Parents' Concerns as They Relate to Their Child's Development and Later Diagnosis of Autism Spectrum Disorder

Abstract

Objective Data from a toddler screening study were used to examine: 1) categories of concerns regarding the development of their child reported by parents prior to diagnostic evaluation, 2) congruence of parent concerns with their child’s later diagnosis, 3) the extent to which parent concern(s) were associated with the therapies their child received and types of specialists consulted, and 4) the association between the number of parental concern categories and clinical measures. Methods Toddlers who screened positive for autism spectrum disorder (ASD) during well-child check-ups received a diagnostic evaluation and parents completed a history questionnaire (n=532; 274 ASD, 258 non-ASD). Parents’ concerns about their child’s development, therapy received, and specialists consulted were coded into discrete categories. Results Most parents (>90%) reported concerns about their child’s development. The most common concern in both the ASD and non-ASD groups was speech/communication (78.6%). Significant differences were found between diagnostic groups in the speech/communication, restricted/repetitive behaviors, social, behavioral, and medical concern categories. Parent concerns were associated with therapies received and specialists consulted. The number of concern categories was positively associated with several ASD scores. Conclusions The developmental concerns expressed by parents of undiagnosed toddlers were highly consistent with the diagnosis the child later received. Based in part on their areas of concern, parents made contact with the appropriate professionals and their children received some therapy prior to diagnosis. Finally, parents who reported concerns across different areas endorsed more symptoms during screening. Results emphasize the need for providers to elicit and take seriously parent concerns during the referral and diagnostic processes.

Autism Spectrum Disorders in Mali: Parental concerns about child developmental milestones and late diagnostic age

“…This result corroborates the ndings of Richards et al They reported that over 90% (n=532) of the parents brought up concerns during well child visits and 78.6% were about speech and verbal communication [29]. Children whose parents expressed concerns about their child's verbal communication experienced earlier ages for all outcomes when compared to children of parents who did not have verbal communication concerns [30]. Such nding highlights the evolution of parental concerns over time.…”

Visuospatial and Verbal Short-Term Memory Correlates of Vocabulary Ability in Preschool Children

“…Parents early concern about their child's late achievement of developmental milestones is highly correlated with the later diagnosis of a child's neurodevelopmental disorder (e.g., Richards, Mossey & Robins, 2016). Richards et al, (2016) reported that the most common concern of parents was their child's lateness in speech/communication development, and the authors cautioned professionals to take parent concern seriously during the diagnostic workup.…”

Recognising autism: a latent transition analysis of parental reports of child autistic spectrum disorder ‘red flag’ traits before and after age 3

“…While developmental variation in the population is to be expected, a cluster of behaviours or missed milestones ('red flags') can signal the presence of a potential underlying problem and may be indicative of disordered behaviour [20]. Parental 'prediction' of ASD diagnosis via problematic behaviours has been shown to be reliable, both in prospective and longitudinal studies [21,22] and in studies utilising retrospective population data [23,24].…”