From Trust to Consensus: Having Conversations About Autism With Families

Abbott M. Bernard P. Forge J. (2013). Communicating a diagnosis of autism spectrum disorder—a qualitative study of parents’ experiences. Clinical Child Psychology and Psychiatry, 18(3), 370–382. https://doi.org/10.1177/1359104512455813

Acar S. Blasco P. M. (2018). Guidelines for collaborating with interpreters in early intervention/early childhood special education. Young Exceptional Children, 21(3), 170–184. https://doi.org/10.1177/1096250616674516

American Speech-Language-Hearing Association. (2022). 2021 member and affiliate profile. https://www.asha.org/siteassets/surveys/2021-member-affiliate-profile.pdf

Angell A. M. Empey A. Zuckerman K. E. (2018). A review of diagnosis and service disparities among children with autism from racial and ethnic minority groups in the United States. International Review of Research in Developmental Disabilities, 55, 145–180. https://doi.org/10.1016/bs.irrdd.2018.08.003

Baron-Cohen S. (2017). Editorial perspective: Neurodiversity—a revolutionary concept for autism and psychiatry. Journal of Child Psychology and Psychiatry, 58(6), 744–747. https://doi.org/10.1111/jcpp.12703

Botha M. Hanlon J. Williams G. L. (2023). Does language matter? Identity-first versus person-first language use in autism research: A response to Vivanti. Journal of Autism and Developmental Disorders, 53, 870–878. https://doi.org/10.1007/s10803-020-04858-w

Bradshaw W. (2013). A framework for providing culturally responsive early intervention services. Young Exceptional Children, 16(1), 3–15. https://doi.org/10.1177/1096250612451757

Bruder M. B. Catalino T. Chiarello L. A. Mitchell M. C. Deppe J. Gundler D. Kemp P. LeMoine S. Long T. Muhnlenhaupt M. Prelock P. Schefkind S. Stayton V. Ziegler D. (2019). Finding a common lens: Competencies across professional disciplines providing early childhood intervention. Infants & Young Children, 32(4), 280–293. https://doi.org/10.1097/IYC.0000000000000153

Carter A. S. Briggs-Gowan M. J. Jones S. M. Little T. D. (2003). The Infant–Toddler Social and Emotional Assessment (ITSEA): Factor structure, reliability, and validity. Journal of Abnormal Child Psychology, 31, 495–514. https://doi.org/10.1023/A:1025449031360

Chen Y. H. Drye M. Chen Q. Fecher M. Liu G. Guthrie W . (2023). Delay from screening to diagnosis in autism spectrum disorder: Results from a large national health research network . The Journal of Pediatrics, 260, 113514. https://doi.org/10.1016/j.jpeds.2023.113514

Child Mind Institute. (2023, February 23). Complete guide to autism. https://childmind.org/guide/parents-guide-to-autism

Childress D. C. (2021). Pause and reflect: Your guide to a deeper understanding of early intervention practice. Paul H. Brookes Publishing Co.

Council for Exceptional Children (CEC) & The Division for Early Childhood (DEC). (2020). Initial practice-based professional preparation standards for early interventionists/early childhood special educators (EI/ECSE) (initial birth through age 8). https://exceptionalchildren.org/standards/initial-practice-based-standards-early-interventionists-early-childhood-special-educators

Division for Early Childhood. (2014). DEC recommended practices in early intervention/early childhood special education. http://www.dec-sped.org/recommendedpractices

Dow D. Day T. N. Kutta T. J. Nottke C. Wetherby A. M. (2020). Screening for autism spectrum disorder in a naturalistic home setting using the Systematic Observation of Red Flags (SORF) at 18–24 months. Autism Research, 13(1), 122–133. https://doi.org/10.1002/aur.2226

Dyer O. (2017). Measles outbreak in Somali American community follows anti-vaccine talks. BMJ: British Medical Journal, 357, Article j2378 https://doi.org/10.1136/bmj.j2378

Early Intervention Training Program at the University of Illinois. (n.d.). Working with interpreters and translators. https://blogs.illinois.edu/view/6039/406781

Fox F. Aabe N. Turner K. Redwood S. Rai D. (2017). “It was like walking without knowing where I was going”: A qualitative study of autism in a UK Somali migrant community. Journal of Autism and Developmental Disorders, 47, 305–315. https://doi.org/10.1007/s10803-016-2952-9

Gordillo M. L. Chu A. Long K. (2020). Mothers’ adjustment to autism: Exploring the roles of autism knowledge and culture. Journal of Pediatric Psychology, 45(8), 877–886. https://doi.org/10.1093/jpepsy/jsaa044

Hampton L. H. Rodriguez E. M. (2022). Preemptive interventions for infants and toddlers with a high likelihood for autism: A systematic review and meta-analysis. Autism, 26(6), 1364–1378. https://doi.org/10.1177/13623613211050433

Hardy S. Haisley L. Manning C. Fein D. (2015). Can screening with the Ages and Stages Questionnaire detect autism? Journal of Developmental and Behavioral Pediatrics, 36(7), 536–543. https://doi.org/10.1097/DBP.0000000000000201

