Autism is rarely outside the media spotlight as our nation watches as experts try to find a cure and causes. According to the Centers for Disease Control and Prevention (CDC), one in 68 American children lives with autism daily, and for many of those children, daily life is a constant struggle.
Autism, or, more formally, autism-spectrum disorder, is a condition where an individual struggles to engage in two-way communication, especially in social situations. While the severity and precise symptoms of autism can vary (that is why it is referred to as a spectrum), problems understanding another person's intentions and emotions are a central feature. People with autism may also find it challenging to engage in small talk, or even to talk at all. Other symptoms of autism include a need for a particular routine, or a hyperfocus on a narrow group of interests, but the difficulty in social communication is often the most impairing.
There is no "cure" for autism, and the cause may come down to hundreds of interacting factors, but we do know it is critical for people with autism to get the earliest possible diagnosis and obtain access to appropriate educational, medical and therapeutic resources.
While autism is a challenge for many people and their families, it seems that African-American children and other children of color are among the worst-affected.
Too Late: Delay in Diagnosis
African-American children are just not getting a diagnosis of autism as quickly as their white peers. According to the CDC, while many children are diagnosed with autism at around 4 years old, researchers have determined that African-American children may be diagnosed as much as 18 to 24 months later.
One may think that this doesn't sound like much of a delay; however, it is a critical delay. The first two years are a crucial stage in brain development where children are learning many of their basic social and language skills, such as engaging in conversations and play.
It is well documented that African-American and Hispanic children with autism are referred to specialists less often and are less likely to receive medical tests than their white peers. Also, the research suggests that when African-American children do get a referral and present to healthcare professionals with symptoms of autism, they are often misdiagnosed as having another condition, such as ADHD or a conduct disorder, which is a condition diagnosed based on antisocial behavior.
Does Autism Look Different in African-American Children?
This is a controversial topic, and there have been only a few studies looking at autism in children of color. Is autism, a brain-based condition, different in African Americans? Or are the apparent differences a result of the children and families being exposed to different cultural, economic and social situations? No one really knows, but it could very well be a mixture of the two.
The limited research that is out there points to some key differences in what autism looks like in African-American children. One of the main findings is that "regressive" autism (characterized by the loss of social and language skills after having already developed them) is twice as common in African-American children than it is in their white peers.
One large study suggests that African-American children with autism are also likely to demonstrate challenging and aggressive behaviors.
Another study demonstrates that minority children with autism seem to have more severe problems with language and communication than their white peers. The authors wondered whether the more subtle signs of autism are being missed by parents.
The cause of these findings remains unknown and, like autism itself, may be attributable to a combination of genetic and environmental factors. The difficulty is that there has been little research on autism in African-American children, so findings like the ones I have mentioned are not often followed up on or investigated further.
We applaud scientists like Dr. Daniel Geschwind, a professor of psychiatry, neurology and genetics at UCLA, who has undertaken a five-year genetic study on African Americans and autism. Dr. Geschwind is currently recruiting for this study, and his research will fill a much-needed void in the scientific literature and hopefully provide answers to the complex questions regarding some of the findings that other evaluators have explored but have yet to provide definitive data or conclusions.
Too Little Research
Notwithstanding the UCLA study, most of the genetics research into autism has focused almost exclusively on Caucasian children. In fact, it is quite rare to find a study that has included African-American children. Research that is not inclusive of African-American children may demonstrate results that may not be applicable to African-American children. This dearth of research has an impact on diagnosis and services and fuels the service gap that many minority children face. If scientists do not have a clear understanding of the nuances that may impact children of color, it becomes increasingly difficult for them to prescribe culturally appropriate treatment.
As the incidence rate of autism continues to grow, institutions and scientists are missing an incredible opportunity to study a unique and distinct demographic of the autism community: children of color. Not only does this complicate any mission of advancing the science of autism overall, but it perpetuates health disparities for African-American children with autism.