Training caregivers to help teens with profound autism become more independent
Empowering Caregivers to Promote Child Independence and Persistence With Activities
This project will try picture-based activity schedules taught to caregivers to see if they help adolescents (10–17) with profound autism do activities more independently and give caregivers short breaks.
Quick facts
| Phase | Not applicable |
|---|---|
| Study type | Interventional |
| Enrollment | 32 (estimated) |
| Ages | 10 Years to 17 Years |
| Sex | All |
| Sponsor | University of Nebraska Academic / other |
| Locations | 1 site (Omaha, Nebraska) |
| Trial ID | NCT07059364 on ClinicalTrials.gov |
What this trial studies
Caregivers of adolescents with profound autism will be taught to use picture-based activity schedules (CAST) to increase the youths' independent, sustained engagement in meaningful activities. Participants will be assigned to receive caregiver training or continue usual routines, with families in the usual-routine group offered training after the trial. Investigators will measure children's task performance and caregivers' pre- and post-study ratings to judge feasibility and acceptability. The main aim is to determine whether this caregiver-delivered approach can reduce constant supervision demands and improve quality of life for both adolescents and caregivers.
Who should consider this trial
Good fit: Autistic adolescents aged 10–17 with severe or profound intellectual disability (DP-4 cognitive/communication scores below 70 and low ABAS-3 scores), who can complete 3–10 simple tasks with caregiver prompting and have at least one English-speaking caregiver available.
Not a fit: Those who cannot complete any simple leisure or daily living tasks independently, have unstable medical or behavioral conditions or planned changes in medications/services, or lack an English-speaking caregiver may not benefit from this intervention.
Why it matters
Potential benefit: If successful, the approach could increase adolescents' independent engagement in daily activities and give caregivers reliable short periods away from constant supervision.
How similar studies have performed: Previous caregiver-training and picture-schedule interventions have shown promise for improving independence in individuals with intellectual disability or limited verbal skills, but populations labeled as profound autism have been underrepresented in prior research.
Eligibility criteria
Show full inclusion / exclusion criteria
Inclusion Criteria: * Autistic individuals 10 to 17 years of age * Severe or profound intellectual disability diagnosis or reportedly in line with diagnostic criteria based on Autism Diagnostic Observation Schedule, Second Edition ADOS-2 * Developmental Profile 4 (DP-4) Cognitive/Communication Domain scores below 70 (Delayed) * Adaptive Behavior Assessment System (ABAS-3) Communication, Health and Safety, and Leisure Domains adaptive skill scores in the Low to Extremely Low range * Can complete between 3-10 simple leisure or daily living skill tasks or activities independently (caregiver may prompt or provide oversight) * Caregivers can remain present to assist with toileting if more than one person is needed to assist * No medication or stable medication regimen with no planned changes for study duration * Stable intervention and/or educational services with no planned changes for study duration * English spoken by at least one caregiver Exclusion Criteria: * Known serious medical condition or serious behavioral/psychiatric condition requiring immediate alternative focused intervention
Where this trial is running
Omaha, Nebraska
- Munroe-Meyer Insitute University of Nebraska Medical Center — Omaha, Nebraska, United States (Recruiting)
Study contacts
- Principal investigator: Alice Shillingsburg, PhD, BCBA-D — University of Nebraska
- Study coordinator: Alice Shillingsburg, PhD, BCBA-D
- Email: ashillingsburg@unmc.edu
- Phone: 402-559-3098
How to participate
- Review the eligibility criteria above with your treating physician.
- Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
- Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.