Advertisement

Advances in Neurodevelopmental Disorders

, Volume 1, Issue 4, pp 260–270 | Cite as

Distress and Psychological Growth in Parenting an Adult Child with Autism Spectrum Disorder and Aggression

  • Linda Swaab
  • Lynne McCormackEmail author
  • Linda E. Campbell
ORIGINAL PAPER

Abstract

Parenting an adult child with autism spectrum disorder (ASD) who has intermittent outbursts of aggression may expose parents and other family members to potential physical threat and psychological distress including chronic hypervigilance. However, no known studies have explored the ‘lived’ experience of parenting an adult child diagnosed with ASD who displays aggression. Therefore, this phenomenological study sought both negative and positive subjective interpretations of three parents of adult sons with ASD (aged between 20 and 30) displaying intermittent and unpredictable aggressive behaviours. Data was collected through semi-structured interviews, transcribed and analysed using interpretative phenomenological analysis (IPA). One main theme emerged: Complex parental distress and growth overarching six subordinate themes. Themes describe the psychological and emotional unpredictability that was relentless in daily life whilst parenting a child diagnosed with ASD complicated by outbursts of aggressive behaviour. Anticipation of potentially traumatic events was expressed as constant. The powerful emotions of frustration, empathy, pity and an intense need to protect the child with ASD who displays aggression were in contrast with felt stigma and societal criticism. In time, they developed their own pragmatic survival strategies for functioning as a family that could accommodate each family member’s needs as much as possible. Psychological well-being became a balance of striving for personal psychological growth despite the constancy of anticipatory traumatic events. Future research and implications are discussed.

Keywords

Autism spectrum disorder ASD Aggression IPA Psychological distress Psychological growth 

Notes

Acknowledgements

The authors would like to thank the participants for their generous contribution to this research project.

Compliance with Ethical Standards

Funding

No funding was required or given for this study.

Ethical Approval

All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.

Informed Consent

Informed consent was obtained from all individual participants included in the study.

