By Theodore Jordan
UMass Medical School autism advocate Elaine Gabovitch, MPA, is creating a series of radio and television shows on the importance of developmental monitoring to be broadcast across the state next year in an effort to reach families of young children. The programs will emphasize equal access for those from culturally and linguistically diverse backgrounds.
A 2011 study in Pediatrics reported the average age of autism diagnosis for Massachusetts children enrolled in the state’s Early Intervention program to be 25.6 months (the national average is 4 years), however, it also indicated there are subpopulations of children with autism who may not receive timely screening and evaluation. These include children whose families do not speak English as their primary language, and whose mothers are foreign-born or are younger than 24 years old. Studies conducted in 2014 and 2015 by Massachusetts Act Early reported that pediatric providers and diagnostic specialists believe referral delays may result from parents’ unawareness of the importance of tracking child development for signs of autism and other disorders, particularly if families are from racially, culturally, linguistically, economically and regionally diverse communities.
“We need to expand understanding of developmental milestones and screening, and to do that successfully we must both communicate with parents in culturally accessible ways and reach them where they are already receiving information,” said Gabovitch, family faculty in the Leadership Education in Neurodevelopmental Disabilities (LEND) program at UMass Medical School’s ShriverCenter and an instructor in the Department of Family Medicine and Community Health. Gabovitch also is the Centers for Disease Control and Prevention’s (CDC) “Learn the Signs. Act Early.” Ambassador to Massachusetts, as well as State Team Leader for the Massachusetts Act Early Program.
Several culturally diverse parent focus groups from an ongoing Shriver Center study have confirmed this need and pointed to cultural barriers, such as parents not understanding the necessity of acting early when there are developmental concerns and fearing family and community stigma because of a child’s disability. They reported receiving most of their information from radio, television and social media, and asked for information in their own languages.
Funded by a grant from the Association of Maternal and Child Health Programs (AMCHP), Gabovitch is working with the Massachusetts Act Early steering committee and members of multicultural communities to develop seven cable access television shows and three radio programs to air in the spring of 2017. The shows will be broadcast on Boston Neighborhood Network TV and the radio networks of Voices of Cambodian Children, No Small Victories Radio, and IHeartRadio, among others. Once broadcast, the shows will be posted to YouTube and the websites for Massachusetts Act Early and the CDC.
Each broadcast will include a racially diverse panel of pediatricians, support providers and parents, each sharing their real experiences with children on the autism spectrum. Six bilingual TV hosts are being recruited to broaden the program's reach across Massachusetts. “Learn the Signs. Act Early” materials will be translated into seven different languages and be available for download.
Gabovitch and her team are confident that this program will help Massachusetts parents of all backgrounds feel more comfortable when meeting with pediatricians and be able to make more informed decisions when taking their children to be checked for developmental delays.
Gabovitch has been a longtime proponent of considering cultural differences when discussing and screening for developmental delays. In 2012, she developed the Considering Culture in Autism Screening guide and kit with AMCHP funding and the Considering Culture in Autism Screening curriculum with a grant from the Deborah Munroe Noonan Memorial Research Fund.