Skip to main content
SpringerLink
Log in

Rigorous Translation and Cultural Adaptation of an Autism Screening Tool: First Years Inventory as a Case Study

  • Original Paper
  • Published:
Journal of Autism and Developmental Disorders Aims and scope Submit manuscript

Abstract

Screening tools for autism spectrum disorders serve a vital role in early identification of all children who may need evaluation and support. Recent studies suggest that traditional methods used in this field to translate such tools may be insufficient for maintaining linguistic, construct, or technical equivalence, resulting in screening tools that do not meet high psychometric standards in the new population. This study implemented a rigorous translation and cultural adaptation process by translating the First Years Inventory v3.1 (Baranek et al. First year inventory (FYI) 3.1. University of North Carolina at Chapel Hill Chapel Hill, NC, 2003) for a US-based Spanish-speaking population. A description of this process is provided with results from data collected during each phase. The unique challenges that were identified and addressed are detailed for future translation teams.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Log in via an institution

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Institutional subscriptions

Similar content being viewed by others

References

  • Acquadro, C., Jambon, B., Ellis, D., & Marquis, P. (1996). Language and translation issues. In B. Spilker (Ed.), Quality of life and pharmaco economics in clinical trials (pp. 575–585). Philadelphia: Lippincott-Raven Publishers.

    Google Scholar 

  • Acquadro, C., Conway, K., Hareendran, A., & Aaronson, N. (2008). Literature review of methods to translate health-related quality of life questionnaires for use in multinational clinical trials. Value in Health, 11, 509–521.

    Article  PubMed  Google Scholar 

  • Baio, J., Wiggins, L., Christensen, D. L., Maenner, M. J., Daniels, J., Warren, Z., et al. (2018). Prevalence of autism spectrum disorder among children aged 8 years—Autism and developmental disabilities monitoring network 11 sites, United States, 2014. MMWR Surveillance Summaries, 67(6), 1.

    Article  PubMed Central  Google Scholar 

  • Baranek, G. (1999). Autism during infancy: A restrospective video analysis of sensory-motor and social behaviors at 9–12 months of age. Journal of Autism and Development Disorders, 29(3), 213–224.

    Article  Google Scholar 

  • Baranek, G., Watson, L. R., Crais, E., Turner-Brown, L., & Reznik, S. (2013). First year inventory (FYI) 3.1. Chapel Hill, NC: University of North Carolina at Chapel Hill.

    Google Scholar 

  • Baranek, G., Watson, L. R., Crais, E., & Reznik, S. (2003). First year inventory (FYI) 2.0. Chapel Hill, NC: University of North Carolina at Chapel Hill.

    Google Scholar 

  • Beaton, D., Bombardier, C., Guillemin, F., & Ferraz, M. (2000). Guidelines for the process of cross-cultural adaptation of self-report measures. Spine, 25, 3186–3191.

    Article  PubMed  Google Scholar 

  • Behr, D. (2017). Assessing the use of back translation: The shortcomings of back translation as a quality testing method. International Journal of Social Research Methodology, 20, 573–584.

    Article  Google Scholar 

  • Ben-Sasson, A., & Carter, A. (2012). The application of the first year inventory for ASD screening in Israel. Journal of Autism and Developmental Disorders, 42, 1906–1916.

    Article  PubMed  Google Scholar 

  • Blacher, J., Cohen, S., & Azad, G. (2014). In the eye of the beholder: Reports of autism symptoms by Anglo and Latino mothers. Research in Autism Spectrum Disorders, 8, 1648–1656.

    Article  Google Scholar 

  • Brennan, L., Fein, D., Como, A., Rathwell, I., & Chen, C. (2016). Use of the modified checklist for autism, revised with follow up-albanian to screen for ASD in Albania. Journal of Autism and Developmental Disorders, 46, 3392–3407.

    Article  PubMed  PubMed Central  Google Scholar 

  • Bricker, D., & Squires, J. (1999). Ages and stages questionnaire (ASQ) (2nd ed.). Baltimore, MD: Paul H. Brookes.

