Hearing the word autism for the first time shook me to the core as a mother. I never imagined it would do the same thing to my marriage. My husband and I were one of those couples who always made other people feel a bit jealous. We were high school sweethearts, and we fit so well together that it was like we were made for each other. Being apart, even for work, seemed so unbearable that we would talk on the phone several times a day. Whenever something good happened, it wasn't quite sweet enough until I had shared it with my best friend. When the bad things happened, we held each other up.
When the doctor confirmed our worst fears that our 4-year-old son was autistic, I knew that we would need each other more than ever. Even when I read that up to 65 percent of parents who have a child with autism get divorced, I wasn't fazed at all. That wouldn't be us. Our relationship was much stronger than that—famous last words.
It didn't fall apart overnight. The change was so gradual, it completely escaped our radar. The added stress of parenting a special needs child slowly and steadily chipped away at our once firm foundation until we were left holding crumbling pieces of a once thriving relationship. To say that we were blindsided would be an understatement. This was supposed to happen to other couples.
Eventually, our relationship was so tenuous that we couldn't keep slapping on a happy face and pretending like it was all status quo. Standing at the crossroads of calling it quits and cobbling our broken pieces back together, we knew something had to change. To make that decision, we forced ourselves to confront the raw and painfully honest process of admitting where we had failed.
Our first mistake was right out of the gate. We weathered the initial shock of the diagnosis and ensuing therapy onslaught without as much as a hiccup. After the dust settled and autism became our new normal, we still felt the daily weight of those challenges, but we resolved to keep marching forward with a stiff upper lip. That mistake was the first step on a dark and twisty path.
While I don't want to paint autism as all bad, there is an inevitable loss that happens when you get that news. We both lost something as individual parents and as a couple who had plans for their family together. So many things changed with the diagnosis. We had to restructure our parenting style, our plans for the future, our finances, and our day-to-day interactions. Those were big changes that deserved at least an honest conversation between partners.
In skipping the crucial step of acknowledging the loss, we undermined our ability to understand and support each other. If we had taken the time to grieve and regroup, we could have planned for the conflict that we encountered when we had differences in parenting styles or moments that were poles apart from what we had expected from parenting. Most importantly, we would have admitted out loud that we were defeated and needed support from the other.
Going forward, I became the expert on all things autism, a move that alienated me from my husband in more than one way. I was the one who fielded all the meltdowns and studied up on all the latest treatment options. Without meaning to, I became fiercely protective of that position and frustrated with my husband when he didn't know how to handle our son the "right way." The more I insisted on being the sole caregiver, the more my husband withdrew from both of us. His withdrawal felt like a lack of support at a time when I needed it most, so I withdrew from him as well. It was an ugly push and shove that only yielded an ever-widening chasm between us.
That chasm, along with the relentless stress of dealing with an emotionally volatile child, did some pretty demoralizing damage to each of us as individuals. As the self-assigned sole caregiver for our son, I built a stony exterior to mask the exhausted and withered soul that was inside. Most days, my husband would come home to a glassy-eyed and silent zombie. In fear and frustration, he threw himself into work, convinced that he was doing his best to provide for his struggling family. In reality, work was his escape from reality. We were both running, but in opposite directions.
The immense stress and emotional disconnection took a huge toll on our sex life. I was spending all my energy just getting through each day with my son, while my husband was working himself to the point of depression to fill in the gap of an emotionally unavailable wife. In the rare moments that we might look at each other before we dropped into bed, all we saw was emptiness and exhaustion. If there was any measure of how far apart we had grown, it was in that massive gap in our king-sized bed.
Through therapy and with time, our son made great improvements and the stress lessened, but the damage to our marriage was already done. Once we were disconnected physically and emotionally, it was a short trip to each of us blaming the other for everything that was wrong in our relationship. Blaming and shaming were the final low blows.
Hindsight being maddeningly 20/20, I can see now where we let it all fall apart. Like any couple with kids, we struggled with communication, time to work on our relationship, and the blame game. While those pitfalls would have been there without the diagnosis, dealing with autism made us exceptionally vulnerable, both as individuals and as a couple.
Fast forward 10 years post diagnosis, we are, once again, happily married and have a plan to keep it that way. Having traversed the trenches of marriage after autism diagnosis, we are much less naive about the work that it will take to keep our marriage intact. Most couples see a decrease in overall stress as their children get older, which bolsters their relationship, but autism doesn't take a break with age. I know our relationship is still at risk and that we will have to be more intentional than ever to keep from falling back into the same traps.
With that in mind, we are fiercely committed to taking regular weekends and evenings away to reconnect. It's a simple step that has yielded a wealth of benefits in the strength of our relationship. We are also watching each other's back for the anger and depression that creeps up when the stress of parenting a special needs child gets too great. True love these days means telling each other when we are acting a little crazy and need to take a look at our own emotional health. And we are back to talking on the phone several times a day. Most of the time those phone calls are just a few minutes of sharing mundane details, but each one reminds us that we are in this together.