Skip to main content
SpringerLink
Log in

Impact of autism in adolescents on parental quality of life

  • Published:
Quality of Life Research Aims and scope Submit manuscript

Abstract

Purpose

To study the impact of autism spectrum disorders (ASDs) on parental quality of life (QoL) at adolescence using the parental–developmental disorders-quality of life scale (Par–DD-QoL).

Methods

One hundred and fifty-two mothers of adolescents with ASD completed Par–DD-QoL. This scale assesses the following dimensions: emotional, daily disturbance and global QoL. This cross-sectional study uses a subset of data collected at the final time of a follow-up study (EpiTED cohort).

Results

A polytomic regression identified an increase in aberrant behavior scores as the major independent risk factor for parental QoL. The identified protective factors were the increase in daily living, communication and object cognition scores and a higher number of siblings.

Conclusions

Those results suggest that there is a negative effect of externalizing behaviors and a protective effect of adaptive skills, communication and object cognition on parental QoL. Study limitations and implications are discussed.

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

Access this article

Log in via an institution

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

Abbreviations

QoL:

Quality of life

ASD:

Autism spectrum disorders

Par–DD-QoL:

Parental–developmental disorders-quality of life

References

  1. APA (2000). Diagnostic and statistical manual of mental disorders (Text revision). Washington, DC: American Psychiatric Association.

  2. WHO. (1993). (WHO) ICD-10 classification of mental and behavioral disorders diagnostic criteria for research. Geneva: World Health Organization.

    Google Scholar 

  3. Howlin, P., Goode, S., Hutton, J., & Rutter, M. (2004). Adult outcome for children with autism. Journal of Child Psychology and Psychiatry, 45(2), 212–229.

    Article  PubMed  Google Scholar 

  4. Farnik, M., Brozek, G., Pierzchała, W., Zejda, J. E., Skrzypek, M., & Walczak, Ł. (2010). Development, evaluation and validation of a new instrument for measurement quality of life in the parents of children with chronic disease. Health and Quality of Life Outcomes, 8, 151.

    Google Scholar 

  5. Greenley, R. N., & Cunningham, C. (2009). Parent quality of life in the context of pediatric inflammatory bowel disease. Journal of Pediatric Psychology, 34(2), 129–136.

    Article  PubMed  Google Scholar 

  6. Meltzer, E. O. (2001). Quality of life in adults and children with allergic rhinitis. Journal of Allergy and Clinical Immunology, 108(1, Supplement), S45–S53. doi:10.1067/mai.2001.115566.

    Article  CAS  PubMed  Google Scholar 

  7. Lee, G. K., Lopata, C., Volker, M. A., Thomeer, M. L., Nida, R. E., Toomey, J. A., et al. (2009). Health-related quality of life of parents of children with high-functioning autism spectrum disorders. Focus on Autism and Other Developmental Disabilities, 24(4), 227–239.

    Article  Google Scholar 

  8. Yirmiya, N., & Shaked, M. (2005). Psychiatric disorders in parents of children with autism: A meta-analysis. Journal of Child Psychology and Psychiatry, 46(1), 69–83. doi:10.1111/j.1469-7610.2004.00334.x.

    Article  PubMed  Google Scholar 

  9. Ingersoll, B., & Hambrick, D. Z. (2011). The relationship between the broader autism phenotype, child severity, and stress and depression in parents of children with autism spectrum disorders. Research in Autism Spectrum Disorders, 5(1), 337.

    Article  Google Scholar 

  10. Schieve, L. A., Blumberg, S. J., Rice, C., Visser, S. N., & Boyle, C. (2007). The relationship between autism and parenting stress. Pediatrics, 119(Suppl 1), S114–S121. doi:10.1542/peds.2006-2089Q.

    Article  PubMed  Google Scholar 

  11. Mugno, D., Ruta, L., D’Arrigo, V. G., & Mazzone, L. (2007). Impairment of quality of life in parents of children and adolescents with pervasive developmental disorder. Health and Quality of Life Outcomes, 5, 22.

    Article  PubMed Central  PubMed  Google Scholar 

  12. Kheir, N., Ghoneim, O., Sandridge, A. L., Al-Ismail, M., Hayder, S., & Al-Rawi, F. (2012). Quality of life of caregivers of children with autism in Qatar. Autism, 16(3), 293–298.

    Google Scholar 

  13. 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.

    Google Scholar 

  14. Bruchon-Schweitzer, M. (2002). Psychologie de la santé: modèles, concepts et méthodes (Vol. 456). Paris: Dunod.

    Google Scholar 

  15. Lazarus, R. S., & Folkman, S. (1984). Stress appraisal, and coping. Berlin: Springer.

    Google Scholar 

  16. Bristol, M. M. (1984). Family resources and successful adaptation to autistic children. In E. Schopler & G. B. Mesibov (Eds.), The effects of autism on the family (pp. 289–310). New York: Plenum.

