Health-Related Quality of Life in Parents of Children with Asperger Syndrome and High-Functioning Autism

  • H. Allik
  • J.-O. Larsson
  • H. Smedje
Reference work entry


 Asperger syndrome (AS) and  high-functioning autism (HFA) are chronic neuropsychiatric disorders which start during childhood. The conditions which are associated with a pervasive impairment in social functioning impose a significant burden on the parents of affected children. The present chapter provides an overview of studies which have investigated and explored aspects of  quality of life (QOL) and  health-related quality of life (HRQL) in parents of children with AS or HFA.

Children with AS or HFA are of normal or above normal intelligence, but they have deficient ability for social interaction, rigid and stereotyped ritualistic behaviors, and, in the case of HFA, also communication deficits. Moreover, AS and HFA are often associated with co-existing psychiatric disorders and risk for peer victimization; problems which may further compromise affected individuals’ psychological functioning and well-being and increase their need for care and support. Both AS and HFA belong to the Pervasive Developmental Disorders (PDD), alternatively denominated Autism Spectrum Disorders (ASD). Recent epidemiological studies suggest that the prevalence of PDD has risen significantly over the course of the past 20–30 years. Current estimates indicate that up to 6 per 1,000 children have a PDD, and that at least half of these individuals are of normal intelligence, as in AS and HFA.

Clinical experience, increasingly supported by research data, indicates that the raising of a child with AS/HFA is frequently associated with high levels of stress and burden, and with impairments in parental HRQL. Thus, an important issue for health care systems is to take into account parents’ health and well-being in the planning of clinical services for persons with AS and HFA. The main aim of the present chapter is to provide the reader with an overview of studies which have explored aspects of QOL and HRQL in parents of children with AS or HFA.


Autism Spectrum Disorder Autism Spectrum Disorder Attention Deficit Hyperactivity Disorder Cerebral Palsy Parental Stress 
These keywords were added by machine and not by the authors. This process is experimental and the keywords may be updated as the learning algorithm improves.

List of Abbreviations:


