Skip to main content

Advertisement

Log in

Understanding the Family Impact of Autism Spectrum Disorder in a Racially and Ethnically Diverse Sample: Findings from the National Survey of Children with Special Health Care Needs

  • Published:
Maternal and Child Health Journal Aims and scope Submit manuscript

A Correction to this article was published on 02 April 2019

This article has been updated

Abstract

Objectives Caregivers of children with autism spectrum disorder (ASD) experience stress at greater rates than caregivers of other children with developmental conditions. Little is known about how families from different racial and ethnic backgrounds report family impact beyond individual stressors associated with caregiving. This paper aims to examine differences in family impact variables among caregivers of ASD children from different racial/ethnic backgrounds. Methods Using data from the 2005–2006 and 2009–2010 National Survey of Children with Special Health Care Needs, this retrospective, cross-sectional study examined family impact among caregivers of children with ASD. Family impact was defined as financial impact, time spent caregiving, and work impact variables and evaluated in five racial/ethnicity groups: white, non-Hispanic; any race, English-speaking Hispanic; any race, Spanish-speaking Hispanic; black, non-Hispanic; and other race, non-Hispanic respondents (n = 5115). Multivariate logistic regression was used to analyze the association of race and ethnicity with family impact variables while controlling for child and family covariates. Results Significant differences were found between race/ethnicity groups of caregivers on financial spending of more than $500 per year on care and providing more than 11 h a week on direct child care. No significant differences were observed in job impact variables between race/ethnicity groups. Conclusions for Practice Racial/ethnic differences exist in providing and spending more on direct care, but they do not necessarily represent disparities. More research is needed to fully understand if family impact is affected by cultural differences in care provided for children with ASD.

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

Access this article

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

Instant access to the full article PDF.

Similar content being viewed by others

Change history

  • 02 April 2019

    The original version of this article unfortunately contained a mistake. The copyright permission below in Table 2 was inadvertently not published in the article.

References

  • Benevides, T. W., Carretta, H. J., & Lane, S. J. (2016). Access to therapy for children with autism: Results from the 2005–2006 and 2009–2010 NS-CSHCN. Maternal and Child Health Journal, 20, 878–888.

    Article  PubMed  Google Scholar 

  • Bishop, S. L., Richler, J., Cain, A. C., & Lord, C. (2007). Predictors of perceived negative impact in mothers of children with autism spectrum disorder. American Journal on Mental Retardation, 112, 450–461.

    Article  PubMed  Google Scholar 

  • Blumberg, S. J., Welch, E. M., Chowdhury, S. R., Upchurch, H. L., Parker, E. K., & Skalland, B. J. (2008). Design and operation of the national survey of children with special health care needs, 2005–2006. Vital Health Statistics, 1(45). Retrieved from https://www.cdc.gov/nchs/products/series/series01.htm. Accessed 20 August 2011.

  • Bramlett, M. D., Blumberg, S. J., Ormson, A. E., et al. (2014). Design and operation of the National Survey of Children with Special Health Care Needs, 2009–2010. National Center for Health Statistics. Vital Health Statistics, 1(57). Retrieved from http://www.cdc.gov/nchs/data/series/sr_01/sr01_057.pdf.

  • Centers for Disease Control and Prevention, National Center for Health Statistics & State and Local Area Integrated Telephone Survey. (2013). National survey of children with special health care needs. Retrieved from http://www.cdc.gov/nchs/slaits/cshcn.htm.

  • Centers for Medicare & Medicaid Services. (n.d.). Self-Directed Services. Retrieved from https://www.medicaid.gov/medicaid/ltss/self-directed/index.html.

  • Christensen, D. L., Bilder, D. A., Zahorodny, W., Pettygrove, S., Durkin, M. S., Fitzgerald, R. T., Rice, C., Kurzius-Spencer, M., Baio, J., & Yeargin-Allsopp, M. (2016). Prevalence and characteristics of autism spectrum disorder among 4-year-old children in the autism and developmental disabilities monitoring network. Journal of Developmental & Behavioral Pediatrics, 37(1), 1–8.

    Article  Google Scholar 

  • Cidav, Z., Marcus, S. C., & Mandell, D. S. (2012). Implications of childhood autism for parental employment and earnings. Pediatrics, 129(4), 617–623.

    Article  PubMed  PubMed Central  Google Scholar 

  • Cohrs, A. C., & Leslie, D. L. (2017). Depression in parents of children diagnosed with autism spectrum disorder: A claims-based analysis. Journal of Autism and Developmental Disorders, 47(5), 1416–1422.