    Google Scholar 

  • Canal-Bedia, R., García-Primo, P., Martín-Cilleros, M., Santos-Borbujo, J., Guisuraga-Fernández, Z., Herráez-García, L., et al. (2011). Modified checklist for autism in toddlers: Cross-cultural adaptation and validation in Spain. Journal of Autism and Developmental Disorders, 41, 1342–1351.

    Article  PubMed  Google Scholar 

  • Chamak, B., Bonniau, B., Oudaya, L., & Ehrenberg, A. (2011). The autism diagnostic experiences of French parents. Autism, 15(1), 83–97.

    Article  PubMed  Google Scholar 

  • Chen, Y., Davis, V., Watson, L. R., Crais, E., Turner-Brown, L., et al. (2018). Examination of developmental sensitivity of items on the revised FYI screener for infants at risk for later diagnosis of autism. Poster presented at the American Occupational Therapy Association Annual Conference, Salt Lake City, Utah.

  • Colina, S., Marrone, N., Ingram, M., & Sanchez, D. (2017). Translation quality assessment in health research: A functionalist alternative to back-translation. Evaluation & the Health Professions, 40, 267–293.

    Article  Google Scholar 

  • Cuesta-Gomez, J., Manzone, L. A., & Posada-De-la-Paz, M. (2016). Modified checklist for autism in toddlers cross-cultural adaptation for Argentina. International Journal of Developmental Disabilities, 62(2), 117–123.

    Article  Google Scholar 

  • Dawson, G. (2008). Early behavioral intervention, brain plasticity, and the prevention of autism spectrum disorder. Development and Psychopathology, 20, 775–803.

    Article  PubMed  Google Scholar 

  • Dawson, G., Rogers, S., Munson, J., Smith, M., Winter, J., Greenson, J., et al. (2010). Randomized, controlled trial of an intervention for toddlers With autism: The Early Start Denver Model. Pediatrics, 125(1), e17–e23.

    Article  PubMed  Google Scholar 

  • Dietz, C., Swinkels, S., Van Daalen, E., Van Engeland, H., & Buitelaar, J. (2006). Screening for autistic spectrum disorder in children aged 14–15 months. II: Population screening with the Early Screening of Autistic Traits Questionnaire (ESAT). Design and general findings. Journal of Autism and Developmental Disorders, 36, 713–722.

    Article  PubMed  Google Scholar 

  • DuBay, M., & Watson, L.R. (2019a). Does the M-CHAT-R/F work the same in Spanish as it does in English? Poster presented at The American Speech-Language-Hearing Association Convention, Orlando, FL.

  • DuBay, M., & Watson, L. R. (2019b). Translation and cultural adaptation of parent-report developmental assessments: Improving rigor in methodology. Research in Autism Spectrum Disorders, 62, 55–65.

    Article  Google Scholar 

  • El-Behadli, A., Neger, E., Perrin, E., & Sheldrick, R. (2015). Translations of developmental screening instruments: An evidence map of available research. Journal of Developmental and Behavioral Pediatrics, 36, 471–483.

    Article  PubMed  Google Scholar 

  • Farver, J., & Howes, C. (1993). Cultural differences in American and Mexican mother-child pretend play. Merril-Palmer Quarterly, 39, 344–358.

    Google Scholar 

  • Flaherty, J., Gaviria, M., Pathak, D., Mitchell, T., Wintrob, R., Richman, J., & Birz, S. (1988). Developing instruments for cross-cultural psychiatric research. The Journal of Nervous and Mental Disease, 176(5), 257–263.

    Article  PubMed  Google Scholar 

  • Gjersing, L., Caplehorn, J., & Clausen, T. (2010). Cross-cultural adaptation of research instruments: Language, setting, time and statistical considerations. BMC Medical Research Methodology, 10(13), 1–10.

    Google Scholar 

  • Göncü, A., Mistry, J., & Mosier, C. (2000). Cultural variations in the play of toddlers. International Journal of Behavioral Development, 24, 321–329.

    Article  Google Scholar 

  • Guiberson, M., & Rodriguez, B. (2010). Measurement properties and classification accuracy of two spanish parent surveys of language development for preschool-age children. American Journal of Speech-Language Pathology, 19(3), 225–237.

