Get SET Early to identify and treatment refer autism spectrum disorder at 1 year and discover factors that influence early diagnosis.
Open accessAbstract
OBJECTIVES: To examine the impact of a new approach, Get SET Early, on the rates of early autism spectrum disorder (ASD) detection and factors that influence the screen-evaluate-treat chain. STUDY DESIGN: After attending Get SET Early training, 203 pediatricians administered 57 603 total screens using the Communication and Symbolic Behavior Scales Infant-Toddler Checklist at 12-, 18-, and 24-month well-baby examinations, and parents designated presence or absence of concern. For screen-positive toddlers, pediatricians specified if the child was being referred for evaluation, and if not, why not. RESULTS: Collapsed across ages, toddlers were evaluated and referred for treatment at a median age of 19 months, and those screened at 12 months (59.4% of sample) by 15 months. Pediatricians referred one-third of screen-positive toddlers for evaluation, citing lack of confidence in the accuracy of screen-positive results as the primary reason for nonreferral. If a parent expressed concerns, referral probability doubled, and the rate of an ASD diagnosis increased by 37%. Of 897 toddlers evaluated, almost one-half were diagnosed as ASD, translating into an ASD prevalence of 1%. CONCLUSIONS: The Get SET Early model was effective at detecting ASD and initiating very early treatment. Results also underscored the need for change in early identification approaches to formally operationalize and incorporate pediatrician judgment and level of parent concern into the process.
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As part of the Get SET Early initiative, hundreds of local pediatricians have been trained to screen and refer children for assessment as early as possible, which could result in higher identification of ASD, especially at early ages.
“As part of the initiative, hundreds of local pediatricians have been trained to screen and refer children for assessment as early as possible, which could result in higher identification of ASD, especially at early ages (17).”
Local factors likely contribute to early identification at the California site, such as hundreds of pediatricians participating in the Get SET Early model and a state-funded regional center that provides evaluations and service coordination for persons with disabilities and their families.
“Local factors likely contribute to early identification at the California site, such as hundreds of pediatricians participating in the Get SET Early model (27) and a state-funded regional center that provides evaluations and service coordination for persons with disabilities and their families”
The "Get SET Early" program has trained hundreds of pediatricians to developmentally screen children at well-baby examinations and refer them for evaluation when indicated.
“For example, the “Get SET Early” program has trained hundreds of pediatricians to developmentally screen children at well-baby examinations and refer them for evaluation when indicated (16).”
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“Applying an identical approach used in previous reports [20, 32, 36–39], we recruited a new cohort of toddlers through community referral and a population-based screening method in collaboration with pediatricians called the Get SET Early [40], which was formerly known as the 1-Year Well-Baby Check-Up Approach [38, 39…”
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“Pierce et al. (2021) Delayed or atypical language patterns, including pragmatic language difficulties even in fluent speakers.”
A predictive ensemble classifier for the gene expression diagnosis of ASD at ages 1 to 4 years
Bao, B., Zahiri, J., Gazestani, V., Lopez, L., Xiao, Y., Kim, R., Wen, T. H., Chiang, A. W. T., Nalabolu, S. R., Pierce, K., et al. (2022) · Molecular Psychiatry · doi:10.1038/s41380-022-01826-x · Cited by 10 · see citing works
“About 70% of toddlers were recruited from the general population using an early screening, detection, and diagnosis strategy called the Get SET Early procedure [50].”
Self-citationImplementing the Get SET Early Model in a Community Setting to Lower the Age of ASD Diagnosis
Smith, C. J., James, S., Skepnek, E., Leuthe, E., Outhier, L. E., Avelar, D., Barnes, C. C., Bacon, E. C., & Pierce, K. (2022) · Journal of Developmental & Behavioral Pediatrics · doi:10.1097/dbp.0000000000001130 · Cited by 9 · see citing works
“Get SET was implemented digitally in San Diego, and their results illustrate the many benefits beyond accurate tracking.(23) The obvious disparity between the number of failed screens and evaluations indicates that a substantial number of parents do not follow through with an evaluation based on a failed screening.”
MethodResultInfluentialSelf-citationCommunication Assessment and Intervention
Sigafoos, J., Carnett, A., Schlosser, R. W., O’Reilly, M. F., & Lancioni, G. E. (2023) · Autism and child psychopathology series · doi:10.1007/978-3-031-27587-6_9 · Cited by 10 · see citing works
Nazari, S., Ramos‐Cabo, S., Nalabolu, S. R., Barnes, C. C., Andreason, C., Zahiri, J., Esquivel, A., Arias, S. J., Grzybowski, A., Lombardo, M. V., et al. (2025) · Nature Human Behaviour · doi:10.1038/s41562-025-02132-6 · Cited by 10 · see citing works
“Other possible issues relating to the use of the Get SET Early model is the fact that it is unlikely that extremely-high-functioning individuals with ASD will be detected using developmental screening tools, such as the CSBS, that rely on the presence of observable symptoms.”
