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Sunday, July 12, 2015

Parental Experience of the Diagnostic Process

In The Politics of Autism, I explain that pediatricians often dismiss early parental concerns about possible autism and that  many diagnoses come relatively.

At Focus on Autism and Other Developmental Disabilities, Donald P. Oswald and colleagues have an article titled "Parental Report of the Diagnostic Process and Outcome: ASD Compared With Other Developmental Disabilities." The abstract:
Parents report that the process of getting an autism spectrum disorder (ASD) diagnosis is arduous, lengthy, and fraught with difficulties. This analysis of the Pathways survey data set examined the experiences of parents who said, at the time of the survey, that their child currently had ASD compared with parents who said, at the time of the survey, that their child currently had some other developmental disability. Despite substantially earlier parental concerns about their child’s development, the ASD group (n = 1,420) received their current diagnosis about 7 months later (M age at diagnosis = 62.8 months, SE = 1.62) on average, than did children in the group diagnosed with other developmental delay (n = 2,098, M age at diagnosis = 55.4 months, SE = 2.13). Parents in the “Current ASD” group were more likely to report that the health professional said nothing was wrong or that the child might “grow out of it,” emphasizing a common parental complaint. Continued efforts to improve parents’ experience of the diagnostic process are warranted.
From the article:
The fact that higher income families were more likely to have a child in the “Current ASD” group should not be considered evidence for prevalence differences based on socioeconomic status (SES); Kanner’s (1943) original hypothesis that autism was associated with parental intelligence (and education) has been dismissed based on abundant epidemiological data (beginning with Schain & Yannet, 1960, but demonstrated most conclusively in Schopler, Andrews, & Strupp, 1979). However, the finding does raise questions about differential access to adequate diagnostic assessment services, based on family income or parent education. Although this finding is somewhat peripheral to the primary questions of interest in the present study, it may serve notice that such differential access issues have not been eliminated.