Title

Poster Session - Quality of life of transition age young adults on the autism spectrum and their families through an occupation-based lens

Location

New River Rooms A & B

Start Time

2-10-2015 8:00 PM

End Time

2-10-2015 9:00 PM

Abstract

Translation of occupational science

Characteristics of Autism Spectrum Disorder (ASD) present unique challenges to individuals and their families. Raising children with ASD is energy intensive and time consuming, and necessitates a loss of familial roles and productivity. Transitioning to adulthood is a particularly challenging time for those with ASD and their families at a time when child rearing demands usually decline, parents of young adults with ASD are often faced with increased daily care taking demands. Parents report feelings of anxiety about their youth’s vocational future, social participation, and safety, and engage in frequent advocacy activities (Graetz, 2010). This impacts family quality of life (FQOL), or the dynamic sense of well being of the family. When FQOL of a family is satisfactory, each member is likely to be emotionally healthier, and participate in activities at home and at work (Zuna et al., 2011)

Due to the increasing prevalence of ASD, the number of families with a young adult with ASD is also rising. This has led to a greater need for services for these young adults, as once they leave school where supports are mandated, service needs far exceed availability (OAR, 2009). In the absence of standard societal mechanisms for appropriate supports and services, families shoulder many of the responsibilities associated with finding services for their children (Lord & Bishop, 2010). This suggests the need to regard ASD as a public health concern and to place an emphasis on examining resources for adults with ASD and their families. This is particularly important since outcomes for these young adults for independent living and employment tend to be poor, with the majority demonstrating continued dependence on their families (OAR, 2009).

This theoretical paper will explore Family Quality of Life (FQOL) in families with transitioning youth with ASD, and will examine how daily roles and occupations of the family are influenced by having a young adult on the spectrum, based on a qualitative study of family quality of life from the perspective of parents of transitional youth with ASD (Demchick, 2012). It will also discuss the results of an intervention program for young adults with ASD which showed participation in a meaningful challenge course activity with typical peers enhanced quality of life of individuals and their families (Crabtree & Demchick, in press)

Participants in this forum will reflect upon how disability related supports influence participation in occupation, and will explore advocacy in families with transition age youth. Occupational balance and occupational justice will be discussed pertaining to family members as well as to the young adult with ASD. We will discuss the value of looking at disability related support and policy through an occupation-based lens.

Discussion objectives:

Analyze the relationship between disability related support and participation in occupation for transition aged youth with autism and their families

Discuss occupational balance and occupational justice pertaining to family members as well as to young adult with ASD.

References

References:

Crabtree, L. & Demchick, B. (in press). Adults on the autism spectrum: Perceived effects of participation in a community-based challenge course program. Occupational Therapy in Mental Health.

Demchick, B. (2012).Quality of life in families with transition aged youth on the autism spectrum. Doctoral Dissertation. Towson University.

Graetz, J. E. (2010). Autism grows up: Opportunities for adults with autism. Disability and Society, 25(1), 33-47.

Lord, C. & Bishop, S. L. (2010). Autism spectrum disorders: Diagnosis, prevalence and services for children and families. Society for Research in Child Development, 24(2) 3-21.

Zuna, N., Summers, J.A., Turnbull, A.P., Hu, S., & Xu, S. (2011). Theorizing about family quality of life: Enhancing the quality of life in people with intellectual disabilities. Social Indicators Research Series, 41(5), 241-278.

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Oct 2nd, 8:00 PM Oct 2nd, 9:00 PM

Poster Session - Quality of life of transition age young adults on the autism spectrum and their families through an occupation-based lens

New River Rooms A & B

Translation of occupational science

Characteristics of Autism Spectrum Disorder (ASD) present unique challenges to individuals and their families. Raising children with ASD is energy intensive and time consuming, and necessitates a loss of familial roles and productivity. Transitioning to adulthood is a particularly challenging time for those with ASD and their families at a time when child rearing demands usually decline, parents of young adults with ASD are often faced with increased daily care taking demands. Parents report feelings of anxiety about their youth’s vocational future, social participation, and safety, and engage in frequent advocacy activities (Graetz, 2010). This impacts family quality of life (FQOL), or the dynamic sense of well being of the family. When FQOL of a family is satisfactory, each member is likely to be emotionally healthier, and participate in activities at home and at work (Zuna et al., 2011)

Due to the increasing prevalence of ASD, the number of families with a young adult with ASD is also rising. This has led to a greater need for services for these young adults, as once they leave school where supports are mandated, service needs far exceed availability (OAR, 2009). In the absence of standard societal mechanisms for appropriate supports and services, families shoulder many of the responsibilities associated with finding services for their children (Lord & Bishop, 2010). This suggests the need to regard ASD as a public health concern and to place an emphasis on examining resources for adults with ASD and their families. This is particularly important since outcomes for these young adults for independent living and employment tend to be poor, with the majority demonstrating continued dependence on their families (OAR, 2009).

This theoretical paper will explore Family Quality of Life (FQOL) in families with transitioning youth with ASD, and will examine how daily roles and occupations of the family are influenced by having a young adult on the spectrum, based on a qualitative study of family quality of life from the perspective of parents of transitional youth with ASD (Demchick, 2012). It will also discuss the results of an intervention program for young adults with ASD which showed participation in a meaningful challenge course activity with typical peers enhanced quality of life of individuals and their families (Crabtree & Demchick, in press)

Participants in this forum will reflect upon how disability related supports influence participation in occupation, and will explore advocacy in families with transition age youth. Occupational balance and occupational justice will be discussed pertaining to family members as well as to the young adult with ASD. We will discuss the value of looking at disability related support and policy through an occupation-based lens.

Discussion objectives:

Analyze the relationship between disability related support and participation in occupation for transition aged youth with autism and their families

Discuss occupational balance and occupational justice pertaining to family members as well as to young adult with ASD.