InfluentialSelf-citationde Marchena, A. B., Wieckowski, A. T., Algur, Y., Williams, L. N., Fernandes, S. J., Thomas, R. P., McClure, L. A., Dufek, S., FEIN, D. A., Stahmer, A. C., et al. (2023) · Autism Research · doi:10.1002/aur.2933 · Cited by 9 · see citing works
“…being concerned about their child’s development in infancy (Richards et al., 2016), and autism can be diagnosed reliably by the second birthday (Pierce et al., 2021; Wieckowski, Hamner, et al., 2021), demonstrating that detection and diagnosis of autism can happen during the toddler years in…”
BackgroundDificuldade no diagnóstico precoce do Transtorno do Espectro Autista
da Silva, N. M. (2022) · Revista Eletrônica Acervo Médico · doi:10.25248/reamed.e11000.2022 · Cited by 9 · see citing works
James, S., Hallur, S., Anbar, J. S., Matthews, N. L., Pierce, K., & Smith, C. J. (2023) · Autism Research · doi:10.1002/aur.2927 · Cited by 7 · see citing works
“…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 Approach— the Get SET Early Model—in a new city (see Pierce et al., 2011, 2021; Smith et al., 2022).”
Self-citationThe Influence of Policy on Early Diagnosis and Other Autism Services: a Narrative Review
Lindly, O. J., Abate, D. J., Park, H. J., Kuhn, J., Fuchu, P., Feinberg, E., & Broder‐Fingert, S. (2024) · Review Journal of Autism and Developmental Disorders · doi:10.1007/s40489-023-00423-0 · Cited by 6 · see citing works
“…instance, family navigation (DiGu-iseppi et al., 2021; Feinberg et al., 2016, 2021), “fast-track” autism clinics (Broder-Fingert et al., 2019a, 2019b; Pierce et al., 2021), training for primary care clinicians on the topic of autism (e.g., the Extension for Community Healthcare Outcomes model;…”
Nurse, K. M., Janus, M., Birken, C. S., Keown‐Stoneman, C. D. G., Omand, J. A., Maguire, J. L., Reid‐Westoby, C., Duku, E., Mamdani, M., Tremblay, M. S., et al. (2022) · Academic Pediatrics · doi:10.1016/j.acap.2022.09.004 · Cited by 6 · see citing works
A Novel Eye-tracking and Audio Hybrid System for Autism Spectrum Disorder Early Detection
Zhang, A. (2023) · IEEE International Conference on Data Science and Computer Application (ICDSCA) · doi:10.1109/icdsca59871.2023.10393215 · Cited by 5 · see citing works
“These factors contribute to delayed ASD diagnosis, preventing many children from receiving essential treatment that could potentially improve their quality of life dramatically [4].”
BackgroundEarly detection of neurodevelopmental disorders in paediatric primary care: A scoping review
O’Hara, P. T., Cabrejo, P. T., & Vause‐Earland, T. (2023) · Family Practice · doi:10.1093/fampra/cmad072 · Cited by 5 · see citing works
Wieckowski, A. T., Liz, G. P., de Marchena, A. B., FEIN, D. A., Barton, M. L., Vivanti, G., & Robins, D. L. (2024) · Autism · doi:10.1177/13623613241252312 · Cited by 4 · see citing works
“…only about one third of children who screen at higher likelihood of autism are referred to a specialist for evaluation (Monteiro et al., 2019; Pierce et al., 2021), demonstrating that high rates of autism-specific screening may not translate to increases in subsequent referrals for an…”
Pham, C., Bacon, E. C., Grzybowski, A., Barnes, C. C., Arias, S. J., Xu, R., Lopez, L., Courchesne, E., & Pierce, K. (2023) · Autism · doi:10.1177/13623613221147416 · Cited by 5 · see citing works
“Further details regarding this process can be found in the 2021 Get SET Early manuscript (Pierce et al., 2021).”
