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

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:. Method: Toddlers who screened positive for autism spectrum disorder (ASD) during well-child checkups 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. Conclusion: 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.