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Psychological Adjustment in Families Affected by Autism Spectrum Disorder

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An Erratum to this article was published on 28 September 2015

Abstract

There is extensive evidence that parents and carers of children diagnosed with Autism Spectrum Disorder (ASD) are vulnerable to experiencing mental health issues including having high risk of depression, anxiety and familial stress. Research also suggests that this stress can coexist with positive experiences of caregiving. However, the capacity to remain resilient, or thrive during difficult emotional experiences, is a relatively new concept in the ASD literature. The present study adds to current understanding of the mental health needs of female caregivers by evaluating data from a nationwide survey (N = 438). The findings suggest that psychological outcome is primarily determined by individual coping responses, with avoidant strategies (disengagement, self-blame, denial, emotional venting) contributing to depressed mood in addition to anxiety and stress symptomatology. In comparison, action-oriented strategies (planning, acceptance, positive reframing) characterised resilience. Perceived support needs and, to a lesser extent, child behaviour, also had important contextual influences. Future longitudinal research will help to refine the variables implicated in the adjustment process, including changes in caregivers’ repertoire of cognitive and behavioural coping responses over time.

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References

  • Andrews, D., Nonnecke, B., & Preece, J. (2003). Electronic survey methodology: a case study in reaching hard to involve internet users. International Journal of Human Computer Interaction, 16(2), 185–210.

    Article  Google Scholar 

  • Barker, E. T., Hartley, S. L., Seltzer, M. M., Floyd, F. J., Greenberg, J. S., & Orsmond, G. I. (2011). Trajectories of emotional wellbeing in mothers of adolescents and adults with autism. Developmental Psychology, 47(2), 551–561.

    Article  PubMed Central  PubMed  Google Scholar 

  • Bauman, M. L. (2010). Medical comorbidities in autism: challenges to diagnosis and treatment. Neurotherapeutics, 7(3), 320–327.

    Article  PubMed  Google Scholar 

  • Beer, M., Ward, L., & Moar, K. (2013). The relationship between mindful parenting and distress in parents of children with an Autism Spectrum Disorder. Mindfulness, 4(2), 102–112.

    Article  Google Scholar 

  • Bekhet, A. K., Johnson, N. L., & Zauszniewski, J. A. (2012a). Resilience in family members of person with Autism Spectrum Disorder: a review of the literature. Issues in Mental Health Nursing, 33(10), 650–656.

    Article  PubMed  Google Scholar 

  • Bekhet, A. K., Johnson, N. L., & Zauszniewski, J. A. (2012b). Effects of resilience on caregivers of persons with Autism Spectrum Disorder: the role of positive cognitions. Journal of the American Psychiatric Nurses Association, 18(6), 327–344.

    Article  Google Scholar 

  • Benson, P. R., & Karlof, K. L. (2009). Anger, stress proliferation, and depressed mood among parents of children with ASD: a longitudinal replication. Journal of Autism and Developmental Disorders, 39(2), 350–362.

    Article  PubMed  Google Scholar 

  • Benzies, K., & Mychasiuk, M. (2009). Fostering family resiliency: a review of the key protective factors. Child & Family Social Work, 14(1), 103–114.

    Article  Google Scholar 

  • Bitsika, V., Sharpley, C. F., & Bell, R. (2013). The buffering effect of resilience upon stress, anxiety and depression in parents of a child with an Autism Spectrum Disorder. Journal of Developmental and Physical Disabilities, 25(5), 533–543.

    Article  Google Scholar 

  • Blackledge, J. T., & Hayes, S. (2006). Using acceptance and commitment training in the support of parents of children diagnosed with autism. Child and Family Behavior Therapy, 28(1), 1–18.

    Article  Google Scholar 

  • Bruvik, F. K., Ulstein, I. D., Ranhoff, A. H., & Engedal, K. (2013). The effect of coping on the burden in family carers of persons with dementia. Ageing & Mental Health, 17(8), 973–978.

    Article  Google Scholar 

  • Campbell-Sills, L., & Stein, M. B. (2007). Psychometric analysis and refinement of the Connor-Davidson Resilience Scale (CD-RISC): validation of a 10-item measure of resilience. Journal of Traumatic Stress, 20(6), 1019–1028.

