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The Costs of Autism

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Autism in the Workplace

Abstract

This chapter discusses the costs of autism at the individual, organizational, and societal levels. It is projected that the annual costs of autism in the United States will reach $461 billion by 2025. These costs are not unique to the United States. Autism is often regarded internationally as the most expensive disability. Some of the costs associated with caring for an individual with ASD include medical, support services, housing, transportation, and education. Low employment outcomes for individuals with ASD lead to absenteeism, turnover, job withdrawal, and lost productivity. In addition to the financial costs of autism, this chapter discusses psychological and emotional costs experienced by individuals and their families.

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References

  • Abbeduto, L., Seltzer, M. M., Shattuck, P., Krauss, M. W., Orsmond, G., & Murphy, M. M. (2004). Psychological well-being and coping in mothers of youths with autism, down syndrome, or fragile X syndrome. American Journal of Mental Retardation, 109(3), 237–254.

    Article  Google Scholar 

  • Alemayehu, B., & Warner, K. E. (2004). The lifetime distribution of health care costs. Health Services Research, 39, 627–642, First published: 04 May 2004. https://doi.org/10.1111/j.1475-6773.2004.00248

    Article  Google Scholar 

  • Allik, H. A., Larsson, J., & Smedje, H. (2006). Health-related quality of life in parents of school-age children with Asperger syndrome or high-functioning autism. Health and Quality of Life Outcomes. https://doi.org/10.1186/1477-7525-4-1

    Article  Google Scholar 

  • Baldwin, S., Costley, D., & Warren, A. (2014). Employment activities and experiences of adults with high-functioning autism and Asperger’s disorder. Journal of Autism and Developmental Disorders, 44(10), 2440–2449. https://doi.org/10.1007/s10803-014-2112-z

    Article  Google Scholar 

  • Barrett, B., Byford, S., Sharac, J., Hudry, K., Leadbitter, K., & Temple, K. (2012). Service and wider societal costs of very young children with autism in the UK. Journal of Autism and Developmental Disorders, 42(5), 97–804. https://doi.org/10.1007/s10803-011-1306-x. PMID:22089166.

    Article  Google Scholar 

  • Buescher, A. V., Cidav, Z., Knapp, M., & Mandell, D. S. (2014). Costs of autism spectrum disorders in the United Kingdom and the United States. JAMA Pediatrics, 168(8), 721–728. https://doi.org/10.1001/jamapediatrics.2014.210

    Article  Google Scholar 

  • Byford, S., Cary, M., Barrett, B., Aldred, C. R., Charman, T., & Howlin, P. (2016). Cost-effectiveness analysis of a communication-focused therapy for pre-school children with autism: Results from a randomised controlled trial. BMC Psychiatry, 15, 316. https://doi.org/10.1186/s12888-015-0700-x

    Article  Google Scholar 

  • California Department Developmental Services. (2008). California Department Developmental Services, Information Services Division. In Fact Book (11th ed.). Sacramento, CA: Department of Developmental Services. http://www.dds.ca.gov/FactsStats/docs/factbook_11th.pdf. Accessed 3 June 2013.

  • Carnevale, A. P., Rose, S. J., & Cheah, B. (2011). The college payoff: Education, occupations, lifetime earnings. Georgetown University Center on Education and the Workforce. August 15, 2016, from http://hdl.handle.net/10822/559300

  • Cidav, Z., Knapp, M., & Mandell, D. S. (2014). Costs of autism spectrum disorders in the United Kingdom and the United States. JAMA Pediatrics, 168, 721–728.

    Article  Google Scholar 

  • Cidav, Z., Lawer, L., Marcus, S. C., & Mandell, D. S. (2013). Age-related variation in health service use and associated expenditures among children with autism. Journal of Autism and Developmental Disorders, 43(4), 924–931. https://doi.org/10.1007/s10803-012-1637-2

    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  Google Scholar 

  • Clasquin-Johnson, M. G. & Clasquin-Johnson, M. (2018). ‘How deep are your pockets?’ Autoethnographic reflections on the cost of raising a child with autism. African Journal of Disability, 7, 356. Published online 2018, Mar 27. https://doi.org/10.4102/ajod.v7i0.356. PMCID: PMC5913784 PMID: 29707517.

