Timing of the Diagnosis of Autism in African American Children

Abstract

OBJECTIVES: African American (AA) children affected by autism spectrum disorder (ASD) experience delays in diagnosis and obstacles to service access, as well as a disproportionate burden of intellectual disability (ID) as documented in surveillance data recently published by the US Centers for Disease Control and Prevention. Our objective in this study was to analyze data from the largest-available repository of diagnostic and phenotypic information on AA children with ASD, and to explore the wide variation in outcome within the cohort as a function of sociodemographic risk and specific obstacles to service access for the purpose of informing a national approach to resolution of these disparities. METHODS: Parents of 584 AA children with autism consecutively enrolled in the Autism Genetic Resource Exchange across 4 US data collection sites completed event history calendar interviews of the diagnostic odysseys for their children with ASD. These data were examined in relation to developmental outcomes of the children with autism and their unaffected siblings. RESULTS: The average age of ASD diagnosis was 64.9 months (649.6), on average 42.3 months (645.1) after parents' first concerns about their children's development. The relationship between timing of diagnosis and ASD severity was complex, and ID comorbidity was not predicted in a straightforward manner by familial factors associated with cognitive variation in the general population. CONCLUSIONS: These findings document significant opportunity to expedite diagnosis, the need to further understand causes of ID comorbidity, and the necessity to identify effective approaches to the resolution of disparities in severity-of-outcome for AA children with autism. WHAT'S KNOWN ON THIS SUBJECT: African American (AA) children with autism experience racial disparities in timing of diagnosis and access to quality interventions. AA children experience twice the rate of comorbid intellectual disability and higher rates of misdiagnosis of autism compared with non-Hispanic white children. WHAT THIS STUDY ADDS: These data reveal a 3-year time lag between parental recognition of developmental delay and autism diagnosis among AAs, and that excess intellectual disability burden cannot be explained by ascertainment bias or by traditional familial predictors of cognitive outcome.

Affording autism an early brain development re-definition

“…And because age of detection and diagnosis is later still in low-income, minority, and rural populations, children with ASD in these sectors of the community may have worse outcomes than those of their middle-class/Caucasian peers (Daniels & Mandell, 2014) as a direct result of this healthcare disparity. The latest Centers for Disease Control and Prevention (CDC) ASD prevalence data support this hypothesis: by the time children with ASD are 8 years old, the burden of intellectual disability among African American children with ASD is 47%, or almost double the burden of intellectual disability in Caucasian children, which is 27%; for Hispanic children, the rate of intellectual disability is 36%, falling between these two extremes (Constantino et al, in press; Maenner et al, 2020).…”

Relationships Between Household Income and Functional Independent Behavior for Children With Autism

“…An estimated 1 in 59 children in the United States are diagnosed with autism spectrum disorders (ASD; Baio et al, 2018). Significant disparities in the ascertainment and timing of ASD diagnosis have been identified (Constantino et al, 2020;Daniels & Mandell, 2014;Dickerson et al, 2017;Durkin et al, 2010;Jo et al, 2015;Mandell et al, 2005). Disparities by income have been documented with an increased prevalence of ASD among families with higher household income (Dickerson et al, 2017;Durkin et al, 2010;Jo et al, 2015;Pulcini et al, 2017).…”

Racial, Ethnic, and Sociodemographic Disparities in Diagnosis of Children with Autism Spectrum Disorder

“…Health equity is defined as “the state in which everyone has the opportunity to attain full health potential, and no one is disadvantaged from achieving this potential because of social position or any other socially defined circumstance.” 11 Unfortunately, significant racial inequities exist in diagnosis and treatment of children with ASD. In a recent study, Constantino et al 12 found that the average age of diagnosis for Black children was over 5 years and over 3 years after parents' first concerns about their child's development. Although the study did not include a comparable sample of non-Latinx White children, this is consistent with research that has found delay in diagnosis to be more pronounced in children of color.…”