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Gepubliceerd in: Journal of Autism and Developmental Disorders 6/2008

01-07-2008 | Original Paper

Children with Autism: Quality of Life and Parental Concerns

Auteurs: Li-Ching Lee, Rebecca A. Harrington, Brian B. Louie, Craig J. Newschaffer

Gepubliceerd in: Journal of Autism and Developmental Disorders | Uitgave 6/2008

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Abstract

Past research has shown that children with autism and their families have compromised quality of life (QOL) in several domains. This study examined QOL and parental concerns in children with autism during early childhood, childhood, and adolescence compared to children with Attention Deficit Disorder/Attention Deficit Hyperactivity Disorder (ADD/ADHD) and to typical controls from a US national sample. Families with children diagnosed with autism reported more profound QOL effects than families of children with ADD/ADHD or unaffected controls. Children with autism were significantly less likely to attend religious services, more likely to miss school, and less likely to participate in organized activities. Parental concerns over learning difficulty, being bullied, stress-coping, and achievement were overwhelming in the autism group relative to the comparison groups.
Literatuur
go back to reference Allik, H., Larsson, J. O., & Smedje, H. (2006). Health-related quality of life in parents of school-age children with Asperger syndrome or high-functioning autism. Health Qual Life Outcomes, 4, 1.PubMedCrossRef Allik, H., Larsson, J. O., & Smedje, H. (2006). Health-related quality of life in parents of school-age children with Asperger syndrome or high-functioning autism. Health Qual Life Outcomes, 4, 1.PubMedCrossRef
go back to reference Bagwell, C. L., Molina, B. S., Pelham, W. E., Jr., & Hoza, B. (2001). Attention-deficit hyperactivity disorder and problems in peer relations: Predictions from childhood to adolescence. Journal of the American Academy of Child and Adolescent Psychiatry, 40(11), 1285–1292.PubMedCrossRef Bagwell, C. L., Molina, B. S., Pelham, W. E., Jr., & Hoza, B. (2001). Attention-deficit hyperactivity disorder and problems in peer relations: Predictions from childhood to adolescence. Journal of the American Academy of Child and Adolescent Psychiatry, 40(11), 1285–1292.PubMedCrossRef
go back to reference Baker, B. L., Blacher, J., Crnic, K. A., & Edelbrock, C. (2002). Behavior problems and parenting stress in families of three-year-old children with and without developmental delays. American Journal of Mental Retardation, 107(6), 433–444.PubMedCrossRef Baker, B. L., Blacher, J., Crnic, K. A., & Edelbrock, C. (2002). Behavior problems and parenting stress in families of three-year-old children with and without developmental delays. American Journal of Mental Retardation, 107(6), 433–444.PubMedCrossRef
go back to reference Ballaban-Gil, K., Rapin, I., Tuchman, R., & Shinnar, S. (1996). Longitudinal examination of the behavioral, language, and social changes in a population of adolescents and young adults with autistic disorder. Pediatric neurology, 15(3), 217–223.PubMedCrossRef Ballaban-Gil, K., Rapin, I., Tuchman, R., & Shinnar, S. (1996). Longitudinal examination of the behavioral, language, and social changes in a population of adolescents and young adults with autistic disorder. Pediatric neurology, 15(3), 217–223.PubMedCrossRef
go back to reference Bertelli, M., & Brown, I. (2006). Quality of life for people with intellectual disabilities. Current Opinion in Psychiatry, 19(5), 508–513.PubMedCrossRef Bertelli, M., & Brown, I. (2006). Quality of life for people with intellectual disabilities. Current Opinion in Psychiatry, 19(5), 508–513.PubMedCrossRef
go back to reference Blumberg, S., Olson, L., Frankel, M., Osborn, L., Srinath, K., & Giambo, P. (2005). Design and operation of the National Survey of Children’s Health, 2003. National Center for Health Statistics. Blumberg, S., Olson, L., Frankel, M., Osborn, L., Srinath, K., & Giambo, P. (2005). Design and operation of the National Survey of Children’s Health, 2003. National Center for Health Statistics.
