Caregiver Concerns Prior to a Diagnostic Evaluation: Differences Between Children with and without Autism Spectrum Disorder

Background:  

Research suggests that parental concerns precede an Autism Spectrum Disorder (ASD) diagnosis; it is unclear if specific types of concerns may be specific to children with ASD versus another developmental condition. While previous studies have gathered parent-report data from high-risk samples (Ozonoff et al., 2009) or used retrospective reports, caregiver concerns preceding a diagnosis of ASD in a large community based sample remain unexamined. 

Objectives:  

This study examined the extent to which parent concerns differentiate children with an eventual diagnosis of ASD versus those without in a community based sample aged 12 months-9 years. 

Methods:  

This secondary data analysis of caregiver report data gathered prior to a child’s diagnostic evaluation resulting in a diagnosis of ASD (n=271) or non-ASD (including global developmental delay; n=314). We examined 3 groups of participants: (ages 0-3yrs; 3-6yrs; 6-9yrs; total of n=585 children). Concerns were coded from an intake form prior to diagnostic evaluations. Coding was adapted from Ozonoff et al. (2009), and included: 1) Externalizing; 2) Cognitive development; 3) Medical; 4) Motor; 5) Speech/communication; 6) Social interaction; 7) Stereotyped behavior; 8) Sensory aversions/preferences; 9) Unspecified autism; 10) Internalizing. We used binary logistic regression to determine the extent to which categories of caregiver concerns predicted diagnostic group (ASD/non-ASD) in 3 age groups of children. 

Results:  

In the youngest group, increased Externalizing (p<.05; OR=.334) and Cognitive development (p<.05; OR=.221) differentiated children in the non-ASD group. In children 3-6 yrs, increased Speech (p<.05; OR=1.640) and Social concerns (p<.01; OR=2.156) differentiated children with ASD. In the oldest group, increased Social concerns differentiated children with ASD (p<.05; OR=2.433). These four concerns correctly classified 74.5% of children 0-3yrs; 62.5% 3-6yrs; and 73.1% of children 6-9yrs. 

Conclusions:  

Results suggest that parental concerns may help predict a diagnosis of ASD, but distinct concerns differentiate ASD across age groups. Children that do not receive an ASD diagnosis in the 0-3yr group have a higher likelihood of Cognitive development and Externalizing concerns potentially due to the emphasis of reaching developmental milestones at this age. Among children aged 3-6 years that received an ASD diagnosis, the likelihood of Speech and Social concerns was increased. This may be due to the changing social demands on the child (e.g., preschool). At 3 years, many children are increasingly demonstrating complex language and social play, and this may be a potential differentiating factor and concern for parents of children with ASD. In children with a diagnosis of ASD aged 6-9 years, speech concerns diminish, and the likelihood of Social concerns is very high. By understanding the parental concerns that best differentiate those with an eventual ASD diagnosis, we can better monitor children at risk of a diagnosis and identify children more acuurately across development.