BackgroundMethodInfluentialSelf-citationMartin, A. M., Keehn, B., Paxton, A., Ciccarelli, M. R., & Keehn, R. M. (2024) · Journal of Developmental & Behavioral Pediatrics · doi:10.1097/dbp.0000000000001298 · Cited by 3 · see citing works
“16 Prior findings have shown that developmental concerns are influenced by race and ethnicity, 17 with White caregivers more likely to report AS-related concerns, such as social concerns and restricted and repetitive behaviors, as compared with Black 18 and Latine 19 caregivers who are more likely…”
Closing the Diagnostic Gap: Early Autism Spectrum Disorder Screening for Every Child
Becerra, M. A. (2022) · Health & Social Work · doi:10.1093/hsw/hlac008 · Cited by 3 · see citing works
Far, H. E., Fallah, S. N., & Khalili, A. (2022) · International Journal of Building Pathology and Adaptation · doi:10.1108/ijbpa-12-2021-0165 · Cited by 3 · see citing works
Nurse, K. M., Parkin, P. C., Keown‐Stoneman, C. D. G., Bayoumi, I., Birken, C. S., Maguire, J. L., Macarthur, C., & Borkhoff, C. M. (2023) · The Journal of Pediatrics · doi:10.1016/j.jpeds.2023.113769 · Cited by 3 · see citing works
Mandelli, V., Busuoli, E. M., Godel, M., Kojovic, N., Sinai-Gavrilov, Y., Gev, T., Contaldo, A., Courchesne, E., Pierce, K., Golan, O., et al. (2025) · medRxiv · doi:10.1101/2025.04.14.25325786 · Cited by 3 · see citing works
“These observations are highly relevant to the discussion centered around the need for earlier diagnosis in order to begin interventions earlier (Dawson, 2008; Lombardo et al., 2021; Pierce et al., 2021; Zwaigenbaum et al., 2015).”
Self-citationShilpa, R., Vinay, B. J. V. S., & Rajendra, A. B. (2025) · International Journal of Developmental Disabilities · doi:10.1080/20473869.2025.2563740 · Cited by 2 · see citing works
“In high-income countries, such as the U.S. and the U.K., AI and biomarker-based tools have been integrated into research and pilot clinical models, with structured screening and telehealth showing positive outcomes (Pierce et al. 2021).”
Primary Care Pediatricians’ Referral Decisions for Autism in Early Childhood: A Systematic Review
Attar, S. M., Scott, S., Chiu, M., Broder‐Fingert, S., & Stone, W. L. (2026) · PEDIATRICS · doi:10.1542/peds.2024-069168 · Cited by 3 · see citing works
El-Ansary, A. K., AL-Ayadhi, L. Y., Alhakbany, M. A., Polyakova, V., & Suchkov, S. (2024) · International journal for autism challenges & solution. · doi:10.54878/c0yn1911 · Cited by 3 · see citing works
Disrupted intrinsic connectivity links to language and social deficits in toddlers with autismPreprint
Xiao, Y., Wen, T. H., Kupis, L. B., Eyler, L. T., Goel, D., Lombardo, M. V., Pierce, K., & Courchesne, E. (2021) · bioRxiv (Cold Spring Harbor Laboratory) · doi:10.1101/2021.10.08.463640 · Cited by 2 · see citing works
Self-citationTaluja, V., Nazari, S., Zahiri, J., Garmire, L. X., Pierce, K., Xiao, Y., & Courchesne, E. (2024) · medRxiv · doi:10.1101/2024.05.30.24308230 · Cited by 2 · see citing works
“Participants were recruited via the GET SET Early Approach 19 .”
MethodSelf-citationThe interaction between social and communication skills in individuals with intellectual disability
Channell, M. M., & Mattie, L. J. (2023) · International review of research in developmental disabilities · doi:10.1016/bs.irrdd.2023.08.001 · Cited by 1 · see citing works
Tait, K., Wilson, J., & Sigafoos, J. (2024) · Research and Practice in Intellectual and Developmental Disabilities · doi:10.1080/23297018.2024.2315464 · Cited by 1 · see citing works
Developmental screening at 18 months using the Nipissing District Developmental Screen
Borkhoff, C. M., Imsirovic, H., Bayoumi, I., Macarthur, C., Nurse, K. M., To, T. M., Feldman, M., Lau, E., Knight, B. D., Birken, C. S., et al. (2025) · Paediatrics & Child Health · doi:10.1093/pch/pxaf023 · Cited by 1 · see citing works
Borkhoff, C. M., Imsirovic, H., Bayoumi, I., Macarthur, C., Nurse, K. M., To, T. M., Feldman, M. E., Lau, E., Knight, B. D., Birken, C. S., et al. (2025) · PLoS ONE · doi:10.1371/journal.pone.0326751 · Cited by 1 · see citing works
Language and Social Regions Are Affected in Toddlers with Autism and Predict Later Language OutcomePreprint
Duan, K., Eyler, L. T., Pierce, K., Lombardo, M. V., Datko, M., Hagler, D. J., Taluja, V., Zahiri, J., Campbell, K. M., Barnes, C. C., et al. (2022) · medRxiv · doi:10.1101/2022.10.25.22281531
Self-citationAnbar, J. S., Matthews, N. L., James, S., Ariff, A., Pierce, K., & Smith, C. J. (2023) · Journal of Autism and Developmental Disorders · doi:10.1007/s10803-022-05890-8
“…study (Smith et al., 2022 ) that investigated the effects of the Get SET Early Model, which was designed to identify autism and developmental disorders in toddlers through universal developmental screening in the general population at 12-, 18, and 24-month well-baby visits (Pierce et al., 2021).”
