The Importance of Talking About Autism with Our Black and Latino Youth

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Photo courtesy of psychcentral.com

Autism spectrum disorder (ASD) affects people of all races, ethnicities, genders, ages, and socio-economic backgrounds. It does not discriminate, and it does not reserve its impact for any specific community. 

It is estimated that 1 in 54 children in the United States is diagnosed with autism, and that statistic spans across all ethnic and socioeconomic groups. But (and it’s a big but) while ASD might occur in all communities, it is not diagnosed equally across all backgrounds and ethnicities. In fact, a 2002 study published in the Journal of the American Academy of Child & Adolescent Psychiatry found that autism is diagnosed much later in a child’s life for Black and Latino children if it is diagnosed at all. 

As with many medical conditions and disabilities, early diagnosis and prompt intervention are key to ensuring an individual with autism lives a full, functional, happy, and healthy life, which is why the fact that minority populations are suffering disproportionately in terms of prompt diagnosis and medical attention is a huge problem with a potentially devastating and lasting impact on the Black and Latino communities. 

What Is Autism Spectrum Disorder?

Autism is a lifelong developmental disorder that typically appears during early childhood and impacts a person’s ability to communicate, behave, and interact with others. It is not a disease but rather a “broad range of conditions characterized by challenges with social skills, repetitive behaviors, speech, and nonverbal communication.” 

Because autism is not a single illness but a spectrum of conditions, no two cases of autism are exactly alike. Each person with autism has their own unique set of disabilities and distinct strengths. 

The types of challenges that people with autism experience can range from highly skilled to severely disabled. Disabilities include trouble communicating, repetitive behaviors, difficulty with non-verbal communication such as eye contact, sensory issues, and more.

Autism affects approximately 1 in 54 children in the U.S., according to the CDC. And according to the 2016 data, autism is far more prevalent among boys, with boys four times more likely to be diagnosed with autism than girls. 

There is no one known cause of autism, though experts believe that it is due to a combination of genetic and non-genetic, or environmental, influences. These potential influences might increase the risk of developing autism, but they are not the single cause. 

Because autism is not a disease but a spectrum disorder with a wide range of symptoms and varying severity, there isn’t a one-size-fits-all treatment or cure for children with autism. However, what remains consistent is that early intervention is key. The earlier that autism is diagnosed, the sooner families can begin their treatment plan, improving learning, communication, social skills, and underlying brain development. Interventions such as speech and occupational therapy and applied behavior analysis can lead to positive outcomes later in life for people with autism. 

That’s precisely where the biggest concerns lie for minority communities — if early detection is crucial and applied interventions at a young age are essential to help support development in people with autism, it seems that delayed detection can cause lasting and potentially irreversible damage. Sadly, research shows that Black and Latino children are much more likely to be diagnosed later and less often. 

Autism and the Black and Latino Communities

One interesting fact about autism is that symptoms can be recognized at a very early age, and autism can be reliably diagnosed as early as age two. Developmental regression, which can be described as a loss of language or social skills, typically occurs between ages one and three in children who will go on to be diagnosed with autism. While autism can be diagnosed as early as two, most kids will be diagnosed later in their childhood. And beyond that, significant disparities exist in the early detection, and therefore the treatment of autism.

A study published in the Journal of the American Academy of Child & Adolescent Psychiatry found that, on average, white children received the autism diagnosis at 6.3 years of age, compared with 7.9 years for black children.

In 2007, another research by a team at the Center for Autism and Developmental Disabilities Research and Epidemiology at the University of Pennsylvania found that “African-American children were 5.1 times more likely to be misdiagnosed with conduct disorders before being diagnosed with ASD.” In other words, Black children were often told their autism was not a medical diagnosis but rather poor behavior. 

Process that for a moment.

A 2019 study from Georgia State University found that compared to White parents with 18- to 40-month-old toddlers who screened positive for autism, “Black parents reported significantly fewer autism concerns and fewer social and restricted and repetitive behavior concerns.” The study, published in the medical journal Autism, continued to say that “lower reporting of autism concerns by Black parents may impact providers’ abilities to identify children who need further screening or evaluation.” 

“There are very likely parent aspects of this and very likely clinician aspects of this,” explains Meghan Rose Donohue, a lead researcher on the study. 

There are many potential reasons why some families, particularly minority families, may experience delayed diagnoses of autism or why their children may go undiagnosed entirely. Some may face obstacles in terms of healthcare access. Some families may be unable to accommodate the prohibitive costs of treatment. Some families may not be educated on the symptoms of autism and may not know what signs to look for in terms of developmental delays. 

Families may also be unaware of how important it is to receive an early diagnosis and prompt intervention, or they may be hesitant to get their children evaluated due to stigmas around autism in their communities. All of these reasons are why it is so essential that doctors and early childhood specialists communicate effectively with parents, and especially with minority families.

And we would all be remiss to ignore the cultural factors at play here. Just ask Catina Burkett, a social worker from South Carolina who wasn’t diagnosed as being on the autism spectrum until age 46. 

In a piece for Spectrum News, she explained her experiences as a Black woman with autism. “When I am inflexible, I am sometimes called unfriendly, insubordinate, lazy, aggressive, or uncontrollable. When I need to process a situation before I respond to it, some describe my quietness as a ticking bomb that may go off at any time,” she said. “Within the black community too, many people have tried to hold me to their idea of how I should behave as a black woman.” 

The fact that African-American and Latino children are diagnosed with autism at older ages means they have less opportunity for effective treatment. 

Bridging the Gap for Minority Children with Autism

There is much that needs to be rectified in terms of how Black and Hispanic children are diagnosed (or not) with autism and how they can access treatment at an early age. There’s no doubt more needs to be done on all fronts to make sure that minority children with autism are diagnosed promptly, given proper and thorough evaluations, and appropriate intervention as early as possible. That includes ensuring that Black and Latino parents know what symptoms and signs to look for, know where to go for professional diagnosis and intervention, and have access to the treatment and funding they need to provide their children with the best possible care.

Dr. Walter Zahorodny, an associate professor at Rutgers New Jersey Medical School and director of the New Jersey Autism Study, suggests that all children from toddlers to school-age children should be screened for Autism in order to boost diagnosis rates. He also suggests better educating pediatricians about employing creative strategies to overcome communication barriers with parents. 

It seems there also needs to be a cultural shift in terms of how families in minority communities are impacted by autism. As a society, we need to not only acknowledge but also address the increased obstacles these families need to overcome to receive an accurate diagnosis and the appropriate treatment that follows. 

A 2014 study on California’s investment for ASD (Autism Spectrum Disorder) treatment found significant spending differences based on race and ethnicity. “Compared to whites aged 3 to 17, average per-person spending was close to $2,000 per person lower for African Americans and Hispanics, with the least spending on African Americans,” the study found. 

And those results are not unique to California. 

Everyone needs to recognize that while autism affects every demographic and every ethnic group, the impact felt within each community is far from equal. The disparities exist in both diagnosis and intervention, and the sooner those inequities can be addressed, the better.