According to 2012 statistics from the Centers for Disease Control and Prevention, 1 in 88 American children have autism spectrum disorder (ASD). The National Institute of Mental Health defines ASD as “a group of developmental brain disorders,” with a “wide range of symptoms, skills, and levels of impairment, or disability.” Children living with ASD can show minor or severe impairment.
Ever since Bruno Bettelheim came out with pioneering Freudian theories concerning ASD, researchers have tried to uncover this ailment’s mysterious origins. In the 21st century, Bettelheim’s theories blaming maternal alienation are considered dated. Researchers now look to genetic, environmental, and behavioral factors.
In the May 2013 issue of JAMA Psychiatry, two researchers from the Harvard School of Public Health (HSPH) in Cambridge, Massachusetts—Andrea Roberts, PhD, and Marc Weisskopf, PhD—presented a new, intriguing theory. The HSPH researchers found that women who experienced physical, sexual, or emotional abuse as children had a higher chance of bearing children with ASD than women not abused as girls. The most severely abused women had three-and-a-half times the risk, and even women who endured more moderate abuse as children had a higher risk of bearing children with ASD—a 60% higher risk. The authors of the study had gathered data from more than 50,000 women in the Nurses’ Health Study II. The findings suggest that childhood trauma not only affects the victim but her offspring as well.
“Our study identifies a completely new risk factor for autism,” said Roberts in the school’s press release. She then called for further research to understand the connection between a woman’s experience with abuse and her child’s autism. Such research will be used to treat preventable risk factors.
Traditionally, the “face” of ASD has been white, middle-class children. Organizations like New York City-based Autism Speaks work with clinicians around the country to make care available to children and families of all backgrounds. Even with the numerous stories of minorities breaking through the “concrete ceiling” to middle-class success, a third of black American children remain in poverty—and poverty is one factor that leads to child abuse, according to a 2011 Washington University study on race and child-abuse statistics. As the HSPH study implies, child abuse is partly responsible for America’s high ASD rate.
Alycia Halladay, PhD, is senior director for clinical and environmental sciences at Autism Speaks. On the job for nearly nine years, she entered the field back when few services existed for any autistic child.
“The average age of diagnosis was eight,” says Halladay. “We thought it could only be diagnosed by age seven. Now, we know it is much lower.”
Halladay’s focus is on helping minority children become diagnosed as early as possible. Despite the changes in treatment in the last 10 years, minority children living with ASD still get diagnosed less often and later in life. “Seeing families receive help they deserve . . . is incredibly gratifying, but challenging,” says Halladay. “For every one person we help today, there are hundreds of thousands that need the same help.”
In Autism Speaks’ Early Access to Care Program, families receive scientific information and tools, health care providers are trained to refer families with a concern, and culturally competent material is created to reach underserved groups.
“We can’t expect people in the community to find us,” says Halladay, urging health care providers, including nurses, to reach out. “Please contact us, and we’ll work together to help your families get the help they deserve.”
Kathryn Smith, BSN, MN, DPH, works as a registered nurse and nurse care manager at the Boone Fetter Clinic at Children’s Hospital Los Angeles in California. What drew her to pediatric nursing? “I like working with children and their families,” says Smith. “Plus, the kids are so cute.”
For Smith, working with cute kids brings a bit of levity to a condition as perplexing as ASD. “Parents come to the Boone Fetter Clinic with concerns about their child’s behavior or development, and they are afraid,” she says. Smith and her colleagues take parents through a process where parents describe their concerns, and the clinicians at Boone Fetter provide a comprehensive, interdisciplinary assessment.
Smith hasn’t seen a direct link between child abuse and ASD, as theorized by the HSPH study. However, she talks about young patients coming from families with additional stressors, like poverty or drug abuse. She believes that nurses can help women of all backgrounds. They can help women optimize pregnancy health, take time from busy schedules to take care of their own health, prepare and eat healthy food, and exercise.
“[This] may be particularly important,” says Smith, “for those women experiencing other life stressors.”
Dorothea C. Lerman, PhD, currently directs the University of Houston-Clear Lake’s Center for Autism and Developmental Disabilities (CADD) in Texas. After volunteering and working at facilities with mentally disabled people, Lerman decided to make the field of psychology her life’s work.
Lerman teaches graduate and undergraduate students in practicum activities, conducts research, administers the behavior analysis graduate program, and directs CADD. Most of CADD’s services are offered at no cost, a godsend for Houston’s low-income families. The waiting list for the early-intervention program runs about two years.
While Lerman is not a clinician, the graduate students at CADD provide clinical services, all while learning on the job. With a grant from Autism Speaks, CADD has started a program for Spanish-speaking families. In the program, the families learn how to communicate with their autistic child, and they also receive English-enhancement classes.
“Making services more accessible to non-English-speaking families, minorities, and those with low-income is very important,” says Lerman.
Since the days of Bettelheim, academics have advanced research into autism, advocates continue to educate, and nurses show families ways to live with their child’s disability. As the HSPH study suggests, maybe the first step in reducing the autism pandemic is respecting our daughters before they become mothers.
Behlor Santi is a freelance writer based in New York City.