Skip to main content
Top
Gepubliceerd in: Journal of Autism and Developmental Disorders 5/2019

28-01-2019 | OriginalPaper

“I Would Like for My Child to be Happy with His Life”: Parental Hopes for Their Children with ASD Across the Lifespan

Auteurs: Erinn H. Finke, Jennifer M. D. Kremkow, Kathryn D. R. Drager, Angelique Murillo, Laura Richardson, Elizabeth C. Serpentine

Gepubliceerd in: Journal of Autism and Developmental Disorders | Uitgave 5/2019

Log in om toegang te krijgen
share
DELEN

Deel dit onderdeel of sectie (kopieer de link)

  • Optie A:
    Klik op de rechtermuisknop op de link en selecteer de optie “linkadres kopiëren”
  • Optie B:
    Deel de link per e-mail

Abstract

The purpose of this project was to understand the hopes of parents with children with ASD. Particularly understudied are the hopes parents have for long-term outcomes for their child. A cross-sectional focus group design was used and six focus groups were completed. These groups included parents of (1) preschool aged children who were recently diagnosed, (2) children in early elementary school, (3) children in later elementary school, (4) children in middle school, (5) children in high school, and (6) children who are adults with ASD. Results indicated 77.4% of the data were devoted to hopes for the children’s independence, happiness, and skill improvement; increased authentic socially significant relationships; and future employment.
Bijlagen
Alleen toegankelijk voor geautoriseerde gebruikers
Literatuur
go back to reference Altiere, M. J., & von Kluge, S. (2009). Searching for acceptance: Challenges encountered while raising a child with autism. Journal of Intellectual and Developmental Disability, 34, 142–152.CrossRefPubMed Altiere, M. J., & von Kluge, S. (2009). Searching for acceptance: Challenges encountered while raising a child with autism. Journal of Intellectual and Developmental Disability, 34, 142–152.CrossRefPubMed
go back to reference Bernard, H. R. (2013). Social research methods: Qualitative and quantitative approaches (2nd edn.). Thousand Oaks: Sage Publishing. Bernard, H. R. (2013). Social research methods: Qualitative and quantitative approaches (2nd edn.). Thousand Oaks: Sage Publishing.
go back to reference Bronfenbrenner, U. (1979). The ecology of human development: Experiments by design and nature. Cambridge: Harvard University Press. Bronfenbrenner, U. (1979). The ecology of human development: Experiments by design and nature. Cambridge: Harvard University Press.
go back to reference Bronfenbrenner, U. (1986). Ecology of the family as a context for human development: Research perspectives. Developmental Psychology, 22, 723.CrossRef Bronfenbrenner, U. (1986). Ecology of the family as a context for human development: Research perspectives. Developmental Psychology, 22, 723.CrossRef
go back to reference Bronfenbrenner, U. (1994). Ecological models of human development. International Encyclopedia of Education, 3(2), 37–43. Bronfenbrenner, U. (1994). Ecological models of human development. International Encyclopedia of Education, 3(2), 37–43.
go back to reference Burgess, A. F., & Gutstein, S. E. (2007). Quality of life for people with autism: Raising the standard for evaluating successful outcomes. Child and Adolescent Mental Health, 12(2), 80–86.CrossRef Burgess, A. F., & Gutstein, S. E. (2007). Quality of life for people with autism: Raising the standard for evaluating successful outcomes. Child and Adolescent Mental Health, 12(2), 80–86.CrossRef
go back to reference Dale, E., Jahoda, A., & Knott, F. (2006). Mothers’ attributions following their child’s diagnosis of autistic spectrum disorder: Exploring links with maternal levels of stress, depression and expectations about their child’s future. Autism, 10, 463–479.CrossRefPubMed Dale, E., Jahoda, A., & Knott, F. (2006). Mothers’ attributions following their child’s diagnosis of autistic spectrum disorder: Exploring links with maternal levels of stress, depression and expectations about their child’s future. Autism, 10, 463–479.CrossRefPubMed
