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).
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).
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.
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.
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Quality of life
Autism spectrum disorders
Parental–developmental disorders-quality of life
APA (2000). Diagnostic and statistical manual of mental disorders (Text revision). Washington, DC: American Psychiatric Association.
WHO. (1993). (WHO) ICD-10 classification of mental and behavioral disorders diagnostic criteria for research. Geneva: World Health Organization.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
Bruchon-Schweitzer, M. (2002). Psychologie de la santé: modèles, concepts et méthodes (Vol. 456). Paris: Dunod.
Lazarus, R. S., & Folkman, S. (1984). Stress appraisal, and coping. Berlin: Springer.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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).
Schopler, E., Reichler, R., & Renner, B. (1988). The childhood autism rating scale (C.A.R.S). Los Angeles, CA: Western Psychological Services.
Sparrow, S. S., Balla, D. A., & Cicchetti, D. V. (1984). The Vineland adaptive behavior scales. Circle Pines, MN: America Guidance Service.
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.
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.
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.
Shulman, B. B. (1985). Test of pragmatic skills. Tuscon, AZ: Communication Skill Builders.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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».
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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
- Parental quality of life
- Autism spectrum disorders
- Risk factors