    Article  PubMed  Google Scholar 

  • Carver, C. S. (1997). You want to measure coping but your protocol’s too long: consider the Brief COPE. International Journal of Behavioral Medicine, 4(1), 92–100.

    Article  PubMed  Google Scholar 

  • Carver, C. S., Scheier, M. F., & Weintraub, J. K. (1989). Assessing coping strategies: a theoretically based approach. Journal of Personality and Social Psychology, 56(2), 267–283.

    Article  PubMed  Google Scholar 

  • Cohen, L., Ferguson Harms, C., Pooley, J. A., & Tomlinson, S. (2011). Family systems and mental health issues: a resilience approach. Journal of Social Work Practice: Psychotherapeutic Approaches in Health, Welfare and the Community, 25(1), 109–125.

    Article  Google Scholar 

  • Connor, K. M., & Davidson, J. R. T. (2003). Development of a new resilience scale: Connor-Davidson Resilience Scale (CD-RISC). Depression and Anxiety, 18(2), 76–82.

    Article  PubMed  Google Scholar 

  • Craig, A. R. (2012). Resilience in people with physical disabilities. In P. Kennedy (Ed.), Oxford handbook of rehabilitation psychology (pp. 474–491). London: Oxford University Press.

    Google Scholar 

  • Craig, A. R., Franklin, J. A., & Andrews, G. (1984). A scale to measure locus of control of behaviour. British Journal of Medical Psychology, 57(Pt 2), 173–180.

    Article  PubMed  Google Scholar 

  • Dekker, M. C., Nunn, R., & Koot, H. M. (2002). Psychometric properties of the revised Developmental Behaviour Checklist scales in Dutch children with intellectual disability. Journal of Intellectual Disability Research, 46(Pt 1), 61–77.

    Article  PubMed  Google Scholar 

  • Fenner, Y., Garland, S. M., Moore, E. E., et al. (2012). Web-based recruiting for health research using a social networking site: an exploratory study. Journal of Medical Internet Research, 14(1), e20.

    Article  PubMed Central  PubMed  Google Scholar 

  • Field, A. (2009). Discovering statistics using SPSS. London: SAGE Publications Ltd.

    Google Scholar 

  • Fu, C., Leoutsakos, J. M., & Underwood, C. (2014). An examination of resilience cross-culturally in child and adolescent survivors of the 2008 China earthquake using the Connor–Davidson Resilience Scale (CD-RISC). Journal of Affective Disorders, 155, 149–153.

    Article  PubMed  Google Scholar 

  • Galea, S., & Tracy, M. (2007). Participation rates in epidemiologic studies. Annals of Epidemiology, 17(9), 643–653.

    Article  PubMed  Google Scholar 

  • Greeff, A. P., Vansteenwegen, A., & Ide, M. (2006). Resilience in families with a member with a psychological disorder. American Journal of Family Therapy, 34(4), 285–300.

    Article  Google Scholar 

  • Grindle, C. F., Kovshoff, H., Hastings, R. P., & Remington, B. (2009). Parents’ experiences of home-based applied behavior analysis programs for young children with autism. Journal of Autism and Developmental Disorders, 39(1), 42–56.

    Article  PubMed  Google Scholar 

  • Hall, H. R., & Graff, J. C. (2011). The relationships among adaptive behaviors of children with autism, family support, parenting stress, and coping. Issues in Comprehensive Pediatric Nursing, 34(1), 4–25.

    Article  PubMed  Google Scholar 

  • Hastings, R. P. (2003). Child behaviour problems and partner mental health as correlates of stress in mothers and fathers of children with autism. Journal of Intellectual Disability Research, 47(Pt 4–5), 231–237.

    Article  PubMed  Google Scholar 

  • Herrman, H., Stewart, D. E., Diaz-Granados, N., Berger, E. L., Jackson, B., & Yuen, T. (2011). What is resilience? Canadian Journal of Psychiatry, 56(5), 258–265.

    Google Scholar 

  • Hsieh, Y., & Lo, J. (2013). Occupational experiences and subjective wellbeing of mothers of children with ASD in Taiwan. Occupational Therapy Interventions, 20(1), 45–53.

