Symptom Recognition, Parental Help-Seeking, and Diagnostic Variation in Autism Spectrum Disorder

Background:

Autism spectrum disorder (ASD) symptom recognition studies often suggest that diagnostic variation in children is primarily explained by how quickly parents notice anomalous behaviors (e.g., Daley, 2004), a factor that is thought to be associated with exposure to health-related information (Mazumdar et al., 2013). Our research in Costa Rica (Authors et al., 2017) challenges this theory by showing that parents of varying socioeconomic status (SES) are about equally good at detecting anomalous behaviors, and at similar ages to early studies in the U.S. (e.g., Howlin & Asgharian, 1999). In our previous report, we find that the prevailing mechanism driving diagnostic variation occurs at the referring clinic rather than in the homes or minds of parents.

Objectives:

The aim of the present study is to develop an alternative theory of the parental role in ASD diagnosis, especially in the context of varying levels of health-related information and exposure to other children with the diagnosis. We focus on Costa Rica, where spatial clusters of low severity cases of childhood ASD have been identified (Authors et al., 2015) – the very cases for which information should be especially helpful.

Methods:

Semi-structured interviews were conducted with the parents of 54 children with ASD, including many cases within the spatial clusters that appeared after a genetic study conducted an information campaign for case recruitment. The interviews focused on factors influencing parents’ symptom recognition and help-seeking behaviors, including contact with individuals with developmental disorders and clinical encounters leading to diagnosis. Parents also discussed any influence they had on parents of other symptomatic children. The analysis follows early ethnomethodological studies (e.g., Garfinkel, 1967)—a subfield of sociology—of the practical problems of research subjects, and is influenced by later conversation analytic studies of social actions such as advice-giving, complaining, and providing encouragement (e.g., Schegloff, 2008).

Results:

Parents’ first concerns are related to generic developmental problems that are not attributed to specific diagnoses. Parents occasionally seek out advice from family and friends and primary care physicians, but the responses treat the advice-seeking as “troubles talk” (Jefferson, 1988), where appropriate responses include those that provide sympathy or encouragement. Parents commonly receive unsolicited advice from strangers, but these encounters are seen as criticism. When parents encounter other children with ASD, the heterogeneity of symptoms leads them to conclude that their children “have something else.” Parents become convinced their children are atypical when they fail to meet additional developmental milestones and spend time with other children.

Conclusions:

Theories that account for parental symptom recognition and help-seeking behaviors in ASD tend to put the onus of early detection on parents, which is unfortunate given our history of blaming mothers for ASD. Our data suggest factors that contradict these theories. The pathways to ASD diagnosis include a give and take between typical development and concerning developmental delays, between encouragement to wait-and-see and unwanted advice to seek help. Ultimately, it is clinicians rather than parents that create diagnostic variation.