    Chapter  Google Scholar 

  17. Cappe, E., Wolff, M., Bobet, R., & Adrien, J.-L. (2011). Quality of life: A key variable to consider in the evaluation of adjustment in parents of children with autism spectrum disorders and in the development of relevant support and assistance programmes. Quality of Life Research, 20(8), 1279–1294.

    Article  PubMed  Google Scholar 

  18. Hutton, A. M., & Caron, S. L. (2005). Experiences of families with children with autism in rural New England. Focus on Autism and Other Developmental Disabilities, 20(3), 180–189.

    Article  Google Scholar 

  19. Koegel, R. L., Bimbela, A., & Schreibman, L. (1996). Collateral effects of parent training on family interactions. Journal of Autism and Developmental Disorders, 26(3), 347.

    Article  CAS  PubMed  Google Scholar 

  20. Ozonoff, S., & Cathcart, K. (1998). Effectiveness of a home program intervention for young children with autism. Journal of Autism and Developmental Disorders, 28(1), 25–32.

    Article  CAS  PubMed  Google Scholar 

  21. Hastings, R. P., & Beck, A. (2004). Practitioner review: Stress intervention for parents of children with intellectual disabilities. Journal of Child Psychology and Psychiatry, 45(8), 1338.

    Article  PubMed  Google Scholar 

  22. Preece, D., & Jordan, R. (2007). Short breaks services for children with autistic spectrum disorders: Factors associated with service use and non-use. Journal of Autism and Developmental Disorders, 37(2), 374–385.

    Article  PubMed  Google Scholar 

  23. Whittingham, K., Sofronoff, K., & Sheffield, J. K. (2006). Stepping Stones Triple P: A pilot study to evaluate acceptability of the program by parents of a child diagnosed with an autism spectrum disorder. Research in Developmental Disabilities, 27(4), 364.

    Article  CAS  PubMed  Google Scholar 

  24. Baghdadli, A., Darrou, C., Coudurier, C., Michelon, C., Raysse, P., Ledesert, B., et al. (2008). Durée des prises en charge d’enfants autistes et qualité de vie de leurs parents = Treatment durations of autistic children and their parents’ quality of life. Pratiques et organisation des soins, 39(1), 53–60.

    Google Scholar 

  25. 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.

    CAS  PubMed  Google Scholar 

  26. Olsson, M. B., & Hwang, C. P. (2008). Socioeconomic and psychological variables as risk and protective factors for parental well-being in families of children with intellectual disabilities. Journal of Intellectual Disability Research, 52(12), 1102–1113.

    Article  CAS  PubMed  Google Scholar 

  27. Montes, G., Halterman, J. S., & Magyar, C. I. (2009). Access to and satisfaction with school and community health services for US children with ASD. Pediatrics, 124(Supplement 4), S407–S413.

    Article  PubMed  Google Scholar 

  28. Rattaz, C., Ledesert, B., Masson, O., Ouss, L., Ropers, G., & Baghdadli, A. (2012). Special education and care services for children, adolescents, and adults with autism spectrum disorders in France: Families’ opinion and satisfaction. Autism,. doi:10.1177/1362361312460952.

    PubMed  Google Scholar 

  29. Spann, S. J., Kohler, F. W., & Soenksen, D. (2003). Examining parents’ involvement in and perceptions of special education services an interview with families in a parent support group. Focus on Autism and Other Developmental Disabilities, 18(4), 228–237.

    Article  Google Scholar 

  30. Baghdadli, A., Assouline, B., Sonie, S., Pernon, E., Darrou, C., Michelon, C., et al. (2012). Developmental trajectories of adaptive behaviors from early childhood to adolescence in a cohort of 152 children with autism spectrum disorders. Journal of Autism and Developmental Disorders, 42, 1314–1325. doi:10.1007/s10803-011-1357-z.

    Article  PubMed  Google Scholar 

  31. Lord, C., Rutter, M., & Couteur, A. (1994). Autism diagnostic interview-revised: A revised version of a diagnostic interview for caregivers of individuals with possible pervasive developmental disorders. Journal of Autism and Developmental Disorders, 24(5), 659–685.

    Article  CAS  PubMed  Google Scholar 

  32. Berdeaux, G., Hervie, C., Smajda, C., & Marquis, P. (1998). Parental quality of life and recurrent ENT infections in their children: Development of a questionnaire. Quality of Life Research, 7(6), 501–512.

    Article  CAS  PubMed  Google Scholar 

  33. Raysse, P. (2011). Troubles du développement de l’enfant et qualité de vie familiale. thèse de doctorat, Psychologie du développement, University Montpellier 3, Montpellier (France).

