Title

Parents Raising Young Adults on the Autism Spectrum: Perspectives on Advocacy and Occupational Balance

Start Time

16-10-2009 9:30 AM

End Time

16-10-2009 11:00 AM

Abstract

This paper presents the results of an investigation of parents’ perspectives on advocacy actions and occupational balance raising young adults on the autism spectrum. Previous findings on parent advocacy have focused on mothers (1) and young children with autism (2); however data are sparse regarding parenting the older adult child on the autism spectrum. As children transition to adulthood, at the age of 21 federally mandated services under the Individuals with Disabilities Education Act (IDEA) are discontinued. Although a 1997 amendment to IDEA requires individualized transition planning to begin at age 14, parents frequently confront additional challenges as their roles shift from caregiver of a young child to life-long facilitator. Adequate vocational, educational, and social programming for the young adult on the autism spectrum based on a family care model is limited. Through the theoretical framework of empowerment (3) and the paradigm of occupational justice (4), an exploration of parents’ strengths and needs as they assist their children in navigating paths towards independence are delineated. Utilizing a concurrent mixed methods design, parent participants raising a young adult child on the autism spectrum disorders (n = 14) completed the Parent Advocacy Scale (PAS) (5) to quantify advocacy efforts on behalf of their children, a semi-structured interview on occupational balance (leisure pursuits), and a demographic questionnaire. The advocacy scale and demographic data were analyzed using statistical software and secondary, in-depth analyses of parent interviews using Atlas.ti software are presented. Results indicate that services for young adults on the autism spectrum is severely lacking. Also, parents perceive advocacy as an obligation and create numerous social networks on behalf of their adult children in increase awareness and social action. By exploring this unique parent perspective of raising an older adult child, parent narratives documenting their continuous struggles for educational, social and vocational services may lead to a greater understanding of their challenges and comprehensive service delivery from occupational therapists working towards the Centennial Vision of the American Occupational Therapy Association (AOTA).

References

McGuire, B. K., Crowe, T. K., Law, M., & VanLeit, B. (2004). Mothers of children with disabilities: Occupational concerns and solutions. OTJR: Occupation, Participation, and Health, 24(2), 54-63. Access Article

DeGrace, B. W. (2004). The everyday occupation of families with children with autism. American Journal of Occupational Therapy, 58(5), 543-550. DOI: 10.5014/ajot.58.5.543

Zimmerman, M. A., Israel, B. A., Schulz, A. & Checkoway, B. (1992). Further exploration in empowerment. American Journal of Community Psychology, 20(6), 207-227. DOI: 10.1007/BF00942234 [Also available through UMich: Access]

Townsend, E. & Wilcock, A. A. (2004). Occupational justice and client-centered practice: A dialogue in progress. Canadian Journal of Occupational Therapy, 71(2), 75-87. Article Access

Nachshen, J., Anderson, L., & Jamieson, J. (2001). The Parent Advocacy Scale: Measuring advocacy in parents of children with special needs. Journal on Developmental Disabilities, 8(1), 93-105. Article Access

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Oct 16th, 9:30 AM Oct 16th, 11:00 AM

Parents Raising Young Adults on the Autism Spectrum: Perspectives on Advocacy and Occupational Balance

This paper presents the results of an investigation of parents’ perspectives on advocacy actions and occupational balance raising young adults on the autism spectrum. Previous findings on parent advocacy have focused on mothers (1) and young children with autism (2); however data are sparse regarding parenting the older adult child on the autism spectrum. As children transition to adulthood, at the age of 21 federally mandated services under the Individuals with Disabilities Education Act (IDEA) are discontinued. Although a 1997 amendment to IDEA requires individualized transition planning to begin at age 14, parents frequently confront additional challenges as their roles shift from caregiver of a young child to life-long facilitator. Adequate vocational, educational, and social programming for the young adult on the autism spectrum based on a family care model is limited. Through the theoretical framework of empowerment (3) and the paradigm of occupational justice (4), an exploration of parents’ strengths and needs as they assist their children in navigating paths towards independence are delineated. Utilizing a concurrent mixed methods design, parent participants raising a young adult child on the autism spectrum disorders (n = 14) completed the Parent Advocacy Scale (PAS) (5) to quantify advocacy efforts on behalf of their children, a semi-structured interview on occupational balance (leisure pursuits), and a demographic questionnaire. The advocacy scale and demographic data were analyzed using statistical software and secondary, in-depth analyses of parent interviews using Atlas.ti software are presented. Results indicate that services for young adults on the autism spectrum is severely lacking. Also, parents perceive advocacy as an obligation and create numerous social networks on behalf of their adult children in increase awareness and social action. By exploring this unique parent perspective of raising an older adult child, parent narratives documenting their continuous struggles for educational, social and vocational services may lead to a greater understanding of their challenges and comprehensive service delivery from occupational therapists working towards the Centennial Vision of the American Occupational Therapy Association (AOTA).