Love In The Time of Autism

Alysia Abbott, Pscyhology Today

Every couple struggles with maintaining intimacy, and kids always add stress. But few people—including the parents themselves—understand the unique effect raising an autistic child can have on a union.

“Is this your son?” the policeman at my door asked over the buzzing of his walkie-talkie. That’s when I saw Finn, then age 4, in a T-shirt and diaper, a bit dirty but unfazed.

“Yes,” I said.

“Your neighbor reported a little boy in the parking lot next door,” the policeman told me. “He was rocking and biting his hand.” I was horrified. I’d thought he was with our sitter, who’d been upstairs vacuuming. My sitter, now crying, thought he’d been with me. Finn had bolted out of the house undetected. It was the second time that month.

Because it was the second time Finn had run off, my husband Jeff and I had to file a report. My mind flooded with guilt and worry: How could we be so negligent? Will Finn be taken away? Do we have to put a tracking collar on his ankle? I looked at Jeff and felt contempt roiling in my belly. We should have put up the gate. Why didn’t he put up the gate? It was just another thing on our ever-expanding to-do list for our autistic son, up there with getting him diagnosed with cortical visual impairment, investigating outplacement options in the district, researching respite-care facilities, and finding out how to qualify for personal-care assistant benefits. Building a gate was just another thing that, as Finn’s parents, we had failed yet to do. I wondered if these failures meant we were failing as a couple.

Americans fear the startling rise in autism diagnoses—one in 88 kids is diagnosed as having an autism spectrum disorder (ASD)—but few understand the experience of those caring for an autistic child. Fewer still grasp how the burden of this care affects a marriage. Differences in style that seem minor, even charming, pre-kid (a little flakiness, a preference for play over planning, ) can be enraging when seen through the prism of raising a child on the spectrum. Many marriages crumple under the strain.

After Finn was diagnosed, I repeatedly came across the statistic that 80 percent of parents of autistic kids divorce. Only recently did I learn that there’s no clear basis for this figure. A study published in 2012, in the Journal of Autism and Developmental Disorders, which used data from 77,911 kids in the 2007 National Survey of Children’s Health, found no evidence to suggest that American children with ASD are at an increased risk for living in a household without both parents compared to normally developing children.

In 2010, however, University of Wisconsin at Madison researchers reported that a longitudinal study of 391 families showed that parents of ASD children were almost twice as likely to divorce as couples who had children without disabilities. (An important finding: The differences in divorce rates between the groups did not appear until the kids were adolescents or adults.)

Even if statistics conflict, neither study suggests that the divorce rate is anywhere close to 80 percent for parents of ASD kids. The prevalence of this misinformation “sends the wrong message—that families are going to fall apart—when that’s not necessarily the case,” says Brian Freedman, a psychologist at the University of Delaware’s Center for Disabilities Studies and the lead author of the 2012 study. “It sets parents up to assume that their marriage is doomed,” he says.

Sigan Hartley, PhD
Sigan Hartley, PhD

Yet experts agree that the stress of caring for an autistic child is significant. Andrew Solomon, author of Far from the Tree, an examination of how parents deal with exceptional children (including those with disabilities), notes that autism is unique for the type of burden it puts on parents. “Parents don’t expect to get children with Down syndrome to the point where they no longer have it. With autism, there are enough people who’ve been responsive to therapy that parents almost have a moral obligation to try to help their child to function better.”What Solomon refers to as the “literature of miracles” puts many parents on a treadmill of trying every possible intervention—even if it’s not scientifically proven, even if it bankrupts the family—which can strain a marriage, especially if one partner doesn’t share the other’s zeal. Disagreements about how care is divided, as well as lack of a support network, can add to a couple’s distress.

Yet that doesn’t mean they can’t survive. “There’s great diversity in terms of outcomes. For some parents, the stress changes their relationship in a negative way, but based on our preliminary studies, the opposite can also be true,” says Sigan Hartley, the lead author of the 2010 report. “Some couples thrive—and comment that they have become closer as a result of their unique experiences related to having a child with an ASD. ” How partners approach the particular stresses of raising an autistic child may determine whether their intimacy is stretched to the breaking point—or, ultimately, solidified.

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