    Article  Google Scholar 

  • Huerta, M., & Lord, C. (2012). Diagnostic evaluation of autism spectrum disorders. Pediatric Clinics of North America, 59(1), 103–111.

    Article  PubMed Central  PubMed  Google Scholar 

  • Infante-Rivard, C., & Jacques, L. (2013). Empirical study of parental recall bias. American Journal of Epidemiology, 152(5), 480–486.

    Article  Google Scholar 

  • Ingersoll, B., & Hambrick, D. Z. (2011). The relationship between the broader autism phenotype, childhood severity, and stress and depression in parents of children with autism spectrum disorders. Research in Autism Spectrum Disorders, 5(1), 337–344.

    Article  Google Scholar 

  • Karst, J. S., & Vaughan Van Hecke, A. (2012). Parent and family impact of Autism Spectrum Disorders: a review and proposed model for intervention evaluation. Clinical Child and Family Psychology Review, 15(3), 247–277.

    Article  PubMed  Google Scholar 

  • Kimemia, M., Asner-Self, K. K., & Daire, A. P. (2011). An exploratory factor analysis of the brief COPE with a sample of Kenyan caregivers. International Journal for the Advancement of Counselling, 33, 149–160.

    Article  Google Scholar 

  • Kreutzer, J. (2000). The Service Obstacles Scale. The Center for Outcome Measurement in Brain Injury. Available at: http://www.tbims.org/combi/sos. Accessed 3rd July 2015.

  • Kumpfer, K. L. (1999). Factors and processes contributing to resilience – the resilience framework. In M. D. Glantz & J. L. Johnson (Eds.), Resilience and development: Positive life adaptations (pp. 179–224). New York: Springer.

    Google Scholar 

  • Lovibond, S. H., & Lovibond, P. F. (2005). Manual for the depression, anxiety and stress scales (2nd ed.). Sydney: Psychology Foundations.

    Google Scholar 

  • Luthar, S. S., Cicchetti, D., & Becker, B. (2000). The construct of resilience: a critical evaluation and guidelines for future work. Child Development, 71, 543–562.

    Article  PubMed Central  PubMed  Google Scholar 

  • Mak, W. S., & Kwok, Y. T. Y. (2010). Internalization of stigma for parents of children with autism spectrum disorder in Hong Kong. Social Science and Medicine, 70(12), 2045–2051.

    Article  PubMed  Google Scholar 

  • Mao, A. R. (2012). Factors that contribute to caregiver burden for parents of children with Autism Spectrum Disorder or Attention-Deficit/Hyperactivity Disorder. Journal of the American Academy of Child and Adolescent Psychiatry, 51(9), 864–866.

    Article  PubMed  Google Scholar 

  • McCubbin, H. I., Patterson, J., & Glynn, T. (1982). Social Support Index (SSI). In H. I. McCubbin, A. I. Thompson, & M. A. McCubbin (Eds.), Family assessment: Resiliency, coping and adaptation-inventories for research and practice (pp. 357–389). Madison: University of Wisconsin System.

    Google Scholar 

  • Meadan, H., Halle, J. W., & Ebata, A. T. (2010). Families with children who have Autism Spectrum Disorders: stress and support. Council for Exceptional Children, 77(1), 7–36.

    Google Scholar 

  • Nabors, L., Kichler, J. C., Brassel, A., Thakkar, S., Bartz, J., Pangallo, J., Van Wassenhove, B., & Lundy, H. (2013). Factors related to caregiver state anxiety and coping with a child’s chronic illness. Families, Systems & Health, 31(2), 171–180.

    Article  Google Scholar 

  • Osman, A., Wong, J. L., Bagge, C. L., Freedenthal, S., Gutierrez, P. M., & Lozano, G. (2012). The depression anxiety stress scales – 21 (DASS-21): further examination of dimensions, scale reliability, and correlates. Journal of Clinical Psychology, 68(12), 1322–1338.

    Article  PubMed  Google Scholar 

  • Pistello, J. P. (2013). Posttraumatic growth and religious coping in parents of autistic children. Doctorate of Psychology, Regent University, US.

  • Plumb, J. C. (2011). The impact of social support and family resilience on parental stress in families with a child diagnosed with an Autism Spectrum Disorder. Doctorate of Social Work, University of Pennsylvania, US.