    Article  PubMed  Google Scholar 

  • Guillemin, F. (1993). Cross-cultural adaptation of health-related quality of life measures: Literature review and proposed guidelines. Journal of Clinical Epidemiology, 46, 1417–1432.

    Article  PubMed  Google Scholar 

  • Guo, C., Luo, M., Wang, X., Huang, S., Meng, Z., Shao, J., et al. (2019). Reliability and validity of the Chinese version of modified checklist for autism in toddlers, revised, with follow-up (M-CHAT-R/F). Journal of Autism and Developmental Disorders, 49, 185–196.

    Article  PubMed  Google Scholar 

  • Guthrie, W., Wallis, K., Bennett, A., Brooks, E., Dudley, J., Gerdes, M., et al. (2019). Accuracy of autism screening in a large pediatric network. Pediatrics, 144(4), e20183963.

    Article  PubMed  Google Scholar 

  • Hagell, P., Hedin, P., Meads, D., Nyberg, L., & McKenna, S. (2010). Effects of method of translation of patient-reported health outcome questionnaires: A randomized study of the translation of the rheumatoid arthritis quality of life (RAQoL) instrument for Sweden. Value in Health, 13, 425–430.

    Article  Google Scholar 

  • Hampton, J., & Strand, P. (2015). A review of level 2 parent-report instruments used to screen children aged 1.5–5 for autism: A meta-analytic update. Journal of Autism and Developmental Disorders, 45, 2519–2530.

    Article  PubMed  Google Scholar 

  • Jackson, J., Watts, J., Henry, T., List, J., Forkel, R., Mucha, P., et al. (2019). Emotion semantics show both cultural variation and universal structure. Science, 366, 1517–1522.

    Article  PubMed  Google Scholar 

  • Juneja, M., Mohanty, M., Jain, R., & Ramji, S. (2012). Ages and Stages Questionnaire as a screening tool for developmental delay in Indian children. Indian Pediatrics, 49, 457–461.

    Article  PubMed  Google Scholar 

  • Kara, B., Mukaddes, N., Altinkaya, I., Güntepe, D., Gökçay, G., & Özmen, M. (2014). Using the modified checklist for autism in toddlers in a well-child clinic in Turkey: Adapting the screening method based on culture and setting. Autism, 18(3), 331–338.

    Article  PubMed  Google Scholar 

  • Kimple, K., Bartelt, E., Wysocki, K., & Steiner, M. (2014). Performance of the modified checklist for autism in Toddlers in Spanish-speaking patients. Clinical Pediatrics, 53, 632–638.

    Article  PubMed  Google Scholar 

  • Magán-Maganto, M., Canal-Bedia, R., Hernández-Fabián, A., Bejarano-Martín, Á., Fernández-Álvarez, C., Martínez-Velarte, M., et al. (2018). Spanish cultural validation of the modified checklist for autism in toddlers, revised. Journal of Autism and Developmental Disorders, 50, 2412.

    Article  Google Scholar 

  • Maneesriwongul, W., & Dixon, J. (2004). Instrument translation process: A methods review. Journal of Advanced Nursing, 48(2), 175–186.

    Article  PubMed  Google Scholar 

  • McClure, C., Reines, S., Suchdev, P., Oladele, A., & Goodman, A. (2018). Adapting an autism screening tool for use in the DeKalb County Refugee Pediatric Clinic. Journal of Immigrant and Minority Health, 20(2), 360–369.

    Article  PubMed  PubMed Central  Google Scholar 

  • McKenna, S., & Doward, L. (2005). The translation and cultural adaptation of patient-reported outcome measures. Value In Health: The Journal Of The International Society For Pharmacoeconomics And Outcomes Research, 8(2), 89–91.

    Article  Google Scholar 

  • Mohamed, F., Zaky, E., Youssef, A., Elhossiny, R., Zahra, S., Khalaf, R., et al. (2016). Screening of Egyptian toddlers for autism spectrum disorder using an Arabic validated version of M-CHAT; report of a community-based study (Stage I). European Psychiatry, 34(2016), 43–48.

