In the early 2000s, Sharon McCarry was a globe-trotting Fortune-500 marketing director working ten to 12 hours a day. When her second child, Colm, started showing developmental delays during his first year, it was the beginning of “a life that was different, in every single aspect,” she says.
McCarry, who lives in Montreal, left behind her demanding job to free up time for advocating and caring for her son. “I flipped some houses to help pay the bills, but my focus was on trying to figure out what was happening with him and how I could help him,” she says. “It was stressful not knowing what was going on.”
Disagreements between McCarry and her common-law partner over the nature and extent of Colm’s needs contributed to their eventual breakup and estrangement. Meanwhile, Colm’s behavioural issues, which included physical tantrums and kicking, were getting in the way of taking him out, even for routine errands such as grocery shopping. “I couldn’t find a babysitter for him, so my parents came over to help a lot. It was all hands on deck,” McCarry says. “At first, my girlfriends continued to invite me out to classes or events. I remember being grateful that they were trying to get me involved in stuff, but I simply couldn’t afford the time.’” Colm was just three years old when he was finally diagnosed with autism-spectrum disorder (ASD), but his disability had already impacted his family’s finances, emotional health, social networks, routines and relationships.
“Family impact” is a measure that researchers use to quantify the effects—positive or negative—that a family experiences as a result of an event, policy or situation. When it comes to understanding the impact of caring for a child with a neurodisability, considering the child’s diagnosis can be helpful, but it doesn’t necessarily paint a complete picture of the family members’ lives and challenges.
“We typically work with the idea that children with ASD present a certain way, that those with global developmental delay (GDD) present a certain way and so on,” says Dr. Emily Gardiner, a researcher affiliated with the Department of Pediatrics at the University of British Columbia. “But if you think about functioning—things like social skills, communication ability or cognitive ability—there’s actually quite a lot of overlap across disorders, and differences within the same disorder.”
From 2014 until 2017, Gardiner’s postdoctoral research was supported by KBHN and BC Children’s Hospital Research Institute. Together with two experienced investigators, Dr. Anton Miller of BC Children’s Hospital and Dr. Lucyna Lach of McGill University, she’s currently producing a series of research papers exploring differences and similarities between the functional profiles of children with various neurodisabilities. “We’re trying to question our expectations about the kinds of challenges that kids and their families may have,” she says.
Measuring Family Impact
Gardiner, Miller and Lach’s latest publication, “Family Impact of Childhood Neurodevelopmental Disability: Considering Adaptive and Maladaptive Behaviour,” was published in the Journal of Intellectual Disability Research in October. In it, they looked at how a child’s specific set of abilities, disabilities and behaviours affects their family. They do so by analyzing data provided between 2011 and 2014 by over 200 parents and caregivers of children with neurodisabilities. The diagnoses represented in the group included ASD, cerebral palsy (CP), global delay and Down syndrome, among others.
The participants answered questionnaires designed to capture their impressions of their children’s difficulties and skills. The questions included, for example, “Does the child have at least one good friend?” “Do they often lose their temper?” and “Are they often fidgeting and squirming?” They also provided information about how they felt that their child’s neurodisability was affecting their families, positively and negatively.
Gardiner and her co-authors crunched the numbers to see which aspects of the children’s functioning were the most clearly and strongly associated with perceived family impact. The kids’ diagnoses didn’t help to explain any differences that weren’t already explained by functional factors.
One of the implications of this finding, Lach says, is that services intended to improve family impact need not be diagnosis-specific. “For instance, if you wanted to set up a group to increase parent-to-parent support, you wouldn’t need separate ones for ASD, GDD, CP and so on. If you bring those parents together, they’ll find they have a lot in common.”
Similarly—although it’s a topic that falls outside the scope of this particular research paper—many people are interested in seeing more treatments and services that cut across diagnostic boundaries to target specific functional challenges such as emotional regulation or speech difficulties. “Non-categorical interventions,” as they are called, were one of the top-10 priorities chosen by nearly 700 stakeholders from across the country in an online survey conducted by KBHN in 2017.
One of the advantages of non-categorical interventions is that they can be made accessible to families of children who are hard to categorize or who don’t yet have a formal diagnosis. “It can take a long time to get a diagnosis,” Gardiner says. “Families who don’t have one are facing a lot of the same functional challenges as those who do, and they’re often left without a defined pathway to support.”
The Toll of Emotional Symptoms
Of all the functional domains included in Gardiner’s study, emotional symptoms (fears, worries, unhappiness, etc.) were associated with the strongest perceived negative impact on the family. This was actually a surprising result, the researchers say, because on average, the people surveyed didn’t think their children’s emotional symptoms were terribly severe, especially compared to other symptoms such as hyperactivity. Even so, it was the emotional issues that seemed to strain the families the most.
“When your child is not feeling okay, you’re not feeling okay,” McCarry affirms. “I think any parent would say that.” For a year and a half, her son Colm was bullied at school—and legal and family barriers were standing in the way of transferring him to a different one. “He wasn’t equipped to deal with it; he would just shut down. He had nightmares. He didn’t want to go back to school. I had to hire a therapist to help him. I lost a lot of weight during that time and felt incredibly anxious about whether he was going to be all right.”
Children’s emotional problems may be particularly distressing to parents and caregivers—even more than other challenges—“because there’s not a lot of readily available support for them,” Gardiner says, “especially in the four-to-13 age range. We tend to focus on these difficulties in adolescence, but this research suggests we should be focusing on them earlier.”
