Advertisement

Journal of Autism and Developmental Disorders

, Volume 48, Issue 10, pp 3367–3376 | Cite as

Parental First Concerns and Timing of Autism Spectrum Disorder Diagnosis

  • Tracy A. Becerra-CulquiEmail author
  • Frances L. Lynch
  • Ashli A. Owen-Smith
  • Joseph Spitzer
  • Lisa A. Croen
Original Paper

Abstract

Specific developmental concerns can distinguish between an early versus later diagnosis of autism spectrum disorder (ASD). Caregiver survey responses of children ≥ 9 years-of-age (2012) with ASD were used to evaluate developmental concerns and associations with age of diagnosis [early (< 3 years: n = 106) vs. later (≥ 3 years: n = 432)] using logistic regression. Concerns arose at mean age 18 and 35-months for children diagnosed early versus later, respectively. Concerns about poor eye contact (aOR 1.81, CI 1.08, 3.05), pointing/gesturing (aOR 2.74, CI 1.60, 4.70), response to own name (aOR 3.03, CI 1.75, 5.23), and babbling/speaking (aOR 1.67, CI 0.98, 2.82) were associated with an early diagnosis. Caregivers and pediatricians are critical in early identification and timely entry into intervention.

Keywords

Autism spectrum disorder Parent Survey Developmental concerns Early diagnosis 

Notes

Acknowledgments

This project was funded by a grant from National Institute of Mental Health (Grant # 1U19MH092201).

Authors’ Contributions

TAB conceptualized and designed the study, carried out the analyses, drafted the initial manuscript, and approved the final manuscript as submitted. FLL provided content and critical feedback on the manuscript. Approved the final manuscript as submitted. AAO provided content and critical feedback on the manuscript. Approved the final manuscript as submitted. JS provided content and critical feedback on the manuscript. Approved the final manuscript as submitted. LAC contributed to the conceptualization of the study, critically reviewed and revised the manuscript, and approved the final manuscript as submitted.

Funding

This project was funded by a Grant from National Institute of Mental Health (Grant # 1U19MH092201).

Compliance with Ethical Standards

Conflict of interest

None of the authors have financial relationships or any conflicts of interest relevant to this article to disclose.

Ethical approval

All procedures performed in studies involving human participants were in accordance with the ethical standards of the Institutional and/or National Research Committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards. For this study analyses, formal consent was not required.

Supplementary material

10803_2018_3598_MOESM1_ESM.docx (18 kb)
Supplementary material 1 (DOCX 17 KB)

