Relation between Child’s Age of Autism Diagnosis and Parents’ Stress, Perceived Quality of Life, and Empowerment Status

Background: It is well understood that a diagnosis of autism spectrum disorder (ASD) impacts not only the child, but the entire family unit. In fact, prior research has indicated that parents of children with ASD experience more parenting stress, compromised quality of life, and increased need for support compared to parents of children who have another disability or are typically developing (Hayes & Watson, 2013). Given the persistent gap between the age at which ASD can be reliably diagnosed and the median age of diagnosis, an important next step in this line of research is to consider the role of child’s age of diagnosis on parenting experience. Considering that children diagnosed after the age of three miss the window of opportunity for early intervention services, we hypothesized that parents of these children would demonstrate higher stress levels and reduced quality of life and empowerment.

Objectives: To compare parenting stress, perceived quality of life, and empowerment status in parents of children who received an early and delayed diagnosis.

Methods: Participants included 71 parents (mothers, n=44; fathers, n=27) who enrolled in a parent education program designed to teach families about ASD. The children of enrolled parents ranged in age from 2-16 years and were classified as receiving either an early (i.e., first 3 years; n=35) or delayed (i.e., 4 years or older; n=36) diagnosis. Parents completed the Family Empowerment Scale (FES; Koren et al., 1992), Parenting Stress Index–Short Form (PSI-4-SF; Abidin, 2012), and Family Quality of Life Scale (FQOL; Beach Center on Disabilities, 2006). The FES measures empowerment in three domains: Family, Service System, and Community. The PSI is comprised of three subscales: Parental Distress, Parent-Child Dysfunctional Interaction, and Difficult Child. The FQOL measures five domains: Family Interaction, Parenting, Emotional Well-Being, Physical Well-Being, and Disability-Related Support. Mann-Whitney U tests were used to examine differences between parents of children who received an early and delayed diagnosis.

Results: With regard to empowerment, results revealed that delayed diagnosis parents felt less empowered with respect to the family (U=459, p<.05), service system (U=401, p<.01), and larger community (U=395, p<.01). With regard to parenting stress, delayed diagnosis parents perceived their child as more difficult (U=394, p<.01) than early diagnosis parents, but no differences emerged on the Parental Distress (p=.80) or Parent-Child Dysfunctional Interaction subscales (p=.13). With regard to quality of life, delayed diagnosis parents perceived their child as having fewer disability related supports (U=423, p<.05), but no differences emerged on the Family Interaction, Parenting, Emotional Well-Being, or Physical Well-Being domains (p’s=.27-.70)

Conclusions: Parents of children who received a diagnosis after the age of three felt less empowered and perceived their child as more difficult and with fewer disability-related supports. The implications of these findings are two-fold. First, the results provide additional evidence supporting the importance of early detection of ASD from a family perspective. Second, the results suggest that children diagnosed after the age of three and their families may require extra support. Incorporating forward planning into the diagnostic process may be one avenue to consider.