Love In The Time of Autism
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.
By July 2, 2013 - last reviewed on June 9, 2016published
"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.
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.
The Burdens Of Grief And Guilt
The crack in Alessandra* and Nick's* relationship appeared soon after their son was diagnosed and Alessandra was pregnant with their second child. Indeed, many couples struggle most during the period just after diagnosis, says Michael Mancusi, a Massachusetts-based couples therapist who specializes in working with parents of autistic kids. "Generally, there's a slow accumulation of concern long before actual diagnosis. Then, once the diagnosis is made, the dam breaks." Parents must grieve the normal child and the life they'd been expecting.
Unfortunately, people rarely grieve in the same fashion or at the same pace, says Indiana University of Pennsylvania professor Laura Marshak, coauthor of Married with Special Needs Children. "Couples often expect to process grief together, but that's unrealistic and can result in additional distress," she says. While one spouse may want to talk it out, the other might prefer to do anything but. "I wanted to plunge into books. Talk to therapists. Nick wanted me to be his best friend and see him through it," Alessandra explains.
In cases like theirs, the life partner, the only one who can truly relate to the unique stress of the situation, may not be a good person to turn to for support. Grieving a diagnosis differently can create bitterness and distance, Marshak says. Partners need to give each other permission to process feelings in their own manner.
As time passes and couples adjust to their new reality, feelings of grief may give way to guilt that they can't do more for their child. I'm one such parent. At 5½, our son Finn still can't talk, dress, or use the toilet independently. If he's given milk instead of juice or is led out of the playground before he's ready, he'll scream, hit, or bite so hard that he sometimes draws blood. Though we're working with a caring team of therapists and teachers at his public preschool, I can't help but wonder: If we'd tried experimental therapies, or put him through a more strict behavioral program at an earlier age, would he be doing as well as his higher functioning classmates?
Such guilt, Solomon notes, is a common sentiment. "It's not clear why some people seem to get over the most egregious aspects of their autism and others don't, so parents end up wondering if they could have done something else."
Early in Finn's diagnosis I decided that if I pursued every possible avenue of treatment—from removing gluten and casein in his diet to hippotherapy, a type of equine movement intervention—my life would be swallowed up. I would have needed to give up my career and would have had scant energy to devote to my daughter, friends, or other interests that give my life meaning. Yet I can't quiet the idea that that I'm a lesser mother for this decision. And then I feel angry at my husband, Jeff; I know that as the man and primary breadwinner, he doesn't wrestle with these same feelings.
The experience of guilt is often more acute for mothers "because of the association between self-sacrifice and child-rearing," Marshak says. It can help for moms like me to keep in mind that "many women find they are better mothers and partners because they set limits on how much autism consumes their life," she adds. According to her, Jeff and I have taken the right approach; for parents of autistic kids to maintain happiness with themselves, and within their marriage, they "need to draw boundaries in order to preserve the quality of their own lives."
A Lack Of Support
At age 3, Emma* barely spoke. Her adoptive mom, Jessica,* shepherded her treatment plan; as a teacher, she had an "everything's a teachable moment" approach. Jessica's husband, Mike,* who considered her method too strict, seemed to have an easy intimacy and rapport with Emma that Jessica didn't share. Jessica's jealousy manifested as impatience, and one evening she sharply scolded Emma for dawdling. Emma grabbed Jessica's hair so tightly that Mike had to pry her free.
Later than night, Mike said, "You need to do something. I can't live in an environment like this." Jessica started seeing a therapist and learned that Emma's inability to communicate with her was triggering feelings of rejection. "I equated You don't communicate with me with I don't exist in your eyes as your mother," she says. Understanding the source of her anger and jealousy helped her communicate better with Mike—and strengthened their marriage.
According to Dorothea Iannuzzi, a licensed independent clinical social worker who specializes in families affected by autism, the ability to reach out for support is crucial to a couple's ability to withstand the stress of diagnosis and caregiving. "You need to pull in as many supports as you have," she says—including grandparents and friends, who can provide respite from caretaking, "even if it's just one hour a week."
