Skip to main content

Advertisement

Log in

Children with Autism: Quality of Life and Parental Concerns

  • Original Paper
  • Published:
Journal of Autism and Developmental Disorders Aims and scope Submit manuscript

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.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Institutional subscriptions

Similar content being viewed by others

References

  • 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.

    Article  PubMed  Google Scholar 

  • 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.

    Article  PubMed  Google Scholar 

  • 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.

    Article  PubMed  Google Scholar 

  • 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.

    Article  PubMed  Google Scholar 

  • Bertelli, M., & Brown, I. (2006). Quality of life for people with intellectual disabilities. Current Opinion in Psychiatry, 19(5), 508–513.

    Article  PubMed  Google Scholar 

  • 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.

  • 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.

    Article  PubMed  Google Scholar 

  • 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.

    Article  PubMed  Google Scholar 

  • 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.

    Article  PubMed  Google Scholar 

  • Cummins, R. A. (2005). Moving from the quality of life concept to a theory. Journal of Intellectual Disability Research, 49(10), 699–706.

    Article  PubMed  Google Scholar 

  • 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.

    Article  PubMed  Google Scholar 

  • 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.

    Article  PubMed  Google Scholar 

  • 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.

    Article  PubMed  Google Scholar 

  • 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.

    Article  PubMed  Google Scholar 

  • 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  Google Scholar 

  • 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.

    Article  PubMed  Google Scholar 

  • 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.

    Article  Google Scholar 

  • 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.

    Article  PubMed  Google Scholar 

  • Fombonne, E. (2005). Epidemiology of autistic disorder and other pervasive developmental disorders. Journal of Clinical Psychiatry, 66(Suppl. 10), 3–8.

    PubMed  Google Scholar 

  • 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.

    Article  PubMed  Google Scholar 

  • 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.

    Google Scholar 

  • 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.

    Article  Google Scholar 

  • 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.

    Google Scholar 

  • 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  Google Scholar 

  • Howlin, P. (1988). Living with impairment: The effects on children of having an autistic sibling. Child: Care, Health and Development, 14(6), 395–408.

    Article  Google Scholar 

  • 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.

    Article  PubMed  Google Scholar 

  • IASSID World Congress. (2004). Quality of life. Journal of Intellectual Disability Research, 48(4–5), 444–462.

    Google Scholar 

  • 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.

    Article  PubMed  Google Scholar 

  • 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.

    Article  PubMed  Google Scholar 

  • 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.

    Article  PubMed  Google Scholar 

  • 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.

    Article  PubMed  Google Scholar 

  • 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.

    Article  PubMed  Google Scholar 

  • 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  Google Scholar 

  • 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.

    Article  PubMed  Google Scholar 

  • 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.

    Article  PubMed  Google Scholar 

  • 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.

    Article  PubMed  Google Scholar 

  • 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  Google Scholar 

  • 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.

    Article  PubMed  Google Scholar 

  • 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.

    Article  PubMed  Google Scholar 

  • 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.

    Article  PubMed  Google Scholar 

  • 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.

    Article  PubMed  Google Scholar 

  • 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.

    Google Scholar 

Download references

Acknowledgments

The authors were supported by CDC cooperative agreement U10/CCU320408-05. We thank Andrew W. Zimmerman, MD, for his review of the manuscript and helpful comments. The analyses, interpretations, and conclusions addressed in this publication are the authors’ responsibility and do not represent the opinions of the National Center for Health Statistics. A preliminary version of this report was presented at the International Meeting for Autism Research, Montreal, Canada, June 2006.

Author information

Authors and Affiliations

Authors

Corresponding author

Correspondence to Li-Ching Lee.

Rights and permissions

Reprints and permissions

About this article

Cite this article

Lee, LC., Harrington, R.A., Louie, B.B. et al. Children with Autism: Quality of Life and Parental Concerns. J Autism Dev Disord 38, 1147–1160 (2008). https://doi.org/10.1007/s10803-007-0491-0

Download citation

  • Received:

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s10803-007-0491-0

Keywords

Navigation