Autism is simply not discussed enough in the African-American community.
It could soon become a serious health challenge among minorities if more is not done to address it, experts say.
“Less discussion about autism among African-Americans, or between African-Americans and health care providers, has led to misdiagnosis, a lack of treatment and a lack of services,” noted Martell Teasley, an associate professor in Florida State’s College of Social Work and one of the leading researchers of autism’s impact on minorities.
Recent studies have shown that signs of autism, a developmental disorder that appears in the first three years of life and affects the brain’s normal development of social and communication skills, can become apparent as early as 6 to 12 months of age.
Although rates of diagnosis for autism occur at the same rates in all racial groups, diagnosis for minority children often occurs later than in white children, delaying essential intervention and treatment.
“On average, children are diagnosed with autism at 4 or 5 years of age, and children in the African-American community are typically diagnosed even much later than that,” said Amy Daniels, Ph.D, assistant director of public health research for Autism Speaks, a leading autism advocacy organization, which has raised more than $195 million in research funds since 1995.
Fortunately, an increasing level of awareness is being raised by African-American celebrities who have children with autism.
One of them, actress Tisha Campbell-Martin, visited Indianapolis this week for Indiana Black Expo’s Corporate Luncheon. Her son, Xen, was diagnosed with autism at 18-months. Like most parents, Campbell-Martin was caught off guard by the diagnosis and was at first in denial.
“I kept screaming and screaming and screaming,” she said. “I kept asking why? Why him? Why us?”
Turning pain into action, Campbell-Martin joined the fight to raise awareness about autism, working with other prominent individuals to secure passage of the 2011 Combating Autism Reauthorization Act, which provided $1 billion for research and treatment.
Earlier this year she released the children’s book My Brother Doesn’t Want to Play, which describes how a boy copes with the reality of his older brother receiving more attention from their parents due to autism.
Other celebrities in the African-American community who have children with autism include singer Toni Braxton, actress Holly Robinson-Peete and her husband Rodney and vocalist Shawn Stockman of the R&B group Boyz II Men.
Braxton said she knew something was different about her younger son, Diezel, when he was 9 months old. He wasn’t developing like his older brother.
Early diagnosis, she said, made a major difference in Diezel’s quality of life.
“We have him in occupational therapy, speech therapy, and he’s in mainstream public school,” said Braxton, who is now a global ambassador for Autism Speaks. “He does have his special education therapies, but we are very, very lucky.”
In an emotional interview with CNN, Stockman discussed the moment his son Micah was diagnosed with autism, although he began developing speech and behavioral abilities sooner than his twin brother Ty.
“No one would ever think that something like autism could ever happen to their child,” Stockman said. “All you want for your child is for them to grow up and develop a life of their own, and to know that this may or may not happen for my son is hurtful.”
According to a report released last month by the Centers for Disease Control and Prevention (CDC), 1-in-50 school children has autism, a sharp jump from the 1-in-88 ratio released in 2012.
That same report shows that autism has become the fastest-growing serious developmental disorder in the United States. In 2008, for example, 1-in-88 children was diagnosed with autism by a doctor or other medical professional, a 78 percent increase over 2002. For boys, the ratio was 1-in-54.
Along with earlier diagnosis, Teasley noted that another way to address autism is by increasing the affordability and availability of options such as brain scans that can provide appropriate, timely diagnosis of autism.
“Not every child has access to this kind of medical evaluation, particularly those who are indigent and don’t have health care funding,” said Teasley.
Stockman has also noticed that affordability is a serious obstacle for many families as they seek the appropriate treatment for their children. That is why celebrities such as Stockman and Robinson-Peete have launched non-profit organizations like Micah’s voice and the HollyRod Foundation, respectively, to raise funds to help families with the expensive day-to-day costs of caring for and educating a child with autism.
“We have learned through our journey just how fortunate we were, having money,” Stockman said. “There’s no way a normal couple or a single mom can afford this.”
Robinson-Peete, whose 15-year-old son RJ was diagnosed at age 3, has been spearheading efforts to encourage government officials to pass laws that prohibit insurance companies from refusing to pay for treatment needed by those with autism.
“Our kids shouldn’t be out of luck simply because they have autism and not diabetes or cancer,” she said.
