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

While previous studies suggested that regressive forms of onset were not common in autism spectrum disorder (ASD), more recent investigations suggest that the rates are quite high and may be under-reported using certain methods. The current study undertook a systematic investigation of how rates of regression differed by measurement method. Infants with (n = 147) and without a family history of ASD (n = 83) were seen prospectively for up to 7 visits in the first three years of life. Reports of symptom onset were collected using four measures that systematically varied the informant (examiner vs. parent), the decision type (categorical [regression absent or present] vs. dimensional [frequency of social behaviors]), and the timing of the assessment (retrospective vs. prospective). Latent class growth models were used to classify individual trajectories to see whether regressive onset patterns were infrequent or widespread within the ASD group. A majority of the sample was classified as having a regressive onset using either examiner (88%) or parent (69%) prospective dimensional ratings. Rates of regression were much lower using retrospective or categorical measures (from 29 to 47%). Agreement among different measurement methods was low. Declining trajectories of development, consistent with a regressive onset pattern, are common in children with ASD and may be more the rule than the exception. The accuracy of widely used methods of measuring onset is questionable and the present findings argue against their widespread use. Autism Res 2018, 11: 788-797. © 2018 International Society for Autism Research, Wiley Periodicals, Inc. LAY SUMMARY: This study examines different ways of measuring the onset of symptoms in autism spectrum disorder (ASD). The present findings suggest that declining developmental skills, consistent with a regressive onset pattern, are common in children with ASD and may be more the rule than the exception. The results question the accuracy of widely used methods of measuring symptom onset and argue against their widespread use.

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

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 autism spectrum disorder 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 = 0.38). 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.