Stress in Parents with Children at-Risk for ASD: Self-Referred Versus Pediatrician-Referred

Background: There is a widespread body of literature suggesting parents of children with developmental disabilities experience significantly higher levels of parenting stress than parents of children without developmental disabilities.  Although many studies have investigated parental stress after a child has received a diagnosis, little research has examined parental stress while parents are seeking a diagnosis.  The current literature suggests that parents experience considerable stress during the process of obtaining a diagnosis.  Moreover, different avenues of referral are possible, self-referred versus professional referred.  In general, parents are spending 1.5years to 4 years trying to obtain an accurate diagnosis.  This period of time may be filled with uncertainties, questions, and frustrations, thus proving to be a tremendously stressful experience for parents. 

Objectives: The purpose of this study was to examine stress in parents whose children were at-risk for autism spectrum disorders at the time of a developmental screening.  Specifically, we compared parents’ stress levels based on referral type, pediatrician-referred or self-referred. 

Methods: All participants in the current study were parents who had contacted our center because of a referral by a pediatrician or because they saw a brochure, poster, and/or website advertising a free developmental screening.  All parents went to their pediatrician reporting concerns about their child’s development, however, not all parents were referred by their pediatrician for a screening for autism.  The Parental Stress Index-Short Form was administered to all twenty-four parents, pediatrician-referred (n=14) and self-referred (n=10).  A one-way multivariate analysis of variance (MANOVA) was conducted to determine the effect of referral type.  A linear regression analysis was conducted to test the prediction of total stress score from the overall number of months parents are concerned about their child’s development.

Results: The Hotelling’s Trace multivariate test of overall differences between self-referred and pediatrician-referred groups was statistically significant (F (3, 20) = 8.61, p <.01), indicating that self-referred parents differ from pediatrician-referred parents.  Self-referred parents exhibited significantly higher levels of Total Stress than pediatrician-referred parents.  Univariate between-subjects test showed that the group effect (self- vs. pediatrician-referred) was significantly related to the Difficult Child subscale (F (1, 22) = 21.62, p <.01). There was no group effect (self- vs. pediatrician-referred) related to the Parental Stress subscale nor the Parent-Child Dysfunctional Relationship subscale.  No relationship was found between length of concern and referral type.

Conclusions: Thus this study, in line with previous literature, highlights the importance of health care providers to listen to and acknowledge parental concerns regarding a child’s development.  The data suggests that for parents, who voice their concerns to their pediatrician, the action and referral made by the health-care provider may lead to lower stress levels than parents who voice their concern and no action is taken.  Overall, these results are consistent with the previous qualitative research that documents parents’ difficulties and experiences they face while searching for explanations of their child’s behaviors.