References

  1. American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders (5th ed.). Arlington, VA: American Psychiatric Association.CrossRefGoogle Scholar
  2. Australian Bureau of Statistics. (2012). Autism in Australia. Retrieved from http: //www. abs.gov.au/AUSSTATS/abs@.nsf/Latestproducts/4428.0MainFeatures12012?opendocument&tabname=Summary&prodno=4428.0&issue=2012&num=&view=.
  3. Carroll, D., Hallett, V., McDougle, C. J., Aman, M. G., McCracken, J. T., Tierney, E., et al. (2014). Examination of aggression and self-injury in children with autism spectrum disorders and serious behavioral problems. Child and Adolescent Psychiatric Clinics of North America, 23(1), 57–72. doi: 10.1016/j.chc.2013.08.002.CrossRefPubMedPubMedCentralGoogle Scholar
  4. DeGrace, B. W. (2004). The everyday occupation of families with children with autism. The American Journal of Occupational Therapy, 58(5), 543–550.CrossRefPubMedGoogle Scholar
  5. Denzin, N. K., & Lincoln, Y. S. (2011). The Sage handbook of qualitative research. Thousand Oaks: Sage.Google Scholar
  6. Doehring, P., Reichow, B., Palka, T., Phillips, C., & Hagopian, L. (2014). Behavioral approaches to managing severe problem behaviors in children with autism spectrum and related developmental disorders: A descriptive analysis. Child and Adolescent Psychiatric Clinics of North America, 23(1), 25-40. doi: 10.1016/j.chc.2013.08.001.
  7. Dominick, K. C., Davis, N. O., Lainhart, J., Tager-Flusberg, H., & Folstein, S. (2007). Atypical behaviors in children with autism and children with a history of language impairment. Research in Developmental Disabilities, 28(2), 145–162. doi: 10.1016/j.ridd.2006.02.003.CrossRefPubMedGoogle Scholar
  8. Estes, A., Munson, J., Dawson, G., Koehler, E., Zhou, X.-H., & Abbott, R. (2009). Parenting stress and psychological functioning among mothers of preschool children with autism and developmental delay. Autism, 13(4), 375–387. doi: 10.1177/1362361309105658.CrossRefPubMedGoogle Scholar
  9. Figley, C. R. (Ed.). (1995). Compassion fatigue: coping with secondary traumatic stress disorder in those who treat the traumatized. New York: Brunner/Mazel.Google Scholar
  10. Gabovitch, E. M., & Curtin, C. (2009). Family-centered care for children with autism spectrum disorders: a review. Marriage & Family Review, 45(5), 469–498.CrossRefGoogle Scholar
  11. Gray, D. E. (2002). Ten years on: a longitudinal study of families of children with autism. Journal of Intellectual & Developmental Disability, 27(3), 215–222. doi: 10.1080/1366825021000008639.CrossRefGoogle Scholar
  12. Guba, E. G., & Lincoln, Y. S. (1981). Effective evaluation: improving the usefulness of evaluation results through responsive and naturalistic approaches. San Francisco: Jossey-Bass Publishers.Google Scholar
  13. Guba, E. G., & Lincoln, Y. S. (1982). Epistemological and methodological bases of naturalistic inquiry. Educational Communication and Technology Journal, 30(4), 233–252. doi: 10.1007/bf02765185.Google Scholar
  14. Guba, E. G., & Lincoln, Y. S. (1989). Fourth generation evaluation. Newbury Park, CA: Sage.Google Scholar
  15. Gupta, A., & Singhal, N. (2005). Psychosocial support for families of children with autism. Asia Pacific Disability Rehabilitation Journal, 16(2), 62–83.Google Scholar
  16. Helgeson, V. S., Reynolds, K. A., & Tomich, P. L. (2006). A meta-analytic review of benefit finding and growth. Journal of Consulting and Clinical Psychology, 74(5), 797–816. doi: 10.1037/0022-006X.74.5.797.CrossRefPubMedGoogle Scholar
  17. Hodgetts, S., Nicholas, D., & Zwaigenbaum, L. (2013). Home sweet home? Families' experiences with aggression in children with autism spectrum disorders. Focus on Autism and Other Developmental Disabilities, 28(3), 166–174. doi: 10.1177/1088357612472932.CrossRefGoogle Scholar
  18. Hoogsteen, L., & Woodgate, R. L. (2013). Centering autism within the family: a qualitative approach to autism and the family. Journal of Pediatric Nursing, 28(2), 135–140.CrossRefPubMedGoogle Scholar
  19. Howlin, P., & Asgharian, A. (1999). The diagnosis of autism and Asperger syndrome: Findings from a survey of 770 families. Developmental Medicine and Child Neurology, 41(12), 834-839. doi: 10.1111/j.1469-8749.1999.tb00550.x.
  20. Joseph, S. (2011). What doesn't kill us: the new psychology of posttraumatic growth. New York, NY: Basic Books.Google Scholar
  21. Kanne, S. M., & Mazurek, M. O. (2011). Aggression in children and adolescents with ASD: prevalence and risk factors. Journal of Autism and Developmental Disorders, 41(7), 926–937. doi: 10.1007/s10803-010-1118-4.CrossRefPubMedGoogle Scholar
  22. 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), 172–183. doi: 10.1111/j.1365-2788.2005.00732.x.CrossRefPubMedGoogle Scholar
  23. Ludlow, A., Skelly, C., & Rohleder, P. (2012). Challenges faced by parents of children diagnosed with autism spectrum disorder. Journal of Health Psychology, 17(5), 702–711. doi: 10.1177/1359105311422955.CrossRefPubMedGoogle Scholar
  24. Mandell, D. S. (2008). Psychiatric hospitalization among children with autism spectrum disorders. Journal of Autism and Developmental Disorders, 38(6), 1059–1065. doi: 10.1007/s10803-007-0481-2.CrossRefPubMedGoogle Scholar