  • Croen, L., Najjar, D., Ra, T., Lotspeich, L., & Bernal, P. (2006). A comparison of health care utilization and costs of children with and without autism spectrum disorders in a large group-model health plan. Pediatrics, 118(4), 1203–1211.

    Article  Google Scholar 

  • Dillenburger, K., McKerr, L., & Jordan, J. (2014). Lost in translation: Public policies, evidence-based practice, and autism spectrum disorder. International Journal of Disability, Development and Education, 61(2), 134–151. https://doi.org/10.1080/1034912x.2014.905059

    Article  Google Scholar 

  • Doherty, S. (2008, July 2). Arrested development the day-to-day struggles of autistic children affect entire family. The Capital Times, p. 25.

    Google Scholar 

  • Easter Seals. (2008). Living with autism study. Retrieved from Easter Seals website, http://www.easterseals.com/explore-resources/living-with-autism/study.html.

  • Eisenhower, A. S., Baker, B. L., & Blacher, J. (2005). Preschool children with intellectual disability: Syndrome specificity, behaviour problems, and maternal well-being. Journal of Intellectual Disability Research, 49(9), 657–671.

    Article  Google Scholar 

  • Fletcher, P. C., Markoulakis, R., & Bryden, P. J. (2012). The costs of caring for a child with an autism spectrum disorder. Issues in Comprehensive Pediatric Nursing, 35(1), 45–69. https://doi.org/10.3109/01460862.2012.645407

    Article  Google Scholar 

  • Ganz, M. L. (2007). The lifetime distribution of the incremental societal costs of autism. Archives of Pediatrics & Adolescent Medicine, 161(4), 343–349.

    Article  Google Scholar 

  • Gerhardt, F., & Lanier, I. (2011). Addressing the needs of adolescents and adults with autism: A crisis on the horizon. Journal of Contemporary Psychotherapy, 41(1), 37–45.

    Article  Google Scholar 

  • Giallo, R., Wood, C., Jellett, R., & Porter, R. (2011). Fatigue, well-being and parental self-efficacy in mothers of children with an autism spectrum disorder. Autism International Journal of Research and Practice. https://www.researchgate.net/publication/232812958_Fatigue_Stress_and_Coping_in_Mothers_of_Children_with_an_Autism_Spectrum_Disorder. Accessed 8 July 2019.

  • Gould, E. (2004). Decomposing the effects of children’s health on mother’s labor supply: Is it time or money? Health Economics, 13(6), 525–541.

    Article  Google Scholar 

  • Gray, D. E., & Holden, W. J. (1992). Psycho-social well-being among parents of children with autism. Australia and New Zealand Journal of Developmental Disabilities, 18, 83–93.

    Article  Google Scholar 

  • Guan, J., & Li, G. (2017). Injury mortality in individuals with autism. American Journal of Public Health, 7(5), 791–793.

    Article  Google Scholar 

  • Guillot, C. (2013, July 23). The cost of raising a special needs child. Financial Planning. https://blog.mint.com/planning/the-cost-of-raising-a-special-needs-child-0713

  • Hall, S. S., Wright, H. F., & Mills, D. S. (2016). What factors are associated with positive effects of dog ownership in families with children with autism spectrum disorder? The Development of the Lincoln Autism Pet Dog Impact Scale, 11(2), e0149736. https://doi.org/10.1371/journal.pone.0149736

    Article  Google Scholar 

  • Hartley, S. L., Barker, E. T., Seltzer, M. M., Floyd, F., Greenberg, J., Orsmond, G., et al. (2006). The relative risk and timing of divorce in families of children with an autism spectrum disorder. The Journal of Family Psychology, 24(4), 449–457. https://doi.org/10.1037/a0019847

    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, 43(3), 629–642. https://doi.org/10.1007/s10803-012-1604-y

    Article  Google Scholar 

  • Hirvikoski, T., Mittendorfer-Rutz, E., Boman, M., Larsson, H., Lichtenstein, P., & Bölte, S. (2016). Premature mortality in autism spectrum disorder. The British Journal of Psychiatry, 208(3), 232–238.

