Examining Parent Readiness for Diagnosis and Social Support In a Community-Based Screening Sample

Background: Community-based screening studies for autism provide a unique context for studying issues related to early identification.  As the push for universal screening and earlier diagnosis of autism increases, many challenges arise that the field has yet to address, which may impact a child’s ability to actually enroll in early intervention following a positive screen.  Some of these factors include parent readiness for screening and social support. 

Objectives: The present study aimed to utilize a community-based sample as a way to examine issues related to population based autism screening.  Specifically, we examined the parent process by examining how these families rated the screening process at each step, their reaction to the feedback provided at the in-person screening and their readiness for diagnosis.  We also assessed social support and how it impacted the screening process.   

Methods:  We followed 24 toddlers brought in through a screening study conducted in a pediatric practice (Miller et al. under review) through their 4^th birthday.  These children were part of a cohort of children originally screened within their 2^nd year life using the MCHAT and CSBS-ITC and subsequently brought back for a formal diagnostic evaluation during their 3^rd year of life.  During the follow-up evaluation, parent reactions to the screening process were evaluated based on final diagnostic category [Autism (N=6), PDDNOS (N=6), Language Delay (N=12)] using a parent interview developed by the authors.  Social support, including spousal, extended family and community was also examined using rating scales and the Parenting Stress Index.   Demographic and risk variables were also examined.

Results:  We found that overall parents looked back on the screening process positively and did not consider it an undue burden (2/24 rated some difficultly).   Only 50% (3/6) of the PDDNOS group demonstrated parent or provider concerns at the initial evaluation compared to 83% (5/6) of the Autism group.  Parents of children with more signs of autism were more likely to have moved into action and sought out early intervention.  In addition, those parents who reported higher levels of social support overall were more likely to enroll their children in early intervention.  Also, we found that only 9 of the 24 families reported some understanding of autism before screening.  No difference in parenting stress scores between groups was observed (p > .05). 

Conclusions: The present study provides an important step in understanding the screening process for families of children at-risk for autism.  As we begin to identify children earlier through screening, we must be better prepared to address the needs of a wider variety of families.  Many of our families reported a positive experience, but expressed varying levels of social support and readiness for diagnosis.  It will be important to further examine how families move through the diagnostic process in community samples so that we help families ensure children are receiving appropriate intervention.