    Article  PubMed  Google Scholar 

  • Collado, A., Calderón, M., MacPherson, L., & Lejuez, C. (2016). The efficacy of behavioral activation treatment among depressed Spanish-speaking Latinos. Journal of Counseling and Clinical Psychology, 84, 651–657. https://doi.org/10.1037/ccp0000103.

    Article  Google Scholar 

  • DeGrace, B. (2004). The everyday occupation of families with children with autism. The American Journal of Occupational Therapy, 58, 543–550.

    Article  PubMed  Google Scholar 

  • Dusing, S. C., Skinner, A. C., & Mayer, M. L. (2004). Unmet need for therapy services, assistive devices, and related services: Data from the National Survey of Children with Special Health Care Needs. Ambulatory Pediatrics, 4, 448–454.

    Article  PubMed  Google Scholar 

  • Dyches, T. T., Wilder, L. K., Sudweeks, R. R., Obiakor, F. E., & Algozzine, B. (2004). Multicultural issues in autism. Journal of Autism and Developmental Disorders, 34, 211–222. https://doi.org/10.1023/B:JADD.0000022611.80478.73.

    Article  PubMed  Google Scholar 

  • Flower, K. B., Skinner, A. C., Yin, H. S., Rothman, R. L., Sanders, L. M., Delamater, A., & Perrin, E. M. (2017). Satisfaction with communication in primary care for Spanish-speaking and English-speaking parents. Academic Pediatrics, 17, 416–423.

    Article  PubMed  PubMed Central  Google Scholar 

  • 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.

    Article  PubMed  Google Scholar 

  • Gallagher, S., & Whiteley, J. (2012). Social support is associated with blood pressure responses in parents caring for children with developmental disabilities. Research in Developmental Disabilities, 33(6), 2099–2105. https://doi.org/10.1016/j.ridd.2012.06.007.

    Article  PubMed  Google Scholar 

  • Galpin, J., Barratt, P., Ashcroft, E., Greathead, S., Kenny, L., & Pellicano, E. (2017). ‘The dots just don’t join up’: Understanding the support needs of families of children on the autism spectrum. Autism (online first). https://doi.org/10.1177/1362361316687989.

    Article  Google Scholar 

  • Hayes, S. A., & Watson, S. L. (2013). The impact of parenting stress: A meta-analysis of studies comparing the experience of parenting stress in parents of children with and without autism spectrum disorder. Journal of Autism and Developmental Disorders. https://doi.org/10.1007/s10803-012-1604-y.

    Article  PubMed  Google Scholar 

  • Lavelle, T. A., Weinstein, M. C., Newhouse, J. P., Munir, K., Kuhlthau, K. A., & Prosser, L. A. (2014). Economic burden of childhood autism spectrum disorders. Pediatrics, 133(3), e520–e529. https://doi.org/10.1542/peds.2013-0763.

    Article  PubMed  Google Scholar 

  • Lin, S. X., Younge, R. G., & Kleinman, L. C. (2017). Does receiving care in a medical home reduce racial/ethnic disparities in ED visits among children with asthma in the United States? Journal of Child Health Care, 21(1), 25–35. https://doi.org/10.1177/1367493516656825.

    Article  PubMed  Google Scholar 

  • Liptak, G. S., Benzoni, L. B., Mruzek, D. W., Nolan, K. W., Thingvoll, M. A., Wade, C. M., & Fryer, G. E. (2008). Disparities in diagnosis and access to health services for children with autism: Data from the National Survey of Children’s Health. Journal of Developmental and Behavioral Pediatrics, 29(3), 152–160. https://doi.org/10.1097/DBP.0b013e318165c7a0.

    Article  PubMed  Google Scholar 

  • Lovell, B., Moss, M., & Wetherell, M. (2012). The psychosocial, endocrine and immune consequences of caring for a child with autism or ADHD. Psychoneuroendocrinology, 37(4), 534–542. https://doi.org/10.1016/j.psyneuen.2011.08.003.

    Article  CAS  PubMed  Google Scholar 

  • Magaña, S. M. (1999). Puerto Rican families caring for an adult with mental retardation: Role of familism. American Journal on Mental Retardation, 104(5), 466–482.

  • 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.

