There are unique experiences for Black families of children with autism. Autism does not discriminate across race, ethnicity, culture or socio-economic status. Yet, there is racial discrimination regarding diagnosis, access to resources, treatment options and culturally competent care.
It is estimated that Autism Spectrum Disorder (ASD) affects 1 in 500 births per year. However, because of varying techniques for diagnosis and treatment, the disability remains the subject of debate. Growing evidence demonstrates that although rates of diagnosis for autism occur at the same rates in all racial groups, diagnosis in African-American children occurs later than in White children. As a result, African-American children may require longer and more intensive intervention.
Black children diagnosed at later time frame
The Association for Science in Autism Treatment (ASAT) studied this disparity and revealed that Black children with intellectual disabilities receive an autism diagnosis an average of six months later than comparable White children. Black parents, on average, made three times more visits to doctors to obtain an ASD diagnosis than their White counterparts.
These setbacks in diagnosing Black children usually translate into a delay in skill acquisition, reduced access to early intervention, and an increased risk of challenging behaviors.
Researchers believe that these delays in autism diagnosis may be a contributing factor in the high rate of intellectual disability among Black autistic children in the United States.
Black families early on are naturally concerned about the intellectual development of their children, specifically in language, social interaction and behavior. Among the unsettling findings from the study was an average three-year delay in diagnosis of Black children. They looked at 584 parents of Black children with autism. The majority of parents first noted concerns about their child’s development at about 23 months of age. Accordingly, they told a professional about six months later, but did not receive an autism diagnosis until their child was five years old.
Long wait times to see a professional
A second discovery was that more than one-third of the Black families reported long wait times to see a professional. Some 14 percent of these households made at least six visits to specialists before their child was diagnosed. Nearly one-third said that a lack of available professionals contributed to the diagnostic delay.
Among the barriers considered more critical than the timing of diagnosis is educating more Black families about the signs of ASD. This may be, in part, related to a lack of educational information and programs in the inner city. In effect, most Black families, the researchers found, had to learn about ASD by themselves. While the internet can be useful for accessing quick information, it can be a dangerous pathway when researching treatment options.
Black children and intellectual disabilities
Black parents reported that practitioners would assume that they did not have private insurance. Because of this, these parents may not be offered the benefits of available treatment options. While the diagnostic prevalence of autism is about the same across races, there is a disproportionality of Black children who have a diagnosis of autism and have an intellectual disability.
A study conducted in 2020 by the Centers for Disease Control and Prevention (CDC) found that 22 percent of White children with autism also have an intellectual disability, but among African-American children, the rate of intellectual disability in those with autism amounted to a much higher percentage.
“These delays are believed to play a significant role in an even more serious health disparity which involves the proportion of children with autism who are additionally affected by intellectual disability,” said Dr. John N. Constantino, director of the Intellectual and Developmental Disabilities Research Center at Washington University. Constantino made reference to a recommendation by the American Academy of Pediatrics which recommends developmental screenings for children at nine, 18 and 30 months–not the average of 65 months discovered in the ASAT study.
Addressing ‘structural drivers’
“These delays could mean these children are diagnosed far too late for early interventions and could contribute to high rates of intellectual disability,” Constantino said. He noted that the work to eliminate inequities in ASD diagnosis is “hard and complex,” but addressing “structural drivers” such as institutional racism and associated barriers to equitable care (i.e. timely access to diagnostic services) is critical to making any meaningful change.
A 2018 point-in-time survey conducted by the International Society for Autism Research concluded that 2.5 percent of American children had autism. Broken down by race, survey results found 2.79 percent of Black children suffered from the disability, compared with 2.57 percent of White children.
The survey was somewhat misleading, however, because only 80 Black families were contacted. When many of these Black families reached out for a correct diagnosis early on, their children were reportedly misdiagnosed with other conditions.
Also, the Black families reported less access to services, therefore they tended to be underrepresented in most studies of autism. Most often, the Black children were far more often than White children to be diagnosed with “intellectual disability,” “developmental delay,” “behavioral problems,” “speech disorders,” or attention deficit hyperactivity disorder (ADHD).
Clinicians rely on observing behavior
The bulk of autism diagnosis stems from a growing awareness of the condition and changes to the diagnostic criteria with the individual situation. There is no blood test, brain scan or any other objective test that can diagnose autism. Clinicians rely primarily on observations of a person’s behavior to diagnose the condition.
While ASD effectively showed up on the Diagnostic and Statistical Manual of Mental Disorders (DSM) in 1980, researchers have seen a steep increase in the condition since the early 1990s. Shortly after, the U.S. Department of Education would rule that a diagnosis of autism qualifies a child for special education services.
The most common criteria for diagnosing autism are related to certain “core” features presented in early childhood development. These are primarily related with social communication and interaction, as well as “restricted interests” or repetitive behaviors. For instance, CDC researchers will collect health and school records for 8-year-old children who reside in select communities.
Every 24 months, trained clinicians would scan the records for signs of autism features, such as social problems or repetitive behaviors. About 36 months ago, the CDC tracked just over 15,000 California 8-year-olds, of which 24 percent were White, 9 percent Black, 52 percent Latino and 14 percent Asian or Pacific Islander. They focused on 8-year-olds because most children are enrolled in school and have had routine health assessments by the age of 2. After that, the clinicians generally decide whether each child meets the criteria for autism–even if the child does not have a diagnosis–and then extrapolate the results to all children in a particular state or region. CDC researchers found that 3.9 percent of California 8-year-olds were identified with ASD.
Early awareness a key to productive future
Until the 1980s, many people with autism were institutionalized, thereby rendering them effectively “invisible.” Studies show that parents who are aware of autism’s presentation (e.g. living near someone with the condition) are more likely to seek a diagnosis for children than parents with no knowledge of the condition.
In 2006, the American Academy of Pediatrics recommended screening for all children for autism during routine pediatrician visits at 18 and 24 months.
The CDC stressed that a diagnosis of autism—by at least 8 years of age—can provide children with greater access to specialized services and special education than do diagnoses of other conditions.
The unfortunate delay in obtaining an autism diagnosis—particularly for Black children nationwide—is often the result of families not having a private health care plan or not being able to afford therapies, the latter which can exceed $40,000 annually.
“You would never allow a kid with cancer to experience these waits,” said Dr. Kristin Sohl with the American Academy of Pediatrics, “so early diagnosis can make a difference. Symptoms of some kids who begin their therapy by age 2 or 3 can be greatly reduced.”