By Amy Landsman
Halethorpe mom Becky Brunelle already has her hands full taking care of her 3-year-old twin boys (they'll be 4 in August) who have autism while working a part-time job. Why would she volunteer to add one more item to her already packed to-do list?|
It's simple: she wants to help other families like hers and learn all she can about her sons' condition. So, her family is taking part in the second phase of the largest-ever national study to identify the genetic and environmental factors that may put children at risk for autism and other developmental disabilities. Understanding the risk factors that make a person more likely to develop those conditions, the theory goes, will help shed more light on potential causes.
Funded by the Centers for Disease Control and Prevention, the Study to Explore Early Development, or SEED, the first phase of which took place from 2008 through 2010, has been operating out of centers in six states: California, Colorado, Georgia, North Carolina, Pennsylvania, and here in Maryland, where the Johns Hopkins University Bloomberg School of Public Health and the Kennedy Krieger Institute are the chief collaborating agencies.
SEED is a “case-control study”—that is, it is looking at families of children diagnosed with an autism spectrum disorder alongside two types of comparison families: those with children who have a developmental disability other than autism, and those with “typically developing” children.
“That’s helpful,” explains Dr. Dani Fallin, director of the Johns Hopkins Center for Autism and Developmental Disabilities Epidemiology, home base for SEED in Maryland. “Because if we see something that tends to be over-representative in the case group, compared to the typically developing group, you want to know: is that specific to autism, or something that is a general problem with delays that could manifest in all kinds of ways, not just among autism?”
Enrollment in the second phase of SEED began this past spring, and researchers are still recruiting additional local families to participate, seeking about 140 families total from each of its three target groups. Families with children ages 2 to 5 who have a documented developmental disability, including autism, in Baltimore City and Anne Arundel, Baltimore, Carroll, Cecil, Harford, Howard, Montgomery, and Prince George’s counties, are eligible to enroll and may contact study organizers directly if interested. Because researchers are comparing genetics, the mothers of these children must be the child's biological mother for the family to participate.
Some families who meet certain criteria may receive a mailed invitation to participate in SEED from Kennedy Krieger or the state Department of Education. The state Department of Health and Mental Hygiene has also been inviting randomly selected families to serve in the “typical” control group. (SEED only learns families' names if they respond to their invitations.)
To thank families for participating in the study, organizers provide them with gift cards and cash payments. They plan to continue to recruit local families for the next several years.
SEED researchers ask participants a wide range of questions regarding just about every aspect of their lives: what the mom ate before and during pregnancy, where she lived, where she worked, where the dad lived and worked, and so on. They look at the mom’s obstetric records and at the child’s medical records from early infancy. They do not “pass judgment” on participants; there’s no “tsk-tsk” if a parent admits, for example, to ever having smoked or done drugs.
“I think the key to understanding these issues is to be as honest as possible about what did and didn’t happen,” emphasizes Fallin, noting that researchers will likely present early findings from SEED's first phase at the annual International Meeting for Autism Research in Spain in May. “We don’t know if any of these behaviors are a risk factor for autism. That’s what we’re trying to figure out. There’s really no reason to be afraid to share.”
Children enrolled in SEED also undergo play-based developmental evaluations at Kennedy Krieger, located in Baltimore. In addition, researchers draw blood samples from the mom, dad, and child for genetic testing. Although blood is preferable for testing, the researchers also take a saliva sample from each child, just in case he or she won’t tolerate a blood draw.
Thus far, Brunelle, the Halethorpe mom, says she’s filled out surveys about her sons, Alex and Aden, who attend the Early Childhood Learning Support program at Halethorpe Elementary School in the morning and the Kennedy Krieger Achievements Therapeutic Day Program in the afternoon, and also taken part in some phone interviews. “They’ve been very accommodating,” she says.
And, because it is involving thousands of families nationwide, researchers are optimistic SEED will provide a valuable pool of data for study. “Research really is about people,” says Michelle Landrum, outreach coordinator for the Early Autism Risk Longitudinal Investigation, another national research study involving local collaboration between Johns Hopkins and Kennedy Krieger, focused on mothers who have a child with an autism spectrum disorder and are pregnant again or may become pregnant. Without families willing to sign up for them, adds Landrum, whose 8-year-old son, Clark, has Asperger syndrome, even the best designed studies will languish. BC
If you are the parent of a preschooler with a diagnosed
developmental disability, including autism spectrum disorder, you may contact
the Johns Hopkins Center for Autism and Developmental Disabilities
Epidemiology, at?1-877-868-8014, or by email, at firstname.lastname@example.org, to see if your family
qualifies to participate in SEED.
© Baltimore’s Child Inc. March 2013