    Article  Google Scholar 

  • Horlin, C., Falkmer, M., Parsons, R., Albrecht, M. A., & Falkmer, T. (2014). The cost of autism spectrum disorders. PLoS One, 9(9), e106552. https://doi.org/10.1371/journal.pone.0106552

    Article  Google Scholar 

  • Hurley, A. E., & Sonnenfeld, J. A. (1998). The effect of organizational experience on managerial career attainment in an internal labor market. Journal of Vocational Behavior, 52, 172–190.

    Article  Google Scholar 

  • Jennes-Coussens, M., Magill-Evans, J., & Koning, C. (2006). The quality of life of young men with Asperger syndrome: A brief report. Autism, 10(4), 403–414.

    Article  Google Scholar 

  • Jobe, L. E., & White, S. W. (2007). Loneliness, social relationships, and a broader autism phenotype in college students. Personality and Individual Differences, 42(8), 1479–1489.

    Article  Google Scholar 

  • Joesch, J. M., & Smith, K. R. (1997). Children’s health and their mother’s risk of divorce or separation. Social Biology, 44, 159–169.

    Google Scholar 

  • Kirpal, S. (2004). Researching work identities in a European context. Career Development International, 9(3), 199–221. https://doi.org/10.1108/13620430410535823

    Article  Google Scholar 

  • Knapp, M., Romeo, R., & Beecham, J. (2009). Economic cost of autism in the UK. Autism, 13(3), 317–336. 19369391. https://doi.org/10.1177/1362361309104246

    Article  Google Scholar 

  • Lai, J. K. Y., & Weiss, J. A. (2017). Priority service needs and receipt across the lifespan for individuals with autism spectrum disorder. Autism Research, 10, 1436–1447. https://doi.org/10.1002/aur.1786

    Article  Google Scholar 

  • Leigh, J. P., & Du, J. (2015). Brief report: Forecasting the economic burden of autism in 2015 and 2025 in the United States. Journal of Autism and Developmental Disorders, 45(12), 4135–4139.

    Article  Google Scholar 

  • Leigh, J. P., Grosse, S. D., Cassady, D. L., Melnikow, J., & Hertz-Picciotto, I. (2016). Spending by California’s department of developmental services for persons with autism across demographic and expenditure categories. PLoS One, 11(3), 4–23. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4807877/

    Article  Google Scholar 

  • Lin, J. (2014). Medical care burden of children with autism spectrum disorders. Journal of Autism and Developmental Disorders, 1, 242–247. https://doi.org/10.1007/s40489-014-0023-8

    Article  Google Scholar 

  • Liptak, G. S., Stuart, T., & Auinger, P. (2006). Health care utilization and expenditures for children with autism: Data from U.S. national samples. Journal of Autism and Developmental Disorders, 36(7), 871–879.

    Article  Google Scholar 

  • Lokhandwala, T., Khanna, R., & West-Strum, D. (2012). Hospitalization burden among individuals with autism. Journal of Autism and Developmental Disorders, 42, 95–104.

    Article  Google Scholar 

  • Lorenz, T., & Heinitz, K. (2014). Aspergers–different, not less: Occupational strengths and job interests of individuals with Asperger’s syndrome. PLoS One, 9(6), e100358.

    Article  Google Scholar 

  • MacKay, T., Knapp, M., & Boyle, J. M. (2017). The microsegmentation of the autism spectrum: Economic and research implications for Scotland. Edinburgh, Scotland: The Scottish Government.

    Google Scholar 

  • Mandell, D. S., Cao, J., Ittenbach, R. F., & Pinto-Martin, J. (2006). Medicaid expenditures for children with autistic spectrum disorders: 1994 to 1999. Journal of Autism and Developmental Disorders, 36(4), 475–485.

