Autism in the Black community: Getting a diagnosis

Thanks to public awareness and outreach campaigns in underserved communities, the most recent CDC autism prevalence report shows that the prevalence of autism in the Black community is—for the first time—higher than in the non-Hispanic white community.  Despite this, research shows that Black children often get diagnosed later than white children; the average age of diagnosis for Black children is 5.4 years, compared to the national average of 4.9 years, with Black children being diagnosed over three years after their parents first express concerns about their child's development to their pediatrician. 

“There have been some studies that have shown that Black families are more likely to go on a diagnostic odyssey when seeking an autism diagnosis,” says Brian Boyd, William C. Friday distinguished professor at the University of North Carolina at Chapel Hill and member of the Autism Speaks Medical and Science Advisory Committee. “Children are misdiagnosed earlier on, and early parental concerns are often dismissed by pediatricians and other providers because they may not see those concerns as contributing to autism. So, Black children aren’t necessarily referred to early intervention services or followed up on when there are developmental concerns at the same rates as white families.”  

Victoria Handy, an autism advocate and Autism Speaks Champion of Change, has experienced these struggles firsthand. Growing up, Victoria often felt misunderstood and was relentlessly bullied for her differences, leading to mental health issues and struggles with addiction that profoundly impacted her life. After years of misdiagnoses, she was finally diagnosed with autism at age 17, opening the door to support groups and resources that helped her overcome her challenges. 

“I was getting misdiagnosed for years with everything from bipolar disorder to schizophrenia,” explains Victoria. “My mother was really concerned about me and tried to get me some help, but a lot of times she hit dead ends or I got a diagnosis that she didn’t think was right. A lot of the psychiatrists I went to did not test me properly for autism—they just assumed it had to be something else. It was an emotional rollercoaster to try to get an answer about what I really had.” 

Today, Victoria is a proud advocate for her autistic 9-year-old daughter Raine. She is also working to become a behavioral technician so she can support other autistic children. As a Champion of Change, Victoria is working to raise awareness of autism and improve access to supports and services in the Black community and other underrepresented communities.  

Overcoming barriers  

Systemic biases in healthcare and cultural misconceptions about who can and cannot be autistic contribute to delays in diagnosis for Black children. Historically, autism was thought to primarily affect white male children—a common misconception that may still influence healthcare providers today. 

Cultural differences may also play a role, as research shows that Black parents often bring to the table different developmental concerns than white parents. A study showed that compared to white parents, Black parents are more likely to report developmental concerns that are not core symptoms of ASD. For example, while white and Black families both express concerns related to communication difficulties (a core symptom of ASD), white families are more likely to bring up communication difficulties (another core symptom of ASD) while Black families are more likely to bring up more general developmental concerns like motor difficulties, sleeping and toileting. 

According to a CDC report, Black children are more likely to receive an autism diagnosis if they have intellectual disability (ID): 50.8% of Black autistic children have ID compared to 31.8% of white children. This suggests that Black children without ID and with more subtle autism presentation may be overlooked. 

A study showed that these racial differences in ID prevalence among autistic children could not be explained by factors like parent IQ, family income, parent education levels and gestational age at birth—all of which are known to be associated with cognitive outcomes in the general population.  

“None of those factors seem to explain the discrepancy we’re seeing among Black autistic children being more likely to have intellectual disability, so I think there’s some questions to be answered,” says Dr. Boyd. “Is the issue timing of identification—that they are being identified later and therefore not getting access to services as soon? Are they not getting the same intensity and amount of services? These issues are something that we still have to understand.” 

The importance of being an advocate 

To ensure the best outcomes for their children, Dr. Boyd recommends that Black families seek multiple opinions if necessary and consider self-referral to early intervention services. “If you aren’t hearing what you think you should be hearing from one pediatrician or provider, go to another one,” he says.  

When Victoria’s family was seeking out a diagnosis, they had to go to multiple providers before they found somebody who they trusted. “We were jumping around from provider to provider,” says Victoria. “It was so hard for my mom to find a trustworthy doctor who could give me a diagnosis. We didn’t have a lot of help or support, so my mom took it upon herself to do a lot of research on her own. She was really a champion for making sure that I was ok and that I got the help that I needed. Through her research, we were able to find a provider in another county who got me diagnosed.” 

The Autism Speaks Resource Guide can help families find providers nearby who are offering diagnostic services. 

For parents who are struggling to get a diagnosis for their child, self-referral for early intervention services is also an option. “If you see something that you think is of concern, you can also self-refer to the early intervention system in your state and they will follow up with screening or evaluation to see if your child would indeed qualify or benefit from early intervention services,” says Dr. Boyd. “In a lot of states, there is a sliding scale for lower income families.” 

By being proactive and informed, parents can help ensure their children receive timely and accurate diagnoses, granting them access to the essential services and interventions they need to reach their full potential. Continuing to raise awareness and challenge systemic biases will further pave the way for more equitable outcomes for all children.