For the First Time, More Children of Color Are Identified With Autism

The word autism rang in my ears. My child, Micah, was suspected to have autism spectrum disorder (ASD). I could not take it. But, as I sat in the feelings, the signs were there—walking on his toes, not responding to his name being called. Constantly flapping his arms and spinning, I thought it was his childhood angst. I later learned that it was stimming, a way autistic children self-soothe. As our journey started, I also noticed Micah was always the only Black child at our therapist appointments. It made me wonder if autism is less prevalent in our Black community. Current research is now showing this is not the case.

According to the Centers for Disease Control and Prevention's (CDC) most recent Autism and Developmental Disabilities Monitoring report, the prevalence of ASD among children of color has increased. The new report showed overall, 1 in every 36 8-year-old children has ASD, which is higher than the 2018 estimate of 1 in every 44. This rise is not limited to a single racial or ethnic group; rather, it can be found in all groups. What is perhaps the most interesting about this study is for the first time, the percentages of 8-year-old Asian or Pacific Islander (3.3%), Hispanic (3.2%), and Black (2.9%) children were higher than among White (2.4%) children.

This is a substantial change from earlier reporting periods. Researchers say this could be due to improved screening, awareness, and access among these communities, although they say it's hard to know the exact cause of the shift at this point.

Yet, diagnosis delays continue to affect communities of color. The average age of diagnosis remains between 4 and 7 years, with children from lower-income, ethnic/racial minority, and rural families experiencing a longer delay. Although the prevalence of ASD has not been observed to differ among racial and ethnic groups, studies have revealed that White children and those with a higher socioeconomic level are more likely to be discovered and diagnosed with ASD earlier than Black, Latinx, Asian, and low-income children.

The COVID-19 pandemic had a huge impact on early autism detection, which has disrupted progress in identifying ASD among 4-year-old children. Early evaluations and identification were more evident among children aged 4 years and younger until the onset of the pandemic in 2020. After that, sustained lower levels of ASD evaluations and identification were seen at a majority of sites. That was due to the disruptions in typical practices of evaluations and identification for health service providers and schools.

Parents of autistic children also have a perspective on this issue. Some parents believe that the increase in autism diagnoses among children of color is due to better access to healthcare and mental health resources in their communities. Historically, there has been a lack of understanding and awareness of autism within these communities, leading to many individuals going undiagnosed or misdiagnosed. Similar to other parents, I struggled to understand how autism impacted my child. However, in recent years, there has been a shift in awareness and efforts to improve access to diagnosis and treatment for people of color with autism. This has been driven by a number of factors, including increased advocacy, outreach efforts, and cultural competence training for healthcare providers. 

I acknowledge my privilege of coming from a middle-class background. I had access to quality insurance and doctors. Our son’s pediatrician was extremely proactive and recommended I start the process of early intervention (EI) once she noticed a delay in his development. My son was able to receive resources by the age of 18 months. That's much earlier than the average Black family. Also, my mother and father have 35+ years combined working with ASD and developmentally delayed adults. They have been such an asset throughout this process. Unfortunately, many families of color do not have access to resources that can be essential to early diagnosis and treatment.

I believe EI was the key to his progress. After his initial evaluation, Micah started receiving speech, occupational therapy (OT) and applied behavior analysis (ABA) at his daycare. Once he aged out of EI, he went to a special education preschool, where he continued to receive his services. Now, at the age of 5, he is in a specialized school district called District 75. They provide highly specialized instructional support for students with significant challenges. Though I love the fact Micah is at one of the top schools in my borough, it is not lost on me that living in a good school district gave him an advantage other Black children do not have. Micah’s public school evaluation was conducted within my school district. If he did not live in my neighborhood, I do not believe he would be receiving this high level of specialized care.

Despite these efforts, there is still much work to be done to ensure that people of color with autism receive the support and resources they need. Some challenges that remain include a lack of access to affordable healthcare, language barriers, and the stigma surrounding mental health in some communities. Additionally, there is a need for more research into the intersection of race, culture, and autism, as well as the development of culturally appropriate interventions and therapies. Overall, while progress has been made in addressing mental health in communities of color, there is still much work to be done to ensure that everyone has equal access to the care they need.