 Attention Deficit Hyperactivity Disorder


Asperger Syndrome


Autism Spectrum Disorder


Child and Adolescent Impact Assessment


Center for Epidemiological Studies-Depression Scale


Coping Health Inventory for Parents


Coping Orientations to Problems Experienced


Cerebral Palsy


Diagnostic and Statistical Manual of Mental Disorders 4th edition


High-Functioning Autism


Health-Related Quality of Life


International Classification of Diseases 10th edition


Intelligence Quotient


Mental Retardation


 Nonverbal Learning Disability


Pervasive Developmental Disorder


Pervasive Developmental Disorder Not Otherwise Specified


Profile of Mood States


Preview-Review Family Interview


Quality of Life


The Questionnaire on Resources and Stress – Short Form


Vineland Adaptive Behavior Scales


  1. Allik H, Larsson JO, Smedje H. (2006a). Health Qual Life Outcomes. 4: 1.PubMedCrossRefGoogle Scholar
  2. Allik H, Larsson JO, Smedje H. (2006b). J Autism Dev Disord. 36: 585–595.PubMedCrossRefGoogle Scholar
  3. American Psychiatric Association. (1994). Diagnostic and Statistical Manual of Mental Disorders, 4th ed. APA, Washington, D.C.Google Scholar
  4. American Psychiatric Association. (2000). Diagnostic and Statistical Manual of Mental Disorders, 4th ed. (text revision). APA, Washington, D.C.Google Scholar
  5. Asperger H. (1991). “Autistic psychopathy” in childhood. In: Frith U (ed.) Autism and Asperger Syndrome. Cambridge University Press, New York, pp. 37–92.CrossRefGoogle Scholar
  6. Baron-Cohen S, Hammer J. (1997). J Cogn Neurosci. 9: 548–554.CrossRefGoogle Scholar
  7. Brehaut JC, Kohen DE, Raina P, Walter SD, Russell DJ, Swinton M, O’Donnell M, Rosenbaum P. (2004). Pediatrics. 114: e182–e191.PubMedCrossRefGoogle Scholar
  8. Chakrabarti S, Fombonne E. (2001). JAMA. 285: 3093–3099.PubMedCrossRefGoogle Scholar
  9. DeMyer MK, Hingtgen JN, Jackson RK. (1981). Schizophr Bull. 7: 388–451.PubMedGoogle Scholar
  10. Fisman S, Wolf L. (1991). Psychiatr Clin North Am. 14: 199–217.PubMedGoogle Scholar
  11. Fombonne E. (2003). J Autism Dev Disord. 33: 365–382.PubMedCrossRefGoogle Scholar
  12. Fombonne E. (2005). J Clin Psychiatry. 66(Suppl 10): 3–8.PubMedGoogle Scholar
  13. Fombonne E, Simmons H, Ford T, Meltzer H, Goodman R. (2001). J Am Acad Child Adolesc Psychiatry. 40: 820–827.PubMedCrossRefGoogle Scholar
  14. Fombonne E, Tidmarsh L. (2003). Child Adolesc Psychiatr Clin N Am. 12: 15–21.PubMedCrossRefGoogle Scholar
  15. Ghaziuddin M. (2005). Psychiatric Comorbidity: An Introduction. In: Ghaziuddin M (ed.) Mental Health Aspects of Autism and Asperger Syndrome. Jessica Kingsley Publishers, London and Philadelphia, pp 93–108.Google Scholar
  16. Gillberg C, Billstedt E. (2000). Acta Psychiatr Scand. 102: 321–330.PubMedCrossRefGoogle Scholar
  17. Gray DE. (1997). Soc Sci Med. 44: 1097–1106.PubMedCrossRefGoogle Scholar
  18. Gray DE. (2003). Soc Sci Med. 56: 631–642.PubMedCrossRefGoogle Scholar
  19. Gray DE. (2006). J Intellect Disabil Res. 50: 970–976.PubMedCrossRefGoogle Scholar
  20. Hastings RP. (2003). J Intellect Disabil Res. 47: 231–237.PubMedCrossRefGoogle Scholar
  21. Hastings RP, Brown T. (2002). Am J Ment Retard. 107: 222–232.PubMedCrossRefGoogle Scholar
  22. Hastings RP, Kovshoff H, Brown T, Ward NJ, Espinosa FD, Remington B. (2005a). Autism. 9: 377–391.PubMedCrossRefGoogle Scholar
  23. Hastings RP, Kovshoff H, Ward NJ, degli Espinosa F, Brown T, Remington B. (2005b). J Autism Dev Disord. 35: 635–644.PubMedCrossRefGoogle Scholar
  24. Holroyd J, McArthur D. (1976). Am J Ment Defic. 80: 431–436.PubMedGoogle Scholar
  25. Kanner L. (1943). Nerv Child. 2: 217–250.Google Scholar
  26. Little L. (2002a). Pediatr Nurs. 28: 565–570.PubMedGoogle Scholar
  27. Little L. (2002b). Issues Compr Pediatr Nurs. 25: 43–57.PubMedCrossRefGoogle Scholar
  28. Little L, Clark RR. (2006). MCN Am J Matern Child Nurs. 31: 39–44.PubMedCrossRefGoogle Scholar
  29. Lounds J, Seltzer MM, Greenberg JS, Shattuck PT. (2007). Am J Ment Retard. 112: 401–417.PubMedCrossRefGoogle Scholar
  30. Mugno D, Ruta L, D’Arrigo VG, Mazzone L. (2007). Health Qual Life Outcomes. 5: 22.PubMedCrossRefGoogle Scholar
  31. Murphy M, Bolton PF, Pickles A, Fombonne E, Piven J, Rutter M. (2000). Psychol Med. 30: 1411–1424.PubMedCrossRefGoogle Scholar
  32. Pakenham KI, Samios C, Sofronoff K. (2005). Autism. 9: 191–212.PubMedCrossRefGoogle Scholar
  33. Pakenham KI, Sofronoff K, Samios C. (2004). Res Dev Disabil. 25: 245–264.PubMedCrossRefGoogle Scholar
  34. Patzold LM, Richdale AL, Tonge BJ. (1998). J Paediatr Child Health. 34: 528–533.PubMedCrossRefGoogle Scholar
  35. Piven J, Wzorek M, Landa R, Lainhart J, Bolton P, Chase GA, Folstein S. (1994). Psychol Med. 24: 783–795.PubMedCrossRefGoogle Scholar
  36. Raina P, O’Donnell M, Schwellnus H, Rosenbaum P, King G, Brehaut J, Russell D, Swinton M, King S, Wong M, Walter SD, Wood E. (2004). BMC Pediatr. 4: 1.PubMedCrossRefGoogle Scholar
  37. Rutter M. (2005). Acta Paediatr. 94: 2–15.PubMedCrossRefGoogle Scholar
  38. Schuntermann P. (2002). Harv Rev Psychiatry. 10: 16–27.PubMedCrossRefGoogle Scholar
  39. Scott JF, Baron-Cohen S, Bolton P, Brayne C. (2002). Autism. 6: 231–237.PubMedCrossRefGoogle Scholar
  40. Smith LE, Seltzer MM, Tager-Flusberg H, Greenberg JS, Carter AS. (2008). J Autism Dev Disord. 38: 876–889.PubMedCrossRefGoogle Scholar
  41. Stewart ME, Barnard L, Pearson J, Hasan R, O’Brien G. (2006). Autism. 10: 103–116.PubMedCrossRefGoogle Scholar
  42. Walker DR, Thompson A, Zwaigenbaum L, Goldberg J, Bryson SE, Mahoney WJ, Strawbridge CP, Szatmari P. (2004). J Am Acad Child Adolesc Psychiatry. 43: 172–180.PubMedCrossRefGoogle Scholar
  43. Webb E, Morey J, Thompsen W, Butler C, Barber M, Fraser WI. (2003). Dev Med Child Neurol. 45: 377–384.PubMedCrossRefGoogle Scholar
  44. Willemsen-Swinkels SH, Buitelaar JK. (2002). Psychiatr Clin North Am. 25: 811–836.PubMedCrossRefGoogle Scholar
  45. Wolf LC, Noh S, Fisman SN, Speechley M. (1989). J Autism Dev Disord. 19: 157–166.PubMedCrossRefGoogle Scholar
  46. Wolff S, Narayan S, Moyes B. (1988). J Child Psychol Psychiatry. 29: 143–153.PubMedCrossRefGoogle Scholar
  47. Volkmar FR, Klin A. (2000). Diagnostic issues in Asperger syndrome. In: Klin A, Volkmar FR, Sparrow SS (eds.) Asperger Syndrome. The Guilford Press, New York, London, pp 25–72.Google Scholar
  48. World Health Organization. (1992). The ICD-10 Classification of Mental and Behavioural Disorders. WHO, Geneva.Google Scholar
  49. World Health Organization. (1993). The ICD-10 Classification of Mental and Behavioural Disorders: Diagnostic Criteria for Research. WHO, Geneva.Google Scholar
  50. Yirmiya N, Shaked M. (2005). J Child Psychol Psychiatry. 46: 69–83.PubMedCrossRefGoogle Scholar

Copyright information

© Springer Science+Business Media LLC 2010

Authors and Affiliations

  • H. Allik
  • J.-O. Larsson
  • H. Smedje

There are no affiliations available

Personalised recommendations