go back to reference Davis, N. O., & Carter, A. S. (2008). Parenting stress in mothers and fathers of toddlers with autism spectrum disorders: Associations with child characteristics. Journal of Autism and Developmental Disorders, 38, 1278.CrossRef Davis, N. O., & Carter, A. S. (2008). Parenting stress in mothers and fathers of toddlers with autism spectrum disorders: Associations with child characteristics. Journal of Autism and Developmental Disorders, 38, 1278.CrossRef
go back to reference Dempsey, I., & Keen, D. (2008). A review of processes and outcomes in family-centered services for children with a disability. Topics in Early Childhood Special Education, 28, 42–52.CrossRef Dempsey, I., & Keen, D. (2008). A review of processes and outcomes in family-centered services for children with a disability. Topics in Early Childhood Special Education, 28, 42–52.CrossRef
go back to reference Donaldson, A. L., Krejcha, K., & McMillin, A. (2017). A strengths-based approach to autism: Neurodiversity and partnering with the autism community. Perspectives of the ASHA Special Interests Groups, 2, 56–68.CrossRef Donaldson, A. L., Krejcha, K., & McMillin, A. (2017). A strengths-based approach to autism: Neurodiversity and partnering with the autism community. Perspectives of the ASHA Special Interests Groups, 2, 56–68.CrossRef
go back to reference Dunst, C. J. (1999). Placing parent education in conceptual and empirical context. Topics in Early Childhood Special Education, 19, 141–147.CrossRef Dunst, C. J. (1999). Placing parent education in conceptual and empirical context. Topics in Early Childhood Special Education, 19, 141–147.CrossRef
go back to reference Dunst, C. J., Trivette, C. M., & Hamby, D. W. (2007). Meta-analysis of family-centered help giving practices research. Developmental Disabilities Research Reviews, 13, 370–378.CrossRef Dunst, C. J., Trivette, C. M., & Hamby, D. W. (2007). Meta-analysis of family-centered help giving practices research. Developmental Disabilities Research Reviews, 13, 370–378.CrossRef
go back to reference Finke, E. H. (2016). Friendship: Operationalizing the intangible to improve friendship-based outcomes for individuals with autism spectrum disorder. American Journal of Speech-Language Pathology, 25, 654–663.CrossRefPubMed Finke, E. H. (2016). Friendship: Operationalizing the intangible to improve friendship-based outcomes for individuals with autism spectrum disorder. American Journal of Speech-Language Pathology, 25, 654–663.CrossRefPubMed
go back to reference 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, 45–69.CrossRefPubMed 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, 45–69.CrossRefPubMed
go back to reference Hall, H. R., & Graff, J. C. (2011). The relationships among adaptive behaviors of children with autism, family support, parenting stress, and coping. Issues in Comprehensive Pediatric Nursing, 34(1), 4–25.CrossRefPubMed Hall, H. R., & Graff, J. C. (2011). The relationships among adaptive behaviors of children with autism, family support, parenting stress, and coping. Issues in Comprehensive Pediatric Nursing, 34(1), 4–25.CrossRefPubMed
go back to reference Hendricks, D. R., & Wehman, P. (2009). Transition from school to adulthood for youth with autism spectrum disorders: Review and recommendations. Focus on Autism and Other Developmental Disabilities, 24, 77–88.CrossRef Hendricks, D. R., & Wehman, P. (2009). Transition from school to adulthood for youth with autism spectrum disorders: Review and recommendations. Focus on Autism and Other Developmental Disabilities, 24, 77–88.CrossRef
go back to reference Henninger, N. A., & Taylor, J. L. (2013). Outcomes in adults with autism spectrum disorders: A historical perspective. Autism, 17, 103–116.CrossRefPubMed Henninger, N. A., & Taylor, J. L. (2013). Outcomes in adults with autism spectrum disorders: A historical perspective. Autism, 17, 103–116.CrossRefPubMed
go back to reference Ivey, J. K. (2004). What do parents expect? A study of likelihood and importance for children with autism spectrum disorders. Focus on Autism and Other Developmental Disabilities, 19, 27–33.CrossRef Ivey, J. K. (2004). What do parents expect? A study of likelihood and importance for children with autism spectrum disorders. Focus on Autism and Other Developmental Disabilities, 19, 27–33.CrossRef
