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Missed Opportunities: Use of Early Services and Age of ASD Diagnosis Among African American Children
Early identification and accurate diagnosis of ASD are critical for tailoring autism-specific early intervention services, guiding parents, and accessing resources. On average, parents visit multiple professionals, wait a year for diagnosis, and report dissatisfaction with the overall process (Goin-Kochel, Mackintosh, & Myers, 2006; Wiggins, Baio, & Rice, 2006). Interpreting research on age of diagnosis is complicated by disparities based on race and SES in access to services. African American children, on average, receive diagnoses later than Caucasian children (Mandell et al., 2009).
Objectives:
The goal of this study was to determine early service use and its relationship to age of ASD diagnosis for African-American children.
Methods:
Fifty-three children (42 males and 11 females) with a confirmed ASD diagnosis and their primary caregivers participated in the current study. An additional 30 participants are expected before May 2014. Family variables and service history were obtained via the ACE-2 EHCI: Diagnostic Odyssey Instrument (Shattuck, Mandell, & Constantino, 2013). Child functioning was ascertained using the Differential Ability Scales, Second Edition and the Autism Diagnostic Observation Schedule, Second Edition.
Results:
The average age of first diagnosis was 5 years old (SD = 33.77 months). There was no correlation between autism severity or intellectual level and age of diagnosis. Eighty-one percent of children obtained services before diagnosis, at an average age of 3 years, 1 month (SD = 20.46 months); creating a gap of 22 months between accessing services and diagnosis. There was no significant difference in age of diagnosis between children with a history of services prior to diagnosis (M = 61.74 months, SD = 29.14) as compared to those who had never received services (M= 53.60 months, SD = 34.88; t(51) = 0.68, p = 0.27). Whether services were provided through public or private programs (F (3, 39) = .37, p = 0.78) (61% public, 23% private, 9% combined) and total number of services (F (2, 40) = 1.41, p = 0.26) were not related to age of diagnosis. Parent education (r = 0.33, p = 0.03) was related to number of services received, though neither education nor family income were associated with age of diagnosis. Of children receiving prior services, 59% received speech, 32% occupational therapy, 10% behavioral intervention, and 10% special education. Service type was unrelated to age of diagnosis with the exception of occupational therapy (t (41) = -0.83, p= 0.01). Children receiving OT received an earlier diagnosis (M = 56.74) than children without OT (M = 65.71).
Conclusions:
Despite recognition of the need for services, children experienced delays in diagnosis. Accurate diagnosis is needed to educate parents and professionals, ensure access to appropriate intensive services, and refer for additional medical work-up and sibling monitoring. While most participants received services, they did not receive early, intensive Autism-specific services. In this almost two year gap, children missed opportunities for maximizing outcomes (e.g., public education services). When concerned, pediatricians should immediately refer children (especially African Americans) for both services and diagnostic evaluation. Service providers should also be empowered to refer for evaluation.