Caregiver Training for Behavioral Problems in Adults with Autism Spectrum Disorder: A Case Series

Background: Challenging behaviors in adults with autism spectrum disorder (ASD) are prevalent and have been shown to increase caregiver stress while impeding adaptive skills development and habilitation efforts designed to increase independence. While the literature available on behavioral interventions for this population shows promising effects, practice is limited by access to qualified clinicians. Additionally, programs tend to focus on direct care delivery (therapist to adult). Interventions specifically supporting caregivers of adults with ASD are limited. The Research Unit on Behavioral Interventions (RUBI) Autism Network developed a manualized parent training program for families of children with ASD and co-occurring disruptive behaviors. RUBI utilizes techniques grounded in applied behavior analysis to teach parents how to manage child behavioral problems over 11 outpatient visits. With over a dozen published research studies, RUBI has been found to be acceptable to parents, reliably delivered by trained therapists, and effective in reducing disruptive behavior in children ages 3-14. RUBI is emerging as an important component of short-term, effective treatment for youth with ASD. In response to the shortage of efficacious interventions for adults with ASD, RUBI may be a promising approach to support caregivers grappling with the management of disruptive behaviors in adults with ASD under their care.

Objectives: Three case studies were conducted to evaluate the initial feasibility and efficacy of RUBI when delivered to caregivers of adults with ASD and co-morbid disruptive behavior problems.

Methods: RUBI was delivered to parents of three transition-age males (ages 19, 20, and 24) with a community diagnosis of ASD and caregiver-reported disruptive behaviors. Demographics (e.g., age, sex, race, school/vocational placement) were collected through medical record and intake documentation. Outcomes of interest include treatment feasibility (attendance, attrition), which denotes evidence that the treatment is acceptable to families and efficacy (reduction in disruptive behavior problems), measured through change on the parent-reported Aberrant Behavior Checklist-Irritability (ABC-I) subscale and Home Situations Questionnaire-Autism Spectrum Disorder (HSQ-ASD) at the first and last session.

Results: While originally designed to be administered over 11 sessions in a proscribed order, the therapist adapted RUBI to meet each family’s needs, with the number of sessions varying from 8 to 16. All three families completed treatment. Caregivers for the 19 year-old reported a significant decrease in explosive behavior (1 major and several partial episodes per month at intake, 1 major episode over 2 months at post-treatment), an increase in independence within the daily routine, and effective use of self-soothing strategies. Reductions on the ABC-I or HSQ-ASD were noted for two individuals [24 y.o. ABC-I decreased from 28 to 14 (50%), HSQ-ASD decreased from 3.88 to 1.67 (57%); 20 y.o. HSQ-ASD decreased from 1.25 to 0.75 (40%)].

Conclusions: Results of the three case studies indicate that RUBI could be a promising intervention for behavioral problems when delivered to caregivers of adults with ASD. Outcomes indicate high engagement in treatment and notable reductions in caregiver-reported disruptive behaviors. The variability in number and type of sessions delivered suggest that a modular approach in administration may be required.