The earlier, the better? Diagnostic experiences of parents in a community-based early intervention system for preschool children with autism

Abstract

Background and aims In many countries, early detection and diagnosis of autism spectrum disorder is largely dependent on parents’ initial concern with early symptoms of autism spectrum disorder. Previous research on parental perceptions of the autism spectrum disorder diagnostic process indicates that parental satisfaction may be due to either the timing of the diagnostic notification or the provision of post-diagnostic support. The objective of this research is to study the diagnostic notification process and its impact on parents who are informed of their young child’s diagnosis before they notice a problem and whose child undergoes early intervention therapy. Methods Eighty parents of preschool children diagnosed and undergoing early intervention for autism were surveyed to examine their experience of the diagnostic disclosure process. Results Of 68 respondents, 39 (58.2%) approved of the timing of diagnostic notification, while 10 of 13 dissatisfied respondents indicated that the diagnosis was communicated too late. However, there was no correlation between a higher degree of parental satisfaction with the diagnostic notification process and earlier timing of notification. Conclusions Although it is preferable to communicate a diagnosis of childhood autism as soon as possible, findings suggest that a highly individualized approach, allowing a degree of latitude in the timing of notification, may be permissible, depending on the individual case and parental readiness to receive the diagnosis. Implications Findings have clinical implications related to the concept of optimality of diagnostic disclosure as related to the diagnostic notification process, though later notification tends to lead to more dissatisfaction.

Awareness of children's developmental problems and sharing of concerns with parents by preschool teachers and childcare workers: The Japanese context

“…In prior years, this time lag has been reduced by improved techniques for the early detection of NDD in preschoolers (Honda et al, 2009; Jullien, 2021). In Japan, it is common for public health nurses, preschool teachers and childcare workers to recognize developmental concerns in children before parents do and to recommend that parents bring their children to see specialists for developmental assessment and diagnosis (Iwasa et al, 2019). A recent nationwide survey on ASD in Japan revealed that the cumulative incidence of ASD diagnosis in 5‐year‐old children is 2.75% and that this figure is rising (Sasayama, Kuge, et al, 2021).…”

“…However, it is sometimes difficult for parents and preschool teachers to agree on the developmental concerns of young children. Iwasa et al (2019) conducted a survey of parents' satisfaction with the process by which their children, who received early intervention before school, were diagnosed with ASD. Many of the parents were informed of developmental concerns about their child either by public health nurses at the 18‐month or 3‐year‐old health checkups or by preschool teachers or childcare workers, regardless of whether the parents had already voiced concerns.…”