Intervention Research with Toddlers at High Risk for Autism: Lessons Learned by the Autism Speaks Toddler Treatment Network

Background: During the last decade, research on Autism Spectrum Disorder (ASD) has made tremendous progress with regard to early screening and diagnosis. For the first time, it is feasible to reliably identify red flags for autism in children under age 2 (APA, 2006). Even though prompt access to intense early intervention services is generally viewed as critical for the well-being of children with ASD and their parents (NRC, 2001), state-of-the art treatment research for toddlers with ASD is limited. The Autism Speaks Toddler Treatment Network (ASTTN) is a consortium of 8 multi-site research projects, most of which received funding in 2006 through a special RFA released to determine the efficacy of intervention for toddlers under 24 months who are at ‘high risk’ for ASD.

Objectives: The purpose of this presentation is to utilize baseline data from the ASTTN to convey similarities and differences across sites in methodologies used to generate subject referrals, identify and recruit participants, communicate  diagnosis or risk status to families, and deliver parent-mediated interventions.

Methods: Cross-site baseline data will be presented on the children enrolled in these studies in combination with results from a survey completed by the principal investigators of each research site. This survey and follow-up interview probed topics related to the techniques and challenges associated with the different methodologies used.

Results: Researchers in the ASTTN sought to find toddlers under age 2 at risk for ASD in several ways, including recruiting from pediatricians, statewide EI programs, community providers, child care organizations, as well as through community-wide screening.  Results revealed interesting patterns across sites that were associated with the age of participants (e.g., under or over 18 months), geographic area, and recruitment method. Approximately half of the toddlers across sites were not yet enrolled in any form of early intervention when they enrolled in the research intervention, and this percentage was over 80% for toddlers under 18 months at enrollment.  A variety of methods for communicating with families about risk or diagnosis of ASD in toddlers under age 2 and about promoting buy-in for participation were utilized. Two primary strategies for determining study eligibility were utilized: (1) risk status for ASD or (2) clinical diagnosis of ASD. The risk status strategy was used by a majority of research sites and involved several different combinations of assessment results to make a determination of risk. The treatments evaluated as part of the ASTTN were parent-mediated. Approaches differed significantly in terms of orientation, teaching strategies, skills targeted, and setting. Moreover, the tested interventions included adaptations of several branded interventions.

Conclusions: The collective experiences of the ASTTN in conducting treatment research with toddlers and their families provides a wealth of information with respect to recruitment and enrollment efforts and delivery of parent-mediated intervention. Discussion will focus on the many challenges ahead in working with infants and toddlers at risk for autism and their families in the context of growing early identification efforts.