Self-citationAge of Autism Spectrum Disorder diagnosis and associated factors
Stojanovska, I. (2023) · Journal of Health and Rehabilitation Sciences · doi:10.33700/jhrs.2.1.66
Early Detection of Neurodevelopmental Disorders in Pediatric Primary Care: A Scoping Review
O’Hara, P. T., Cabrejo, P. T., & Vause‐Earland, T. (2023) · American Journal of Occupational Therapy · doi:10.5014/ajot.2023.77s2-po205
Development of Communications Identification Matrix of Early Screening for Autism Children
Cahyadi, M., Aqilah, T. S., Ediyanto, E., Junaidi, A. R., & Jatiningsiwi, T. G. (2023) · Discourse and Communication for Sustainable Education · doi:10.2478/dcse-2023-0016
Age of Autism Spectrum Disorder Diagnosis and Patient-Centered Medical Home Components
Limbers, C. A., Zeleznik, T. S., Beuley, G., Milliken, A., Hernandez, E., & Ryan-Pettes, S. R. (2024) · Journal of Clinical Psychology in Medical Settings · doi:10.1007/s10880-024-10035-3
“These findings coupled with literature that indicates routine developmental screening was associated with earlier identification of ASD (Pierce et al., 2021) suggest children who receive care in a PCMH may be more likely to receive a timely ASD diagnosis.”
CDC autism prevalence numbers warrant attention—but not in the way RFK Jr. proposes
Waterhouse, L. H. (2025) · The Transmitter · doi:10.53053/awcv2549
School-Based Universal Screening for Autism
James, S., Smith, C. J., Boyd, S., Doebler, T., Madigan, R., & Matthews, N. L. (2025) · School Psychology Review · doi:10.1080/2372966x.2025.2503135
“…when pediatricians do not refer children for a formal evaluation because of the absence of parent or pediatrician concerns (Monteiro et al., 2019; Pierce et al., 2021; Zuckerman et al., 2015), and disparities in access to formal diagnostic evaluations (Lappé et al., 2018; Mandell et al., 2009;…”
InfluentialIndividual Psychology Practice, R., & Coman, A.-C. (. (2025) · Journal of Educational Sciences & Psychology · doi:10.51865/jesp.2025.1.14
Chuang, P.-C., Hou, Y., Iao, L., & Wu, C. (2025) · Research in Autism · doi:10.1016/j.reia.2025.202645
Xiao, Y., Wen, T. H., Kupis, L. B., Eyler, L. T., Taluja, V., Troxel, J., Goel, D., Lombardo, M. V., Pierce, K., & Courchesne, E. (2023) · Figshare · doi:10.6084/m9.figshare.22623109
Self-citationCourchesne, E., Taluja, V., Nazari, S., Aamodt, C., Pierce, K., Duan, K., Stophaeros, S. L., Lopez, L., Barnes, C. C., Troxel, J., et al. (2024) · Figshare · doi:10.6084/m9.figshare.26725550
Self-citationCourchesne, E., Taluja, V., Nazari, S., Aamodt, C., Pierce, K., Duan, K., Stophaeros, S. L., Lopez, L., Barnes, C. C., Troxel, J., et al. (2024) · Figshare · doi:10.6084/m9.figshare.26725556
Self-citationCourchesne, E., Taluja, V., Nazari, S., Aamodt, C., Pierce, K., Duan, K., Stophaeros, S. L., Lopez, L., Barnes, C. C., Troxel, J., et al. (2024) · Figshare · doi:10.6084/m9.figshare.26725559
Self-citationCourchesne, E., Taluja, V., Nazari, S., Aamodt, C., Pierce, K., Duan, K., Stophaeros, S. L., Lopez, L., Barnes, C. C., Troxel, J., et al. (2024) · Figshare · doi:10.6084/m9.figshare.26725553
Self-citationCourchesne, E., Taluja, V., Nazari, S., Aamodt, C., Pierce, K., Duan, K., Stophaeros, S. L., Lopez, L., Barnes, C. C., Troxel, J., et al. (2024) · Figshare · doi:10.6084/m9.figshare.26725562
Self-citationMelinda, Away, Y., Gazali, S., Ardani, E. R., Fahmi, Purnamasari, P. D., Li, N., Yan, R., & Nur, M. S. (2025) · International Conference on Computer System, Information Technology, and Electrical Engineering (COSITE) · doi:10.1109/cosite68330.2025.11414291
“Cleaner signals enhance the reliability of automated diagnostic systems and support early intervention strategies [21].”
