Understanding Racial Disparities in Autism

Delaying diagnosis and services for African American children with autism could be a result of systemic racism.

One in 31 children aged eight years old in the United States was diagnosed with autism spectrum disorder (ASD) in 2022. While screening for ASD has increased and the disparity gaps have narrowed over the years, African American (AA) parents are found, on average, to experience a three-year delay in diagnosis from when neurodivergence is first recognized.

In a study of 584 AA children, AA parents became aware of developmental delays around 23 months; however, it was not until six months after the observation that the concern was expressed to a healthcare professional. Once concerns were shared, an official ASD diagnosis was not received until after the age of five years.

Delays in services

Not only are there delays in identification, but racial inequities in access to services for ASD once diagnosed have also been identified. What might the reasons be behind these delays in parental reporting, diagnosis, and access to services?

Several systemic flaws are impacting the timely diagnosis of ASD in AA children and use of services. Factors that can lead to delays in parental reporting may include:

• Distrust of the primary care provider (PCP) and overall dissatisfaction with the healthcare system. This can be for a variety of reasons such as perceived discrimination, feeling judged, feeling unheard, disability stigma, and concern about familial and societal acceptance;
• A lack of diversity amongst neurodevelopmental pediatricians, as only 2% identify as AA (Broder-Fingert et al., 2020). At times, there can be a disconnect between AA families and providers of a different ethnicity due to providers’ lack of cultural competence and humility;
• Life stressors, such as poverty (which can affect insurance coverage) and lack of transportation;
  Not having specific information pertaining to developmental milestones and what delays may look like.

Factors that can cause a delay in diagnosis may include:

• Parental hesitancy to report to a health care professional
• PCPs that suggest a wait-and-see approach when a delay or delays are observed, as opposed to implementing preventive measures early on
• Refusal of PCP to provide a referral for early intervention services
• Waitlists to see specialists if a referral is obtained

Factors in AA communities that hinder enrollment and use of services may include more of the same issues as mentioned above: poor insurance coverage, lack of referrals to specialists, PCP wait-and-see approach, life stressors such as lack of transportation or needing to prioritize work commitments, and parental dissatisfaction and distrust of the healthcare system overall (Flores, 2005). AA families are more likely to live in medically underserved areas that lack ASD specialists (also due to issues of systemic racism in housing policies) and are more likely to depend on Medicaid for health insurance.

Medicaid is structured so that low rates of reimbursement are offered to providers, making expansion of services difficult for the clinics that serve low-income communities. These low reimbursement rates make it especially challenging to support and maintain a high-quality workforce.

Prevalence of dual diagnosis

Additionally, AA children are found to have a higher prevalence of a dual diagnosis of ASD and intellectual disability (ID), as 47 percent of AA children are found to have ASD and ID compared to 27 percent of white children. Could later diagnosis of ASD in AA children be a factor in this? Are some dual diagnoses erroneous?

Previous studies have also discovered that AA children had higher chances of also being diagnosed with an adjustment or conduct disorder than white children (Mandell et al., 2009). This becomes dangerous territory, as AA children with ID, learning disabilities, and/or behavioral disorders experience a school suspension rate two to three times higher than white students from elementary through high school, are expelled at a rate three and a half times higher than white students, and are at a higher risk of being truant, arrested, and becoming part of the pipeline to prison.

The pipeline to prison refers to the high rates of AA children entering the juvenile justice system for offenses that could have been handled in a different manner. Once these children re-enter traditional classrooms, statistics show that approximately 65% end up dropping out of school and face other discouraging obstacles in life.
Lack of workforce preparation and high unemployment rates are examples of such obstacles. The unemployment rate among individuals with disabilities was 10.1% in 2021. For AA individuals with disabilities, it was even higher at 15.1% (U.S. Bureau of Labor Statistics, n.d.).

To address this, several things need to happen.

• There should be continued efforts to recruit and retain ethnically diverse health professionals, as an ethnically and culturally diverse workforce can help impact how care is delivered as well as adherence to the plan of care.
• There needs to be more outreach efforts by health professionals within areas that are traditionally medically underserved and low-income:
  • Increased collaboration and engagement with Nurse Family Partnerships program, Early Head Start programs, and other local community health non-profits
  • Holding educational seminars about ASD and other developmental and intellectual disabilities
  • Following up with families when needed

Culture and language must be incorporated into developmental assessments. Are ASD screening tools culturally competent? Are screeners taking language practices within the home into consideration? They should!

Research on ASD must continue, especially as it pertains to the experiences of AA children and adults, as well as genetics.

Questions to consider: What are the trends in ASD presentation experienced? What are the similarities seen with other ethnicities, and what are the differences? Further research on long- term outcomes is also needed, especially in children who had late diagnosis and whose families fought their way to a diagnosis and supports through the education system.