go back to reference Bouma, R., & Schweitzer, R. (1990). The impact of chronic childhood illness on family stress: A comparison between autism and cystic fibrosis. Journal of Clinical Psychology, 46(6), 722–730.PubMedCrossRef Bouma, R., & Schweitzer, R. (1990). The impact of chronic childhood illness on family stress: A comparison between autism and cystic fibrosis. Journal of Clinical Psychology, 46(6), 722–730.PubMedCrossRef
go back to reference Brereton, A. V., Tonge, B. J., & Einfeld, S. L. (2006). Psychopathology in children and adolescents with autism compared to young people with intellectual disability. Journal of Autism and Developmental Disorders, 36, 863–870.PubMedCrossRef Brereton, A. V., Tonge, B. J., & Einfeld, S. L. (2006). Psychopathology in children and adolescents with autism compared to young people with intellectual disability. Journal of Autism and Developmental Disorders, 36, 863–870.PubMedCrossRef
go back to reference Bromley, J., Hare, D. J., Davison, K., & Emerson, E. (2004). Mothers supporting children with autistic spectrum disorders: Social support, mental health status and satisfaction with services. Autism, 8(4), 409–423.PubMedCrossRef Bromley, J., Hare, D. J., Davison, K., & Emerson, E. (2004). Mothers supporting children with autistic spectrum disorders: Social support, mental health status and satisfaction with services. Autism, 8(4), 409–423.PubMedCrossRef
go back to reference Cummins, R. A. (2005). Moving from the quality of life concept to a theory. Journal of Intellectual Disability Research, 49(10), 699–706.PubMedCrossRef Cummins, R. A. (2005). Moving from the quality of life concept to a theory. Journal of Intellectual Disability Research, 49(10), 699–706.PubMedCrossRef
go back to reference Curran, A. L., Sharples, P. M., White, C., & Knapp, M. (2001). Time costs of caring for children with severe disabilities compared with caring for children without disabilities. Developmental Medicine and Child Neurology, 43(8), 529–533.PubMedCrossRef Curran, A. L., Sharples, P. M., White, C., & Knapp, M. (2001). Time costs of caring for children with severe disabilities compared with caring for children without disabilities. Developmental Medicine and Child Neurology, 43(8), 529–533.PubMedCrossRef
go back to reference Dawson, G., Estes, A., Munson, J., Schellenberg, G., Bernier, R., & Abbott, R. (2007). Quantitative assessment of autism symptom-related traits in probands and parents: Broader Phenotype Autism Symptom Scale. Journal of Autism and Developmental Disorders, 37, 523–536.PubMedCrossRef Dawson, G., Estes, A., Munson, J., Schellenberg, G., Bernier, R., & Abbott, R. (2007). Quantitative assessment of autism symptom-related traits in probands and parents: Broader Phenotype Autism Symptom Scale. Journal of Autism and Developmental Disorders, 37, 523–536.PubMedCrossRef
go back to reference de Bildt, A., Sytema, S., Kraijer, D., Sparrow, S., & Minderaa, R. (2005). Adaptive functioning and behaviour problems in relation to level of education in children and adolescents with intellectual disability. Journal of Intellectual Disability Research, 49(Pt 9), 672–681.PubMedCrossRef de Bildt, A., Sytema, S., Kraijer, D., Sparrow, S., & Minderaa, R. (2005). Adaptive functioning and behaviour problems in relation to level of education in children and adolescents with intellectual disability. Journal of Intellectual Disability Research, 49(Pt 9), 672–681.PubMedCrossRef
go back to reference Donenberg, G., & Baker, B. L. (1993). The impact of young children with externalizing behaviors on their families. Journal of Abnormal Child Psychology, 21(2), 179–198.PubMedCrossRef Donenberg, G., & Baker, B. L. (1993). The impact of young children with externalizing behaviors on their families. Journal of Abnormal Child Psychology, 21(2), 179–198.PubMedCrossRef
go back to reference Donovan, A. M. (1988). Family stress and ways of coping with adolescents who have handicaps: Maternal perceptions. American Journal of Mental Retardation, 92(6), 502–509.PubMed Donovan, A. M. (1988). Family stress and ways of coping with adolescents who have handicaps: Maternal perceptions. American Journal of Mental Retardation, 92(6), 502–509.PubMed
go back to reference DuPaul, G. J., McGoey, K. E., Eckert, T. L., & VanBrakle, J. (2001). Preschool children with attention-deficit/hyperactivity disorder: Impairments in behavioral, social, and school functioning. Journal of the American Academy of Child and Adolescent Psychiatry, 40(5), 508–515.PubMedCrossRef DuPaul, G. J., McGoey, K. E., Eckert, T. L., & VanBrakle, J. (2001). Preschool children with attention-deficit/hyperactivity disorder: Impairments in behavioral, social, and school functioning. Journal of the American Academy of Child and Adolescent Psychiatry, 40(5), 508–515.PubMedCrossRef
