Improving the quality and acceptability of autism services

About This Grant

Autism research is facing a watershed moment that requires serious scientific investigation, similar to the debate in the early 2000s regarding the vaccines-cause-autism controversy. For the past five decades, behavioral approaches to early intervention have been the primary treatment mechanism for autism. These approaches are based on the principles of Applied Behavior Analysis (ABA) and have substantial research support demonstrating their effectiveness for improving communication, adaptive behavior, and cognitive skills. With the proliferation of the neurodiversity (ND) movement, autistic advocates and allies have called into question the safety, validity, and ethics of autism intervention. There is substantial variation in the concerns raised. The majority of these interventions were developed with the goal of ameliorating autistic characteristics or loss of diagnosis which is counter to autistic priorities. While many autistics endorse supports and/or services for promoting optimal quality of life, whether or not standard autism early intervention (EI) practices fit within that framework remains to be studied. Complicating matters is substantial variation in the implementation of EI in the community. Many community-based organizations (CBOs) deliver older, more rigid versions of EI models than are currently being studied and implemented by autism intervention researchers. Naturalistic developmental behavioral interventions (NDBIs) were developed to address previous limitations in EI models, though these are not well-utilized in CBOs. While some autistics support the adaptation of NDBIs to fit within a neurodiversity-affirming intervention (NAI) framework, others call for the cessation of intervention altogether. Disparate opinions coupled with limited data regarding advocates’ concerns have created a confusing landscape for caregivers who are pressured to make decisions regarding enrolling their newly diagnosed autistic children in EI services within developmentally critical periods. Additionally, autistic individuals are likely to suffer from a lack of fit of services to improve their quality of lives. The proposed projects will address these pressing challenges using community-partnered participatory research approaches to (1) gather information from focus groups with autistics, caregivers, and EI providers regarding acceptable practices; (2) identify adaptation targets that align with an NAI framework; (3) collaboratively develop an implementation toolkit to support an NAI framework in EI services; (4) explore differences in child outcomes and ratings of quality of life across EI approaches; (5) assess provider implementation of the NAI adaptations; and (6) assess the validity of the NAI framework. This innovative work addresses critical gaps in the literature related to modernization of autism EI to address significant stakeholder concerns. It lays the groundwork for future studies directly testing the adaptations, supporting the applicant’s career goals of increasing the equity and acceptability of meaningful evidence-based practices and improving service access.