    Article  PubMed  Google Scholar 

  • Magaña, S., Parish, S. L., & Son, E. (2016). Functional severity and Latino ethnicity in specialty services for children with autism spectrum disorder. Journal of Intellectual Disability Research, 60(5), 424–434. https://doi.org/10.1111/jir.12293.

    Article  PubMed  Google Scholar 

  • Mandell, D. S., Wiggins, L. D., Carpenter, L. A., Daniels, J., DiGuiseppi, C., Durkin, M. S., Giarelli, E., Morrier, M. J., Nichols, J. S., Pinto-Martin, J. A., Shattuck, P. T., Thomas, K. C., Yeargin-Allsopp, M., & Kirby, R. S. (2009). Racial/ethnic disparities in the identification of children with autism spectrum disorders. American Journal of Public Health, 99(3), 493–498. https://doi.org/10.2105/AJPH.2007.131243.

    Article  PubMed  PubMed Central  Google Scholar 

  • McManus, B. M., Carle, A., Acevedo-Garcia, D., Ganz, M., Hauser-Cram, P., & McCormick, M. (2011). Modeling the social determinants of caregiver burden among families of children with developmental disabilities. American Journal of Intellectual and Developmental Disabilities, 116(3), 246–260.

    Article  Google Scholar 

  • Nathenson, R. A., Saloner, B., Richards, M. R., & Rhodes, K. V. (2016). Spanish-speaking immigrants’ access to safety net providers and translation services across traditional and emerging US destinations. The Milbank Quarterly, 94, 768–799.

    Article  PubMed  PubMed Central  Google Scholar 

  • Ross, S. M., Smit, E., Twardzik, E., Logan, S. W., & McManus, B. M. (2018). Patient-centered medical home and receipt of part c early intervention among young CSHCN and developmental disabilities versus delays: NS-CSHCN 2009–2010. Maternal and Child Health Journal. https://doi.org/10.1007/s10995-018-2540-z.

    Article  PubMed  Google Scholar 

  • Seltzer, M. M., Greenberg, J. S., Hong, J., Smith, L. E., Almeida, D. M., Coe, C., & Stawski, R. S. (2010). Maternal cortisol levels and behavior problems in adolescents and adults with ASD. Journal of Autism and Developmental Disorders, 40(4), 457–469. https://doi.org/10.1007/s10803-009-0887-0.

    Article  PubMed  PubMed Central  Google Scholar 

  • Torres-Harding, S. R., Mason-Shutter, J., & Jason, L. A. (2008). Fatigue among Spanish- and English-speaking Latinos. Social Work in Public Health, 23, 55–72. https://doi.org/10.1080/19371910802053232.

    Article  PubMed  PubMed Central  Google Scholar 

  • U.S. Department of Health and Human Services. (2001). Mental health: Culture, race, and ethnicity—A supplement to mental health: A report of the Surgeon General. Chapter 6 mental health care for Hispanic Americans. Rockville: U.S. Department of Health and Human Services, Substance Abuse and Mental Health Services Administration, Center for Mental Health Services. Retrieved from: https://www.ncbi.nlm.nih.gov/books/NBK44247/.

  • Warfield, M. E., Chiri, G., Leutz, W. N., & Timberlake, M. (2014). Family well-being in a participant-directed autism waiver program: The role of relational coordination. Journal of Intellectual Disability Research, 58, 1091–1104. https://doi.org/10.1111/jir.12102.

    Article  CAS  PubMed  Google Scholar 

Download references

Author information

Authors and Affiliations

Authors

Contributions

All authors contributed to the supervision and design of the study equally. TB developed methodology, conducted and interpreted analyses, and contributed to the writing of the article. JL, NN, and JLF conducted the literature review, participated in interpretation of results and implications, and contributed to the writing of the article.

Corresponding author

Correspondence to Teal W. Benevides.

Ethics declarations

Ethical Statement

This study was deemed exempt from the first author’s institutional review board, and all research for this manuscript was conducted in accord with prevailing ethical principles.

Additional information

Publisher’s Note

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

The original article is revised: The copyright permission for table 2 is updated.

Rights and permissions

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Benevides, T.W., Lee, J., Nwosu, N.A.O. et al. Understanding the Family Impact of Autism Spectrum Disorder in a Racially and Ethnically Diverse Sample: Findings from the National Survey of Children with Special Health Care Needs. Matern Child Health J 23, 951–960 (2019). https://doi.org/10.1007/s10995-018-02724-x

Download citation

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s10995-018-02724-x

Keywords

Navigation