go back to reference Ello, L. M., & Donovan, S. J. (2005). Assessment of the relationship between parenting stress and a child’s ability to functionally communicate. Research on Social Work Practice, 15(6), 531–544.CrossRef Ello, L. M., & Donovan, S. J. (2005). Assessment of the relationship between parenting stress and a child’s ability to functionally communicate. Research on Social Work Practice, 15(6), 531–544.CrossRef
go back to reference Escobar, R., Soutullo, C. A., Hervas, A., Gastaminza, X., Polavieja, P., & Gilaberte, I. (2005). Worse quality of life for children with newly diagnosed attention-deficit/hyperactivity disorder, compared with asthmatic and healthy children. Pediatrics, 116(3), e364–e369.PubMedCrossRef Escobar, R., Soutullo, C. A., Hervas, A., Gastaminza, X., Polavieja, P., & Gilaberte, I. (2005). Worse quality of life for children with newly diagnosed attention-deficit/hyperactivity disorder, compared with asthmatic and healthy children. Pediatrics, 116(3), e364–e369.PubMedCrossRef
go back to reference Fombonne, E. (2005). Epidemiology of autistic disorder and other pervasive developmental disorders. Journal of Clinical Psychiatry, 66(Suppl. 10), 3–8.PubMed Fombonne, E. (2005). Epidemiology of autistic disorder and other pervasive developmental disorders. Journal of Clinical Psychiatry, 66(Suppl. 10), 3–8.PubMed
go back to reference Fombonne, E., Simmons, H., Ford, T., Meltzer, H., & Goodman, R. (2001). Prevalence of pervasive developmental disorders in the British nationwide survey of child mental health. Journal of the American Academy of Child and Adolescent Psychiatry, 40(7), 820–827.PubMedCrossRef Fombonne, E., Simmons, H., Ford, T., Meltzer, H., & Goodman, R. (2001). Prevalence of pervasive developmental disorders in the British nationwide survey of child mental health. Journal of the American Academy of Child and Adolescent Psychiatry, 40(7), 820–827.PubMedCrossRef
go back to reference Fox, L., Vaughn, B. J., Wyatte, M. L., & Dunlap, G. (2002). ‘We can’t expect other people to understand’: Family perspectives on problem behavior. Exceptional Children, 68(4), 437–450. Fox, L., Vaughn, B. J., Wyatte, M. L., & Dunlap, G. (2002). ‘We can’t expect other people to understand’: Family perspectives on problem behavior. Exceptional Children, 68(4), 437–450.
go back to reference Griswold, D. E., Barnhill, G. P., Myles, B. S., Hagiwara, T., & Simpson, R. L. (2002). Asperger syndrome and academic achievement. Focus on Autism and Other Developmental Disabilities, 17(2), 94–102.CrossRef Griswold, D. E., Barnhill, G. P., Myles, B. S., Hagiwara, T., & Simpson, R. L. (2002). Asperger syndrome and academic achievement. Focus on Autism and Other Developmental Disabilities, 17(2), 94–102.CrossRef
go back to reference Hecimovic, A., & Gregory, S. (2005). The evolving role, impact, and needs of families. In D. Zager (Eds.), Autism spectrum disorders: Identification, education, and treatment (3rd ed., pp. 111–142). Mahwah: Lawrence Erlbaum Associates. Hecimovic, A., & Gregory, S. (2005). The evolving role, impact, and needs of families. In D. Zager (Eds.), Autism spectrum disorders: Identification, education, and treatment (3rd ed., pp. 111–142). Mahwah: Lawrence Erlbaum Associates.
go back to reference Holroyd, J., & McArthur, D. (1976). Mental retardation and stress on the parents: A contrast between Down’s syndrome and childhood autism. American Journal of Mental Deficiency, 80(4), 431–436.PubMed Holroyd, J., & McArthur, D. (1976). Mental retardation and stress on the parents: A contrast between Down’s syndrome and childhood autism. American Journal of Mental Deficiency, 80(4), 431–436.PubMed
go back to reference Howlin, P. (1988). Living with impairment: The effects on children of having an autistic sibling. Child: Care, Health and Development, 14(6), 395–408.CrossRef Howlin, P. (1988). Living with impairment: The effects on children of having an autistic sibling. Child: Care, Health and Development, 14(6), 395–408.CrossRef
go back to reference Howlin, P., Goode, S., Hutton, J., & Rutter, M. (2004). Adult outcome for children with autism. Journal of Child Psychology and Psychiatry, and Allied Disciplines, 45(2), 212–229.PubMedCrossRef Howlin, P., Goode, S., Hutton, J., & Rutter, M. (2004). Adult outcome for children with autism. Journal of Child Psychology and Psychiatry, and Allied Disciplines, 45(2), 212–229.PubMedCrossRef
go back to reference IASSID World Congress. (2004). Quality of life. Journal of Intellectual Disability Research, 48(4–5), 444–462. IASSID World Congress. (2004). Quality of life. Journal of Intellectual Disability Research, 48(4–5), 444–462.
