Function and Frustration: How Parents of Children with Autism Understand Their Children's Disruptive Behaviors

Background and Purpose                                                                                   

On April 27, 2018, the Centers for Disease Control released data finding that autism prevalence had increased to 1 in 59 children in the US (previously 1 in 68 children) and that at 52 months, average age at diagnosis was still well beyond the point at which meaningful intervention could begin. Applied behavioral analysis (ABA) is the foremost empirically-supported intervention for autism and focuses on identifying the functional reinforcements of maladaptive or disruptive behaviors and then introducing instructional and environmental interventions that modify or extinguish undesired behaviors and encourage desired behaviors. Recent research synthesis confirms the effectiveness of ABA on modifying the disruptive and maladaptive behaviors that children with autism typically display. However, there is a lack of research on how parents and other family members experience and understand their children’s behavior and treatment, and little in the way of validated psychometric scales to assess the parent experience. This study addresses this lack by interviewing parents of children enrolled in a randomized clinical trial of ABA services regarding their experience of their children’s treatment and understanding of their children’s behavior.

Methods                                                                                   

In-depth, semi-structured, qualitative interviews approximately 45-90 minutes in length were conducted with 14 parents of children enrolled in a randomized clinical trial of ABA services in a Midwestern, university treatment clinic. Interviews were transcribed, coded thematically, and analyzed according to the qualitative description method. Parents were asked about their experience of family life before and after treatment and how they understood their children’s various behaviors.

Results

Parents’ descriptions of their understanding of their children’s behaviors clustered into two primary thematic topics concerning the function of the behavior, 1) communication and 2) releasing frustration. Parents understood children’s behaviors as communication attempts when children were expressing separation anxiety, a need for more communication processing time, a need for sensory breaks, or a need for concrete, black-and-white conversation. Family members including siblings reported nuanced and refined understandings of children’s communication attempts as well as learning gained from ABA treatment, with family members learning to give specific reinforcers to encourage specific behaviors. Children’s maladaptive behaviors were also seen as expressions of frustration that parents had been trained to ignore or redirect. Respondents emphasized that child frustration could easily be mistaken and parents could be misreading a communication attempt, and several respondents were hesitant about ignoring child behaviors for this reason. Parents reported using diversion and redirection as tools to address children’s disruptive behaviors, as well as adherence to a consistent schedule, although several respondents noted that reliance on consistent schedules could also precipitate expressions of frustration by children when external factors caused unavoidable disruption to schedules. 

Conclusions and Implications

Parents and other family members displayed considerable insight into children’s disruptive behaviors, with families recognizing underlying motivators of communication attempts as well as expressions of frustration by children with autism. Future research investigating how to optimize the learning experience of family members and how family members both learn from and question behavioral training can inform other social work interventions.