20364
Characterizing Parent Influence in the Diagnosis of ASD
It is commonly understood that increased rates of ASD diagnoses over time may be partially explained by increased awareness of ASD. Scholars – in particular sociologists - have attempted to explain the recent rise in autism diagnoses by examining the diffusion of information about ASD across the social networks of parents. The argument has been that parents share information about autism with one another in parks, playgrounds and other local public spaces. This information in turn encourages parents to seek out the diagnosis and pursue medical, school and state therapy resources for their children.
On one hand, this finding might be interpreted as concerned and knowledgeable parents being more likely to raise their concerns to their pediatricians and other medical professionals, who might have otherwise overlooked symptoms of ASD. On the other hand, this finding might be interpreted as parents having greater ability to manipulate – either sincerely or cynically - the health care system to obtain supports and services for their child. Further unpacking the mechanisms of patient influence is immensely important for crafting appropriate health care policy.
Objectives:
This research aims to better understand how parents might affect the ASD diagnostic process of health care providers and health care organizations.
Methods:
First, data from the California Department of Developmental Services were used to replicate the discrete-time event history analysis of previous research and demonstrate the same correlation between measures of parent social interaction and rates of ASD diagnosis. Next, a subset of these data were merged with detailed electronic medical records from a large HMO in California (2000-2007 birth cohorts, n = 276,395). Using the HMO data and employing text-mining methods, we disaggregated the diagnostic process into two conceptually-distinct phases: (1) initial suspicion of ASD - an extended period of diagnostic uncertainty as signs and symptoms of a medical condition are initially identified (typically by a generalist), and (2) formal diagnosis - a diagnosis that resolves this uncertainty (typically by a specialist). To see whether parent social interaction has an impact on who is suspected and/or who is diagnosed (conditional on suspicion), we repeated the discrete-time event history analysis at each phase.
Results:
Consistent with previous research, we find that parent social interaction was positively associated with likelihood of being diagnosed with ASD (OR = 1.156, p < 0.001). However, when the diagnostic process was disaggregated, we found that parent social interaction was positively associated with initial suspicion of ASD (OR = 1.15, p < 0.001), but not associated with a formal diagnosis of ASD (OR = 0.83, p < 0.001).
Conclusions:
Our research provides the first evidence of how and where parents may influence the ASD diagnostic process. Further examination of the specific social processes at play is critical to understanding patterns of diagnosis and informing health care policy.