The researchers for the Early Autism Risk Longitudinal Investigation (EARLI) team aren’t trying to pry into people’s personal lives; they’re merely trying to help slow the fastest growing developmental disability in the world. EARLI, a four-member crew that works out of the Center for Autism and Developmental Disabilities Epidemiology (CADDE) at the Johns Hopkins Bloomberg School of Public Health in East Baltimore, is the most comprehensive effort to figure out what causes Autism Spectrum Disorder, which affects one out of every 110 children.
EARLI works with families before conception then follows them through a child’s birth and the early stages of a child’s development. “It’s a very comprehensive effort looking at genetics, environmental exposures clinical experts who are leaders in early diagnosis and detection,” says Michelle Landrum, outreach coordinator for the EARLI autism pregnancy study. “We’re hoping to find clues when we follow these families that may lead to a diagnosis down the line. Early intervention for these children leads to the best outcome.”
Research by EARLI is conducted in stages. After enrolling mothers, either pre-expecting or recently impregnated, EARLI then sends its researchers on two home visits to collect dust samples and conduct a home walkthrough, which records various tidbits such of brands of lotion, nail polish, skin cream and cleaning products. Hair, blood and urine samples are also collected from the mother and then later followed up with a collection of the placenta, breast milk and the baby’s urine and meconium after birth.
Since recording its first mother in 2009, EARLI has worked with 20 families, who are either currently pregnant or have had a baby, and are now working with 40 other families who are planning to conceive within the next few years. Programs such as EARLI are considered a sign of hope for families affected by autism, especially those in the African-American community.
“One of the biggest issues that African Americans face is the timing of the diagnosis and interventions,” says Areva Martin, nationally recognized autism advocacy expert and author of the book, The Everyday Advocate: Standing Up For Your Autistic Child, which releases later this month. “Statistics show that African-American children are diagnosed two to four years later than their White counterparts. Once diagnosed, intervention services start later and are more difficult to access. Because our kids get diagnosed late, the chances of positive outcomes are decreased.”
Delayed language, lack of eye contact and repetitive activities are a few of the early warning signs for autism. Without a known cure for the disorder, behavioral therapy is the best treatment, but such therapy can vary in time ranging from 10 to 40 hours a week. Due to the high number of single-parent homes in the African-American community, trying to work a full-time schedule and treat a child with autism can be especially trying for parents. Despite the task, Martin, also the mother of an autistic child, believes such difficulties can be overcome.
“This is not a journey you want to take alone and the best way to balance your job and raise a child with autism is you’ve got to get help,” she said. “You may not have a spouse, you may not have a partner but everybody has someone. Build a community.”
April is National Autism Awareness Month, for more information on autism and EARLI, visit www.earlistudy.org.
For more information on Areva Martin and her book, “The Everyday Advocate: Standing Up For Your Autistic Child,” visit www.arevamartin.com.