For their part, Alessandra and Nick didn't live near family and regret not reaching out for help from others early on. "We didn't know whom to tell. We just hunkered down and saw our marriage get worse," Alessandra says. Recently she befriended other special-needs families, something she describes as "essential" to her sanity, though it's likely too late for her marriage. "I don't want to be married to Nick anymore, and he doesn't want to be with me."
Brandeis University professor Susan Parish, the director of the Lurie Institute for Disability Policy, argues that the way our social system is set up creates a "perfect storm" of stress for couples like Alessandra and Nick. Parents of kids with disabilities, including autism, must be experts not just about their child, but in educational policy, the health-care system, early intervention, and insurance law, much of which varies by state. "The demands our policy system puts on families are extraordinary and untenable," Parish says, noting that less than 10 percent of funding for those with developmental disabilities goes toward family support. "It's a structural imbalance. We expect families to care for their kids, but we don't provide them adequate support to do so."
Often the result is that one parent has to take on the role of case manager for the child. Especially if the other partner is not on the same page about treatment, the burden of this responsibility may lead to resentment and can create polarity and distance in the relationship.
A Division Of Labor
After Janie* was diagnosed with autism 12 years ago at age 4, her mother, Doreen,* immersed herself in the world of Applied Behavior Analysis (ABA), the therapy proven most effective for kids with ASD. Instead of learning about ABA, or accompanying Doreen to doctor appointments, her husband, Bill,* focused on finding alternative treatments, such as chelation therapy (a process of removing heavy metals from the body) and supplements. But Doreen had no interest in directing money away from ABA. "That was a dividing line for us," she says.
Moreover, Bill, a self-employed sales-training consultant, spent few days at home. While he was gone, Doreen cared for their two daughters—one autistic, one neurotypical—alone. Bill was so detached from Janie's educational plan that once when Doreen asked him to take Janie to school, he drove her to the wrong one.
The "divide and conquer" technique didn't work for Doreen and Bill, but this approach to parenting an autistic child isn't in itself hard on a marriage. Much depends on a couple's ability to communicate and respect each other's contribution. Marshak recommends couples maintain an expectation of teamwork, even when roles are divided. "Couples should understand that roles are not engraved in stone—and allow major role changes."
Such flexibility proved vital for Josh* and Pamela,* whose 5-year-old son, Owen*, was diagnosed with autism soon after the couple moved from Brooklyn to Cambridge so Josh could take a prestigious fellowship that would deepen his work as a classical pianist. Pamela was telecommuting to her job on Wall Street and Josh had more time at his disposal, so he took the lead in managing Owen's care. It was an intense year—especially for Josh. "Instead of photocopying scores from Harvard archives, I was copying neuropsych reports. I hadn't achieved what I wanted to achieve," he recalls.
Though Pamela supports the family she makes a point of staying informed, attending Owen's meetings, and recognizing Josh's contributions. "She gives me a lot of credit for Owen's improvement, and I appreciate it," he says. It's a wise approach. According to Marshak, however couples delegate work, it's important for the caregiving parent to keep the other in the loop about treatment. Equally critical, she says, is that the primary earner recognize "the emotional weight shouldered by the parent who's focused more on caregiving."
Autism Speaks, an organization dedicated to autism research and advocacy, estimates the lifetime cost to parents of an autistic child without an intellectual disability to be $1.4 million. The costs of caring for a child diagnosed with autism and an intellectual disability are estimated to be nearly twice that. At the same time, a 2012 study reported in Pediatrics found that earnings of families with autistic children are 21 percent lower than those whose children have another health limitation—and 28 percent less than those in which children have no health problems. Unsurprisingly, money becomes a wedge issue for many parents of kids diagnosed with an ASD.
