The First Year Inventory: Comparing Parent Report and Clinical Observation in High and Low-Risk for ASD Infants At 12 Months

Background: Most screening instruments for ASD rely on parental report. Although parents have an optimal perspective from which to observe and engage with their infants across diverse contexts, parental report may also have limitations. Extant, albeit limited evidence, suggests that parents of 18-24-month old toddlers with ASD may under-report abnormalities in key social behaviors relevant to screening (Chawarska et al., 2007).  Given the current emphasis on early screening in infants at high risk for ASD due to genetic liability, evaluating congruency between parent report and clinical observation is critical.

Objectives: To investigate agreement on comparable items of the First Year Inventory (FYI; Reznick et al., 2007), a parent questionnaire designed to screen for ASD at 12 months, and the ADOS-Toddler (ADOS-T; Lord et al., in press), a standardized ASD diagnostic tool administered concurrently to 12-month olds at high and low risk for ASD.

Methods: 106 (high-risk=68, low-risk=38) infants were evaluated with the ADOS-T at 12 months by clinicians blind to their risk status. Parents completed the FYI prior to the ADOS-T assessment. Fourteen items tapping into comparable constructs were identified across the ADOS-T and the FYI.  Both instruments rate behaviors on a scale of 0 to 3; higher numbers reflect more atypical behaviors. ADOS-T and FYI scores were compared using paired samples t-tests with Bonferroni correction for multiple comparisons separately for HR and LR groups.

Results:  There were no significant differences in ratings between HR and LR groups. Regardless of the risk status, parents rated three speech and language-related items (amount of babbling, spontaneous vocalizations directed to others, and gestures) as more typical compared to the clinical assessment (p<.001). Conversely, an item capturing hand and finger mannerisms was rated as more atypical by parents (p<.001). Several discrepancies between parent rating and clinical assessment were observed only in the HR group. HR infants’ parents rated eye contact, response to name, and showing behaviors as more typical compared to expert clinicians. Interestingly, response to name, a well replicated ‘red flag’ for ASD (Nadig et al., 2007) was posed twice on the FYI in slightly different form. When the question was phrased globally (i.e., “Does your child answer to his name?”), parents rated the infant’s behavior as more typical than the clinician (p<.001); however, when the same question was presented in a multiple-choice format (“What do you typically have to do to get your baby to turn towards you?”), the parent and clinician ratings were less discrepant.

Conclusions: Discrepancies between clinician and parent ratings on speech items were common in both groups and likely reflect the effect of context on child’s behavior during direct assessment.  However, parents of HR infants rated their behaviors on key diagnostic features as more typical. Wording of questions appeared to affect the degree of discrepancy between expert clinician and parent report. These findings suggest a further need to examine sources of discrepancy between parental report and concurrent clinician rating of key diagnostic features as well as the impact of screening instruments’ design features on the accuracy of reporting.