by Mike McNulty
The mother of a 5-year-old boy with autism recalled a frightening experience at an amusement park.
“We were going into the arcade, and he was right beside me,” Noreen said. “I look down,” she remembered, “and he is gone.”
Relying on an ability to anticipate her son’s actions and experiences — “what would Daniel be doing?” she asked herself — Noreen backtracked to the family car in the parking lot. As she approached the vehicle, she spotted two small feet peeking out from behind a tire.
“I found him,” she recalled, “like, ‘I’m ready to go.’ ”
Another day, another crisis
Crisis averted. But one month after that incident, a pajama-clad Daniel quietly walked out the front door of his home. A passerby notified police after pulling Daniel away from a busy intersection just as he was starting to cross.
A 2011 national survey of parents found that almost half of all children with autism have wandered away from home or school.
Such stories are likely familiar to parents of children diagnosed with an autism spectrum disorder. But “wandering” or “elopement” — the clinical terms used to describe a child’s sudden absence from controlled environments without adult supervision — is a behavior only recently identified as common to this population.
To explore this problem in more detail, Assistant Professor Olga Solomon and Professor Mary Lawlor at the USC Division of Occupational Science and Occupational Therapy analyzed digital video and audio data providing a look into the experiences of African-American families and their children’s autism diagnoses, interventions and services in Los Angeles County. The data has been collected for “Autism in Urban Context: Linking Heterogeneity with Health and Service Disparities,” a mixed-methods urban ethnographic research project funded by the National Institute of Mental Health.
The interdisciplinary research team includes Professor Sharon Cermak of the USC Division of Occupational Science and Occupational Therapy and four faculty members from the Keck School of Medicine of USC: Marie Poulsen, professor of clinical pediatrics; Thomas Valente, professor of preventive medicine; Marian Williams, assistant professor of clinical pediatrics; and Larry Yin, assistant professor of clinical pediatrics and medical director of the Boone Fetter Clinic at Children’s Hospital Los Angeles.
‘Darting’ episodes can be fatal
A 2011 national survey of parents found that almost half of all children with autism have wandered away from home or school — a behavior often described by family members as “running,” “bolting” or “darting.”
Because the children have no physical features distinguishing them from typically developing peers, strangers who witness an unsupervised child with autism may not realize anything is amiss. Combined with the disorder’s social and communication deficits, which may deter a child from approaching a stranger to ask for help, these episodes can be especially dangerous, even fatal.
To better understand the issue from families’ perspectives, Solomon and Lawlor analyzed interviews with mothers of African-American children ages 4-10 who have an autism diagnosis. Nearly 40 percent of families shared stories of elopement and wandering with the researchers. As part of the larger “Autism in Urban Context” project, the research team also conducted in-person observations, collected video recordings of the children’s visits with health care clinicians and interviewed additional family members, friends and service providers.
Using narrative, phenomenological and interpretive approaches to qualitatively analyze this data, the researchers identified several recurring themes. Mothers often feel isolated and unprepared due to a lack of professional advice about the problem, similar to previous findings that families rarely receive advice from practitioners about wandering, even after an incident has occurred. Services to mitigate elopement and wandering were likely absent from children’s treatment plans. Other mothers described facing an uphill battle when advocating for their child against the public agencies that authorize or deny services.
Solomon and Lawlor hope their research is a step toward helping families and clinicians better understand each other in a mutual effort to develop plans and programs that are more considerate of, and responsive to, children’s and family’s needs. By learning from the mothers of children with autism — the very people who best understand their children’s motivations and needs — families, clinicians and agencies can be empowered to develop and deliver more individualized, comprehensive and family-centered services in the future.
The study also points to an urgent need to understand elopement and wandering not only as the family’s responsibility, but as an issue that requires family-centered approaches across educational, health care and human services systems.
“What is especially evident from our data,” Solomon said, “is that this is a problem not only for the families in our study but for others involved in caring, educating and providing services for the children — their teachers, their health care providers, the administrators who authorize their services and interventions, the law enforcement personnel who are called during an elopement incident and the community members who act on a moment’s notice to bring the children back to safety.”