References

  1. American Academy of Pediatrics. (2017). Periodicity schedule. Retrieved July 12, 2017, from https://www.aap.org/en-us/Documents/periodicity_schedule.pdf.
  2. American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders (5th ed.). Washington, DC: American Psychiatric Association.CrossRefGoogle Scholar
  3. Autism and Developmental Disabilities Monitoring Network Surveillance Year 2006 Principal Investigators, & Centers for Disease Control and Prevention. (2009). Prevalence of autism spectrum disorders—Autism and developmental disabilities monitoring network, United States, 2006. MMWR. Surveillance Summaries: Morbidity and Mortality Weekly Report. Surveillance Summaries/CDC, 58(10), 1–20.Google Scholar
  4. Baron-Cohen, S., Wheelwright, S., Cox, A., Baird, G., Charman, T., Swettenham, J., … Doehring, P. (2000). Early identification of autism by the CHecklist for Autism in Toddlers (CHAT). Journal of the Royal Society of Medicine, 93(10), 521–525.CrossRefGoogle Scholar
  5. Becerra, T. A., Massolo, M. L., Yau, V. M., Owen-Smith, A. A., Lynch, F. L., Crawford, P. M., … Croen, L. A. (2017). A survey of parents with children on the autism spectrum: Experience with services and treatments. The Permanente Journal.  https://doi.org/10.7812/TPP/16-009.CrossRefPubMedPubMedCentralGoogle Scholar
  6. Becerra, T. A., von Ehrenstein, O. S., Heck, J. E., Olsen, J., Arah, O. A., Jeste, S. S., … Ritz, B. (2014). Autism spectrum disorders and race, ethnicity, and nativity: A population-based study. Pediatrics 134(1), e63–e71CrossRefGoogle Scholar
  7. Centers for Disease Control and Prevention. (n.d.). CDC | Milestones | Learn the Signs. Act Early. | NCBDDD. Retrieved June 15, 2017, from https://www.cdc.gov/ncbddd/actearly/milestones/index.html.
  8. Christensen, D. L., Baio, J., Van Naarden Braun, K., Bilder, D., Charles, J., & Constantino, J. N., … Centers for Disease Control and Prevention (CDC). (2016). Prevalence and characteristics of autism spectrum disorder among children aged 8 years—Autism and developmental disabilities monitoring network, 11 sites, United States, 2012. Morbidity and Mortality Weekly Report. Surveillance Summaries, 65(3), 1–23.  https://doi.org/10.15585/mmwr.ss6503a1.CrossRefPubMedGoogle Scholar
  9. Colbert, A. M., Webber, J., & Graham, R. (2016). Factors that influence autism knowledge in Hispanic cultures: A Pilot Study. Journal of Racial and Ethnic Health Disparities.  https://doi.org/10.1007/s40615-016-0213-4.CrossRefPubMedGoogle Scholar
  10. Coleman, K. J., Lutsky, M. A., Yau, V., Qian, Y., Pomichowski, M. E., Crawford, P. M., … Croen, L. A. (2015). Validation of autism spectrum disorder diagnoses in large healthcare systems with electronic medical records. Journal of Autism and Developmental Disorders, 45(7), 1989–1996.  https://doi.org/10.1007/s10803-015-2358-0.CrossRefPubMedPubMedCentralGoogle Scholar
  11. Committee on Children With Disabilities. (2001). American Academy of Pediatrics: The pediatrician’s role in the diagnosis and management of autistic spectrum disorder in children. Pediatrics, 107(5), 1221–1226.CrossRefGoogle Scholar
  12. Coonrod, E. E., & Stone, W. L. (2004). Early concerns of parents of children with autistic and nonautistic disorders. Infants & Young Children, 17(3), 258–268.CrossRefGoogle Scholar
  13. De Giacomo, A., & Fombonne, E. (1998). Parental recognition of developmental abnormalities in autism. European Child & Adolescent Psychiatry, 7(3), 131–136.CrossRefGoogle Scholar
  14. Fountain, C., & Bearman, P. (2011). Risk as social context: Immigration policy and autism in California. Sociological Forum, 26(2), 215–240.  https://doi.org/10.1111/j.1573-7861.2011.01238.x.CrossRefPubMedGoogle Scholar
  15. Fountain, C., King, M. D., & Bearman, P. S. (2011). Age of diagnosis for autism: Individual and community factors across 10 birth cohorts. Journal of Epidemiology and Community Health, 65(6), 503–510.  https://doi.org/10.1136/jech.2009.104588.CrossRefPubMedGoogle Scholar
  16. Green, D., Chandler, S., Charman, T., Simonoff, E., & Baird, G. (2016). Brief report: DSM-5 sensory behaviours in children with and without an autism spectrum disorder. Journal of Autism and Developmental Disorders, 46(11), 3597–3606.  https://doi.org/10.1007/s10803-016-2881-7.CrossRefPubMedGoogle Scholar
  17. Guinchat, V., Chamak, B., Bonniau, B., Bodeau, N., Perisse, D., Cohen, D., & Danion, A. (2012). Very early signs of autism reported by parents include many concerns not specific to autism criteria. Research in Autism Spectrum Disorders, 6(2), 589–601.  https://doi.org/10.1016/j.rasd.2011.10.005.CrossRefGoogle Scholar
  18. Herlihy, L., Knoch, K., Vibert, B., & Fein, D. (2015). Parents’ first concerns about toddlers with autism spectrum disorder: Effect of sibling status. Autism: The International Journal of Research and Practice, 19(1), 20–28.  https://doi.org/10.1177/1362361313509731.CrossRefGoogle Scholar
  19. IDEA - Building The Legacy of IDEA 2004. (n.d.). Retrieved September 8, 2017, from http://idea.ed.gov/part-c/search/new.html.
  20. Kishore, M. T., & Basu, A. (2011). Early concerns of mothers of children later diagnosed with autism: Implications for early identification. Research in Autism Spectrum Disorders, 5(1), 157–163.  https://doi.org/10.1016/j.rasd.2010.03.005.CrossRefGoogle Scholar
