The influence of race on parental beliefs and concerns during an autism diagnosis: A mixed-method analysis

Abstract

The purpose of this mixed-method study was to examine racial differences in parental beliefs and concern about autism spectrum disorder (ASD) versus clinical judgment. The sample included 489 children with ASD undergoing their first ASD evaluation. Parent belief that their child had ASD was highest among parents of White children. White children whose parents believed the child had ASD had lower ASD severity. Parents of Black/African American and Hispanic children were more likely to report communication concerns than parents of White children. Parental concern about social communication was related to higher ASD severity for Hispanic children. Implications for diagnostic processes are discussed. Lay abstract The goal of this study was to examine if there were differences between races in parental concern and belief about autism spectrum disorder (ASD) and the perspectives of clinicians. We studied 489 children with ASD who were having their first evaluation at an ASD clinic. Parents of White children most often believed that their child had ASD. However, White children whose parents believed the child had ASD were less severe in their symptoms. Parents of Black/African American or Hispanic children were more likely to have concerns about communication than parents of White children. In Hispanic families, parental concern about social communication was related to more severe symptoms in children. We discuss the implications of our findings for diagnosis.

Racial and ethnic disparities in the co‐occurrence of intellectual disability and autism: Impact of incorporating measures of adaptive functioning

“…Cultural expectations of child behavior and stigma surrounding developmental disabilities may also contribute to delayed identification of autism in certain populations ( Fisher et al, 2023 ; Pham & Charles, 2023 ; Zuckerman et al, 2018 ). Studies of parent reports of autism symptoms have found Black parents to be less likely than White parents to report concerns about their children’s social skills or restricted and repetitive behaviors and interests ( Azad et al, 2022 ; Donohue et al, 2019 ), even after controlling for autism severity ( Donohue et al, 2019 ), and may place more emphasis on behavioral concerns ( Mandell et al, 2007 ). Persistent racial and ethnic disparities in the prevalence of autism with co-occurring ID point to the need for increased access to culturally appropriate autism diagnostic and treatment services ( Dababnah et al, 2018 ) and improved outreach to provide parents the resources to recognize symptoms of ASD ( Čolić et al, 2022 ; Fisher et al, 2023 ).…”

Access to Part C, Early Intervention for children younger than 4 years evaluated for autism spectrum disorder

“…Similarly, research has shown that while Latinx mothers will report general developmental delays, they are less likely than White mothers to report autism-specific concerns (Angell et al, 2018). Other research demonstrated that White caregivers are more likely to believe their child had autism during the evaluation process when compared to Black or Latinx caregivers (Azad et al, 2022).…”

Applying a public health approach to autism research: A framework for action

“…Factors related to caregiver and provider awareness of early signs of autism (Azad et al, 2021; DeVilbiss & Lee, 2014), caregiver access to diagnostic and early intervention services (Stahmer et al, 2019)…”