Parental Distress in Pursuit of ASD Diagnostic Consultation

Background: Given the numerous challenges involved in raising a child with an autism spectrum disorder (ASD), it is not surprising that parents of children with ASD report higher levels of parenting stress and psychiatric difficulties than do parents of both typically developing children and children with other developmental disabilities.  Recent research indicates that parents of young children receiving a diagnosis of ASD report potent symptoms of acute distress following diagnosis (Davis & Carter, 2008; Taylor & Warren, 2011); however, not much is known about parent functioning and distress prior to the child receiving a diagnosis.

 

Objectives: This poster represents preliminary data from a larger longitudinal study investigating the well-being of parents with concerns related to their child’s development, including ASD.  The focus is on family functioning while developing concerns, pursuing consultation, and in the immediate aftermath of a diagnosis.  Ultimately links to functioning over a more extended timeframe will be explored in order to elucidate factors associated with deleterious distress and resilience in caregivers of young children with ASD.  

 

Methods: Participants were caregivers of families of children between 18 and 39 months of age who endorsed developmental concerns, often including ASD specific concerns, and wanted to participate in a specific psychological evaluation to clarify their child’s functioning and diagnostic profile. Parents completed measures of depressive symptoms (Center of Epidemiological Studies-Depression Scale; CES-D) and provided data regarding child functioning (i.e., Achenbach Child Behavior Checklist; CBCL, Modified Checklist for Autism in Toddlers; MCHAT).  Children subsequently participated in a direct assessment (Autism Diagnostic Observation Schedule; ADOS, Mullen Scales of Early Learning; MSEL) and families were provided with explicit feedback about their child’s profile and performance.

 

Results: Data was collected on a total 24 parents (18 mothers). When looking at a measure of depression (i.e., CES-D), 50% of mothers (n=9) and 50% of fathers (n=3) endorsed clinically significant levels of depression prior to their child being evaluated. Results indicate that symptoms of depression were not related to the child’s level of cognitive functioning (i.e., MSEL) or symptom severity (i.e., ADOS).  A significant correlation was found between mothers’ scores on CES-D and number of items failed on the MCHAT (r =.759, p≤ .001). This relationship was not significant for fathers.

 

Conclusions: Ideal models of screening, identification, and diagnosis must take into account family functioning prior to and following ASD diagnosis in order to optimally join and engage caregivers in pursuit of the most appropriate services possible for children.   Enhanced awareness of pointed distress and the factors associated with such distress prior to diagnosis may provide information to adapt clinical diagnostic best practices for families of children with ASD.