Autism Spectrum Disorder (ASD) is a complex, multisystem disorder that continues to affect greater percentages of children and their families worldwide and in the United States. Currently, no known cause or cure for ASD exists. Researchers emphasize genetic studies, while parents need intervention choices for their children with ASD. This study was an evaluation of the 21-year systems-based ACES Program of autism intervention from the stakeholder viewpoints of parents, professionals, and team members. Researchers maintain that parent-led interventions for ASD remain in their infancy. The ACES Program co-creates multidisciplinary, relationship-based parent-led intervention programs based on the child’s unique ASD profile and the needs of the family system to improve possibilities of optimal outcomes.
This mixed-methods evaluation study utilized surveys and telephone interviews of participants who worked with the ACES Program to develop an ACES Family Program team intervention for a minimum of 4 years. The individual viewpoints of the parents, professionals, and volunteer team members in each of the 9 cases demonstrated how the ACES Program was helpful in moving the represented children toward optimal outcomes. The participants informed this study by sharing their challenges, their suggestions to resolve challenges, and their recommendations for improving the ACES Program. They shared their experiences of the wider community regarding ASD that echoed the themes of social justice and structural inequality found through the historical search for ASD prevalence. The qualitative data analysis of the interviews supported the quantitative data analysis of the surveys.
Results indicate that, through the elements of the ACES Program, the parents became empowered leaders of their child’s individualized intervention. The parents, professionals, and volunteer team members agreed that the ACES Program elements that led the child and family toward optimal outcomes included attitudinal changes in the adults, understandable education, team support, team collaboration, and parent-professional partnerships. They offered suggestions for medical and educational professionals to improve practice. Recommendations for practice and ways in which the ACES program can further support children with ASD and their families are included.
Key Words: Autism Spectrum Disorder, Optimal Outcomes, Parent-Led Individualized Interventions, Understandable Education, Family System Support