Transitioning young adults with autism: Hopes & challenges for parents

Abstract

Data generated by the Center for Disease Control (CDC) from the 2010 census indicates that out of four million children born in the United States "approximately 36,500 children will eventually be diagnosed with an [Autism Spectrum Disorder] ASD" (http://www.cdc.gov/ncbddd/autism/data.html ). The process of caring for an individual with ASD "lasts over 5 decades" (Chou, Lee, Lin, Kroger & Chang, pp.282, 2009) and an estimated lifetime cost to care is {dollar}3.2 million (http://www.cdc.gov/ncbddd/autism/data.html ). CDC states that the average medical expenses for an individual with ASD exceed those of an individual without ASD by {dollar} 4,110 to {dollar} 6,200 annually. However some individuals labeled as ASD are intellectually capable and socially independent.;Meeting needed expenses remains a major financial stress for parents of a child with ASD, adding on the challenge they face when their children age out of the mandatory education system and move into community or work environment. Parents of children with autism engage in intense planning for the future. However, this might not be the same for parents whose children have ASD with high Intelligence Quotient (IQ) and average to high cognitive abilities. This holds primary importance for aging parents as they need to arrange future care for their child. Making such arrangements proves difficult, as many parents, especially those belonging to lower income groups, are not able to seek access to the services.;I explore factors associated with the hopefulness of parents, and explored the key factors that influence a parent's decision to accept or refuse referrals to continuing services. I focused on barriers, family dynamics, and social networks developed by parents of children with ASD. The data collected was audio recorded and analyzed through ATLAS-ti software. Findings are discussed in association with the social capital theory and recommendations are made at the end of this thesis.;My research contributes to the limited literature on transition challenges of families of adolescents with ASD. It will enhance current social work practice efficacy and promote the development of newer service networks that directly influence the hopefulness of families and further motivate their decision to continue with new services and referrals.