(PS3-A25) What Contributes to Discrepancies in Caregiver and Youth Report of Adverse Childhood Experiences? A Mixed Method Investigation

Adverse childhood experiences (ACEs) are prevalent among autistic people, including some stressors (e.g., change or sensory-related stress) not systematically assessed by traditional measures. The Childhood Adversity and Social Stress (CASS) Scale assesses both traditional (e.g., maltreatment) and autism-related ACEs (e.g., stigma, sensory distress). This study examined (1) discrepancies in caregiver- and youth-reported ACEs, and (2) themes in qualitative feedback about items that could lend insight into informant discrepancies.

Thirty autistic (n=16) and non-autistic (hereon allistic) youth (n=14; 14-22 years) and their caregivers recruited from the community participated in a think-aloud interview while completing the CASS, providing feedback on their experience using the tool and their interpretation of items. We used inductive, thematic analysis to identify themes regarding participants’ understanding and process for answering each item and evaluated parent-youth agreement in endorsing each CASS adversity item via prevalence-adjusted, bias-adjusted K. Thematic coding of each interview was completed by two independent raters from a diverse team (sociodemographics, training level) to mitigate potential bias ( >80% inter-rater reliability). 

Agreement and themes varied by group and informant (see Tables 1 & 2). Both autistic and allistic groups demonstrated fair to substantial agreement on 4 items (witnessing violence; restrained/sedated; neglect; natural disaster). Discrepancies appeared larger for autistic v. allistic dyads on 10 items, including autism-specific stressors (e.g., social adversity, loss of autonomy), serious illness, sexual abuse, accidents/animal attacks. However, discrepancies appeared larger for allistic v. autistic dyads for reports of verbal and physical abuse. Social and sensory distress and unexpected death of loved one had fair to poor agreement in both groups. Common themes across discrepant dyads included uncertainty about whether events were severe enough to “count” as ACEs, and, for autistic youth, confusion about question wording (e.g., not endorsing items if they experienced one but not all examples listed). Caregivers of autistic youth, in particular, described perceiving events as less stressful than their child (e.g., physical abuse, accidents). In both groups, caregivers had difficulty responding to some items due to lack of insight into their child’s experiences (e.g., experiencing/witnessing violence). 

Overall, youth and caregiver reports were inconsistent across a range of adverisities (as in prior research; Goodman et al., 2010). Some items had greater convergence in autistic than allistic dyads and vice versa. While differences in item interpretation and understanding what “counts'' as an adversity contributed to discrepant responses across groups, autistic youth and their caregivers may experience additional challenges (e.g., differing perceptions of event severity, more limited awareness of children’s experience of adversity). Researchers and clinicians may consider these insights when interpreting youth- and caregiver-reported adversities, and use them to refine these measures to further improve their usability and accuracy.