Fixing a Disparity in Autism Screening
Pediatricians and family physicians have long been used to treating their young patients’ bouts with flu and infections, and struggles with asthma and other chronic diseases. But, more and more, parents seek help from these doctors for behavioral/ emotional/developmental issues in their children — accounting, some say, for as much as half of all office visits.
But that wasn’t true of Latino parents at Unity Health Care’s Upper Cardozo Health Center, a community health center network that provides health care and social service programs for more than 93,000 D. C. residents each year. And it’s likely not true at other clinics that take care of a Latino population in Washington, D.C. or elsewhere in the nation. Research shows that Latino parents rarely seek help for these concerns in their kids from their child’s health care provider.
In turn, the providers at Unity Health Care were not accustomed to probing their patients about such issues — especially autism, a serious disorder that can be ameliorated, to an extent, if caught early enough. Recent science shows that early intervention in some children with autism can actually rewire a growing brain, establishing neural connections that resemble those of kids without the disorder.
Given these new findings, Bruno Anthony, Ph.D., and Mark Minier, M.D., got to work. Anthony, director of research and evaluation for the Georgetown University Center for Child and Human Development, and professor of pediatrics and psychiatry, and Minier, medical director of pediatrics at Unity Health Care and a practicing pediatrician at Upper Cardozo, joined forces, trying to understand a way to increase identification of autism in Latino children.
“It was a collaborative response, a pairing of two communities — research and clinical — to try to fill a real need in our practice,” says Minier.
Anthony took the lead in putting together a research program and obtained $900,000 in funding from the Maternal and Child Health Bureau of the Health Resources and Services Administration.
Now, halfway through the three years of study funding, all Latino toddlers age 18 to 30 months at Unity’s Upper Cardozo Health Center are being screened twice using the M-CHAT, a standardized test for autism. More than 300 Latino children have been screened over the past six months, and 11 have been referred for further assessment, which can lead to beneficial intervention.
But it took a lot of work to reach this point by Anthony, Minier, and the other members of the research team: Matthew Biel, M.D., director of child and adolescent psychiatry and Diane Jacobstein, Ph.D., Keri Linas, Ph.D., Psy.D and Isabella Lorenzo-Hubert, M.Ed., of the Center for Child and Human Development. They had to figure out how an evidence-based autism screening tool used mostly in an English-speaking, European-centered population could be adapted for a Latino population and then incorporated into a very busy primary care setting.
One of their first decisions proved pivotal. They decided that the trained bilingual, bicultural “navigators,” hired through the grant to provide support for families needed to work one-on-one with the Latino families to explain what the M-CHAT was all about, what it might mean for their lives, and to help the families find services in the community if a child was identified as having developmental problems.
Soraya Dos Santos joined the team. She has a masters degree in special education, and has been in the field for 18 years. She is the resident clinical coordinator at Unity’s Upper Cardozo Health Center, which means she collects data for the study, but she also is in the clinic, helping Latino parents understand why autism testing is important. She is in the trenches, calling intervention services, parents, physicians — working to help toddlers at risk.
So is Rocio Mendez, the family navigator. Mendez is an inspired hire given the way she can relate to Latino families. She has a son with autism but before he was diagnosed, she had no idea that anything was amiss with her 18 month-old. Then his daycare center director pointed out “red flags” that might indicate autism — lack of affect, eye contact, speech and so on.
Mendez’s pediatrician was Minier, and when she asked him about her son, he referred him for further testing, which led to early intervention. Now her son is six, in first grade in a regular classroom, and, if anything, he now talks too much, she says, laughing.
“I want to give back a little bit of the great help and the support I received,” Mendez says.
Mendez and Dos Santos help Latino parents with the M-CHAT. They know through focus groups they and the team held which of the standardized questions might be confusing, so they help explain them. They also know, as do Anthony and Minier, that many Latino parents may be reluctant to talk about behavioral or emotional problems.
“In their native countries, we have heard that children with disabilities can be considered intellectually deficient, or very special, sent by the grace of God,” says Anthony. “There is often no information available about autism, no resources and no services. These kids are often kept at home. So the idea of services is rather alien.”
The issue of immigration status is a worry to some parents, but the navigators and physicians assure parents that services to treat autism do not depend on citizenship.
Mendez and Dos Santos have recently started holding regular “charlas” which are informal chat sessions to help parents in the community understand such issues as autism as well as developmental delays. “Latino parents can be quite intimidated by doctors and afraid to speak about these issues with them, so this is a stress-free forum for them,” says Dos Santos.
Also, Biel has trained the child health providers, nurses and social workers at Unity’s Upper Cardozo site to recognize signs of autism and to use the M-CHAT to screen their patients for the disorder. They received up to six hours of education on autism.
This was an important part of the success of the program, Minier says. “I don’t think that medical education has caught up with the increasing research on developmental disabilities and early diagnosis,” he says. “There are a lot of things that primary care doctors have to deal with, and a lot of patients — more than 23,000 pediatric visits in 2011 at Unity’s Upper Cardozo Health Center— so providing extra, focused education is key to calling attention to a pressing medical issue.”
The autism screening program at Upper Cardozo has gone so well that Anthony and Minier believe it could be a model for instituting screening programs in other primary care clinics across the Unity Health Care network and, possibly, more broadly to other settings that treat a disadvantaged, low-literacy population.
“We have learned a lot. The program is novel, given the use of family navigators with what we call lived experience, our outreach to the community, and the training of physicians and the health care staff,” says Anthony. “It could definitely serve as a template to help institute much needed screening programs in primary care clinics.”
“This is just a great example of community-based research,” says Minier. “Such a partnership between researchers and community providers can be really beneficial for everyone involved, but most importantly for the patients, their families, and community they live in.”
By Renee Twombly, GUMC Communications