  • Resch, J. A., Benz, M. R., & Elliott, T. R. (2012). Evaluating a dynamic process model of wellbeing for parents of children with disabilities: a multi-method analysis. Rehabilitation Psychology, 57(1), 61–72.

    Article  PubMed  Google Scholar 

  • Ruiz-Robledillo, N., & Moya-Albiol, L. (2013). Self-reported health and cortisol awakening response in parents of people with Asperger syndrome: the role of trait anger and anxiety, coping and burden. Psychology and Health, 28(11), 1246–1264.

    Article  PubMed  Google Scholar 

  • Ruiz-Robledillo, N., Andres-Gracia, S. D., Perez-Blasco, J., Gonzalez-Bono, E., & Moya-Albiol, L. (2014a). Highly resilient coping entails better perceived health, high social support and low morning cortisol levels in parents of children with Autism Spectrum Disorder. Research in Developmental Disabilities, 35(3), 686–695.

    Article  PubMed  Google Scholar 

  • Ruiz-Robledillo, N., Gonzalez-Bono, E., & Moya-Albiol, L. (2014b). Lack of institutional support entails disruption in cortisol awakening response in caregivers of people with high-functioning autism. Journal of Health Psychology, 19(12), 1586–1596.

    Article  PubMed  Google Scholar 

  • Ruiz-Robledillo, Sariñana-García, Pérez-Blasco, González-Bono, & Moya-Albiol (2015). A mindfulness-based program improves health in caregivers of people with Autism Spectrum Disorder: a pilot study. Mindfulness.

  • Sawyer, M., Bittman, M., La Greca, A. M., Crettenden, A. D., Harchak, T. F., & Martin, J. (2010). Time demands of caring for children with autism: what are the implications for maternal mental health? Journal of Autism and Developmental Disorders, 40, 620–628.

    Article  PubMed  Google Scholar 

  • Taffe, J. R., Gray, K. M., Einfeld, S. L., et al. (2007). Short form of the developmental behaviour checklist. American Journal on Mental Retardation, 112(1), 31–39.

    Article  PubMed Central  PubMed  Google Scholar 

  • Taylor, S. E., & Stanton, A. L. (2007). Coping resources, coping processes, and mental health. Annual Review of Clinical Psychology, 3, 377–401.

    Article  PubMed  Google Scholar 

  • Tsikriktsis, N. (2005). A review of techniques for treating missing data in OM survey research. Journal of Operations Management, 24(1), 53–62.

    Article  Google Scholar 

  • Walsh, F. (2003). Family resilience: a framework for clinical practice. Family Process, 42(1), 1–18.

    Article  PubMed  Google Scholar 

  • Weiss, M. J. (2002). Hardiness and social support as predictors of stress in mothers of typical children, children with autism, and children with mental retardation. Autism, 6(1), 115–130.

    Article  PubMed  Google Scholar 

  • Weiss, J. A., Cappadocia, M. C., MacMullin, J. A., Viecili, M., & Lunsky, Y. (2012). The impact of child problem behaviors of children with ASD on parent mental health: the mediating role of acceptance and empowerment. Autism, 16(3), 261–274.

    Article  PubMed  Google Scholar 

  • Yu, C. (2008). Resilience of the parents of children with autism and related disorders. Graduate degree thesis, Nanjing Normal University, China.

  • Zablotsky, B., Anderson, C., & Law, P. (2013). The association between child autism symptomatology, maternal quality of life, and risk for depression. Journal of Autism and Developmental Disorders, 43(8), 1946–1955.

    Article  PubMed  Google Scholar 

  • Zhang, W., Yan, T., Du, Y., & Liu, X. (2013). Relationships between coping, rumination and posttraumatic growth in mothers of children with Autism Spectrum Disorders. Research in Autism Spectrum Disorders, 7(10), 1204–1210.

    Article  Google Scholar 

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Correspondence to Lynn Ward.

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Whitehead, K., Dorstyn, D. & Ward, L. Psychological Adjustment in Families Affected by Autism Spectrum Disorder. J Dev Phys Disabil 27, 703–717 (2015). https://doi.org/10.1007/s10882-015-9446-0

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