    Article  PubMed  Google Scholar 

  • Morales-Hidalgo, P., Roigé-Castellví, J., Hernández-Martínez, C., Voltas, N., & Canals, J. (2018). Prevalence and characteristics of autism spectrum disorder among spanish school-age children. Journal of Autism and Developmental Disorders, 48(9), 3176–3190.

    Article  PubMed  Google Scholar 

  • Motel, S., & Patten, E. (2012). The 10 largest Hispanic origin groups: Characteristics, rankings, top countries. Pew Research Center. Retrieved August 28, 2020 from https://www.pewresearch.org/hispanic/2012/06/27/the-10-largest-hispanic-origin-groups-characteristics-rankings-top-counties/.

  • Reznick, J., Baranek, G., Reavis, S., Watson, L., & Crais, E. (2007). A parent-report instrument for identifying one-year-olds at risk for an eventual diagnosis of autism: The first year inventory. Journal of Autism and Developmental Disorders, 37, 1691–1710.

    Article  PubMed  Google Scholar 

  • Robins, D., Fein, D., Barton, M., & Green, J. (2001). The modified checklist for autism in toddlers: An initial study investigating the early detection of autism and pervasive developmental disorders. Journal of Autism and Developmental Disorders, 31(2), 131–144.

    Article  PubMed  Google Scholar 

  • Robins, D., Casagrande, K., Barton, M., Chen, C., Dumont-Mathieu, T., & Fein, D. (2014). Validation of the modified checklist for autism intoddlers, revised with follow-up (M-CHAT-R/F). Pediatrics, 133(1), 37–45.

    Article  PubMed  PubMed Central  Google Scholar 

  • Seung, H., Ji, J., Kim, S., Sung, I., Youn, Y., Hong, G., et al. (2015). Examination of the Korean Modified Checklist of Autism in Toddlers: Item response theory. Journal of Autism and Developmental Disorders, 45, 2744–2757.

    Article  PubMed  Google Scholar 

  • Soto, S., Linas, K., Jacobstein, D., Biel, M., Migdal, T., & Anthony, B. J. (2015). A review of cultural adaptations of screening tools for autism spectrum disorders. Autism: The International Journal of Research and Practice, 19, 646–661.

    Article  Google Scholar 

  • Sousa, V., & Rojjanasrirat, W. (2011). Translation, adaptation and validation of instruments or scales for use in cross-cultural health care research: A clear and user-friendly guideline. Journal of Evaluation in Clinical Practice, 17(2), 268–274.

    Article  PubMed  Google Scholar 

  • Squires, A., Aiken, L., van den Heede, K., Sermeus, W., Bruyneel, L., Lindqvist, R., et al. (2013). A systematic survey instrument translation process for multi-country, comparative health workfor studies. International Journal of Nursing Studies, 50(2), 264–273.

    Article  PubMed  Google Scholar 

  • Stewart, A., & Napoles-Springer, A. (2000). Health-related quality-of-life assessments in diverse population groups in the United States. Medical Care, 38(9), II102–II124.

    PubMed  Google Scholar 

  • Thabtah, F., & Peebles, D. (2019). Early autism screening: A comprehensive review. International Journal of Environmental Research and Public Health, 16, 3502.

    Article  PubMed Central  Google Scholar 

  • Turner-Brown, L., Baranek, G., Reznick, J., Watson, L., & Crais, E. (2013). The first year inventory: a longitudinal follow-up of 12-month-old to 3-year-old children. Autism, 17, 527–540.

    Article  PubMed  Google Scholar 

  • Ware, J., Gandek, B., & Keller, S. (1996). Evaluating instruments used cross-nationally: Methods from the IQOLA Proyect. In B. Spilker (Ed.), Quality of life and pharmacoeconomics in clinical trials (2nd ed., pp. 681–692). Philadelphia: Lippincott-Raven Publishers.

    Google Scholar 

  • Wiggins, L., Bakeman, R., Adamson, L., & Robins, D. (2007). The utility of the Social Communication Questionnaire in screening for autism in children referred for early intervention. Focus on Autism and Other Developmental Disabilities, 22(1), 33–38.

    Article  Google Scholar 

  • Willis, G. (2011). Cognitive interviewing. Thousand Oaks: SAGE Publications Inc.