  21. Luyster, R., Gotham, K., Guthrie, W., Coffing, M., Petrak, R., Pierce, K., … Lord, C. (2009). The autism diagnostic observation schedule—Toddler module: A new module of a standardized diagnostic measure for autism spectrum disorders. Journal of Autism and Developmental Disorders, 39(9), 1305–1320.  https://doi.org/10.1007/s10803-009-0746-z.CrossRefPubMedPubMedCentralGoogle Scholar
  22. Maenner, M. J., Schieve, L. A., Rice, C. E., Cunniff, C., Giarelli, E., Kirby, R. S., … Durkin, M. S. (2013). Frequency and pattern of documented diagnostic features and the age of autism identification. Journal of the American Academy of Child & Adolescent Psychiatry, 52(4), 401–413.e8.  https://doi.org/10.1016/j.jaac.2013.01.014.CrossRefGoogle Scholar
  23. Magaña, S., Lopez, K., Aguinaga, A., & Morton, H. (2013). Access to diagnosis and treatment services among latino children with autism spectrum disorders. Intellectual and Developmental Disabilities, 51(3), 141–153.  https://doi.org/10.1352/1934-9556-51.3.141.CrossRefPubMedGoogle Scholar
  24. Matheis, M., Matson, J. L., Burns, C. O., Jiang, X., Peters, W. J., Moore, M., … Estabillo, J. (2016). Factors related to parental age of first concern in toddlers with autism spectrum disorder. Developmental Neurorehabilitation.  https://doi.org/10.1080/17518423.2016.1211186.CrossRefPubMedGoogle Scholar
  25. Ozonoff, S., Iosif, A.-M., Baguio, F., Cook, I. C., Hill, M. M., Hutman, T., … Young, G. S. (2010). A prospective study of the emergence of early behavioral signs of autism. Journal of the American Academy of Child & Adolescent Psychiatry, 49(3), 256.e2–266.e2.  https://doi.org/10.1016/j.jaac.2009.11.009.CrossRefGoogle Scholar
  26. Ozonoff, S., Young, G. S., Steinfeld, M. B., Hill, M. M., Cook, I., Hutman, T., … Sigman, M. (2009). How early do parent concerns predict later autism diagnosis? Journal of Developmental and Behavioral Pediatrics: JDBP, 30(5), 367–375.CrossRefGoogle Scholar
  27. Paul, H.. Brookes Publishing Co., Inc. (2017). Ages & Stages Questionnaires. Retrieved October 2, 2017, from http://agesandstages.com/.
  28. Richards, M., Mossey, J., & Robins, D. L. (2016). Parents’ concerns as they relate to their child’s development and later diagnosis of autism spectrum disorder. Journal of Developmental and Behavioral Pediatrics: JDBP, 37(7), 532–540.  https://doi.org/10.1097/DBP.0000000000000339.CrossRefPubMedGoogle Scholar
  29. Sacrey, L.-A. R., Zwaigenbaum, L., Bryson, S., Brian, J., Smith, I. M., Roberts, W., … Armstrong, V. (2015). Can parents’ concerns predict autism spectrum disorder? A prospective study of high-risk siblings from 6 to 36 months of age. Journal of the American Academy of Child and Adolescent Psychiatry, 54(6), 470–478.  https://doi.org/10.1016/j.jaac.2015.03.014.CrossRefPubMedGoogle Scholar
  30. Shattuck, P. T., & Grosse, S. D. (2007). Issues related to the diagnosis and treatment of autism spectrum disorders. Mental Retardation and Developmental Disabilities Research Reviews, 13(2), 129–135.  https://doi.org/10.1002/mrdd.20143.CrossRefPubMedGoogle Scholar
  31. Szatmari, P., Chawarska, K., Dawson, G., Georgiades, S., Landa, R., Lord, C., … Halladay, A. (2016). Prospective longitudinal studies of infant siblings of children with autism: Lessons learned and future directions. Journal of the American Academy of Child and Adolescent Psychiatry, 55(3), 179–187.  https://doi.org/10.1016/j.jaac.2015.12.014.CrossRefPubMedPubMedCentralGoogle Scholar
  32. Vivanti, G., Hudry, K., Trembath, D., Barbaro, J., Richdale, A., & Dissanayake, C. (2013). Towards the DSM-5 criteria for autism: Clinical, cultural, and research implications. Australian Psychologist, 48(4), 258–261.  https://doi.org/10.1111/ap.12008.CrossRefGoogle Scholar
  33. Zablotsky, B., Colpe, L. J., Pringle, B. A., Kogan, M. D., Rice, C., & Blumberg, S. J. (2017). Age of parental concern, diagnosis, and service initiation among children with autism spectrum disorder. American Journal on Intellectual and Developmental Disabilities, 122(1), 49–61.  https://doi.org/10.1352/1944-7558-122.1.49.CrossRefPubMedPubMedCentralGoogle Scholar
  34. Zwaigenbaum, L., Bauman, M. L., Stone, W. L., Yirmiya, N., Estes, A., Hansen, R. L., … Wetherby, A. (2015). Early identification of autism spectrum disorder: Recommendations for practice and research. Pediatrics, 136(Supplement 1), S10–S40.  https://doi.org/10.1542/peds.2014-3667C.CrossRefPubMedGoogle Scholar
  35. 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: The Official Journal of the International Society for Developmental Neuroscience, 23(2–3), 143–152.  https://doi.org/10.1016/j.ijdevneu.2004.05.001.CrossRefGoogle Scholar

Copyright information

© Springer Science+Business Media, LLC, part of Springer Nature 2018

Authors and Affiliations

  • Tracy A. Becerra-Culqui
    • 1
    Email author
  • Frances L. Lynch
    • 2
  • Ashli A. Owen-Smith
    • 3
    • 4
  • Joseph Spitzer
    • 5
  • Lisa A. Croen
    • 6
  1. 1.Department of Research & EvaluationKaiser Permanente Southern CaliforniaPasadenaUSA
  2. 2.Kaiser Permanente Center for Health ResearchPortlandUSA
  3. 3.Division of Health Management and PolicyGeorgia State UniversityAtlantaUSA
  4. 4.Center for Clinical and Outcomes ResearchKaiser Permanente GeorgiaAtlantaUSA
  5. 5.Kaiser Permanente Developmental-Behavioral PediatricsSouthern California Permanente Medical GroupBaldwin ParkUSA
  6. 6.Division of ResearchKaiser Permanente Northern CaliforniaOaklandUSA

Personalised recommendations