Implementing the Get SET Early Model in a Community Setting to Lower the Age of ASD Diagnosis

Abstract

Objective: The objective of this study was to implement a validated, university-based early detection program, the Get SET Early model, in a community-based setting. Get SET was developed to improve Screening, Evaluation, and Treatment referral practices. Specifically, its purpose was to lower the age of diagnosis and enable toddlers with autism spectrum disorder (ASD) to begin treatment by 36 months. Methods: One hundred nine pediatric health care providers were recruited to administer the Communication and Symbolic Behavior Scales Developmental Profile Infant-Toddler Checklist at 12-month, 18-month, and 24-month wellbaby visits and referred toddlers whose scores indicated the need for a developmental evaluation. Licensed psychologists were trained to provide diagnostic evaluations to toddlers as young as 12 months. Mean age of diagnosis was compared with current population rates. Results: In 4 years, 45,504 screens were administered at well-baby visits, and 648 children were evaluated at least 1 time. The overall median age for ASD diagnosis was 22 months, which is significantly lower than the median age reported by the CDC (57 months). For children screened at 12 months, the age of first diagnosis was significantly lower at 15 months. Of the 350 children who completed at least 1 follow-up evaluation, 323 were diagnosed with ASD or another delay, and 239 (74%) were enrolled in a treatment program. Conclusion: Toddlers with ASD were diagnosed nearly 3 years earlier than the most recent CDC report, which allowed children to start a treatment program by 36 months. Overall, Get SET Early was an effective strategy for improving the current approach to screening, evaluation, and treatment. Efforts to demonstrate sustainability are underway.

Delay of diagnosis in autism spectrum disorder and its influencing factors

“…Studies have shown that implementing active screening programs can greatly aid in the early diagnosis of autistic children (17,19,54). Therefore, it is recommended that children undergo regular well-child care during the preschool period.…”

“…However, there is considerable variation in the age at which ASD is diagnosed across different countries. Although experienced clinicians are capable of diagnosing ASD in children before they reach the age of 2, the average age of diagnosis (AOD) reported internationally is between 4 and 5 years, indicating a signi cant delay in diagnosis (17)(18)(19)(20)(21)(22)(23)(24)(25). Despite these efforts, con icts and obstacles still exist in this eld (26,27).…”

Consistency between parent report and direct assessment of development in toddlers with autism spectrum disorder and other delays: Does sex assigned at birth matter?

“…The overarching goal of the Get SET Early model was to lower the age of autism diagnosis and treatment starting at the pediatric level. In the parent study, a network of 109 pediatric healthcare professionals (PHPs) from 13 practices were recruited across the Phoenix metropolitan area and trained to implement a structured universal screening and referral procedure (see Smith et al, 2022). PHPs in the network agreed to screen universally at 12‐, 18‐, and 24‐month well‐visits using a standardized questionnaire, the Communication and Symbolic Behavior Scales Developmental Profile Infant–Toddler Checklist (ITC) (Wetherby & Prizant, 2002; Wetherby et al, 2008).…”

“…Participants included 646 toddlers who received developmental evaluations as part of a larger federally funded project assessing the feasibility of replicating a revised version of the 1-Year Well-Baby Check-Up Approachthe Get SET Early Model-in a new city (see Pierce et al, 2011Pierce et al, , 2021Smith et al, 2022). The overarching goal of the Get SET Early model was to lower the age of autism diagnosis and treatment starting at the pediatric level.…”