Family Burden of Raising a Child with ASD
This chapter describes what we know about the burdens families face because a child is diagnosed with ASD. The chapter is deliberately one-sided focusing only on burdens. Parents of children with ASD earn less money, have higher expenses, have higher stress, smaller support networks, more anxiety, and considerable difficulties accessing child care, after-school care, and community services, as well as obtaining needed services at school. We estimate that raising a child with ASD costs at least twice the cost of raising a typically developing child. In practice, burdens in various domains of life are highly interrelated; thus, it is not unusual that a burden in one area (e.g., child care) may result in additional burdens in other areas (e.g., employment, schooling). Wise policy design takes into account the compounding impact of numerous burdens across multiple, often disconnected, systems; the wide heterogeneity of ASD; and the family ecology.
- Handelman JS, Harris SL, Martins MP. Helping children with autism enter the mainstream. In: Volkmar FR, Paul R, Klin A, Cohen D, editors. Handbook of autism and pervasive developmental disorders. 3rd ed. Hoboken: Wiley; 2005. p. 1029–42.Google Scholar
- Individuals with Disabilities Education Act Regulations 34 CFR. Part 300. 2006.Google Scholar
- Kaufhold JA, Alverez VG, Arnold M. Lack of school supplies, materials and resources as an elementary cause of frustration and burnout in South Texas special education teachers. J Instr Psychol. 2006;32(3):159–61.Google Scholar
- Klein S. Reducing special education paperwork. Princ. 2004;84(1):58–60.Google Scholar
- Lamb B. Lamb inquiry: special educational needs and parental confidence. Nottingham, NG; 2009. ISBN 978-1-84775-598-8.Google Scholar
- Lino M. Expenditures on children by families, 2011.U.S. Department of Agriculture, Center for Nutrition Policy and Promotion;2012. Miscellaneous Publication No. 1528–2011.Google Scholar
- Lord C, McGee JP. Educating children with autism. Washington, DC: National Academy Press; 2001.Google Scholar
- Montes G. Unmet needs: child care for children with autism in the United States. Rochester: Children’s Institute Press; 2011.Google Scholar
- Principal Kendrick Blog. Twelve Tips for Setting Up An Autistic Classroom. October 10, 2007. Available at http://kendrik2.wordpress.com/. Accessed 12 May 2012.
- Stroul BA, Friedman RM. A system of care for children and youths with severe emotional disturbances. Revth ed. Washington, DC: Georgetown University Child Development Center, CASSP Technical Assistance Center; 1986.Google Scholar
- What Kindergarten Teachers Wish Parents Knew. Available at: http://www.scholastic.com/resources/article/what-kindergarten-teachers-wish-parents-knew. Accessed 17 May 2012.
- Worcester JA, Nesman TM, Mendez L, Keller HR. Giving voice to parents of young children with challenging behavior. Except Child. 2008;74(4):509–25.Google Scholar