Parental Perceptions of Access to and Utilization of Services for Autistic Children in African American Families: An Exploratory Study

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Mangum, L., Copeland, V. C., Orebiyi, I., Taylor, S., Jones, T., Nathan, J., Nathan, B. R., & Eack, S. M. (2025). Parental Perceptions of Access to and Utilization of Services for Autistic Children in African American Families: An Exploratory Study. Journal of Racial and Ethnic Health Disparities, 13(2), 712-720. https://doi.org/10.1007/s40615-025-02283-2

Publication date: 28 Jan 2025 Added to AutiHub: 22 Sep 2026 Type: Article Article language: English
Publisher source (DOI) OpenAlex source

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Authors

Publication authors
8
Publication authors identified as autistic
1 / 8 (12.5%)
  1. Laurenia Mangum
  2. Valire Carr Copeland
  3. Ifeoluwa Orebiyi
  4. Shataya Taylor
  1. Taja Jones
  2. Janice Nathan *
  3. Barry R. Nathan
  4. Shaun M. Eack

Abstract

Autism spectrum disorder (ASD) occurs within all racial, ethnic, and demographic pediatric groups. However, Black children with ASD are diagnosed at later stages of their development, and as a result may not receive or may age out of early intervention services, and demonstrate poorer long-term outcomes, across a range of factors. African American parent's perceptions regarding access to and utilization of healthcare services for their autistic children vary. Research examining autism spectrum disorder and parental perceptions of service utilization among African American (AA) families is limited. This qualitative study aimed to understand the challenges African American parents face when initiating healthcare services for their autistic children. Eleven AA mothers of autistic children participated in individual semi-structured interviews. Six themes related to pediatric treatment needs, interactions with providers, and parents' roles as experts and advocates were generated. Implications for pediatric treatment needs of autistic children and areas of opportunity for providers working with AA autistic children are discussed.

Bibliography cited by this reference

Cited references are imported from external metadata sources when they are available. The list may be partial.

Cited bibliography overview

These indicators describe the bibliography cited by this publication. An author name is counted each time it appears in one cited reference, so the same person can be counted more than once. Names not yet linked to an author already present in AutiHub are treated as unknown, not as non-autistic. Last computed: 2 Oct 2026 08:12.

