Lareka Killebrew, 40, of Glendale knew very little about autism when she gave birth to her son, Justice. But when he stopped talking at the age of 2, she immediately knew something was wrong. “He wasn’t talking, he was crying, holding his ears, twirling in circles, starring into space, screaming a lot, and would only let me, my mom, husband, and daughter hold him,” she said. “He was a different kid.” It took two years, an occupational, psychologist and speech doctor and two pediatricians to diagnose Justice, now 7, with spectrum autism, typically characterized by social deficits, communication difficulties, or repetitive behaviors and interests and in some cases, cognitive delays.
Knowing how much work it took to get her son diagnosed, Killebrew was on hand at a recent event to discuss the award of a $10 million-grant from the National Institutes of Health to fund a genetics study of African American children to be conducted by renowned autism scientist and researcher, Dr. Daniel Geschwind.
The research from Dr. Geshwind’s study at UCLA is intended to help moms like Killebrew have their children diagnosed early so that intervention against autism can begin promptly. “I think this grant would have helped my son,” said Killebrew. “I would have sought intervention immediately.” The event was coordinated by the Special Needs Network, an autism advocacy organization and included Los Angeles County Board of Supervisors Chairman Mark Ridley-Thomas, Assemblymember Holly Mitchell and the pre-school advocacy group, First 5 Los Angeles.
“Autism is nothing short of an epidemic. We must ask ourselves not just what can be done but what we must do,” said Chairman Ridley-Thomas. “We must focus on early intervention, we must focus on reducing disparity, we must focus on investing, support and doing more and more research.”
In particular, the grant will allow Dr. Geshwind, to study African American families who have a child diagnosed with autism. As part of the five year study, children with autism will be observed and their parents will be interviewed about their child’s developmental history. The Centers for Disease Control recently reported an increase in the rate of autism from 1 in 88 to 1 in 50 children— affecting more than one million children across the country. As a rule, African-American and Latino children are diagnosed two to four years later than their non-minority peers , and often they have more difficulty accessing essential diagnostic and intervention services.
“The goal is to recruit 750 families with two parents and a child with autism and find the genes among African Americans that lead to autism,” said Dr. Geshwind. “The study will be the first to identify the gene of African ancestry that will give will us power to detect a number of genes that increases the risk for autism.”
Dr. Gershwind’s hope is that in five or 10 years, by knowing all the genetics, children can screened early on and identify those that are at high risk and put them into early intervention.
“That would be my dream and goal of what I want to accomplish with this study- to change the trajectory of their life so instead of being destined to have autism we find them at age 3 or 6 months,” he said.