Comparing Parent-Reported Autism Diagnoses to Administrative Claims

Background:

Surveys of parents and caregivers for individuals with autism present a unique opportunity to gain valuable information about the diagnosis experience. Previous research has found that the diagnostic process for children with autism is often confusing for parents, that diagnostic terminology is difficult to understand, and that the length of time the diagnostic process takes to complete is stressful and disorienting.¹ Comparing parent-reported experiences of the diagnosis process to administrative data allows for the detection and prioritization of opportunities to provide needed information to parents and caregivers navigating the diagnostic process. ^2,3

Objectives:

• Determine overlap of parent-reported diagnoses for their children and administrative records, before and after an autism diagnosis.
• Identify child- and parent-level characteristics that predict alignment in parent-reported diagnoses and diagnoses captured in administrative data.

Methods:

The Pennsylvania Autism Needs Assessment, conducted in 2017, included a survey of parents/caregivers of all ages. Information on demographic characteristics, service needs, and self-reported health, as well as a range of other topics was collected. Parents answered multiple questions about the diagnostic process, including diagnoses received before an autism diagnosis for their child, as well as diagnoses that are currently present. In addition, parents could consent to link their survey responses to administrative claims data for their child. This sample includes 530 children under age 11 whose parents consented linking to their administrative records.

Results: The average age of the children for whom a caregiver responded was 7.1 years old. Most children were male (79.9%) and were predominately Caucasian (82.9%). About half (49.4%) of the caregivers indicated that getting a diagnostic evaluation for their child was somewhat or very difficult. About two thirds (68.2%) indicated receiving at least one prior diagnosis to their autism diagnosis. The most common diagnoses reported before receiving an autism diagnosis were Developmental Delays (43.4%), ADHD (21.5%), and Learning Disability (12.8%). The most common current diagnoses were ADHD (39.1%), Developmental Delays (33.7%) and Anxiety Disorder (21.3%). These diagnoses will be linked to administrative records to determine if the diagnoses were present prior to the autism diagnosis, and if the child had services billed for the diagnoses. Socio-economic factors, child age, and overall experience of obtaining an autism diagnosis (“easy” vs “difficult”) will be examined to determine predictors of alignment in parent-reported diagnoses.

Conclusions:

Previous research has examined validity of parent-reported diagnoses in autism populations with the goal of understanding and supporting the diagnostic process.⁴ Determining differences in how families understand the diagnoses a child may have is important for treatment planning. Recent research on the parent-reported prevalence of autism underscore the importance of examining the feasibility of using administrative claims to validate parent-reported.⁵ This research also has important implications regarding resource development and policy planning to better support families in the diagnostic process, and to quantify the role of socio-demographic factors and other characteristics in facilitating an accurate and timely autism diagnosis.