Cited references
38
With a DOI
34
Without a DOI, from raw bibliography text
4
2 / 38 (5.3%) cited references include at least one author identified as autistic.
References with data to complete
4 / 38 (10.5%)
References with detected author names
34 / 38 (89.5%)
Without detected author names
4
Without a structured title
4
Without a stable identifier
4
References with raw author names still to review
4
References with external metadata lookup issues
0
These indicators apply to cited references displayed on this page, after technical duplicates have been merged. A reference without a DOI can still support author statistics when a title and author names are available.
Author names detected in the cited bibliography
215
From DOI or external metadata
215
From validated raw bibliography text
0
Raw names already validated
0
Raw names still to review
4
38 / 215 (17.7%) names are linked to an author already present in AutiHub. 177 / 215 (82.3%) names are not yet linked.
Names linked to a person identified as autistic
2 / 215 (0.9%)
Calculated across all author names detected in the cited bibliography. Among names linked to an author already present in AutiHub: 2 / 38 (5.3%). Distinct people identified as autistic: 2 / 192 (1.0%).
  1. Karen Burkett , Edith Morris , Patricia Manning-Courtney , Jean Anthony , Donna Shambley-Ebron (2015). African American Families on Autism Diagnosis and Treatment: The Influence of Culture . Journal of Autism and Developmental Disorders, 45(10), 3244-3254. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-015-2482-x OpenAlex: https://openalex.org/W611786347
    Crossref OpenAlex OpenCitations
  2. Michael D. Kogan , Catherine J. Vladutiu , Laura A. Schieve , Reem M. Ghandour , Stephen J. Blumberg , Benjamin Zablotsky et al. (2018). The Prevalence of Parent-Reported Autism Spectrum Disorder Among US Children . Pediatrics, 142(6). American Academy of Pediatrics (AAP).
    Type: Article DOI: 10.1542/peds.2017-4161 OpenAlex: https://openalex.org/W2902775069
    Crossref OpenAlex
  3. Matthew J. Maenner , Kelly A. Shaw , Jon Baio , EdS1 , Anita Washington , Mary Patrick et al. (2020). Prevalence of Autism Spectrum Disorder Among Children Aged 8 Years—Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2016 . Mmwr Surveillance Summaries, 69(4), 1-12. Centers for Disease Control MMWR Office.
    Type: Article DOI: 10.15585/mmwr.ss6904a1 OpenAlex: https://openalex.org/W3027179734
    Crossref OpenAlex OpenCitations
  4. Virginia Braun , Victoria Clarke (2006). Using thematic analysis in psychology . Qualitative Research in Psychology, 3(2), 77-101. Informa UK Limited.
    Type: Article DOI: 10.1191/1478088706qp063oa OpenAlex: https://openalex.org/W1979290264
    Crossref OpenAlex OpenCitations
  5. Martine Lappé , Lynette Lau , Rebecca N. Dudovitz , Bergen B. Nelson , Elizabeth A. Karp , Alice A. Kuo (2018). The Diagnostic Odyssey of Autism Spectrum Disorder . Pediatrics, 141(Supplement 4), S272-S279. American Academy of Pediatrics (AAP).
    Type: Article DOI: 10.1542/peds.2016-4300c OpenAlex: https://openalex.org/W2796117794
    Crossref OpenAlex OpenCitations
  6. Jennifer M. Zubler , Lisa D. Wiggins , Michelle M. Macias , Toni M. Whitaker , Judith S. Shaw , Jane K. Squires et al. (2022). Evidence-Informed Milestones for Developmental Surveillance Tools . Pediatrics, 149(3), e2021052138. American Academy of Pediatrics (AAP).
    Type: Article DOI: 10.1542/peds.2021-052138 OpenAlex: https://openalex.org/W4210880286
    Crossref OpenAlex OpenCitations
  7. Matthew J. Altiere , Silvia von Kluge (2009). Family Functioning and Coping Behaviors in Parents of Children with Autism . Journal of Child and Family Studies, 18(1), 83-92. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10826-008-9209-y OpenAlex: https://openalex.org/W1991363343
    Crossref OpenAlex OpenCitations
  8. Elizabeth Weir , Carrie T. Allison , Simon Baron-Cohen (2022). Autistic adults have poorer quality healthcare and worse health based on self-report data . Molecular Autism, 13(1), 23. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1186/s13229-022-00501-w OpenAlex: https://openalex.org/W4281568468
    Crossref OpenAlex OpenCitations
  9. Amy Weitlauf , Alison Vehorn , Alexandra Miceli , Theodora Pinnock , Yewande Dada , Jeffrey Hine et al. (2022). Black Families' Experiences of Developmental Screening: Review of Well-Child Visits to Inform Enhanced Autism Spectrum Disorder Risk Assessment . Journal of Developmental & Behavioral Pediatrics, 43(9), 503-510. Ovid Technologies (Wolters Kluwer Health).
    Type: Article DOI: 10.1097/dbp.0000000000001129 OpenAlex: https://openalex.org/W4310589053
    Crossref OpenAlex OpenCitations
