Kristin Berg, an assistant professor of occupational therapy, remembers the moment well. Early in her career she worked as a mentor for children and teenagers with disabilities, but some of them seemed disengaged no matter what she tried. Was something on their minds? It wasn’t until one teen opened up about being abused—and others began sharing similar experiences—that Berg understood. “I realized that many of these youth had never been asked about abuse,” she says. “I thought I had all the answers, but it turns out I was asking the wrong questions.”
The moment stuck with her: Berg now researches the abuse and neglect of children with disabilities. In research recently published in Developmental Medicine and Child Neurology, Berg and other researchers find that for children with autism spectrum disorder (ASD), traumatic experiences often occur more frequently than for other children. It’s a major step forward in understanding the unique—and sometimes hidden—challenges that children with ASD face.
Adverse childhood experiences (or ACEs) can range from being neglected to having a parent die to witnessing neighborhood violence. Research already shows that ACEs can negatively impact someone’s health long after childhood. But Berg and her colleagues found that children with ASD encounter these experiences more often—and are more impacted than other children—because care providers miss opportunities to identify trauma, and because of a lack of targeted support. That may lead to more severe ASD symptoms in childhood, and health problems like depression, hypertension or obesity later in life.
Berg says that many factors are at work, but a large one may involve money. “Parents might reduce their work hours or drop out of the labor force because of a lack of available childcare, or because of the challenges of accessing fragmented services,” she explains. Earning less money can push the family to other hardships, like being forced to move into a less expensive but more dangerous neighborhood. Those changes can be especially stressful for children with ASD and their families, who already face greater social isolation and the stigma of disability.
But there’s hope. Berg says that her team’s research encourages healthcare and social work professionals to re-examine how they assess and treat children with ASD. Too often, she says, providers fail to recognize the symptoms of trauma, instead writing off issues like behavioral challenges as symptoms of ASD. “A screening for adverse childhood experiences could help identify the most vulnerable children and families,” explains Berg. And once those families are identified, she says, it’s important to help them access the specific resources that they and their children might need.
Ultimately it’s about being receptive to the individual stories and experiences of children with ASD and their families—and not assuming that we have all the answers. That’s something Berg learned years ago, when a single teen suddenly decided to speak up. “The experience changed my life and altered my career trajectory,” she says. With this research, she’s hoping more care providers will soon say the same thing.
You can learn more about Kristin Berg and her research here.