Parent Concerns and Early Detection of Autism Spectrum Disorder

Background: Early intervention significantly improves later outcomes of children with autism spectrum disorder (ASD) (Green et al., 2013). Parent-reported concerns about children prompt pediatricians to screen for ASD (Dosreis, Weiner, Johnson, & Newschaffer, 2006). However, oftentimes, clinicians respond to parent concerns with a watch-and-see stance (Landa, 2007). This may be particularly true of parents of high-risk siblings, for whom there is a concern that they will overreport symptoms due to overestimating the recurrence risk of ASD (Whitelaw, Flett, & Amor, 2007).

Objectives: This study compared parent concerns of high (HR) versus low-risk (LR) siblings and examined the association between parent concerns and standardized clinician ratings of ASD symptoms and language development.

Methods: Participants were enrolled in a longitudinal study tracking the emergence of ASD symptoms in HR siblings. The final sample consisted of 21 LR infants, 18 HR infants, and their mothers. The presence or absence of ASD in older siblings was determined via the ADOS-2 (Lord et. al, 2012) for HR older siblings and the Social Communication Questionnaire (Rutter, Bailey, & Lord, 2003) for LR older siblings. Infants were assessed at  12-, 15-, 18-, and 24-months-of-age. The Parent Concerns Questionnaire (PCQ; Ozonoff et al., 2010) was used to classify concerns into two categories: PCQ-Total (speech/language/communication, social, stereotyped behaviors, motor, medical/regulatory, behavior/temperament, general developmental, and unspecified ASD) and PCQ-ASD (speech/language/communication, social, stereotyped behaviors, and unspecified ASD; Ozonoff et al., 2010). Infant ASD symptoms were directly assessed at 12-, 15-, 18-, and 24-months using the Autism Observation Scale for Infants (AOSI; Bryson, Zwaigenbaum, McDermott, Rombough, & Brian, 2008). Language development was directly assessed using the Bayley Scales of Infant Development, Third Edition at 12-, 15-, and 24-months (Bayley-III; Bayley, 2006).

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Results:   Separate one-way ANOVAs revealed that, compared to LR parents, HR parents (1) reported significantly more PCQ-Total concerns at 12, 15, 18, and 24 months and (2) reported significantly more PCQ-ASD concerns at 12, 15, and 24 months (see Table 1). To examine potential associations between parent (PCQ-ASD) and clinician reports (AOSI), a pairwise correlation was conducted at each age. The findings revealed that parents and clinicians observed similar ASD-related symptoms at 12 (r(26)=0.64, p<.05) and 15 months (r(33)=0.560, p<.01). Lastly, we analyzed language concerns by conducting a one-way ANOVA between PCQ-Language and Bayley-III language scores at each age. Parents who reported a language concern had infants with significantly lower Bayley-III language scores at 12, 15, and 24 months (see Table 2).

Conclusions: The findings in this study highlight that HR parents report increased concern about their infant’s development beginning at 12 months, especially with regard to symptoms relevant to ASD. It should be noted, however, that greater parent ASD concerns were associated with higher scores on the AOSI.  Furthermore, parents who report concerns about delayed language development, have infants who score lower on a standardized measure of language development beginning at 12 months of age. Thus, these findings indicate convergent validity, suggesting that parent concerns regarding ASD symptoms and language development are credible and warrant referral for further developmental evaluation.