It Takes a Village to Protect a Child With ASD

Spencer Platt/Getty Images
Spencer Platt/Getty Images

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.”

Signs in some children, however, are barely noticeable or are masked by other disabilities.


See the Signs

Symptoms of ASD appear as early as 6 months. Children can be screened at around their 1st birthday, and reliable diagnoses can be made as soon as the two-year mark. Treated early, children learn, communicate and socialize better, and many can attend mainstream kindergarten. So to learn the normal developmental milestones, parents should make sure that pediatricians are screening their babies and young children at every checkup and should know the signs, which include the following: 


* No big smiles or other warm, joyful expressions by 6 months of age or thereafter
* No back-and-forth sharing of sounds, smiles or other facial expressions by 9 months
* No babbling by 12 months
* No back-and-forth gestures such as pointing, showing, reaching or waving by 12 months
* No words by 16 months
* No meaningful, two-word phrases (not including imitating or repeating) by 24 months
* Any loss of speech, babbling or social skills at any age
* Avoiding eye contact (Go here to see what it’s like to try to make eye contact with an autistic child.)
* Preoccupation with objects

“Some children progressively show signs and symptoms over time,” says Gourdine. “Others develop normally for a period of time but at 15 to 30 months begin to regress.” (Go here for a comprehensive list.)


About half of children with autism elope for long enough that the parents fear for their safety; yet only half of families of children with autism receive professional advice about how to handle it. More than one-third of children with ASD who wander can’t consistently communicate their name, address or phone number. 

The Autism Wandering and Elopement Initiative, or AWAARE, offers a free Big Red Safety Toolkit (pdf), which includes a family-wandering emergency plan and other tools. 


In January Sen. Charles Schumer (D-N.Y.) proposed legislation called “Avonte’s Law” to provide voluntary tracking devices and support services for children with ASD. The Justice Department, which already provides grants for devices that track seniors with Alzheimer’s, immediately agreed to allow grant beneficiaries to include people with ASD, too.

Stand Up for a Child 

If you suspect that your child or a young person in your community may have ASD, don’t allow fears of stigma or labels to paralyze you. 


“A child needs someone who is willing to advocate for him or her in getting a diagnosis as quickly as possible,” says Gourdine.

Take (or share) this quiz, then have a pediatrician evaluate your child and, if appropriate, refer you to an autism specialist for an assessment (pdf). Check out actress Holly Robinson Peete’s autism-advocacy work and the books her family has written about autism in black children and families.


“Support groups are extremely important, not only for you but for resistant family members,” says Gourdine. “Your family is not the only one to have ambivalence about this diagnosis.”

On March 29 a group of young New York City professionals, led by Arielle Patrick, is holding a Spin for Safety and cocktail reception to raise money for emergency tool kits and resources for families with autistic children who are at risk of wandering off. Patrick planned the fundraiser after being touched by Avonte’s life. All monies raised go to Autism Speaks.


“I was extremely concerned when Avonte first went missing,” says Patrick. “You couldn’t escape it; there were signs everywhere, in the subway, the storefronts—it really consumed you.”

Hilary Beard is co-author of Promises Kept: Raising Black Boys to Succeed in School and in Life and Health First! The Black Woman’s Wellness Guide, which won a 2013 NAACP Image Award. Follow her on Twitter and Facebook.


Philadelphia-based writer Hilary Beard is co-author of Promises Kept: Raising Black Boys to Succeed in School and in Life and Health First! The Black Woman’s Wellness Guide, both of which have won an NAACP Image Award. Follow her on Twitter and Facebook