  34. Schopler, E., Reichler, R., & Renner, B. (1988). The childhood autism rating scale (C.A.R.S). Los Angeles, CA: Western Psychological Services.

    Google Scholar 

  35. Sparrow, S. S., Balla, D. A., & Cicchetti, D. V. (1984). The Vineland adaptive behavior scales. Circle Pines, MN: America Guidance Service.

    Google Scholar 

  36. Aman, M. G., Singh, N. N., Stewart, A. W., & Field, C. J. (1985). The aberrant behavior checklist: A behavior rating scale for the assessment of treatment effects. American Journal of Mental Deficiency, 89(5), 485–491.

    CAS  PubMed  Google Scholar 

  37. Baghdadli, A., Picot, M. C., Michelon, C., Bodet, J., Pernon, E., Burstezjn, C., et al. (2007). What happens to children with PDD when they grow up? Prospective follow-up of 219 children from preschool age to mid-childhood. Acta Psychiatrica Scandinavica, 115(5), 403–412.

    Article  CAS  PubMed  Google Scholar 

  38. Seibert, J. M., & Hogan, A. E., & Mundy, P. C. (1982). Assessing interactional competencies: The early social-communication scales.Infant Mental Health Journal, 3, 244–245.

    Google Scholar 

  39. Shulman, B. B. (1985). Test of pragmatic skills. Tuscon, AZ: Communication Skill Builders.

    Google Scholar 

  40. Orsmond, G. I., Seltzer, M. M., Greenberg, J. S., & Krauss, M. W. (2006). Mother–child relationship quality among adolescents and adults with autism. American Journal on Mental Retardation, 111(2), 121.

    Article  PubMed  Google Scholar 

  41. 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 and Quality of Life Outcomes, 4(1), 1–8.

    Article  PubMed Central  PubMed  Google Scholar 

  42. Beadle-Brown, J., Murphy, G., & DiTerlizzi, M. (2009). Quality of life for the Camberwell cohort. Journal of Applied Research in Intellectual Disabilities, 22(4), 380.

    Article  Google Scholar 

  43. Kamp-Becker, I., Schroder, J., Remschmidt, H., & Bachmann, C. J. (2010). Health-related quality of life in adolescents and young adults with high functioning autism-spectrum disorder. Psycho-social Medicine, 7, 1–10.

    Google Scholar 

  44. Klassen, A., 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, 541–547.

    Google Scholar 

  45. Altiere, M. J., & von Kluge, S. (2009). Searching for acceptance: Challenges encountered while raising a child with autism. Journal of Intellectual Developmental Disability, 34(2), 142–152.

    Article  PubMed  Google Scholar 

  46. Lecavalier, L., Leone, S., & Wiltz, J. (2006). The impact of behaviour problems on caregiver stress in young people with autism spectrum disorders. Journal of Intellectual Disability Research, 50(3), 172.

    Article  CAS  PubMed  Google Scholar 

  47. Tunali, B., & Power, T. G. (2002). Coping by redefinition: Cognitive appraisals in mothers of children with autism and children without autism. Journal of Autism and Developmental Disorders, 32(1), 25–34.

    Article  PubMed  Google Scholar 

Download references

Acknowledgments

This study was supported by a grant from the Orange Foundation and the PHRC 1997 and 2007. We are extremely grateful to all the teenagers and their families who took part in this study, and the whole EpiTED Team.

Conflict of interest

The authors have no conflict of interest to report.

Author information

Authors and Affiliations

  1. Centre Ressources Autisme, CHRU Montpellier, 39 Avenue Charles Flahaut, 34295, Montpellier Cedex 05, France

    Amaria Baghdadli, René Pry, Cécile Michelon & Cécile Rattaz

  2. Laboratoire Epsylon, University of Montpellier, EA 4556, 34000, Montpellier, France

    Amaria Baghdadli, René Pry, Cécile Michelon & Cécile Rattaz

Authors
  1. Amaria Baghdadli
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. René Pry
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Cécile Michelon
    View author publications

    You can also search for this author in PubMed Google Scholar

  4. Cécile Rattaz
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to Amaria Baghdadli.

Additional information

Copyright Par–DD-QoL scale is adapted from Par–ENT-Qol, exclusive property of Pierre Fabre SA. The adaptation has been the subject of an agreement between Pierre Fabre Laboratories and the University Hospital of Montpellier who owns this form. The use of this adaptation must imperatively mention «Adapted from the questionnaire Par–ENT-QoL Exclusive property of PIERRE FABRE».

Rights and permissions

Reprints and permissions

About this article

Cite this article

Baghdadli, A., Pry, R., Michelon, C. et al. Impact of autism in adolescents on parental quality of life. Qual Life Res 23, 1859–1868 (2014). https://doi.org/10.1007/s11136-014-0635-6

Download citation

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s11136-014-0635-6

Keywords

Search

Navigation