A comprehensive parent training program for parents of neurodivergent children with pathological demand avoidance: The Paradigm Shift Program

Importance: Although pathological demand avoidance (PDA; also known as "extreme" or "persistent" demand avoidance and persistent drive for autonomy) was first described in 1980 as a distinct behavioral profile among a subgroup of children with autism spectrum disorder, there is limited scientific evidence to support children with PDA or their parents/guardians. Objective: To establish the feasibility and acceptability of the Paradigm Shift Program Methods: Seventy-six parents/guardians of children with PDA were enrolled in the study. Prior to the start of the program, the parents/guardians completed a baseline assessment (demographic questions, program expectations, and several patient-reported outcomes [PROs] and proxy measures). At the end of the program, parents/guardians repeated the PROs and proxy measures, and completed a feasibility and acceptability questionnaire and anchor items. Results: A total of 71 parents/guardians completed the pre-program assessment, and 60 (85%) completed the end-of-program assessment. Among those with both assessments, program acceptability was high, and parents/guardians were generally satisfied with the different program elements (level of agreement >70% for agreed or strongly agreed). Parents/guardians reported significant improvement in health-related quality of life (HRQOL) in 10 of the 13 PROs (all Interpretation: The paradigm shift program was both feasible and acceptable. Furthermore, there was evidence that this program improved the HRQOL of parents/guardians as well as the behavior of children with PDA.