go back to reference Karst, J. S., & Van Hecke, A. V. (2012). Parent and family impact of autism spectrum disorders: A review and proposed model for intervention evaluation. Clinical Child and Family Psychology Review, 15(3), 247–277.CrossRefPubMed Karst, J. S., & Van Hecke, A. V. (2012). Parent and family impact of autism spectrum disorders: A review and proposed model for intervention evaluation. Clinical Child and Family Psychology Review, 15(3), 247–277.CrossRefPubMed
go back to reference King, G., Zwaigenbaum, L., Bates, A., Baxter, D., Rosenbaum, P. (2012). Parent views of the positive contributions of elementary and high school-aged children with autism spectrum disorders and Down syndrome. Child: Care, Health and Development, 38(6), 817–828. King, G., Zwaigenbaum, L., Bates, A., Baxter, D., Rosenbaum, P. (2012). Parent views of the positive contributions of elementary and high school-aged children with autism spectrum disorders and Down syndrome. Child: Care, Health and Development, 38(6), 817–828.
go back to reference Law, M., & MacDermid, J. (2008). Evidence-based rehabilitation: A guide to practice (2nd edn.). Thorofar: SLACK Incorporated. Law, M., & MacDermid, J. (2008). Evidence-based rehabilitation: A guide to practice (2nd edn.). Thorofar: SLACK Incorporated.
go back to reference Lee, L. C., Harrington, R. A., Louie, B. B., & Newschaffer, C. J. (2008). Children with autism: Quality of life and parental concerns. Journal of autism and developmental disorders, 38(6), 1147–1160.CrossRefPubMed Lee, L. C., Harrington, R. A., Louie, B. B., & Newschaffer, C. J. (2008). Children with autism: Quality of life and parental concerns. Journal of autism and developmental disorders, 38(6), 1147–1160.CrossRefPubMed
go back to reference Lin, C. R., Tsai, Y. F., & Chang, H. L. (2008). Coping mechanisms of parents of children recently diagnosed with autism in Taiwan: a qualitative study. Journal of Clinical Nursing, 17, 2733–2740.CrossRefPubMed Lin, C. R., Tsai, Y. F., & Chang, H. L. (2008). Coping mechanisms of parents of children recently diagnosed with autism in Taiwan: a qualitative study. Journal of Clinical Nursing, 17, 2733–2740.CrossRefPubMed
go back to reference Luther, E. H., Canham, D. L., & Cureton, V. Y. (2005). Coping and social support for parents of children with autism. The Journal of School Nursing, 21, 40–47.CrossRefPubMed Luther, E. H., Canham, D. L., & Cureton, V. Y. (2005). Coping and social support for parents of children with autism. The Journal of School Nursing, 21, 40–47.CrossRefPubMed
go back to reference Mandak, K., O’Neill, T., Light, J., & Fosco, G. M. (2017). Bridging the gap from values to actions: A family systems framework for family-centered AAC services. Augmentative and Alternative Communication, 33, 32–41.CrossRefPubMed Mandak, K., O’Neill, T., Light, J., & Fosco, G. M. (2017). Bridging the gap from values to actions: A family systems framework for family-centered AAC services. Augmentative and Alternative Communication, 33, 32–41.CrossRefPubMed
go back to reference McNaughton, D., Light, J., & Groszyk, L. (2001). ‘Don’t give up’: Employment experiences of individuals with amyotrophic lateral sclerosis who use augmentative and alternative communication. Augmentative and Alternative Communication, 17, 179–189. McNaughton, D., Light, J., & Groszyk, L. (2001). ‘Don’t give up’: Employment experiences of individuals with amyotrophic lateral sclerosis who use augmentative and alternative communication. Augmentative and Alternative Communication, 17, 179–189.
go back to reference Meline, T. (2006). Research in communication sciences and disorders: methods, applications, evaluation. Upper Saddle River: Prentice Hall. Meline, T. (2006). Research in communication sciences and disorders: methods, applications, evaluation. Upper Saddle River: Prentice Hall.
