Caregiver's Experience of Universal ASD Screening – Would They Do It Again?

Background:  Universal ASD screening raises a unique set of challenges for families, who likely come from a wider range of ethnic, racial, and socioeconomic backgrounds, and who may not have even considered that their child may have some developmental concerns before they are notified that their child screened positive.  A better understanding of caregiver’s experiences is needed in order to support early identification efforts.

Objectives:  The purpose of the study was to obtain the perspectives of caregiver’s experiences as part of a community-based universal screening study as a way to better identify challenges and supports to early ASD identification. 

Methods:  Twenty-four caregivers who participated in a universal community-based screening study (The EACH Child Study; Miller et al 2011) participated.  Eleven families had a child with language delays and 13 were classified as ASD.  Caregivers were interviewed at follow-up (mean age = 43months) and were asked to complete the Parenting Stress Index (PSI), the Reaction to Diagnosis Interview, and a survey about the experience of the screening and diagnostic evaluation, and what they did for follow-up.

Results:  Caregivers rated the process of completing the screening measures in the pediatric setting as “easy to complete” and “not bothersome as part of their visit.” Overall, caregivers reported positive phone-follow-up and in person screening experiences; however, caregivers of children in the ASD reported the initial diagnostic feedback to be challenging.  Reaction to diagnosis results indicated caregivers of children with ASD experienced uncertainty and/or denial initially. Further, ASD caregivers reported cumbersome experiences navigating the EI service system, lack of resources, language barriers, social support, familial support and spousal communication as challenges following initial feedback.  Approximately 6/24 caregivers did not report developmental concerns prior to screening; 3 had no previous understanding of ASD; 14 reported minimal understanding and 9 reported “moderate” understanding (e.g. knew someone with ASD). Results of the PSI indicated similarly elevated levels of parental stress in both the ASD and language delay groups (M = 78.15 SD =23.13).  Components of the process that helped caregivers navigate the process included positive experiences with providers, family support and entry into early intervention. Despite reporting challenges, all caregivers stated that they would participate in the screening study again for a younger child. Lastly, approximately 16 of the families followed through with treatment recommendations and 8 did not (6/8 were in the language delay group).

Conclusions:  While much evidence exists to demonstrate the effectiveness of EI for ASD, we are only beginning to understand the impact of screening in “real world” settings. The caregiver perspectives from this community-based universal screening sample highlight the challenges and supports faced by families following a positive screen for ASD.  Caregivers reported high levels of stress-particularly around initial diagnosis and challenges navigating the EI system. Lack of knowledge of ASD and limited social supports/spousal supports significantly impacted access to EI.  More research into the experience of families in real world settings is needed in order to ensure the promise of early screening and identification is realized.