An Investigation of Parental Perception of Their Child's Autism Spectrum Disorder Diagnostic Evaluation

Background: A growing body of research suggests many parents are generally dissatisfied with their child’s Autism Spectrum Disorder (ASD) diagnostic evaluation (Smith et al., 1994). This is not surprising given several studies have found that many parents view this process to be confusing, limited in benefit, and unsupportive of the family’s emotional needs (Siklos & Kerns, 2007). Despite these troubling findings, a dearth of literature has examined what factors are associated with these poor outcomes or has provided recommendations aimed at improving parents’ experience.

Objectives: This study measures parental perception of the diagnosticians’ a) clarity in communicating diagnostic information and formulation, b) effectiveness in providing recommendations and plan for follow-up care, and c) effectiveness in creating a supportive and helpful relationship with parents during their child’s ASD diagnostic evaluation. 

Methods: Parental perception was measured using a 35-item, 5-point Likert-type questionnaire that was filled out after seeing the child’s diagnostician. To assess the first and second objectives, 13 items from the Mishel Uncertainty in Illness Scale (Mishel, 1981), as well as four custom items, were included.  Twelve items from two subscales (Confident Collaboration and Dedicated Patient) statistically derived from three measures of therapeutic alliance (Hatcher & Barends, 1996) were also included to assess the final study objective. In addition to parental measures, diagnosticians completed a 10-item questionnaire about their perception of the parents' diagnostic feedback experience. Descriptive statistics and ANOVA or t-test analyses were used to examine the study hypotheses. Presently, the sample size totaled 24 children (M = 7.14 years; 50% male and 62% Caucasian) / parents (M = 37.9 years; 96% biological mothers).

Results: Mean scores on the Mishel (M = 4.29, SD = .42), Confident Collaboration (M = 4.47, SD = .38) and Dedicated Patient (M = 4.7, SD .37) subscales, and the custom items (M = 4.41, SD = .62) suggest parents were very satisfied with their diagnostic experience. However, there was no relationship between diagnostician rating of their perception of parents’ experience and parental rating of the diagnostic experience (p > .05). The only demographic factor that was associated with parents’ diagnostic experience was that parents seeking an initial evaluation reported greater confidence in the evaluative process (p < .05).

Conclusions: Results from the preliminary analysis indicate that patients report a high degree of satisfaction regarding diagnosticians’ communication of diagnosis and follow-up plan, and the quality of their relationship with the diagnostician.  Despite these positive findings, important caveats to the parental experience were identified.  That is, parents seeking a second evaluation of ASD reported lower confidence regarding the evaluative process than parents seeking an initial opinion.  This is concerning given that lower levels of confidence in the evaluation may hinder parents’ acceptance of diagnosis and adherence to recommendations.  In addition, the lack of relationship between diagnosticians’ and parents’ perception of the evaluation suggests that diagnosticians may be ineffective in recognizing parental reaction to and understanding of diagnostic feedback. These data highlight the need for ameliorative strategies to address this gap .