Conti, E., Ieri, F., Calderoni, S., Apicella, F., Chericoni, N., Costanzo, V., Marchi, V., Guzzetta, A., & Colombi, C. (2026) · Frontiers in Psychiatry · doi:10.3389/fpsyt.2026.1676968
“Indeed, a growing body of evidence suggests that providing intervention for ASD before 24 months of age may be especially effective, due to the heightened neurodevelopmental plasticity typical of this early developmental period (18, 19).”
DIAGNÓSTICO DE AUTISMO NA PRIMEIRA INFÂNCIA: REVISÃO INTEGRATIVA SOBRE MÉTODOS DE DETECÇÃO PRECOCE
Teixeira, A. L., Machado, M. E. P. T., Lessa, N. M., & Aloise, M. L. R. (2026) · RECIMA21 - Revista Científica Multidisciplinar · doi:10.47820/recima21.v7i6.8289
Predicting early intervention outcomes in autism via individual participant data mega-analysis
Mandelli, V., Busuoli, E. M., Godel, M., Kojovic, N., Sinai-Gavrilov, Y., Gev, T., Contaldo, A., Courchesne, E., Pierce, K., Golan, O., et al. (2026) · Molecular Autism · doi:10.1186/s13229-026-00736-x · Cited by 1 · see citing works
“The push for earlier diagnosis and intervention is also paramount [9, 10] and predicated on the idea that there is higher probability of facilitating more positive outcomes because of the greater neural plasticity offered during the earliest periods of neurodevelopment [11].”
Self-citationAutism Spectrum Disorder Detection from facial images using Deep Convolutional Neural Networks
Ghrouda, M., Basly, H., & Sayadi, F. E. (2026) · International Conference on Control, Decision and Information Technologies (CoDIT) · doi:10.1109/codit70676.2026.11630858
“To apply these insights, specialized screening tools, such as the “Get SET Early” model [13] and the Early Screening for Autism and Communication Disorders (ESAC) [14], have been created and effectively tested for identifying autistic traits in children as early as 12 months of age.”
- Authors
- Pierce, K., Gazestani, V., Bacon, E., Courchesne, E., Cheng, A., Barnes, C. C., Nalabolu, S., Cha, D., Arias, S., Lopez, L., Pham, C., Gaines, K., Gyurjyan, G., Cook-Clark, T., & Karins, K.
- Affiliations
- University of California San Diego (US)
- Corresponding author
- Pierce, Karen
- ORCID
- Venue
- The Journal of Pediatrics
- Publisher
- Elsevier BV
- Published
- 2021-09
- Volume
- 236
- Pages
- 179-188
- ISSN
- 0022-3476 (ISSN-L)
- OpenAlex
- W3157310412
- Cited by
- 66
- References
- 57
- Citations by year
- 2026: 5 · 2025: 13 · 2024: 14 · 2023: 17 · 2022: 12 · 2021: 5
- FWCI
- 6.44
- Type
- journal article
- Language
- en
- Open access
- hybrid
- doi.org
- Licence
- Locations
- The Journal of Pediatrics (publishedVersion, cc-by-nc-nd)
- PubMed (publishedVersion)
- Funders
- National Institute of Mental Health (R01 MH104446)
- National Institutes of Health
- Topics
- Life Sciences › Neuroscience › Cognitive Neuroscience › Autism Spectrum Disorder Research
- Health Sciences › Medicine › Psychiatry and Mental health › Child Nutrition and Feeding Issues
- Social Sciences › Psychology › Clinical Psychology › Family and Disability Support Research
- Keywords
- autism spectrum disorder, early diagnosis, autism screening, pediatricians, parental concerns, autism prevalence, toddlers, early intervention
- MeSH terms
- Autism Spectrum Disorder, Age Factors, Child, Preschool, Female, Humans, Infant, Male, Mass Screening, Parents, Predictive Value of Tests, Psychometrics, Referral and Consultation, Early Diagnosis, Checklist
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