Acceptance or Forever Seeking Answers ? Adaptive and Maladaptive Responses to Having a 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 psychological resilience as indicated by low levels of reported stress and decreased symptomology. This healthy adaptation might be explained by the caregiver’s ability to accept the child’s ASD diagnosis. 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, categorizing parents as either resolved or unresolved. No measures have examined reactions to having a child with an ASD. Here we examine a new measure of adaptation.

Objectives:
We examined a novel 30-item questionnaire, Adjustment to the Diagnosis of Autism (ADA) developed by Bryna Siegel. This scale was designed to assess the range of parent emotional and attitudinal reactions to their child’s diagnosis of autism.

Methods:
We administered the scale to a sample of 77 mothers of children with ASD. We conducted a factor analysis to identify constructs illustrative of acceptance or non-acceptance of the ASD diagnosis. Principal components analysis was performed 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.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:
The autism research community knows anecdotally the wide range of coping responses to the diagnosis, but these have not been easily measureable. This novel instrument offers a way to measure caregivers’ acceptance or non-acceptance of the autism diagnosis. This could have implications for parental mental health, selection of therapeutic options, and ability to participate in behavioral therapy. Future studies can utilize the instrument to determine the predictive ability of acceptance with family and child behavioral and mental health outcomes.