Accommodations Made By Parents Raising Children with Autism Spectrum Disorder

Background: The stress associated with raising a child on the autism spectrum is well documented (e.g., Gray, 1994, 2002; Hutton & Caron, 2005). Parents of children with ASD experience higher levels of stress than parents of children who are typically developing (Rao & Beidel, 2009) and seem to experience more stress than parents of children with other types of disabilities as well (e.g., Blacher & McIntyre, 2006). Moreover, parental stress has been associated with a lack of social support and effective coping strategies (e.g., Weiss, 2002); parent depression (e.g., Montes & Halterman, 2008); the severity of children’s autism symptoms (Osborne, McHugh, Saunders, & Reed, 2008), and child behavior problems (e.g., Levavalier, Leone, & Wiltz, 2006). However, there has been limited research documenting the association between characteristics of children with ASD and family accommodations, or the manner in which parents modify daily routines in response to a child’s special needs. Identifying the accommodations made by parents raising a child with ASD will help inform parent-mediated interventions and will ultimately promote healthier family functioning.

Objectives:  (1) document the rates and cost/benefit ratio of accommodations made by parents of children with ASD across five factors of accommodations – employment, finances, social activities, family communication, and religious activities; and (2) investigate parent and child characteristics that predict the rates and cost/benefit ratio of accommodations made by parents of children with ASD.

Methods: As part of a larger study, mothers (n = 174) of young children with ASD (n = 174; between 18 and 33 months of age) were asked question during a structured interview about making accommodations due to their child’s needs in six domains. Parents were also asked to rate how costly or beneficial the accommodations were to their family on a five-point scale. The Infant Toddler Social and Emotional Assessment (ITSEA) was used to assess child dysregulation symptoms; the Toddler Behavior Assessment Questionnaire (TBAQ) was used to inhibitory control. The Parenting Stress Index-Short Form (PSI-SF) was used to assess parenting stress.

Results: Two hierarchical multiple linear regression models were used to test the relation between child dysregulation symptoms, parenting stress and accommodations made by parents. In the first model (F=8.87, p<.001), when entered together PSI [(ß = .265), p < .01] accounted for unique variance in the total number of accommodations made by parents, whereas ITSEA Dysregulation [(ß = .204), P<.01] accounted for unique variance only when entered separately. In the second model (F=16.2, p<.001), TBAQ Inhibitory Control (ß = -.28, p<.001) and PSI (ß=-.25, p<.01) each accounted for unique variance in Total Cost/Benefit of accommodations made by parents.

Conclusions: Results indicate that parent stress level and child inhibitory control predict the presence and severity of family accommodations. These results add to the limited body of research examining accommodations made by parents raising children with ASD and suggest that family support is an important factor in early intervention for children with ASD.