Documentary by Ivan Allen College Faculty Explores Challenges of Autism in Communities of Color

Posted March 18, 2024

“Why does my child act that way or do that?”

A family’s autism journey often begins with these questions. The answer given can change a child’s future, so the race of the person asking it should not make a difference — but it does.

That is why two faculty members from Georgia Tech’s Ivan Allen College of Liberal Arts — Jennifer Singh and John Thornton — joined forces with Camille Proctor, founder of The Color of Autism Foundation, to create a documentary that tells the stories of six Black families raising autistic children.

Navigating Autism in Communities of Color, which premieres at Georgia Tech on Friday, March 22, follows the unique challenges Black families face along their autism journey.

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Jennifer Singh produced the film. She is an associate professor in the School of History and Sociology and has been researching autism for the last 20 years. Her groundbreaking 2016 book, Multiple Autisms: Spectrums of Advocacy and Genomic Science, explores the evolution and meanings of autism, both to the research community and to the people who live with it.

John Thornton, who directed the film, is an award-winning documentary filmmaker as well as the director of film and media production in Georgia Tech’s School of Literature, Media, and Communication.

“Structural inequalities shape the differences we see in autism diagnosis and access to services based on race and ethnicity,” said Singh. “People aren’t reaching their full potential. It’s an injustice, and that’s why we made the film.”

The Road to Diagnosis

For example, early intervention is critical for children on the autism spectrum. But for that to happen, they need to be diagnosed at an early age.

“The process doesn’t end at diagnosis. That’s when everything starts — referrals to special education, resources, and services that people need,” said Singh.

Singh said there is a longer delay for Black parents from the time they are first concerned about their children until they get a diagnosis. She added that parents’ reluctance to give their children medical labels, given the stigma associated with mental health in Black communities, plays some part in the delays.

Physicians who perceive autism as primarily a white, male condition also play a big part in delaying a diagnosis. This assumption can result in a “wait and see” approach, or much worse, a misdiagnosis with a conduct or behavioral disorder.

“Misdiagnosis impacts a child’s ability to stay in school or get the resources they need, because they’ve been labeled a ‘bad’ child,” said Thornton.

Dr. Bernadette Kilo, a pediatrician and certified autism spectrum disorder clinical specialist who was interviewed by the filmmakers, said clinicians more often misdiagnose children of color.

“A lot of the African American kids or brown kids I see [were previously] diagnosed with oppositional defiant disorder or behavioral conduct disorder,” said Kilo. “Unfortunately, a lot of clinicians are not reading what is up to date. A lot of the information they have about autism dates as far back as 1939 … which poses a huge challenge and only adds to the stigma and the misunderstanding of what autism is.”

Multiple Autisms

One of the biggest challenges in the medical system, Singh said, is that the national health data on autism is heavily skewed toward one segment of the population.

“So many of the tools we’ve created for diagnosis, therapies, and interventions are based on data from white, mostly male populations coming from families who have private insurance and make over $70,000 a year,” she said. “There are assumptions built into the outcomes they’re measuring and the recommendations they’re making.”

These assumptions affect the Black experience of autism and our understanding of it.

“The way we define autism and how we recognize the signs could be very different for girls, for people of color, or for people who don’t speak English,” said Singh.

“There Are No Services Where I Live”

In 2021, Singh published a map of autism services in Georgia that showed how most therapies referred for autism — behavioral, physical, occupational speech, and other supports — are clustered in the northern suburbs of Atlanta, far from the city center.

“Parents would consistently tell me, ‘There are no services where I live,’” said Singh. “Furthermore, the educational system is such a critical component to accessing therapies, but where you live and the school district you’re in are related to what resources are available to you.”

“Most of the services are in a particular part of the state, which makes it increasingly difficult and expensive to get there,” added Thornton.

The development of the autism services map project, as well as the documentary, was inspired by Singh’s ethnographic research on autism service inequities in Georgia. In 2018, she co-founded a working group “Break the Cycle of Autism Disparities,” a transdisciplinary collaborative group of researchers, clinicians, and therapists from multiple universities in Georgia, the Centers for Disease Control and Prevention (CDC), and the Marcus Autism Center. The group is dedicated to promoting equity in autism services, resources, and outcomes.   

“What Happens When They’re Six Feet Tall?”

Autism is a lifelong condition, and people on the autism spectrum often speak and behave in ways that fall outside social norms. Singh said parents of Black autistic children must consider the risks this could present to their safety when they are older.

“Some moms have lamented, ‘My kids are cute now, but what happens when they’re six feet tall?’ If you are pulled over by the police and you’re talking to yourself or not following directions, that can be extremely dangerous,” said Singh. “That’s the reality when you add being male, Black, and having a condition like autism that can present with communication challenges.”

“There is a fear from parents, that the world is not going to see them as autistic, but as having some sort of behavioral issue,” Thornton said. “And that could threaten their lives.”

Raising Awareness

Singh says she has seen some positive changes over the past few years. She pointed to the prevalence of autism, which has risen from 1 in 150 in 2000 to 1 in 36 in 2024 according to the CDC, as both an indicator and a source of rising awareness. The most recent CDC estimates show that Black and Hispanic children have the same prevalence as white children.

“Adults today who were diagnosed as children — it was a different story than it is today for young children who are getting diagnosed. There are a lot more resources and a lot more awareness,” she said.

“There’s also more acknowledgement that autism has been largely constructed as a white male condition and that the diagnostic tools and interventions for the most part are based on a particular population,” she added.

One Page in the Story

Singh and Thornton said it was impossible to get everything they wanted into the one-hour documentary, but they hope it will bring more people into the conversation.

“I wanted to raise awareness about autism. It happens in Black communities. This is their experience,” said Singh. “It’s just six families, but I hope it opens up a dialogue of the how Black families encounter autism diagnosis and services in a structurally unequal society.”

“The film is just one page in a book, adding to the story about how people are navigating this challenge,” said Thornton. “We want to get people in the room, to get them talking about it. We hope people want to learn more.”

The film is not yet available to the public, but you can sign up for the project’s newsletter for updates.