. Erika experienced something I didn’t intend. I attributed a motive to her words or actions that she didn’t actually have. We both have history of people treating us badly.

We’re human and we carry these wounds into our relationship. We have a great marriage. We are equals with all the love and respect needed to keep our relationship in good shape. However, there are moments that I get so frustrated or hurt or angry and it’s all because what was heard wasn’t actually what was said.

Honestly, it happens mostly when I am tired, and respond to Erika without thinking about who she is and how she navigates life. It isn’t common and we manage to work it out. After 13 years of marriage, we are still learning things about each other.

This is also what it CAN look like to be married to a disabled, autistic person today.

But that’s not ALL it can look like…

The Documentaries

For most of our marriage, Erika has not slept during regular hours. And I have my own health stuff, so I need a lot of sleep. One of the things that Erika has done to let me sleep is to watch documentaries through the night until she has been able to go to sleep. Fine, right?

Well, first thing in the morning I would get a summary of all the things she learned. The topics ranged quite a bit and, trust me, they were not always what a person would want to hear first thing in the morning.

Also, I am not a morning person. Erika figured this out and would then send me summaries of her documentary gleanings so I could read them when I wanted to. I seldom read them because I am generally not a documentary fan, and she eventually moved to sharing the content when it becomes relevant.

I am happy to say, the summary notes have stopped. I’m happy because I didn’t enjoy waking up to such lists of facts as those of the origins of the U.S. public sewer system. I’m also happy because now Erika shares facts when I’m awake, and interested in them specifically, which makes for better connection.

This is also what it CAN look like to be married to a disabled, autistic person today.

But that’s not ALL it can look like…

The Shuttlebus Conversion

I was scheduled for a long-overdue sabbatical in the summer of 2020. When it became apparent that there was to be no travel that summer, Erika and I started to talk about getting some kind of camper. We considered all kinds of possibilities.

When it became clear that COVID wasn’t ending and we didn’t know when it would be safe for me to get on a plane or stay in a hotel room (spoiler alert: in 2024, it still isn’t safe for me), we got more serious about figuring out safe travel.

Remember those documentaries Erika watched? At least one of them was on van life. We made an informed, joint decision to purchase a shuttlebus. And Erika figured out how to convert it into an accessible RV.

The story of the actual conversion is worthy of it’s own post, but suffice it to say, Erika’s skills and knowledge and love for me made it happen.

Of course, it was after our epic initial cross-country, 5k mi (8k km) adventure that Erika’s own health took a turn. Now we both treasure the trips and joy that the bus allows. Just know that I could never have done it without her.

This is also what it CAN look like to be married to a disabled, autistic person today.

But that’s not ALL it can look like…

The Loyalty

Okay, so I probably don’t need to write this bit after the others. However, it’s important enough to make it explicit. Erika is the most loyal person I know. She loves me completely even in those moments of miscommunication.

Just as I support Erika in her seeking health by making her smoothies and doing other things I may not want to do, Erika believes in me and supports me taking care of me even when she doesn’t like it.

For example, I need time alone, preferably in nature to rejuvenate. With the bus I am able to go camping a couple times per year by myself. Life is easier for Erika when we are together and there is some semblance of routine to our days. When I go away for a week, it’s hard for her.

Yet, she shares my joy and supports my going. She plans for the supports she will need in my absence, I help with that planning as needed, and then I go. This is another example of us supporting each other.

 

Our life together isn’t perfect because nobody’s life is perfect. And even at the end of a year like this one has been, we’ve had so much more laughter than tears. And, after 13 years of married life, I still say that Erika is the perfect spouse for me. I wouldn’t change anything that makes her her. Well, I would give her better health if I could.

This is also what it CAN look like to be married to a disabled, autistic person today.

I was invited to write this article, and I hope that it’s useful to some. 

Want to discuss this topic? There is a post about this article on the Autistic PhD facebook page.