Autism in marriage

Meet my perfect Christian family. We’re well dressed. Our home is meticulously maintained. We give of our time, talent and treasure to the service of God. A friend described my family as one of the most put-together she’s ever seen. And I was shocked because here’s the reality: We’re challenged beyond anything I’ve ever known. You see, I’m neurotypical, and my husband – whom I love – is autistic. We have learned to deal with autism in marriage.

A 2019 five-country study found that around 80 per cent of autism is genetically passed down, confirming several previous studies. And according to the Centers for Disease Control and Prevention, about one in 59 children is identified as having an autism spectrum disorder. Yet, autism support is almost exclusively focused on children and their caregivers, generally ignoring the fact that these children grow up to be autistic adults. Many marry, have careers and subsequently slip through the cracks undiagnosed.

The beginning of our marriage story

I’d describe our courtship as sweet obsession. He’d record my voice during conversations and play it back to me, explaining how beautiful my inflections were and how soft and tender my voice was when we chatted. He took pictures of me doing random things like walking out of a store. He’d write love notes and leave them under my car windshield wipers. He treated me to fancy restaurants and gave me expensive gifts. He’d give me shoulder massages to help me de-stress, and we’d go for walks along the boardwalk at dusk, silently savouring our time together. He lavished me with affirming words, telling me I was beautiful, smart, godly and loved. It was enchanting.

When I was with him, I felt wholly accepted and would describe our relationship to friends as “a hand in a glove.” I was enamoured by his loyalty, service to others, generosity, willingness to help, devotion to his family and integrity, and so we married.

Many people with autism have strong interests, which are integrated into their routines and become a way for them to relax. Little did I know at the time, I had been a special interest. Working toward a healthier relationship took many years.

Extreme loneliness

Immediately after marriage, everything changed. My husband ceased to engage with me and our two children. (He and I each had a child from previous marriages.) I’d come home at night hoping for some togetherness, but the house was a mess, dinner had to be prepared and the children needed help with homework, yet my husband was sitting alone, behind a closed door immersed in learning about cellphones, a topic totally unrelated to his work. Confused, I took up the slack, hoping one day I’d see the man I loved again.

But nothing changed, even after we had a child together.

Things began to fall apart. Left to do everything alone – raise the children, clean the house, buy our furnishings, create a social life, pay bills, volunteer at the church, celebrate holidays – I grew jealous of his emotional dependence on cellphone research. Hours were dedicated to this interest. Through pregnancy, sicknesses, job troubles and anything in our lives – big or small – he talked about and focused only on cellphones.

Why doesn’t he love me anymore? I wondered. His passion had once burned bright for me, and now there was a darkness so deep it seemed impenetrable. It was like living with a stranger, or more like an unemotional robot.

A violent turning point

One night, after several weeks in which he’d not said much of anything to me, I asked him to come to bed with me. He agreed. Giddy for a little attention, I showered, lit a few candles and changed into a pretty nightgown. An hour went by, then more than an hour, and there he sat glued to his screen. I was so desperate for love that I became manic. I hurled insults at him. He jumped up, his agitation grew violent as he grabbed his lounge chair and hurled it across the room at me. I ran out, and the wooden chair leg pierced a deep gouge into the door, slamming it shut.

I grew despondent. He retreated further into his interest. And a new cycle of verbal violence emerged.

The autism issues revealed

One night while I was in agonizing prayer, God impressed upon me, Your husband is autistic. That was all He revealed. No further explanation, but that was all I needed. I started doing research on autism in marriage, and God led me to a Christian counsellor named Stephanie Holmes, who helped me understand what I was experiencing.

The signs and symptoms of autism in marriage

Autism, largely a social learning disorder, impaired my husband’s ability to “start, keep and maintain a relationship,” explained Holmes. “Communication is usually why many couples come to counselling,” she shared. “But in this dynamic one partner literally has a disability in understanding context, tone, facial expressions, nonverbal communication and often lacks expressiveness or the ability to modulate tone or volume in everyday situations. Beyond this, they also often have restrictive interests, patterns or routines. What’s more, the autistic partner experiences meltdowns that look like rage if the routine is changed or time is cut short from the interest. The neurotypical spouse experiences painful loneliness because the spouse with autism would rather be doing something with the interest than with him or her.”

Responses from the church and therapists

“This person is usually a really nice person and may faithfully give and serve the church. To the outside world, these good deeds speak so much to his or her character, but the spouse is always second or third fiddle to the autistic spouse’s work, interests and service,” Holmes shared.