go back to reference Mottron, L. (2017). Should we change targets and methods of early intervention in autism, in favor of strengths-based education? European Journal of Child and Adolescent Psychiatry, 26, 815–825.CrossRef Mottron, L. (2017). Should we change targets and methods of early intervention in autism, in favor of strengths-based education? European Journal of Child and Adolescent Psychiatry, 26, 815–825.CrossRef
go back to reference Muir, K., & Strnadová, I. (2014). Whose responsibility? Resilience in families of children with developmental disabilities. Disability and Society, 29, 922–937.CrossRef Muir, K., & Strnadová, I. (2014). Whose responsibility? Resilience in families of children with developmental disabilities. Disability and Society, 29, 922–937.CrossRef
go back to reference Mulligan, J., MacCulloch, R., Good, B., & Nicholas, D. B. (2012). Transparency, hope, and empowerment: A model for partnering with parents of a child with autism spectrum disorder at diagnosis and beyond. Social Work in Mental Health, 10, 311–330.CrossRef Mulligan, J., MacCulloch, R., Good, B., & Nicholas, D. B. (2012). Transparency, hope, and empowerment: A model for partnering with parents of a child with autism spectrum disorder at diagnosis and beyond. Social Work in Mental Health, 10, 311–330.CrossRef
go back to reference Myers, B. J., Mackintosh, V. H., & Goin-Kochel, R. P. (2009). My greatest joy and my greatest heart ache:” Parents’ own words on how having a child in the autism spectrum has affected their lives and their families’ lives. Research in Autism Spectrum Disorders, 3(3), 670–684.CrossRef Myers, B. J., Mackintosh, V. H., & Goin-Kochel, R. P. (2009). My greatest joy and my greatest heart ache:” Parents’ own words on how having a child in the autism spectrum has affected their lives and their families’ lives. Research in Autism Spectrum Disorders, 3(3), 670–684.CrossRef
go back to reference Ogston, P. L., Mackintosh, V. H., & Myers, B. J. (2011). Hope and worry in mothers of children with an autism spectrum disorder or down syndrome. Research in Autism Spectrum Disorders, 5, 1378–1384.CrossRef Ogston, P. L., Mackintosh, V. H., & Myers, B. J. (2011). Hope and worry in mothers of children with an autism spectrum disorder or down syndrome. Research in Autism Spectrum Disorders, 5, 1378–1384.CrossRef
go back to reference Ooi, K. L., Ong, Y. S., Jacob, S. A., & Khan, T. M. (2016). A meta-synthesis on parenting a child with autism. Neuropsychiatric Disease and Treatment, 12, 745–762.PubMedPubMedCentral Ooi, K. L., Ong, Y. S., Jacob, S. A., & Khan, T. M. (2016). A meta-synthesis on parenting a child with autism. Neuropsychiatric Disease and Treatment, 12, 745–762.PubMedPubMedCentral
go back to reference Osborne, L. A., & Reed, P. (2010). Stress and self-perceived parenting behaviors of parents of children with autistic spectrum conditions. Research in Autism Spectrum Disorders, 4, 405–414.CrossRef Osborne, L. A., & Reed, P. (2010). Stress and self-perceived parenting behaviors of parents of children with autistic spectrum conditions. Research in Autism Spectrum Disorders, 4, 405–414.CrossRef
go back to reference Petrina, N., Carter, M., & Stephenson, J. (2014). The nature of friendship in children with autism spectrum disorders: A systematic review. Research in Autism Spectrum Disorders, 8, 111–126.CrossRef Petrina, N., Carter, M., & Stephenson, J. (2014). The nature of friendship in children with autism spectrum disorders: A systematic review. Research in Autism Spectrum Disorders, 8, 111–126.CrossRef
go back to reference Poon, K. K., Koh, L., & Magiati, I. (2013). Parental perspectives on the importance and likelihood of adult outcomes for children with autism spectrum disorder, intellectual disabilities or multiple disabilities. Research in Autism Spectrum Disorders, 7, 382–390.CrossRef Poon, K. K., Koh, L., & Magiati, I. (2013). Parental perspectives on the importance and likelihood of adult outcomes for children with autism spectrum disorder, intellectual disabilities or multiple disabilities. Research in Autism Spectrum Disorders, 7, 382–390.CrossRef