To manage the therapy schedule for her son, Alessandra left her job as a museum educator to work from home. Nick, a fine arts painter who worked in graphic communications, had to keep asking for time off, until he was eventually laid off. "There was a certain amount of expectation," he recalls. "They wanted me to be able to attend workshops for professional development and team building. 'I'm sorry, folks I can't do it!'" Losing his job and not being able to afford a studio has been difficult for Nick. "Alessandra's got a professional life that's saved her. My professional life has gotten less satisfying, less lucrative. It's a struggle to say, 'I'm a man. I'm an adult. I have a right to stand up with everyone.'"
This type of financial stress can strain any marriage, especially in a down economy. But for couples affected by ASD, who may see no end to their financial concerns, it can be particularly devastating. For some, an inability to see eye to eye about finances can prove fatal.
After Doreen gave birth to Janie, she left her job, planning to return to her social work career once her girls were older. But the hands-on time required by Janie's autism made that impossible. Bill focused more on his work. But his income was unstable—and he and Doreen often didn't agree on a financial plan. At one point, after their monthly premiums went up, Bill decided to save money by letting the medical insurance lapse. Doreen found out when she went to pick up a prescription. That's when she knew she wanted out. "I said, 'We're making these decisions together or I'm done.' And that was it."
The Strong Get Stronger, The Weak Get Weaker
Doreen doesn't blame Janie's diagnosis for the dissolution of her marriage. "If Janie weren't autistic, could we possibly have worked through it? Maybe. Our situation magnified issues that were already there." Four years separated from Bill, Doreen says, "There's much less stress."
"Parents who already have a challenged marriage may find that they pull apart," Soloman says, because parenting children with severe disabilities often exaggerates qualities already present in a union. Relationships with shaky foundations may simply unravel more quickly than they might otherwise. Hartley agrees: "Couples who lack strong communication skills or conflict-resolution skills may be the ones who are hit hardest by the day-to-day challenges of having a child with an ASD, and their marriages may be the most vulnerable to divorce."
Looking back, Alessandra realizes that "Nick never had great executive functioning skills. I need someone who can stay organized, who doesn't need to be told what to do," she says. "Having a special-needs child blew that wide open." The couple is "committed to being the best parents we can be to our children, whom we love deeply, but stress has eaten away at our ability to love each other," she explains. Still, they can't afford to get divorced. They're already struggling to support one household.
This was true for Christy and Mark, who first noticed their son's "odd" movements when he was 5 months old. In addition to being diagnosed with an ASD, Curtis suffered a range of other health issues, including being severely underweight and undersize. Right away the couple began battling with the medical community, who seemed not to understand how Curtis's ASD diagnosis might relate to his other medical problems. "They totally blew us off," Mark says. But this experience only brought the two closer.
The couple suffered financially when they later hired a lawyer to take on Curtis's public school, where he was languishing. They had to take time off work, transfer their son into a private school while the case went to court, and eventually move to another school district. Fights about doing dishes and other domestic issues became more frequent.
Yet despite these setbacks they have remained close. Mark came from a broken home and is committed to making their marriage work. "I could never leave," he says. Christy adds, "There's something to be said for not throwing away your life raft. We're each other's biggest support."
One trait shared by couples who remain solid despite the stresses of raising a kid with autism: flexibility. "The most important factor is the record of adaptability between the couple," Mancusi says. "Those who can communicate their way through serious problems, tolerate differences without becoming polarized, or get resourceful" are the ones who are likely to make it, he says. Part of being adaptable also means taking steps to fight stress, such as cultivating shared hobbies and a healthy spiritual life.
For Jeff and me, making a point to work on our happiness in this way has been imperative. We give each other time for the occasional yoga class or morning walk, time to nurture versions of ourselves that are separate from our role as parents. Recently we even took a week-long vacation with our daughter, leaving our son with a sitter, so we could enjoy what other families enjoy—eating out, sightseeing, visiting friends.
These efforts help us manage the stress of caring for Finn, so that we can focus on the true joy our strange son provides. When he suddenly crawls to where we're sitting on the floor and starts to knead my belly or rock on his head in my lap, I'll look over at Jeff with a smile that says Yes, he's hard, but I'm so in love with this boy. Jeff smiles back at me, both of us knowing that this is a feeling we share and uniquely understand.