I knew this all too well. One time, I shared the pain of my marriage with a pastor who knew us both and respected my husband. He replied “If your husband is mean and not paying enough attention to you, live with it. That’s not a good enough reason to end a marriage.” And before I met Holmes, a prior counsellor told me, “If all I had to tolerate in my marriage was communication issues, I’d still be married.”

Holmes says, “When counsellors are trained in marital therapy, it’s assumed that both people in counselling are neurotypical. However, if one spouse is on the autism spectrum, there are basic skills that must be taught before therapy, such as perspective-taking, learning about mind-blindness, building a feeling vocabulary (as many also lack emotional awareness), and communication and conflict management coaching.”

The dangerous impact on the neurotypical partner

Before I met Holmes, I was in distress and the downplaying of my very real and raw emotions began to affect my health. My hair fell out. I experienced tingling and numbness in my hands and feet. And I developed insomnia, heart palpitations and extreme fatigue. I became highly anxious and was given to panic attacks.

Without support, many neurotypical spouses of partners with autism fall into depression, develop Ongoing Traumatic Relationship Syndrome or autoimmune disorders from the battery of the relationship.

Holmes says, “The anecdotal evidence suggests that the stress of this living situation breaks down the immune system over time. Stress is associated with immune issues and other health conditions. In this situation, it’s ongoing stress without relief or validation.”

Hope after hardship in a marriage with autism

Through Holmes, my husband and I learned how to take a nearly impossible marriage and make it manageable. God also directed me to a free online support group for those married to autistic adults.

Because of the powerful guidance and support I received from Stephanie Holmes and others, I am able to offer these tips I learned from Holmes to anyone married to a person with autism.

Tips for outside help when dealing with autism in marriage

• Seek therapy from a counsellor who specializes in autism in marriage. We had to have professional help to look at where the disability complicated our marriage in decision-making, restrictive interests and communication issues. Rarely can a couple walk this out alone.
• Accept the diagnosis. My husband had to understand how autism impacts self, marriage and others. The spouse with autism must have an open heart to hear what the neurotypical partner needs. It takes a lot of work and support.
• Get a third party involved in finances. We take ongoing finance classes and come to agreements with the instructor’s help and using the learning materials as our rule for how we’ll handle money. This way, I know what’s expected, and he has a budget for spending on his interests. He’s moved on from cellphones, but there is always a new interest.
• Get non-productive, verbally violent communication under control through feedback; seek professional help if necessary. This is a way to share hurtful memories without gaslighting, blame or defensiveness.
• Find friends among those who are accepting. It’s refreshing for us both as we know we can be ourselves.

Tips for you as a couple

• Once per week, offer each other praise and make requests. In my marriage, it gives me ways to love and feel loved, and it gives my autistic partner a specific goal to meet to feel successful in marriage.
• Try very specific conversational strategies, like conversation cards or online lists of date-night conversation starters.
• Go on low-pressure dates. We do activities that don’t involve a lot of talking, like movies, biking and live shows.
• Pray with each other every night, taking turns and saying what is really a pressing concern about the marriage.
• Practice daily acceptance of characteristics that the partner cannot change. I can’t stop being neurotypical and having the need to connect with others. My husband can’t stop being autistic and having the need to spend time alone.
• With that in mind, take time apart. We do some things separately, so I can recharge with people who understand me, and he can feel like himself in the silence of his study.
• Split the chores with a chore chart and maintain a rigid schedule for completion. My husband thrives on a routine and though he doesn’t understand what needs to be done, he appreciates the idea of fairness and doing his share.
• Tell your autistic partner what you want in a calm way. I know it’s hard to say, “I need a hug” or “Could we go out today as a family?” You may understandably feel like your partner should just know this. But without those direct statements, your autistic partner may be unaware of your needs or that he or she should be doing something to help.
• Remember who you are in Christ. My husband and I remember that we are made in the image of God and that God loves us both.

What you can do

Life isn’t black and white. We live in a fallen world. Yet, through this very painful and personal situation, I’ve learned there is hope in brokenness no matter how desperate the situation may feel. God can help neurotypical partners who find themselves in a marriage with someone on the autism spectrum. It’s hard, but not impossible with God.

If you would like to speak to one of our in-house Christian counsellors, you can call our team at 1.800.661.9800 Monday to Friday, 8 a.m. to 4 p.m. to set up a free, one-time phone counselling consultation.