go back to reference Kaminsky, L., & Dewey, D. (2002). Psychosocial adjustment in siblings of children with autism. Journal of Child Psychology and Psychiatry, and Allied Disciplines, 43(2), 225–232.PubMedCrossRef Kaminsky, L., & Dewey, D. (2002). Psychosocial adjustment in siblings of children with autism. Journal of Child Psychology and Psychiatry, and Allied Disciplines, 43(2), 225–232.PubMedCrossRef
go back to reference Klassen, A. F., Miller, A., & Fine, S. (2004). Health-related quality of life in children and adolescents who have a diagnosis of attention-deficit/hyperactivity disorder. Pediatrics, 114(5), e541–e547.PubMedCrossRef Klassen, A. F., Miller, A., & Fine, S. (2004). Health-related quality of life in children and adolescents who have a diagnosis of attention-deficit/hyperactivity disorder. Pediatrics, 114(5), e541–e547.PubMedCrossRef
go back to reference Liss, M., Harel, B., Fein, D., Allen, D., Dunn, M., Feinstein, C., et al. (2001). Predictors and correlates of adaptive functioning in children with developmental disorders. Journal of Autism and Developmental Disorders, 31(2), 219–230.PubMedCrossRef Liss, M., Harel, B., Fein, D., Allen, D., Dunn, M., Feinstein, C., et al. (2001). Predictors and correlates of adaptive functioning in children with developmental disorders. Journal of Autism and Developmental Disorders, 31(2), 219–230.PubMedCrossRef
go back to reference Matson, J. L. (2007). Determining treatment outcome in early intervention programs for autism spectrum disorders: A critical analysis of measurement issues in learning based interventions. Research in Developmental Disabilities, 28, 207–218.PubMedCrossRef Matson, J. L. (2007). Determining treatment outcome in early intervention programs for autism spectrum disorders: A critical analysis of measurement issues in learning based interventions. Research in Developmental Disabilities, 28, 207–218.PubMedCrossRef
go back to reference Parish, S. L., Seltzer, M. M., Greenberg, J. S., & Floyd, F. (2004). Economic implications of caregiving at midlife: Comparing parents with and without children who have developmental disabilities. Mental Retardation, 42(6), 413–426.PubMedCrossRef Parish, S. L., Seltzer, M. M., Greenberg, J. S., & Floyd, F. (2004). Economic implications of caregiving at midlife: Comparing parents with and without children who have developmental disabilities. Mental Retardation, 42(6), 413–426.PubMedCrossRef
go back to reference Piven, J., & Palmer, P. (1999). Psychiatric disorder and the broad autism phenotype: Evidence from a family study of multiple-incidence autism families. American Journal of Psychiatry, 156(4), 557–563.PubMed Piven, J., & Palmer, P. (1999). Psychiatric disorder and the broad autism phenotype: Evidence from a family study of multiple-incidence autism families. American Journal of Psychiatry, 156(4), 557–563.PubMed
go back to reference Schalock, R. L., Brown, I., Brown, R., Cummins, R. A., Felce, D., Matikka, L., et al. (2002). Conceptualization, measurement, and application of quality of life for persons with intellectual disabilities: Report of an international panel of experts. Mental Retardation, 40(6), 457–470.PubMedCrossRef Schalock, R. L., Brown, I., Brown, R., Cummins, R. A., Felce, D., Matikka, L., et al. (2002). Conceptualization, measurement, and application of quality of life for persons with intellectual disabilities: Report of an international panel of experts. Mental Retardation, 40(6), 457–470.PubMedCrossRef
go back to reference Seltzer, M. M., Shattuck, P., Abbeduto, L., & Greenberg, J. S. (2004). Trajectory of development in adolescents and adults with autism. Mental Retardation and Developmental Disabilities Research Reviews, 10(4), 234–247.PubMedCrossRef Seltzer, M. M., Shattuck, P., Abbeduto, L., & Greenberg, J. S. (2004). Trajectory of development in adolescents and adults with autism. Mental Retardation and Developmental Disabilities Research Reviews, 10(4), 234–247.PubMedCrossRef
