Setting Families up for Success: Parent Perspectives on a Toolkit to Enhance the Autism Spectrum Disorder Diagnostic Evaluation Process

Background: Serving children with Autism Spectrum Disorder (ASD) is a significant public health concern (CDC, 2014). The first step in accessing services is often the ASD diagnostic evaluation. Unfortunately, receiving a diagnosis alone does not guarantee that services will be initiated. Parents report challenges with the evaluation process, such as providers recommending services not consistent with what is available and communication gaps between families and providers (Rous et al., 2008). Each parent brings a unique set of characteristics to the evaluation that may influence the evaluation’s impact on a child’s service use trajectory. For example, studies have documented that parental beliefs about the causes and chronicity of ASD can impact treatment choices (Dardennes et al., 2011; Mire et al., 2017), and parent perceptions of ASD symptom severity can impact follow-through with evaluation recommendations (Moore & Symons, 2009).

Objectives: To: 1) describe the development of a toolkit to enhance psychologists’ communication and tailoring skills during the ASD diagnostic evaluation process; and 2) preliminarily evaluate the impact of the toolkit on parents’ perceptions of the evaluation and recommendation follow-through efforts.

Methods: The ASD evaluation enhancement toolkit was developed with input from psychologists providing ASD diagnostic evaluations at a regional children’s hospital and the parents they serve. More specifically, parents (n=10) whose children were diagnosed with ASD by participating psychologists (n=7) were interviewed one month post-evaluation about the diagnostic report, recommendations, and feedback portion of the evaluation. The interview protocol included both close-ended and open-ended questions. Another group of parents (n=6) whose children received an ASD diagnosis from participating psychologists were interviewed after the toolkit training had taken place, and responses between the two groups of parents were compared. The majority of children with ASD of these participating parents were male (87.5%), Hispanic (50%), and Medicaid-insured (43.8%) with a mean age of 3.4 years. Close-ended responses were analyzed using SPSS; open-ended responses were coded using an open-coding process (Haine-Schlagel et al., 2013).

Results: Effect size estimates from t-tests indicated that parents who received their evaluation after the toolkit training reported higher satisfaction with feedback. Across the two groups, there were no differences in understanding the evaluation results and confidence in next steps after the evaluation. There were also no differences in the likelihood of obtaining the report or percentage of recommendations initiated by the time of the interview. Qualitative data indicate that barriers to following through with recommendations differed for those who received their evaluation before versus after toolkit training. For example, some parents interviewed before the training discussed the need for more support after the evaluation to help obtain recommended services. Parents interviewed after the training did not articulate any need for additional support to obtain recommended services from their evaluator.

Conclusions: Results indicate some promising signals that this toolkit may address some barriers that facilitate parents’ follow-through with recommendations following an ASD diagnostic evaluation. A larger-scale test of the toolkit’s effectiveness with a much larger sample of parents across a more heterogeneous group of psychologists is a critical next step.