Reliability of parent recall of symptom onset and timing in autism spectrum disorder

Abstract

Past events are often reported as occurring more recently than they actually took place, an error called forward telescoping. This study examined whether forward telescoping was evident in parent reports of ASD symptom emergence and onset classification. Parents were interviewed when their child was 2–3 years old (Time 1) and approximately 6 years old (Time 2). Significant forward telescoping was found in both age of social regression and age when language milestones were achieved, but not age of language regression. The correspondence between Time 1 and Time 2 onset report was low (kappa=.38). Approximately one-quarter of the sample changed onset categories, most often due to parents not recalling a regression at Time 2 that they had reported at Time 1. These results challenge the use of retrospective methods in determining onset patterns.

Onset patterns in autism: Variation across informants, methods, and timing

“…Agreement was markedly lower when ratings were retrospective or categorical or both. This suggests that the discrepancies previously identified between parent report of regression and other indices [Ozonoff et al, ] are due to multiple factors, both the way the question is asked (categorical vs. dimensional) and when it is asked (concurrently or in retrospect). Similarly, studies of other disorders have converged on the conclusion that reports of psychopathology are much more likely when measured prospectively than retrospectively [Moffitt et al, ].…”

“…Multiple studies have documented the ways in which recall problems and other biases can influence parent report. For example, several studies have demonstrated changes in recall over time, with parents less likely to report regression and more likely to report early delays as their children grow older (Hus et al, 2011; Lord et al, 2004; Ozonoff et al, in press). In a study that compared classification of onset based on objective coding of family movies to onset type as recalled by parents (Ozonoff et al, 2011), less than half of children whose home video displayed clear evidence of a major decline in social-communication behavior were reported to have had a regression by parents.…”

Characterizing the phenotypic effect of Xq28 duplication size in MECP2 duplication syndrome

“…For example, temporary loss of ambulation because of an acute seizure or decreased attentiveness and discomfort from severe constipation could easily bias clinical assessments for the day. Retrospective parental reporting of a patient's functioning is thus required to fill in the gaps; however, the long intervals of reporting common to the design of natural history studies to minimally inconvenience families creates significant potential for recall bias . Future efforts employing modern technologies for remote observational data collection and parental reporting through ecological momentary assessment strategies could permit more frequent and timely assessments of patients in their home environment; thus, helping to minimize the burden of travel while more fully ascertaining the spectrum of severity in neurodevelopmental disorders such as MDS.…”

Regression in autism spectrum disorder: A critical overview of retrospective findings and recommendations for future research

“…Regarding reports of symptom onset, parents of older children seem to report later ages of regression onset (Barger et al, 2013;Lord et al, 2004) and Tuchman and Rapin (1997) found that parents of younger children are more likely to report regression compared to parents of older children. In a recent prospective longitudinal study by Ozonoff, Li, Deprey, Hanzel, & Iosif (2018) change in onset classification was associated with parents not recalling a regression at the second visit that they had reported when interviewed earlier at the first visit. In a study by Jones et al (2015) it was also found that timing of consecutive interview questions impacts responses of caregivers, namely, when information on history of symptoms was asked first, less severe past and current behavior was reported compared to caregivers reporting current and history of symptoms together.…”