The Sociomateriality of Parent-Reported and Observation-Based Screening Tools for Autism Spectrum Disorders (ASD): A Sociological Investigation of Community-Based ASD Screening to Address Health Disparities

Background:

Challenges to ensuring the early identification of Autism Spectrum Disorders (ASD) among toddlers from racially and ethnically diverse backgrounds is well-documented. These challenges are related to population characteristics (e.g., limited access to ASD-specific knowledge, disability stigma, linguistic barriers for non-native English speakers, lack of institutional trust, and competing social needs) and the respective service delivery systems (e.g., inadequate cultural competency, provider non-compliance with professional guidance and challenges in diagnostic ascertainment). In this study, we investigate how the implementation of parent-reported and observation-based screening tools may address or amplify these challenges in the clinical encounter for families from historically underserved communities.

Applying a sociological lens, we examine the reflexive relationship between these technologies (i.e., the screening tools) and the social contexts in which they are introduced (i.e., ‘socio-materiality of technology’). Our approach recognizes a situated ecology of use (or in some cases, non-use), consisting of various actors, practices, and their relationships. As Timmermans (1998) argues, the “potential and power of a technological device to shape an interaction is not pre-given but is realized in practice.” We provide an in-depth and multi-method examination of screening tools when “realized in practice” and the ways within which these technologies potentially mitigate, reproduce, or propagate new challenges confronting diverse families across the ASD diagnostic process.

Objectives:

Examining implementation of parent-reported tools (BITSEA, POSI) and observation-based screening tools (STAT), this paper investigates the different ways within which parent-reported and observation-based screening tools restructure the clinical encounter and the tools themselves are simultaneously adapted.

Methods:

Our multi-method approach employs longitudinal interviews with caregivers of children with ASD (n=21), semi-structured cross-sectional interviews with Early Intervention providers (n=20), and observations of the screening tools with toddlers and families (n=12). We analyze transcripts and field notes using a modified grounded theory approach known as “Coding Consensus, Co-occurrence, and Comparison,” in which analyses are derived from the data (based on a priori and emergent themes) and then illustrated by characteristic examples.

Results:

Our findings suggest that characteristics of the respective screening tools were influential both in reconfiguration of the clinical encounter and in how the providers and families adapt the tools. Administration of the parent-reported screening tools led providers and families to adapt the tools in a number of ways not seen in implementation of the observation-based screening tool. For parent-reported screening tools, providers adapted administration and content of the tools as strategies to address challenges regarding the caregiver’s (1) ability to “see” and therefore report on the indicated behaviors of concern, (2) limited access to ASD-specific knowledge, (3) readiness for discussions of ASD, and (4) linguistic barriers. In contrast, adaptation to protocol in administration of the observation-based protocol primarily reflected family readiness but other challenges were rarely or not at all discussed or observed.

Conclusions:

Our study finds evidence of a reflexive relationship between ASD screening tools and the context in which they occur; this relationship occurred differently for parent-reported and observation based tools suggesting different types of tools may mitigate or reproduce well-documented challenges in addressing ASD disparities.