Acceptance or Forever Seeking Answers? Adaptive and Maladaptive Reactions to Your Child with ASD

Background: Parenting a child diagnosed with an autism spectrum disorder (ASD) is often associated with chronic stress, elevated anxiety, and depressive symptomology. While this might be true for some, there are caregivers who show a certain degree of resilience as indicated by low levels of reported stress and decreased psychological symptomology. This adaptation might be explained by the caregiver’s resolve to accept the child’s ASD diagnosis or not. Previous studies have shown that caregivers who had resolved their negative emotions toward their child’s diagnosis reported lower stress, while parents who had not experienced emotional resolve reported stress in clinically significant levels. To date, only one instrument, the Reaction to Diagnosis Interview (RDI) ((Marvin & Pianta, 1996), has been extensively used to capture caregiver reaction to their child’s diagnosis of a chronic illness or disability. The instrument categorizes parent responses to six open-ended questions into two constructs, resolved or unresolved. Being resolved represents acceptance of the child’s diagnosis and is equated with adaptive coping, a mechanism that contributes to better health and psychological well-being. A majority of studies have utilized the RDI for child diagnoses such as cerebral palsy, epilepsy, and phenylketonuria (PKU). However, only two have used the RDI to assess parent reaction to their child’s diagnosis of autism. In both instances, the open-ended interview captured data cross-sectionally and not over time.

Objectives: We evaluated a novel 30-item questionnaire, Living with Autism (LWA) (Siegel, 2010), designed to specifically address parent reactions to their child’s diagnosis of autism with a sample of 77 maternal caregivers of children with ASD.

Methods: We conducted a factor analysis to identify constructs illustrative of acceptance or non-acceptance of the ASD diagnosis. Principal components analysis identified a solution for three factors, each examined using direct oblimin rotations with Kaiser normalization to allow for correlations between the extracted components.

Results: The Bartlett’s test of sphericity was significant (χ2 (435) = 1417.63, p < .01). The three factor solution, which explained a cumulative 32.47% of the variance, identified three subscales with primary loadings that ranged from .3 to a high of .75. Factor 1: Externalizing Blame (unresolved/non-acceptance), included “A parent never really gets over a diagnosis of autism in their child.” Factor 2: Self-Blame (unresolved/worry), included “There are things I did that make me worry that I contributed to my child’s difficulties.” Factor 3: Acceptance (resolved/acceptance), included “I have a greater acceptance of my child’s autism than I used to.” Only one item “I wish we lived in a time or place where parents were expected to leave children like this in a home or hospital” was eliminated because it failed to meet a minimum factor loading criteria of 0.3 or above and did not contribute meaningful information to the three proposed constructs.

Conclusions: This novel instrument offers promising insight to caregivers’ acceptance or non-acceptance of the autism diagnosis. Future directions could utilize the instrument to determine the predictive ability of acceptance with psychological outcomes, such as perceived stress and/or depressive symptomology.