  10. DAVID S. MANDELL , Richard F. Ittenbach , Susan E. Levy , Jennifer A. Pinto-Martin (2007). Disparities in Diagnoses Received Prior to a Diagnosis of Autism Spectrum Disorder . Journal of Autism and Developmental Disorders, 37(9), 1795-1802. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-006-0314-8 OpenAlex: https://openalex.org/W2122780702
    Crossref OpenAlex OpenCitations
  11. Maarten van ’t Hof , Chanel Tisseur , Ina van Berckelear-Onnes , Annemyn van Nieuwenhuyzen , Amy M Daniels , Mathijs Deen et al. (2021). Age at autism spectrum disorder diagnosis: A systematic review and meta-analysis from 2012 to 2019 . Autism, 25(4), 862-873. SAGE Publications.
    Type: Article DOI: 10.1177/1362361320971107 OpenAlex: https://openalex.org/W3099367322
    Crossref OpenAlex OpenCitations
  12. Trenesha L Hill , Tiffany C White , Bruno J Anthony , Judy Reaven , Bryn Harris , Nuri Reyes et al. (2021). Disparities in autism spectrum disorder diagnoses among 8-year-old children in Colorado: Who are we missing? Autism, 25(1), 102-113. SAGE Publications.
    Type: Article DOI: 10.1177/1362361320950058 OpenAlex: https://openalex.org/W3082781699
    Crossref OpenAlex OpenCitations
  13. I. V. Blair , J. F. Steiner , D. L. Fairclough , R. Hanratty , D. W. Price , H. K. Hirsh et al. (2013). Clinicians' Implicit Ethnic/Racial Bias and Perceptions of Care Among Black and Latino Patients . The Annals of Family Medicine, 11(1), 43-52. Annals of Family Medicine.
    Type: Article DOI: 10.1370/afm.1442 OpenAlex: https://openalex.org/W2137471755
    Crossref OpenAlex OpenCitations
  14. Lauren Bishop-Fitzpatrick , Amy J. H. Kind (2017). A Scoping Review of Health Disparities in Autism Spectrum Disorder . Journal of Autism and Developmental Disorders, 47(11), 3380-3391. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-017-3251-9 OpenAlex: https://openalex.org/W2740425314
    Crossref OpenAlex OpenCitations
  15. Sarah Russell , Cynthia Ricci McCloskey (2016). Parent Perceptions of Care Received by Children With an Autism Spectrum Disorder . Journal of Pediatric Nursing, 31(1), 21-31. Elsevier BV.
    Type: Article DOI: 10.1016/j.pedn.2015.11.002 OpenAlex: https://openalex.org/W2214304560
    Crossref OpenAlex OpenCitations
  16. Kelly A. Shaw , Dedria McArthur , Michelle M. Hughes , Amanda V. Bakian , Li‐Ching Lee , Sydney Pettygrove et al. (2022). Progress and Disparities in Early Identification of Autism Spectrum Disorder: Autism and Developmental Disabilities Monitoring Network, 2002-2016 . Journal of the American Academy of Child & Adolescent Psychiatry, 61(7), 905-914. Elsevier BV.
    Type: Article DOI: 10.1016/j.jaac.2021.11.019 OpenAlex: https://openalex.org/W3217028000
    Crossref OpenAlex OpenCitations
  17. Amy Weitlauf , Alexandra Miceli , Alison Vehorn , Yewande Dada , Theodora Pinnock , Joyce W. Harris et al. (2024). Screening, Diagnosis, and Intervention for Autism: Experiences of Black and Multiracial Families Seeking Care . Journal of Autism and Developmental Disorders, 54(3), 931-942. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-022-05861-z OpenAlex: https://openalex.org/W4315435408
    Crossref OpenAlex OpenCitations
  18. Jill Locke , Christina D. Kang‐Yi , Melanie Pellecchia , Steven Marcus , Trevor Hadley , DAVID S. MANDELL (2017). Ethnic Disparities in School‐Based Behavioral Health Service Use for Children With Psychiatric Disorders . Journal of School Health, 87(1), 47-54. Wiley.
    Type: Article DOI: 10.1111/josh.12469 OpenAlex: https://openalex.org/W2560506588
    Crossref OpenAlex OpenCitations
  19. Laura Ellen Ashcraft , Miya Asato , Amy J. Houtrow , Dio Kavalieratos , Elizabeth Miller , Kristin N. Ray (2019). Parent Empowerment in Pediatric Healthcare Settings: A Systematic Review of Observational Studies . The Patient - Patient-Centered Outcomes Research, 12(2), 199-212. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s40271-018-0336-2 OpenAlex: https://openalex.org/W2896371530
    Crossref OpenAlex OpenCitations
  20. James Galpin , Penny Barratt , Edward Ashcroft , Scot Greathead , Lorcan Kenny , Elizabeth Pellicano (2018). ‘The dots just don’t join up’: Understanding the support needs of families of children on the autism spectrum . Autism, 22(5), 571-584. SAGE Publications.
    Type: Article DOI: 10.1177/1362361316687989 OpenAlex: https://openalex.org/W2609194368
    Crossref OpenAlex OpenCitations
  21. John N. Constantino , Anna M. Abbacchi , Celine A. Saulnier , Cheryl Klaiman , DAVID S. MANDELL , Yi Zhang et al. (2020). Timing of the Diagnosis of Autism in African American Children . Pediatrics, 146(3), e20193629. American Academy of Pediatrics (AAP).
    Type: Article DOI: 10.1542/peds.2019-3629 OpenAlex: https://openalex.org/W3080200451
    Crossref OpenAlex OpenCitations
  23. Sarah Dababnah , Wendy E. Shaia , Karen Campion , Helen M. Nichols (2018). “We Had to Keep Pushing”: Caregivers' Perspectives on Autism Screening and Referral Practices of Black Children in Primary Care . Intellectual and Developmental Disabilities, 56(5), 321-336. Informa UK Limited.
