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When I think of autism, I think of a pernicious disorder that doesn’t discriminate. It doesn’t care if you’re white, Black, Asian or Hispanic. Autism hits all racial and ethnic groups the same — an indiscriminate disorder that impacts thousands of families each year. And the number of cases diagnosed each year is growing exponentially. In the 1970s and 1980s, about one of every 2,000 children were diagnosed with autism. Today, that number is about one in 59, according to the Center for Disease Control and Prevention.
Autism isn’t particularly picky in choosing who, where or when it strikes, but it appears healthcare professionals aren’t nearly as colorblind when it comes to who they choose to diagnose and treat.
According to the CDC, while many children are diagnosed with autism at around two years old, researchers have determined that African-American children may be diagnosed as much as 18 to 24 months later. The research shows that even when Black parents suspect a problem early on and take their child to a pediatrician, their concerns are far too often brushed aside; parents are cavalierly told things such as “their child will be fine,” or that he or she is just a “late bloomer.”
The harm caused by a late diagnosis cannot be overstated. Clinical research shows the first two years of a child’s life 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. In studies, early intervention has shown to ameliorate the effects of autism. However, not only are African American children diagnosed with autism later than their white peers, but they are also referred to specialists less often and are less likely to receive medical tests. And even when these children are seen by healthcare professionals, they are often misdiagnosed as having another condition, such as ADHD or a conduct disorder. These systemic biases manifest themselves in other agencies and systems of care as well.
All of which points to a larger problem: autism is mostly seen as a white disease. Nearly all genetic research on autism involves Caucasian children, and one is hard-pressed to even find studies that include African-American children. The lack of research leaves many parents at a loss when seeking treatment options and securing interventions that are culturally competent and appropriate to meet their child’s unique needs.
Many African American families hope a recently passed federal law will change things for the better for Black children with autism. The Autism CARES Act of 2019 provides 1.8 billion dollars in funding over five years for research, early detection and treatment programs at the Centers for Disease Control and Prevention, National Institutes of Health and Health Resources and Services Administration.
According to the Congressmen who authored the bill, the new law is designed to expand government programs to include individuals “who were-and are-often misdiagnosed, underdiagnosed and overlooked.” Funding is designed to provide additional programs for adults with autism and to help families who care for them.
There is nothing in the new law that specifically identifies African American or Latino children with autism, but clearly the stated purpose of the bill — to include individuals who have been overlooked — suggests that substantial funding should flow into Black communities.
Only time will tell, but the passage of the Autism CARES Act gives the nation an opportunity to have critical conversations about ending disparities in diagnosis and treatment of African American children on the spectrum. Acceptance and awareness are key, but there also needs to be more federal and local dollars directed to clinical research that’s specifically dedicated to African American children. There needs to be more access to healthcare, specialized tutors, therapy and training in the law enforcement community. And above all, there needs to be a greater awareness and sensitivity to African American children on the spectrum, and their families, because similar to other children, Black children with autism deserve to live the best lives possible.
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Areva Martin, Esq. is an award-winning civil rights attorney, talk show host, CNN contributor, founder of Special Needs Network and mother of a son on the spectrum.