Another issue, according to Lach, is that “the services for child development—those that are good at stimulating children with disabilities and developing their skills—are currently siloed off from those that are geared toward helping kids with mental-health issues. We need to build more hybrid expertise.”
“Emotional symptoms are often invisible,” Lach goes on, “but what the parents in this study seem to be saying is that they’re nevertheless very disruptive to their families.” She explains that ‘externalized’ emotional problems—those that children act out with aggressive or combative behaviour—are more likely to get appropriate treatment than internalized ones that manifest as nervousness, worries, depression or a lack of desire to do things.
This has been the experience of Michelle Goulet-Barteaux, an Alberta-based mother of a child diagnosed with ASD, sensory-processing disorder (SPD), ADHD and several other conditions. “We finally accessed needle-phobia exposure therapy after more than eight years of struggling,” she says, “because my son finally got his arm loose from the five people it took to hold him down and punched a poor lab technician. His referral was essentially fast-tracked into the right stream and we had immediate help with this issue. He already met all the criteria for an anxiety disorder, but it was when the issue became a problem for *them* that they gave him support. I’m grateful for it—don’t get me wrong—but it was as if we needed to prove our need for it with a giant crisis.”
The Effects of Limited Prosocial Skills
Sometimes, emotional disturbances result in social withdrawal or socially inappropriate behaviour. Other times, kids struggle to understand social norms or grasp how their actions affect others. Whatever the root causes, caring for a child who lacked prosocial skills (e.g. demonstrating empathy, kindness, a willingness to share or a desire to help out) also appeared to come at a high family cost in the study. “I have lost many friends due to my child’s behaviour,” says a parent who belongs to KBHN’s Parents Participating in Research Facebook group and who prefers to remain anonymous. “There are many who would never consider babysitting my kids. So respite can be a problem. It’s isolating.”
Social isolation is a common issue for families of children with a neurodisability, Gardiner and her co-authors noted. “Parents feel that they cannot attend social events or complete routine tasks due to uncertainty over their child’s behaviour and the potential for negative social judgment,” they wrote. “Understandably, families of children who demonstrate kindness and who are more considerate of others may experience less disruption to family routines, may be better able to maintain a satisfactory level of social contact and perceive lower overall impact.”
Families are the Experts on their Own Experience
One of the study’s takeaways, Gardiner says, is that service providers shouldn’t assume they understand a family situation based on diagnostic labels alone. “Families are the experts; they know their child best,” she says. “If you ask about the full range of functions, you get a better picture of what the issues are for that specific family.”
Goulet-Barteaux says that diagnostic categories sometimes obscure her own family’s situation and priorities. “I often hesitate to mention my son’s ADHD diagnosis at all. I think his ASD one suits him better, because it’s really social communication and fixations that disrupt his life, but with ADHD, the focus seems to be on making him sit, listen and follow directions. This isn’t super important to me, but it seems to be the gold standard of accomplishment for the ADHD piece.”
In this vein, Gardiner and her co-authors argue that it might help to focus on “the functional limitations that are perceived as the most influential for family routines and relationships, as opposed to those that are most obviously impaired” when the goal is to help families to adapt, thrive and develop resilience.
Positive and Negative Impacts Co-Exist
Even though the study didn’t happen to identify any links between specific functional domains and perceived positive family impacts, Lach emphasizes that these impacts shouldn’t be overlooked. She says that some parents find it helpful to “reframe their situation as not a tragedy but as something that brings both great challenges *and* positive aspects to their family’s life quality.”
McCarry is among the parents who see their lives this way. In 2008, she founded a children’s foundation, La Fondation Place Coco, which manages an early-intervention centre for kids with ASD, The Little Red Playhouse. “For me, raising Colm and his older brother has involved a lot of learning about the human spirit and how much you can grow. And I think that’s why I’m doing what I’m doing: because helping other families actually gives me more satisfaction than my former career did, even though it was tough to lose it at first. Colm changed my life and my perspective, and that’s a very positive thing.”
The Impact of Assisting with ADLs
Having a child with a limited ability to look after day-to-day necessities such as eating, bathing, dressing and toileting was significantly associated with negative perceived family impact in Gardiner’s Journal of Intellectual Disability Research study. This reinforced findings from her 2014 PhD thesis, which examined quality of life in families of children with ASD. There, too, the activities of daily living emerged as one of the most impactful areas. “I found that surprising at the time,” Gardiner says, “because I was expecting it to be ASD’s more hallmark social difficulties. It made me step back and think, ‘Hey, this kind of challenge is not unique to children with ASD. It’s also affecting kids with all kinds of other disabilities.’”
In fact, in KHBN’s recent stakeholder survey, parents’ second-most commonly stated need was allowing family members the option of being employed or subsidized as support workers for the child. “You can easily imagine how the direct, hands-on support required from many caregivers might interfere with their ability to hold a job,” Gardiner says.
For McCarry, the day-to-day demands are considerable, even though they’ve diminished somewhat as her son has grown older and learned to do certain things for himself. “Colm is 15 now, and I still need to be there to tell him he’s got to wash his body, wash his hair, brush his teeth (which he hates to do), put on his pants, put on his socks, put on his deodorant and so on. Past a certain age, the parents of neurotypical children don’t need to think about these things, but for us, it’s a big part of our daily lives.”
Author: Samantha Rideout
Image: Courtesy of Sharon McGarry