  25. Matson, J. L., & Nebel-Schwalm, M. (2007). Assessing challenging behaviors in children with autism spectrum disorders: a review. Research in Developmental Disabilities, 28(6), 567–579. doi: 10.1016/j.ridd.2006.08.001.CrossRefPubMedGoogle Scholar
  26. Matson, J. L., & Rivet, T. T. (2008). Characteristics of challenging behaviours in adults with autistic disorder, PDD-NOS, and intellectual disability. Journal of Intellectual & Developmental Disability, 33(4), 323–329. doi: 10.1080/13668250802492600.CrossRefGoogle Scholar
  27. Mayberry, M. L., & Espelage, D. L. (2006). Associations among empathy, social competence, & reactive/proactive aggression subtypes. Journal of Youth and Adolescence, 36(6), 787–798. doi: 10.1007/s10964-006-9113-y.CrossRefGoogle Scholar
  28. McCormack, L., & Joseph, S. (2013). Psychological growth in humanitarian aid personnel: reintegrating with family and community following exposure to war and genocide. Community, Work & Family, 16(2), 147–163. doi: 10.1080/13668803.2012.735478.CrossRefGoogle Scholar
  29. McCormack, L., & McKellar, L. (2015). Adaptive growth following terrorism: vigilance and anger as facilitators of posttraumatic growth in the aftermath of the Bali bombings. Traumatology, 21(2), 71–81. doi: 10.1037/trm0000025.CrossRefGoogle Scholar
  30. McCormack, L., & Thomson, S. (2017). Complex trauma in childhood, a psychiatric diagnosis in adulthood: making meaning of a double-edged phenomenon. Psychological Trauma: Theory, Research, Practice and Policy, 9(2), 156–165. doi: 10.1037/tra0000193.CrossRefGoogle Scholar
  31. McCormack, L., Hagger, M. S., & Joseph, S. (2010). Vicarious growth in wives of Vietnam veterans: a phenomenological investigation into decades of "lived" experience. Journal of Humanistic Psychology, 51(3), 273–290. doi: 10.1177/0022167810377506.CrossRefGoogle Scholar
  32. McGill, P., Hughes, D., Teer, K., & Rye, L. (2001). Variability in staff reports of the frequency of challenging behavior. Research in Developmental Disabilities, 22(3), 221–231.CrossRefPubMedGoogle Scholar
  33. McStay, R. L., Trembath, D., & Dissanayake, C. (2014). Stress and family quality of life in parents of children with autism spectrum disorder: parent gender and the double ABCX model. Journal of Autism and Developmental Disorders, 44(12), 3101–3118. doi: 10.1007/s10803-014-2178-7.CrossRefPubMedGoogle Scholar
  34. Morse, J. M. (2011). What is qualitative health research? In N. K. Denzin & Y. S. Lincoln (Eds.), The Sage handbook of qualitative research (4th ed., pp. 401–414). Thousand Oaks: Sage.Google Scholar
  35. Mount, N., & Dillon, G. (2014). Parents' experiences of living with an adolescent diagnosed with an autism spectrum disorder. Educational & Child Psychology, 31(4), 72–81.Google Scholar
  36. Pouw, L. B., Rieffe, C., Oosterveld, P., Huskens, B., & Stockmann, L. (2013). Reactive/proactive aggression and affective/cognitive empathy in children with ASD. Research in Developmental Disabilities, 34(4), 1256–1266. doi: 10.1016/j.ridd.2012.12.022.CrossRefPubMedGoogle Scholar
  37. Pozo, P., Sarria, E., & Brioso, A. (2014). Family quality of life and psychological well-being in parents of children with autism spectrum disorders: a double ABCX model. Journal of Intellectual Disability Research, 58(5), 442–458. doi: 10.1111/jir.12042.CrossRefPubMedGoogle Scholar
  38. Schieve, L. A., Blumberg, S. J., Rice, C., Visser, S. N., & Boyle, C. (2007). The relationship between autism and parenting stress. Pediatrics, 119(Supplement 1), 114–121. doi: 10.1542/peds.2006-2089Q.CrossRefGoogle Scholar
  39. Simpson, R. L., & Myles, B. S. (1998). Aggression among children and youth who have Asperger's syndrome: a different population. Preventing School Failure, 42(4), 149. doi: 10.1080/10459889809603730.CrossRefGoogle Scholar
  40. Smith, J. A. (1996). Beyond the divide between cognition and discourse: Using interpretative phenomenological analysis in health psychology. Psychology and Health, 11(2), 261-271.Google Scholar
  41. Smith, J. A., Flowers, P., & Larkin, M. (2009). Interpretative phenomenological analysis: theory, method and research. London: Sage.Google Scholar
  42. Smith, J. A., Joseph, S., & Das Nair, R. (2011). An interpretative phenomenological analysis of posttraumatic growth in adults bereaved by suicide. Journal of Loss and Trauma, 16(5), 413–430. doi: 10.1080/15325024.2011.572047.CrossRefGoogle Scholar
  43. Tedeschi, R. G., & Calhoun, L. G. (2004). Posttraumatic growth: conceptual foundations and empirical evidence. Psychological Inquiry, 15(1), 1–18. doi: 10.1207/s15327965pli1501_01.CrossRefGoogle Scholar
  44. White, S. E., McMorris, C., Weiss, J. A., & Lunsky, Y. (2011). The experience of crisis in families of individuals with autism spectrum disorder across the lifespan. Journal of Child and Family Studies, 21(3), 457–465. doi: 10.1007/s10826-011-9499-3.CrossRefGoogle Scholar
  45. Winstok, Z. (2015). The social mechanism linking inter-parental and parent-to-child physical violence. Journal of Family Violence, 30(6), 719–728. doi: 10.1007/s10896-015-9709-7.CrossRefGoogle Scholar

Copyright information

© Springer International Publishing AG 2017

Authors and Affiliations

  1. 1.School of Psychology, Faculty of Science and ITUniversity of NewcastleCallaghanAustralia

Personalised recommendations