    Article  Google Scholar 

  • Matthews, D. (2016, April 21). This chart shows just how skewed our autism funding priorities are. https://www.vox.com/2016/4/21/11464144/autism-funding-services-biology

  • Mazefsky, C. A., Folstein, S. E., & Lainhart, J. E. (2008). Overrepresentation of mood and anxiety disorders in adults with autism and their first-degree relatives: What does it mean? Autism Research, 1(3), 193–197.

    Article  Google Scholar 

  • Meltzer, J. L. (2008). Brief report: Sleep in parents of children with autism spectrum disorders. Journal of Pediatric Psychology, 33(4), 380–386. https://doi.org/10.1093/jpepsy/jsn005. Epub 2008 Feb 4.

    Article  Google Scholar 

  • Mint.com. (2013). https://blog.mint.com/planning/the-cost-of-raising-a-special-needs-child-0713/

  • Mondoza, R. L. (2010). The economics of autism in Egypt. American Journal of Economics and Business Administration, 2(1), 12–19. https://www.ssrn.com/abstract=1553452

    Article  Google Scholar 

  • Montes, G., & Halterman, J. S. (2008). Association of childhood autism spectrum disorders and loss of family income. Pediatrics, 121(4), 821–826. https://doi.org/10.1542/peds.2007-1594

    Article  Google Scholar 

  • Muller, E., Schuler, A., & Yates, G. (2008). Social challenges and supports from the perspective of individuals with Asperger syndrome and other autism spectrum disabilities. Autism, 12(2), 173–190. https://doi.org/10.1177/1362361307086664

    Article  Google Scholar 

  • Myasdf.org. (2019). Autism spectrum disorder foundation. http://myasdf.org/site/media-center/articles/the-financial-impact-of-an-autism-diagnosis/

  • National Autistic Society. (2016). Retrieved from http://www.autism.org.uk/about/what-is.aspx. Accessed 3 Mar 2016.

  • NCSL. (2018). National conference of state legislature autism and insurance coverage state laws. http://www.ncsl.org/research/health/autism-and-insurance-coverage-state-laws.aspx

  • Openminds.com. (2017). https://www.openminds.com/intelligence-report/special-education-market-34-1-billion-spending-6-7-million-children-2015/

  • Phipps, J. (2016, August 30). How to plan for retirement when you have a child with autism or special needs. Smart Money. https://www.bankrate.com/finance/personal-finance/costs-of-caring-for-child-with-autism.aspx

  • Raz, R., Lerner-Geva, L., Leon, O., Chodick, G., & Gabis, L. V. (2013). A survey of out-of-pocket expenditures for children with autism spectrum disorder in Israel. Journal of Autism and Developmental Disorders, 43(10), 2295–2302.

    Article  Google Scholar 

  • Richards, J. (2012). Examining the exclusion of employees with Asperger syndrome from the workplace. Personnel Review, 41(5), 630–646.

    Article  Google Scholar 

  • Roddy, A., & O’Neill, C. (2018). The economic costs and its predictors for childhood autism spectrum disorders in Ireland: How is the burden distributed? https://journals.sagepub.com/doi/full/10.1177/1362361318801586. First Published October 1, 2018 Research Article.

  • Rosenbaum, J. E. (1979). Tournament mobility: Career patterns in a corporation. Administrative Science Quarterly, 24(2), 220–241.

    Article  Google Scholar 

  • Roux, A. M., Shattuck, P. T., Cooper, B. P., Anderson, K. A., Wagner, M., & Narendorf, S. C. (2013). Postsecondary employment experiences among young adults with an autism spectrum disorder: Employment in young adults with autism. Journal of the American Academy of Child & Adolescent Psychiatry, 52(9), 931–939.

    Article  Google Scholar 

  • Sarris, M. (2019). Stress and the autism parent. Interactive Autism Network at Kennedy Krieger Institute. https://iancommunity.org/ssc/stress-and-autism-parent

  • Seltzer, M. M., Almeida, D. M., Greenberg, J. S., Savla, J., Stawski, R. S., Hong, J., et al. (2009). Psychological and biological markers of daily lives of midlife parents of children with disabilities. Journal of Health and Social Behavior, 50, 1–15.