    Type: Article DOI: 10.1352/1934-9556-56.5.321 OpenAlex: https://openalex.org/W2894823838
    Crossref OpenAlex OpenCitations
  24. Lamont S. Bryant , Seanna Leath , Janelle Billingsley , Saidi Moseley (2024). “She Has a Village”: The Intergenerational Benefits of Social Support Networks for Black Mothers and Daughters . Psychology of Women Quarterly, 48(3), 390-410. SAGE Publications.
    Type: Article DOI: 10.1177/03616843241233289 OpenAlex: https://openalex.org/W4392354284
    Crossref OpenAlex OpenCitations
  25. Rae Morris , Andrea Greenblatt , Michael Saini (2019). Healthcare Providers’ Experiences with Autism: A Scoping Review . Journal of Autism and Developmental Disorders, 49(6), 2374-2388. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-019-03912-6 OpenAlex: https://openalex.org/W2911241604
    Crossref OpenAlex OpenCitations
  26. Sarabeth Broder‐Fingert , Camilla Mateo , Katherine E. Zuckerman (2020). Structural Racism and Autism . Pediatrics, 146(3), e2020015420. American Academy of Pediatrics (AAP).
    Type: Article DOI: 10.1542/peds.2020-015420 OpenAlex: https://openalex.org/W3081058156
    Crossref OpenAlex OpenCitations
  27. Michelle E. Kiger , Lara Varpio (2020). Thematic analysis of qualitative data: AMEE Guide No. 131 . Medical Teacher, 42(8), 846-854. Informa UK Limited.
    Type: Article DOI: 10.1080/0142159x.2020.1755030 OpenAlex: https://openalex.org/W3022535278
    Crossref OpenAlex OpenCitations
  28. Diondra Straiton , Aksheya Sridhar (2022). Short report: Call to action for autism clinicians in response to anti-Black racism . Autism, 26(4), 988-994. SAGE Publications.
    Type: Article DOI: 10.1177/13623613211043643 OpenAlex: https://openalex.org/W3200835819
    Crossref OpenAlex OpenCitations
  29. Monica L Gordillo , Andrea Chu , Kristin Long (2020). Mothers’ Adjustment to Autism: Exploring the Roles of Autism Knowledge and Culture . Journal of Pediatric Psychology, 45(8), 877-886. Oxford University Press (OUP).
    Type: Article DOI: 10.1093/jpepsy/jsaa044 OpenAlex: https://openalex.org/W3041045045
    Crossref OpenAlex OpenCitations
  30. Temple Lovelace , Rachel E. Robertson , Sareska Tamayo (2018). Experiences of African American Mothers of Sons with Autism Spectrum Disorder: Lessons for Improving Service Delivery . Education and Training in Autism and Developmental Disabilities, 53(1), 3-16. SAGE Publications.
    Type: Article DOI: 10.1177/215416471805300102 OpenAlex: https://openalex.org/W2885107368
    Crossref
  31. Jamie N. Pearson , Hedda Meadan (2018). African American parents’ perceptions of diagnosis and services for children with autism . Education and Training in Autism and Developmental Disabilities,, 53(1), 17. SAGE Publications.
    Type: Article DOI: 10.1177/215416471805300103 OpenAlex: https://openalex.org/W2883343720
    Crossref
  32. (n.d.). McPherson. Survey on services provided to children with autism spectrum disorder in U. S. public schools. ProQuest Dissertations Publishing. 2018.
    Type: Other
    Crossref
  33. Margaret A. Salisu , Jagadisa-Devasri Dacus (2021). Living in a Paradox: How Older Single and Widowed Black Women Understand Their Sexuality . Journal of Gerontological Social Work, 64(3), 303-333. Informa UK Limited.
    Type: Article DOI: 10.1080/01634372.2020.1870603 OpenAlex: https://openalex.org/W3120785708
    Crossref OpenAlex OpenCitations
  34. Michael D. Kogan , Catherine J. Vladutiu , Laura A. Schieve , Reem M. Ghandour , Stephen J. Blumberg , Benjamin Zablotsky et al. (2020). The Prevalence of Parent-Reported Autism Spectrum Disorder Among US Children . In Pediatric Collections: Autism Spectrum Disorder (pp. 78-88). American Academy of Pediatrics.
    Type: Book chapter DOI: 10.1542/9781610024716-part02-ch004 10.1542/peds.2017-4161 10.1542/peds.2018-2950
    OpenCitations
  35. Brandon S. Aylward , Diana E. Gal-Szabo , Sharief Taraman (2021). Racial, Ethnic, and Sociodemographic Disparities in Diagnosis of Children with Autism Spectrum Disorder . Journal of Developmental & Behavioral Pediatrics, 42(8), 682-689. Ovid Technologies (Wolters Kluwer Health).
    Type: Article DOI: 10.1097/dbp.0000000000000996 OpenAlex: https://openalex.org/W3199889683
    Crossref OpenAlex OpenCitations
  36. (n.d.). Boyd-Franklin N. Black families in therapy: understanding the African American experience. Guilford Publications. 2013.
    Type: Other
    Crossref
  37. (n.d.). Retaskie K. Parents’ perceptions of autism spectrum disorder. https://sophia.stkate.edu/msw_papers/510
    Type: Other
    Crossref
  38. (n.d.). Asato M. Family Journeys in ASD. Professor, pediatrics, psychiatry, clinical and translational science, lecture. 2021. February 2021
    Type: Other
    Crossref