Caregiver Perspectives on Treatment for Challenging Behaviors in School-Age Children with Autism Spectrum Disorder

Background: Children with autism spectrum disorder (ASD) are at risk for challenging behaviors, including aggression, oppositional behaviors, and tantrums or meltdowns. Despite the effectiveness of pharmacological and behavioral interventions for challenging behaviors in a considerable number of children with ASD, there is little information on stakeholder perspectives about the available treatments. Increasing knowledge about stakeholder perspectives may help providers better understand preferred approaches within the ASD community and support greater treatment acceptability and compliance.

Objectives: To characterize caregiver perspectives on challenging behavior treatment for school-age children with ASD.

Methods: A survey about challenging behavior treatment use was sent to an autism research center mailing list of ~10,000 individuals. 346 caregivers of children with ASD aged 7 to 17 years who had undergone treatment to address challenging behaviors completed the survey. Kruskal-Wallis rank-sum tests and subsequent pairwise comparisons using a Wilcoxon rank-sum test with False-Discovery Rate-adjusted p-values (q<0.05) were conducted for caregiver ratings of treatment satisfaction, helpfulness, and amount of improvement maintained over time. Analyses were completed separately for children with a caregiver reported IQ≥70 and children with a caregiver reported IQ<70.

Results: Caregivers reported attempting distraction (n=214), identifying triggers and using reward systems not as part of an ABA program (hereinafter, “triggers/rewards”) (n=211), medications (n=208), Applied Behavior Analysis (ABA) (n=187), Collaborative Problem Solving (CPS) (n=101), Zones of Regulation (ZOR) (n=67), Parent-Child Interaction Therapy (PCIT) (n=42), and Unstuck and On Target (UOT) (n=19). For children with an IQ≥70, the omnibus test was significant for caregiver ratings of treatment satisfaction (χ²(8)=16.147, q=0.040); pairwise tests revealed no significant differences among treatments. The omnibus test was also significant for caregiver ratings of treatment helpfulness (χ²(8)=38.065, q<0.001) with medications rated significantly more helpful than PCIT, ABA, distraction, triggers/rewards, and ZOR; and CPS more than triggers/rewards. The omnibus test was significant for caregiver ratings of amount of improvement maintained over time (χ²(8)=45.56, q<0.001) with medications rated significantly higher than PCIT, ABA, distraction, triggers/rewards, and ZOR; CPS higher than PCIT, distraction, triggers/rewards, and ZOR; and ABA higher than triggers/rewards. For children with an IQ<70, the omnibus test was significant for caregiver ratings of treatment helpfulness (χ²(8)=19.845, q=0.011); pairwise tests revealed no significant differences between treatments. The omnibus test was not significant for caregiver ratings of treatment satisfaction (χ²(8)=13.811, q=0.087), or amount of improvement maintained over time (χ²(8)=5.709, q=0.680).

Conclusions: This is one of the first studies to examine caregiver perspectives on treatments for challenging behaviors in school-age children with ASD. For children with an IQ<70, there were no significant differences among caregiver ratings of treatment types. However, for children with an IQ≥70, medications, Applied Behavior Analysis (ABA), and Collaborative Problem Solving (CPS) received significantly higher caregiver ratings than other treatments. While medications and ABA treatments are standard-of-care interventions, CPS is an evidence-based treatment for targeting challenging behaviors in Oppositional Defiant Disorder that relatively few caregivers in our study have tried with their children. CPS may be a preferred and efficacious treatment option that is underutilized for a subgroup of children with ASD and challenging behaviors.