Enhancing the Parent Experience While Waiting for an Autism Spectrum Disorder (ASD) Evaluation

Background: The Autism Spectrum Disorder (ASD) diagnostic process is lengthy and anxiety-provoking for many families. Retrospective research has focused on families’ experiences including satisfaction during the evaluation process (e.g., Howlin & Moore, 1997, Crane et al, 2016). However, none have assessed caregiver experiences while actively going through the assessment process.

Objectives: This two-phase project surveyed caregivers during their child’s ASD assessment. The objective was to evaluate caregiver experiences prior to their child’s appointment and test whether providing education prior to the appointment impacts thoughts, knowledge, and emotions compared to the control group.

Methods: Participants included caregivers of children being evaluated in an interdisciplinary ASD clinic at a Midwestern children’s hospital (typical clinic age 2-6 years). Participants completed a voluntary, anonymous survey during their child’s diagnostic appointment. In Phase 1 (N=42), participants were asked questions including age of first concern, awareness of ASD resources, resources they wished for before the appointment, and emotions felt while waiting. In Phase 2 (N=26), caregivers received a one-page “fact sheet” prior to their appointment including ASD symptoms and testing-day information (including testing rooms visuals). They received the same survey as Phase 1; with additional questions on the helpfulness of the fact sheet.

Results: See Table 1 for demographic information. There were no significant group differences between the current age of the child or caregiver, age of first concern for overall development, or age of first concern for ASD (p>.05 for all). Both groups reported similar familiarity with a national and local ASD resource (p=.496). Twenty-two caregivers reported receiving the fact sheet prior to their appointment. The majority of them reported the fact sheet as very helpful (mean=4.09 on a 5-point Likert scale). Analyses were conducted to compare Phase 1 and 2 group differences on requests for information and feelings experienced while waiting (see Table 2 for frequencies). Surprisingly, despite finding the fact sheet very helpful, Phase 2 caregivers reported wanting significantly more information about child development, ASD information, ASD resources, the appointment, treatments, school connections, cost, and connection to other families (p<.01 for all) than Phase 1 caregivers. Phase 2 caregivers also reported being significantly more anxious, sad, confused, alone, scared, stressed, and frustrated (p<.03 for all) but interestingly also reported being significantly more relieved and hopeful (p<.03 for each).

Conclusions: Research has demonstrated the stressful nature of the diagnostic process (Crane et al, 2016). Surprisingly, even though this study provided (caregiver-reported) helpful information in advance, caregivers still reported wanting more. They also reported significantly more negative emotions than those that did not receive the fact sheet. Findings suggest that perhaps the stress and active challenges families experience while waiting may not be allayed by providing standardized information. Encouragingly, caregivers also reported positive feelings, suggesting that there are opportunities to continue to support and encourage families. To date, research has neglected to examine caregiver emotions, particularly positive emotions, during the ASD evaluation waiting period. Additional research is needed to enhance our understanding of these experiences to help improve caregiver and child outcomes.