    Article  Google Scholar 

  • Shapiro, A. F., Gottman, J. M., & Carrere, S. (2000). The baby and the marriage: Identifying factors that buffer against decline in marital satisfaction after the first baby arrives. Journal of Family Psychology, 14, 59–70.

    Article  Google Scholar 

  • Sharpe, D., & Baker, D. (2011). The financial side of autism: Private and public costs. In M. Mohammadi (Ed.), A comprehensive book on autism spectrum disorders (pp. 275–296). Rijeka, Croatia: InTech. https://www.researchgate.net/publication/221916702_The_Financial_Side_of_Autism_Private_and_Public_Costs

    Google Scholar 

  • Sharpe, D. L., & Baker, D. L. (2007). Financial issues associated with having a child with autism. Journal of Family and Economic Issues, 28(2), 247–264.

    Article  Google Scholar 

  • Shattuck, P. T., Narendorf, S. C., Cooper, B., Sterzing, P. R., Wagner, M., & Taylor, J. L. (2012). Postsecondary education and employment among youth with an autism spectrum disorder. Pediatrics, 129(6), 1042–1049.

    Article  Google Scholar 

  • Shiono, P. H., & Quinn, L. S. (1994). Epidemiology of divorce. Future of Children, 4, 15–28.

    Article  Google Scholar 

  • Smith, L. E., Hong, J., Seltzer, M. M., Greenberg, J. S., Almeida, D. M., & Bishop, S. L. (2010). Daily experiences among mothers of adolescents and adults with autism spectrum disorder. Journal of Autism and Developmental Disorders, 40(2), 167–178. https://doi.org/10.1007/s10803-009-0844-y

    Article  Google Scholar 

  • Special Learning. (2019). Funding overview. https://www.special-learning.com/article/funding_overview

  • Taylor, J. L., Henninger, N. A., & Mailick, M. R. (2015). Longitudinal patterns of employment and postsecondary education for adults with autism and average-range IQ. Autism, 19(7), 785–793.

    Article  Google Scholar 

  • Urbano, R. C., & Hodapp, R. M. (2007). Divorce in families of children with down syndrome: A population-based study. American Journal on Mental Retardation, 112, 61–274.

    Google Scholar 

  • van Steijn, D. J., Oerlemans, A. M., de Ruiter, S. W., van Aken, M. A., Buitelaar, J. K., & Rommelse, N. N. (2013). Are parental autism spectrum disorder and/or attention-deficit/hyperactivity disorder symptoms related to parenting styles in families with ASD (+ADHD) affected children? European Child and Adolescent Psychiatry, 22(11), 671–681. https://doi.org/10.1007/s00787-013-0408-8

    Article  Google Scholar 

  • Volkmar, F. R., Lord, C., Bailey, A., Schultz, R. T., & Klin, A. (2004). Autism and pervasive developmental disorders. Journal of Child Psychology and Psychiatry, 45(1), 135–170.

    Article  Google Scholar 

  • Wang, L., & Leslie, D. L. (2010). Health care expenditures for children with autism spectrum disorders in Medicaid. Journal of the American Academy of Child and Adolescent Psychiatry, 49(11), 1165–1171. https://doi.org/10.1016/j.jaac.2010.08.003

    Article  Google Scholar 

  • Wright, S. D. (2016). Autism spectrum disorder in mid and later life. London: Jessica Kingsley Publishers.

    Google Scholar 

  • Xiong, N., Yang, L., Yu, Y., Hou, J., Li, J., Li, Y., et al. (2011). Investigation of raising burden of children with autism, physical disability and mental disability in China. Research in Developmental Disabilities, (1), 306–311. https://doi.org/10.1016/j.ridd.2010.10.003

    Article  Google Scholar 

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Hurley-Hanson, A.E., Giannantonio, C.M., Griffiths, A.J. (2020). The Costs of Autism. In: Autism in the Workplace. Palgrave Explorations in Workplace Stigma. Palgrave Macmillan, Cham. https://doi.org/10.1007/978-3-030-29049-8_3

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