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

Background:   An important part of developmental and autism specific surveillance in toddlers is when physicians elicit parents’ concerns. The relationship of parents’ concerns and an autism spectrum disorder (ASD) diagnosis has been examined based on age at and nature of first concern, however the difference in parents’ concerns between children diagnosed with ASD compared to children who are diagnosed with other developmental delays has not been studied.

Objectives: Data from children evaluated as part of a toddler screening study were used to examine: 1) differences between the ASD and non-ASD groups in the categories of developmental concerns 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) predicted the therapies their child received and type 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) risk on the Modified Checklist for Autism in Toddlers (-Revised) during well-child check-ups received a diagnostic evaluation. Prior to evaluation, but after screening, parents completed a history questionnaire about their child (n=532). Parents’ reports of concerns about their child’s health and development, therapy received, and specialists consulted were coded into discrete categories.

Results:   Most parents (>90%) had concerns about their child’s development. The most common concern in both the ASD and non-ASD diagnostic groups was speech/communication (78.6%). Parents of children with ASD were significantly more likely than parents of non-ASD children to endorse speech/communication (p<.001), restricted and repetitive behaviors (p=.001), and social concerns (p=.001). Parents of non-ASD children were significantly more likely than parents of children with ASD to have behavior (p=.005) and medical concerns (p=.004). The mean number of concern categories was not significantly different between the ASD parents (mean=2.2, SD=0.072) and the non-ASD parents (mean=2.02, SD=0.075), (t(530)=1.82, p=.62), indicating that the ASD parents did not have more concerns overall. Parents of children diagnosed with ASD were more likely to have an autism specific concern (speech, restricted and repetitive behaviors including sensory, behavior, or autism label) compared to parents of a child diagnosed with non-ASD (p<.001). Parent concerns predicted type of therapy received and specialists consulted. Parents who reported a speech concern were 1.6 times more likely to receive speech therapy compared to a child whose parents did not have a speech concern. The number of concern categories endorsed was positively associated with several ASD scores: M-CHAT score (r=.279, p<.001; n=176), M-CHAT-R score (r=.146, p=.006; n=356), CARS (r=.130, p=.003). Number of concern categories was not associated with the ADOS severity score (r=.023, p=.705).

Conclusions:   The developmental concerns expressed by parents of undiagnosed toddlers were highly consistent with the diagnosis the child later received. Based on their areas of concerns, parents made contact with the appropriate professionals and their children received some therapy prior to diagnosis. Finally, parents who reported concerns across different developmental areas endorsed more symptoms during screening. Results emphasize the importance of incorporating parent concerns during the referral and diagnostic processes.