    Google Scholar 

  • Windham, G., Smith, K., Rosen, N., Anderson, M., Grether, J., Coolman, R., & Harris, S. (2014). Autism and developmental screening in a public, primary care setting primarily serving Hispanics: Challenges and results. Journal of Autism and Developmental Disorders, 44, 1621–1632.

    Article  PubMed  Google Scholar 

  • Zwaigenbaum, L., Bryson, S., Rogers, T., Roberts, W., Brian, J., & Szatmari, P. (2005). Behavioral manifestations of autism in the first year of life. International Journal of Developmental Neuroscience, 23(2–3 SPEC. ISS.), 143–152.

    Article  PubMed  Google Scholar 

Download references

Acknowledgments

The project described was supported by the National Center for Advancing Translational Sciences (NCATS), National Institutes of Health, through Grant Award Number UL1TR002489. The content is solely the responsibility of the authors and does not necessarily represent the official views of the NIH. Additional funding support was provided by the PEARLS Network and the Mrs. T. H. Chan Division of Occupational Science and Occupational Therapy. The authors would also like to thank several key contributors to this work, including Nuria Vicens, Maria Jones, Yulieth Peña McCourt, Elizabeth Crais, Sharon Williams, Lucía Méndez, Valentina Vera Carrasquero, and all of the mothers, fathers, grandmothers, and aunts who welcomed us into their homes and helped us understand their perspectives.

Author information

Author notes

  1. Michaela DuBay

    Present address: Department of Human Services, School of Education and Human Development, University of Virginia, 405 Emmet St. S, Charlottesville, VA, 22904, USA

Authors and Affiliations

  1. Speech and Hearing Sciences, Department of Allied Health Sciences, School of Medicine, University of North Carolina at Chapel Hill, 321 S Columbia St., Chapel Hill, NC, 27516, USA

    Linda R. Watson, William Brinson & Danna Smith

  2. Mrs. T. H. Chan Division of Occupational Science and Occupational Therapy, University of Southern California, 1540 Alcazar St., Los Angeles, CA, 90089, USA

    Grace T. Baranek, Helen Lee, Carolina Rojevic & John Sideris

  3. University of California at San Francisco Benioff Children’s Hospital, 747 52nd St., Oakland, CA, 94609, USA

    Carolina Rojevic

  4. The PEARLS Network, Chapel Hill, NC, 27516, USA

    Michaela DuBay, Linda R. Watson, Grace T. Baranek, Helen Lee & John Sideris

Authors
  1. Michaela DuBay
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Linda R. Watson
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Grace T. Baranek
    View author publications

    You can also search for this author in PubMed Google Scholar

  4. Helen Lee
    View author publications

    You can also search for this author in PubMed Google Scholar

  5. Carolina Rojevic
    View author publications

    You can also search for this author in PubMed Google Scholar

  6. William Brinson
    View author publications

    You can also search for this author in PubMed Google Scholar

  7. Danna Smith
    View author publications

    You can also search for this author in PubMed Google Scholar

  8. John Sideris
    View author publications

    You can also search for this author in PubMed Google Scholar

Contributions

MD and LRW conceptualized and designed the work. MD collected and analyzed the data, coordinated and trained research assistants, coordinated the entire translation and cultural adaptation process, and drafted the manuscript. CR and WB served as translators and contributed to all consensus meetings. DS and WB conducted cognitive interviews and contributed to qualitative data analysis. All authors attended and contributed to all consensus meetings, contributed to editing the manuscript and approved the final version for publication.

Corresponding author

Correspondence to Michaela DuBay.

Additional information

Publisher's Note

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Supplementary Information

Below is the link to the electronic supplementary material.

Supplementary Information 1 (DOCX 21 kb)

Rights and permissions

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

DuBay, M., Watson, L.R., Baranek, G.T. et al. Rigorous Translation and Cultural Adaptation of an Autism Screening Tool: First Years Inventory as a Case Study. J Autism Dev Disord 51, 3917–3928 (2021). https://doi.org/10.1007/s10803-020-04837-1

Download citation

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s10803-020-04837-1

Keywords

Search

Navigation