Age at Autism Spectrum Disorder (ASD) Diagnosis by Race, Ethnicity, and Primary Household Language Among Children with Special Health Care Needs, United States, 2009–2010

Abstract

We examined prevalence of diagnosed autism spectrum disorder (ASD) and age at diagnosis according to child’s race/ethnicity and primary household language. From the 2009–2010 National Survey of Children with Special Health Care Needs, we identified 2729 3–17-year-old US children whose parent reported a current ASD diagnosis. We compared ASD prevalence, mean diagnosis age, and percentage with later diagnoses (≥5 years) across racial/ethnic/primary household language groups: non-Hispanic-white, any language (NHW); non-Hispanic-black, any language (NHB); Hispanic-any-race, English (Hispanic-English); and Hispanic-any-race, other language (Hispanic-Other). We assessed findings by parent-reported ASD severity level and adjusted for family sociodemographics. ASD prevalence estimates were 15.3 (NHW), 10.4 (NHB), 14.1 (Hispanic-English), and 5.2 (Hispanic-Other) per 1000 children. Mean diagnosis age was comparable across racial/ethnic/language groups for 3–4-year-olds. For 5–17-year-olds, diagnosis age varied by race/ethnicity/language and also by ASD severity. In this group, NHW children with mild/moderate ASD had a significantly higher proportion (50.8 %) of later diagnoses than NHB (33.5 %) or Hispanic-Other children (18.0 %). However, NHW children with severe ASD had a comparable or lower (albeit non-significant) proportion (16.4 %) of later diagnoses than NHB (37.8 %), Hispanic-English (30.8 %), and Hispanic-Other children (12.0 %). While NHW children have comparable ASD prevalence and diagnosis age distributions as Hispanic-English children, they have both higher prevalence and proportion of later diagnoses than NHB and Hispanic-Other children. The diagnosis age findings were limited to mild/moderate cases only. Thus, the prevalence disparity might be primarily driven by under-representation (potentially under-identification) of older children with mild/moderate ASD in the two minority groups.

Are Non-intellectually Disabled Black Youth with ASD Less Impaired on Parent Report than Their White Peers?

“…However, it should be noted that there were no significant differences between White and Black parents in education, although White participants were significantly more likely to be recruited from the clinical than the research sample. Furthermore, at least one prior study that reported underdiagnosis of Black children without ID found no relationship between diagnosis rates and parental education (Jo et al 2015). …”

“…Prior studies have reported that Black children are under-represented in ASD diagnosis rates, with Black youth without intellectual disabilities at even greater risk of being under-diagnosed and misdiagnosed (Jo et al 2015), as their impairments may be less obvious or may be conceptualized as behavioral problems. Reduced access to specialty mental health services, clinician bias, and other factors may lead to more impaired Black children with ASD without intellectual disability receiving alternate diagnoses (e.g., conduct disorder, ADHD) and/or never being referred to ASD specialist services.…”

“…Black children with ASD are also more likely to initially be misdiagnosed, most often with adjustment disorder or conduct disorder (Mandell et al 2007, 2009). One recent study also reported lower diagnosis rates after age 5 of mild/moderate (as opposed to severe) ASD in Black children as compared to White children, suggesting that non-intellectually disabled Black youth are at particular risk of under-diagnosis of ASD (Jo et al 2015). Although clinician bias and reduced access to specialist care likely contribute significantly to these disparities, the role of ethnic differences in symptom manifestation and clinical presentation cannot be ruled out.…”

Access Barriers to Services by Immigrant Mothers of Children with Autism in Canada

“…Canadian born children are most commonly diagnosed between the ages of 39 and 55 months, depending on the region in Canada where these children reside (Ouellette-Kuntz et al 2009). The trend is particularly striking in the United States for autism diagnoses of mild/moderate levels of severity diagnosed who are more likely to be identified at significantly later ages for minority groups (Heejoo et al 2015). This delay in diagnosis has been attributed to a number of clinical, socio-demographic and geographic factors (Daniels and Mandell 2013).…”

Racial Disparities in a Sample of Inpatient Youth with ASD

“…Given that adaptive behavior scales are standardized by age, the latter finding may suggest failure to make age‐expected gains in this population as a whole. The finding that IQ and verbal ability explained more variance than race is interesting in light of prior work finding that Black children with ASD were more likely to have a comorbid diagnosis of an intellectual disability [Baio et al, ], and questions regarding whether this suggests the potential of missing mild or moderate cases of ASD in Black youths [Jo et al, ].…”