Hussein A. M. Pellicano E. Crane L. (2019). Understanding and awareness of autism among Somali parents living in the United Kingdom. Autism, 23(6), 1408–1418. https://doi.org/10.1177/1362361318813996

Kediye F. Valeo A. Berman R. C. (2009). Somali-Canadian mothers’ experiences in parenting a child with autism spectrum disorder. Journal of the Motherhood Initiative for Research and Community Involvement, 11(1), 211–223. https://jarm.journals.yorku.ca/index.php/jarm/article/view/22520

Kim S. H. Bal V. H. Lord C. (2018). Longitudinal follow-up of academic achievement in children with autism from age 2 to 18. Journal of Child Psychology and Psychiatry, 59(3), 258–267. https://doi.org/10.1111/jcpp.12808

Maenner M. J. Shaw K. A. Bakian A. V. Bilder D. A. Durkin M. S. Esler A. Furnier S. M. Hallas L. Hall-Lande J. Hudson A. Hughes M. M. Patrick M. Pierce K. Poynter J. N. Salinas A. Shenouda J. Vehorn A. Warren Z. Constantino J. W. . . . Cogswell M. E. (2021). Prevalence and characteristics of autism spectrum disorder among children aged 8 years—autism and developmental disabilities monitoring network, 11 sites, United States, 2018. MMWR Surveillance Summaries, 70(11), 1–16. https://doi.org/10.15585/mmwr.ss7011a1externalicon

Martins R. Carvalho N. Carvalho R. Batista S. (2021). Autism spectrum disorder: Impact of diagnosis on children’s parents. International Journal of Family and Community Medicine, 5(2), 63–66. https://doi.org/10.15406/ijfcm.2021.05.00222

McCormick K. Danaher J. Chen D. Kilgo J. Missall K. Innocenti M. Brown J. G. Walsh S. (2009). Developmental delay as an eligibility category [Paper presentation]. Division for Early Childhood of the Council for Exceptional Children. Council for Exceptional Children.

Moh T. A. Magiati I. (2012). Factors associated with parental stress and satisfaction during the process of diagnosis of children with autism spectrum disorders. Research in Autism Spectrum Disorders, 6(1), 293–303. https://doi.org/10.1016/j.rasd.2011.05.011

Nissenbaum M. S. Tollefson N. Reese R. M. (2002). The interpretative conference: Sharing a diagnosis of autism with families. Focus on Autism and Other Developmental Disabilities, 17(1), 30–43. https://doi.org/10.1177/108835760201700103

Pierce K. Gazestani V. H. Bacon E. Carter Barnes C. Cha D. Nalabolu S. Lopez L. Moore A. Pence-Stophaeros S. Courchesne E. (2019). Evaluation of the diagnostic stability of the early autism spectrum disorder phenotype in the general population starting at 12 months. JAMA Pediatrics, 173(6), 578–587. https://doi.org/10.1001/jamapediatrics.2019.0624

Rivera-Figueroa K. Marfo N. Y. A. Eigsti I. M. (2022). Parental perceptions of autism spectrum disorder in Latinx and Black sociocultural contexts: A systematic review. American Journal on Intellectual and Developmental Disabilities, 127(1), 42–63. https://doi.org/10.1352/1944-7558-127.1.42

Stahmer A. C. Brookman-Frazee L. Lee E. Searcy M. K. Reed M. S. (2011). Parent and multidisciplinary provider perspectives on earliest intervention for children at risk for autism spectrum disorders. Infants & Young Children, 24(4), 344–363. https://doi.org/10.1097/IYC.0b013e31822cf700

Stone W. L. Ibanez L. V. Carpentier P. Posner E. Bravo A. Frederick L. Locke J. (2021). Early intervention providers’ perspectives about working with families of toddlers with suspected ASD: A qualitative study. Journal of Autism and Developmental Disorders, 51, 814–826. https://doi.org/10.1007/s10803-019-04337-x

U.S. Department of Health and Human Services, Administration for Children and Families, Office of Head Start, National Center on Parent, Family, and Community Engagement. (2020). Preparing for challenging conversations with families.

Wetherby A. M. Brosnan-Maddox S. Peace V. Newton L. (2008). Validation of the Infant-Toddler Checklist as a broadband screener for autism spectrum disorders from 9 to 24 months of age. Autism, 12(5), 487–511. https://doi.org/10.1177/1362361308094501

Wiegand S. D. Brown J. A. Lieberman-Betz R. G. (2023). Autism spectrum disorder screening practices of Part C early intervention providers: A brief report. Journal of Early Intervention, 45(4), 359–369. https://doi.org/10.1177/10538151221141639

Wolff E. R. Madlon-Kay D. J. (2014). Childhood vaccine beliefs reported by Somali and non-Somali parents. The Journal of the American Board of Family Medicine, 27(4), 458–464. https://doi.org/10.3122/jabfm.2014.04.130275

Wozniak R. H. Leezenbaum N. B. Northrup J. B. West K. L. Iverson J. M. (2017). The development of autism spectrum disorders: Variability and causal complexity. Wiley Interdisciplinary Reviews: Cognitive Science, 8(1–2), Article e1426. https://doi.org/10.1002/wcs.1426