go back to reference Shenaar-Golan, V. (2016). The subjective well-being of parents of children with developmental disabilities: The role of hope as a predictor and fosterer of well-being. Journal of Social Work in Disability and Rehabilitation, 15, 77–95.CrossRefPubMed Shenaar-Golan, V. (2016). The subjective well-being of parents of children with developmental disabilities: The role of hope as a predictor and fosterer of well-being. Journal of Social Work in Disability and Rehabilitation, 15, 77–95.CrossRefPubMed
go back to reference Snyder, C. R. (2002). Hope theory: Rainbow in the mind. Psychological Inquiry, 13, 249–275.CrossRef Snyder, C. R. (2002). Hope theory: Rainbow in the mind. Psychological Inquiry, 13, 249–275.CrossRef
go back to reference Snyder, C. R., Rand, K. L., & Sigmon, D. R. (2002). Hope theory: A member of the positive psychology family. In Eds., C. R. Snyder & S. J. Lopez, Handbook of positive psychology (pp. 257–276). New York: Oxford University Press. Snyder, C. R., Rand, K. L., & Sigmon, D. R. (2002). Hope theory: A member of the positive psychology family. In Eds., C. R. Snyder & S. J. Lopez, Handbook of positive psychology (pp. 257–276). New York: Oxford University Press.
go back to reference Stewart, K., & Williams, M. (2005). Researching online populations: The use of online focus groups for social research. Qualitative Research, 5(4), 395–416.CrossRef Stewart, K., & Williams, M. (2005). Researching online populations: The use of online focus groups for social research. Qualitative Research, 5(4), 395–416.CrossRef
go back to reference Stokes, M., Newton, N., & Kaur, A. (2007). Stalking, and social and romantic functioning among adolescents and adults with autism spectrum disorder. Journal of Autism and Developmental Disorders, 37, 1969–1986.CrossRefPubMed Stokes, M., Newton, N., & Kaur, A. (2007). Stalking, and social and romantic functioning among adolescents and adults with autism spectrum disorder. Journal of Autism and Developmental Disorders, 37, 1969–1986.CrossRefPubMed
go back to reference Winter-Messiers, M. A., Herr, C. M., Wood, C. E., Brooks, A. P., Gates, M. A. M., Houston, T. L., & Tingstad, K. I. (2007). How far can Brian ride the Daylight 4449 Express? A strengths-based model of asperger syndrome based on special interest areas. Focus on Autism and Other Developmental Disabilities, 22, 67–79.CrossRef Winter-Messiers, M. A., Herr, C. M., Wood, C. E., Brooks, A. P., Gates, M. A. M., Houston, T. L., & Tingstad, K. I. (2007). How far can Brian ride the Daylight 4449 Express? A strengths-based model of asperger syndrome based on special interest areas. Focus on Autism and Other Developmental Disabilities, 22, 67–79.CrossRef
go back to reference Woodgate, R. L., Ateah, C., & Secco, L. (2008). Living in a world of our own: The experience of parents who have a child with autism. Qualitative Health Research, 18, 1075–1083.CrossRefPubMed Woodgate, R. L., Ateah, C., & Secco, L. (2008). Living in a world of our own: The experience of parents who have a child with autism. Qualitative Health Research, 18, 1075–1083.CrossRefPubMed
go back to reference Woodyatt, C. R., Finneran, C. A., & Stephenson, R. (2016). In-person versus online focus group discussions: A comparative analysis of data quality. Qualitative Health Research, 26, 741–749.CrossRefPubMed Woodyatt, C. R., Finneran, C. A., & Stephenson, R. (2016). In-person versus online focus group discussions: A comparative analysis of data quality. Qualitative Health Research, 26, 741–749.CrossRefPubMed
Metagegevens
Titel
“I Would Like for My Child to be Happy with His Life”: Parental Hopes for Their Children with ASD Across the Lifespan
Auteurs
Erinn H. Finke
Jennifer M. D. Kremkow
Kathryn D. R. Drager
Angelique Murillo
Laura Richardson
Elizabeth C. Serpentine
Publicatiedatum
28-01-2019
Uitgeverij
Springer US
Gepubliceerd in
Journal of Autism and Developmental Disorders / Uitgave 5/2019
Print ISSN: 0162-3257
Elektronisch ISSN: 1573-3432
DOI
https://doi.org/10.1007/s10803-019-03882-9

Andere artikelen Uitgave 5/2019

Journal of Autism and Developmental Disorders 5/2019 Naar de uitgave