go back to reference Spira, E. G., & Fischel, J. E. (2005). The impact of preschool inattention, hyperactivity, and impulsivity on social and academic development: A review. Journal of Child Psychology and Psychiatry, and Allied Disciplines, 46(7), 755–773.PubMedCrossRef Spira, E. G., & Fischel, J. E. (2005). The impact of preschool inattention, hyperactivity, and impulsivity on social and academic development: A review. Journal of Child Psychology and Psychiatry, and Allied Disciplines, 46(7), 755–773.PubMedCrossRef
go back to reference Strine, T. W., Lesesne, C. A., Okoro, C. A., McGuire, L. C., Chapman, D. P., Balluz, L. S., et al. (2006). Emotional and behavioral difficulties and impairments in everyday functioning among children with a history of attention-deficit/hyperactivity disorder. Preventing Chronic Disease, 3(2), A52.PubMed Strine, T. W., Lesesne, C. A., Okoro, C. A., McGuire, L. C., Chapman, D. P., Balluz, L. S., et al. (2006). Emotional and behavioral difficulties and impairments in everyday functioning among children with a history of attention-deficit/hyperactivity disorder. Preventing Chronic Disease, 3(2), A52.PubMed
go back to reference Sung, Y. J., Dawson, G., Munson, J., Estes, A., Schellenberg, G. D., & Wijsman, E. M. (2005). Genetic investigation of quantitative traits related to autism: Use of multivariate polygenic models with ascertainment adjustment. American Journal of Human Genetics, 76(1), 68–81.PubMedCrossRef Sung, Y. J., Dawson, G., Munson, J., Estes, A., Schellenberg, G. D., & Wijsman, E. M. (2005). Genetic investigation of quantitative traits related to autism: Use of multivariate polygenic models with ascertainment adjustment. American Journal of Human Genetics, 76(1), 68–81.PubMedCrossRef
go back to reference Swensen, A. R., Birnbaum, H. G., Secnik, K., Marynchenko, M., Greenberg, P., & Claxton, A. (2003). Attention-deficit/hyperactivity disorder: Increased costs for patients and their families. Journal of the American Academy of Child and Adolescent Psychiatry, 42(12), 1415–1423.PubMedCrossRef Swensen, A. R., Birnbaum, H. G., Secnik, K., Marynchenko, M., Greenberg, P., & Claxton, A. (2003). Attention-deficit/hyperactivity disorder: Increased costs for patients and their families. Journal of the American Academy of Child and Adolescent Psychiatry, 42(12), 1415–1423.PubMedCrossRef
go back to reference Verdugo, M. A., Schalock, R. L., Keith, K. D., & Stancliffe, R. J. (2005). Quality of life and its measurement: Important principles and guidelines. Journal of Intellectual Disability Research, 49(10), 707–717.PubMedCrossRef Verdugo, M. A., Schalock, R. L., Keith, K. D., & Stancliffe, R. J. (2005). Quality of life and its measurement: Important principles and guidelines. Journal of Intellectual Disability Research, 49(10), 707–717.PubMedCrossRef
go back to reference Wolery, M., & Garfinkle, A. N. (2002). Measures in intervention research with young children who have autism. Journal of Autism and Developmental Disorders, 32(5), 463–478.PubMedCrossRef Wolery, M., & Garfinkle, A. N. (2002). Measures in intervention research with young children who have autism. Journal of Autism and Developmental Disorders, 32(5), 463–478.PubMedCrossRef
go back to reference Yirmiya, N., & Shaked, M. (2005). Psychiatric disorders in parents of children with autism: A meta-analysis. Journal of Child Psychology and Psychiatry, and Allied Disciplines, 46(1), 69–83. Yirmiya, N., & Shaked, M. (2005). Psychiatric disorders in parents of children with autism: A meta-analysis. Journal of Child Psychology and Psychiatry, and Allied Disciplines, 46(1), 69–83.
Metagegevens
Titel
Children with Autism: Quality of Life and Parental Concerns
Auteurs
Li-Ching Lee
Rebecca A. Harrington
Brian B. Louie
Craig J. Newschaffer
Publicatiedatum
01-07-2008
Uitgeverij
Springer US
Gepubliceerd in
Journal of Autism and Developmental Disorders / Uitgave 6/2008
Print ISSN: 0162-3257
Elektronisch ISSN: 1573-3432
DOI
https://doi.org/10.1007/s10803-007-0491-0

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