It Takes a Village to Protect a Child With ASD

What we all need to know about autism spectrum disorders to prevent another Avonte Oquendo tragedy.

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The death of 14-year-old Avonte Oquendo this January brought attention to autism spectrum disorders among communities of color and the awareness of the need to protect autistic children from wanderingeloping or “bolting” from safe spaces.

One of few children of color whose search—when he went missing from school—prompted mainstream media attention, Avonte brought a brown face to ASD.

“In general, across socioeconomic status, black and brown kids tend to be diagnosed later than white kids,” says Baltimore-based pediatrician Michelle Gourdine, M.D., author of Reclaiming Our Health: A Guide to African American Wellness. “People of color tend to be less aware of the symptoms and often fear the consequences of our son becoming labeled.”

“Children in the African-American community are typically diagnosed even much later than the 4 to 5 years of age which is the average age of autism diagnosis in the United States,” says Amy Daniels, Ph.D., assistant director of public health research for the advocacy organization Autism Speaks.

African Americans are less likely to have health insurance and more likely to experience barriers to quality health care, such as poverty, unemployment and unconscious bias among health care providers. To combat this, the National Black Church Initiative hopes to increase awareness and lower the age of diagnosis.

Wearing the Right Label

ASD consists of a group of developmental disabilities that cause behavioral, communication and social challenges. Autism is just one along a continuum of disorders, which include Asperger’s syndromepervasive developmental disorder not otherwise specifiedRett syndrome and childhood disintegrative disorder. (Click here to watch a video from the perspective of an autistic child.)

Approximately one in 88 children is diagnosed with ASD, including one in 54 boys. Experts aren’t clear what causes ASD, whose most obvious signs emerge between ages 2 and 3, or why rates appear to be rising. Theories range from genetics to immune disorders that begin in the womb to having older parents to nutritional deficiencies to environmental toxins. And there is a vocal community that insists that childhood vaccines cause autism, which the scientific community refutes. (Visit the CDC’s site on autism and vaccines and learn more about the debate.)

Early diagnosis and care are particularly important for black children—especially black boys. 

“A boy in kindergarten or first grade exhibiting symptoms regarding social interactions is a setup for being labeled as maladaptive, a troublemaker or some other label,” says Gourdine. “When little black boys get labeled early on in the educational system as being maladaptive, that label tends to follow them through and sets them up for poor performance.”