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Current Developmental Disorders Reports

, Volume 5, Issue 2, pp 116–123 | Cite as

Service Access to Reduce Parenting Stress in Parents of Children with Autism Spectrum Disorders

  • Kim Desmarais
  • Erin Barker
  • Jean-Philippe Gouin
Autism Spectrum (A Richdale and L Lawson, Section Editor)
  • 96 Downloads
Part of the following topical collections:
  1. Topical Collection on Autism Specrtum

Abstract

Purpose of the Review

Autism spectrum disorders (ASD) are on the rise. Research has consistently shown that parents of children with ASD experience high levels of stress that impacts their health and emotional well-being.

Recent Findings

Parents of children with ASD report more stress and psychological distress than parents of children with other disabilities and typically developing children. Stressors are present throughout the child’s lifespan and are exacerbated at transition points (e.g., transition from high school to adulthood). However, support services may help alleviate parental stress.

Summary

Parents of children with ASD experience significant parenting stress that impacts their emotional and physical well-being, as well as their marital relationships. Research has identified possible interventions to help these parents cope. Future research should focus on evaluating the impact of policy change to allow existing systems to implement the recommendations in line with research findings.

Keywords

Autism spectrum disorders Parenting stress Well-being Transitions Coping Caregiver burden 

Notes

Compliance with Ethical Standards

Conflict of Interest

The authors declare that they have no conflict of interest.

Human and Animal Rights and Informed Consent

This article does not contain any studies with human or animal subjects performed by any of the authors.

References

Papers of particular interest, published recently, have been highlighted as: • Of importance •• Of major importance

  1. 1.
    • Christensen DL, Bilder DA, Zahorodny W, Pettygrove S, Durkin MS, Fitzgerald RT, et al. Prevalence and characteristics of autism spectrum disorder among 4-year-old children in the autism and developmental disabilities monitoring network. J Dev Behav Pediatr. 2016;37:1–8.  https://doi.org/10.1097/DBP.0000000000000235. Article provides recent statistics on the current prevalence and symptomatology of ASD.
  2. 2.
    American Psychiatric Association. Diagnostic and statistical manual of mental disorders, 5th ed. Arlington, VA: American Psychiatric Publishing; 2013.Google Scholar
  3. 3.
    •• Barker ET, Mailick MR, Smith LE. Chronic parenting stress in mothers of adolescents and adults with autism: vulnerability and resilience. In: Comprehensive guide to autism. New York: Springer; 2014. Article explains the trajectory of parenting stress and how stress contributes to eventual physical and mental distress. Points to the importance of intervention throughout the lifespan and suggests some areas for intervention. Google Scholar
  4. 4.
    • McGrew JH, Keyes ML. Caregiver stress during the first year after diagnosis of an Autism Spectrum Disorder. Res Autism Spect Dis. 2014;8:1373–85.  https://doi.org/10.1016/j/rasd.2014.07.011. Article explains factors that might be promoting or hindering maternal adjustment in the year following their child’s diagnosis. CrossRefGoogle Scholar
  5. 5.
    Hayes SA, Watson SL. The impact of parenting stress: a meta-analysis of studies comparing the experience of parenting stress in parents of children with and without autism spectrum disorder. J Autism Dev Disord. 2013;43:629–42.  https://doi.org/10.1007/s10803-012-1604-y.PubMedCrossRefGoogle Scholar
  6. 6.
    Seltzer MM, Greenberg JS, Floyd FJ, Pettee Y, Hong J. Life course impacts of parenting a child with a disability. Am J Ment Retard. 2001;106:265–86.PubMedCrossRefGoogle Scholar
  7. 7.
    Mount N, Dillon G. Parents’ experiences of living with an adolescent with an autism spectrum disorder. Educ Child Psychol. 2014;31:72–81.Google Scholar
  8. 8.
    Hoogsteen L, Woodgate RL. Centering autism within the family: a qualitative approach to autism and the family. J Pediatr Nurs. 2012;28:135–40.  https://doi.org/10.1016/j.pedn.2012.06.002.PubMedCrossRefGoogle Scholar
  9. 9.
    Young A, Ruble L, McGrew J. Public vs. private insurance: cost, use, accessibility, and outcomes of services for children with autism spectrum disorders. Res Autism Spect Dis. 2009;3:1023–33.  https://doi.org/10.1016/j.rasd.2009.06.006.CrossRefGoogle Scholar
  10. 10.
    Howlin P, Moore A. Diagnosis in autism a survey of over 1200 patients in the UK. Autism. 1997;1:135–62.  https://doi.org/10.1177/1362361397012003.CrossRefGoogle Scholar
  11. 11.
    Shea V, Mesibov G. Age-related issues in the assessment of autism spectrum disorders. In: Goldstein S, Naglieri J, Oznoff S, editors. Assessment of autism spectrum disorders. NY: Guilford Press; 2009.Google Scholar
  12. 12.
    Taylor JL, Seltzer MM. Changes in the autism behavioral phenotype during the transition to adulthood. J Autism Dev Disord. 2010;40:1431–46.  https://doi.org/10.1007/s10803-010-1005-z.PubMedPubMedCentralCrossRefGoogle Scholar
  13. 13.
    Vasilopoulou E, Nisbet J. The quality of life of parents of children with autism spectrum disorder: a systematic review. Res Autism Spect Dis. 2016;23:36–49.  https://doi.org/10.1016/j.rasd.2015.11.008.CrossRefGoogle Scholar
  14. 14.
    Deater-Deckard K. Parenting stress and child adjustment: some old hypotheses and new questions. Clin Psychol-Sci Pr. 1998;5:314–32.  https://doi.org/10.1111/j.1468-2850.1998.tb00152.x.CrossRefGoogle Scholar
  15. 15.
    Folkman S, Lazarus RS. If it changes it must be a process: study of emotion and coping during three stages of a college examination. J Pers Soc Psychol. 1985;48:150.  https://doi.org/10.1037/0022-3514.48.1.150.PubMedCrossRefGoogle Scholar
  16. 16.
    Baker-Ericzén MJ, Brookman-Frazee L, Stahmer A. Stress levels and adaptability in parents of toddlers with and without autism spectrum disorders. Res Pract Persons Severe Disabl. 2005;30:194–204.  https://doi.org/10.2511/rpsd.30.4.194.CrossRefGoogle Scholar
  17. 17.
    Rao PA, Beidel DC. The impact of children with high-functioning autism on parental stress, sibling adjustment, and family functioning. Behav Modif. 2009;33:437–51.  https://doi.org/10.1177/0145445509336427.PubMedCrossRefGoogle Scholar
  18. 18.
    • Galpin J, Barratt P, Ashcroft E, Greathead S, Kenny L, Pellicano E. The dots just don’t join up: understanding the support needs of families of children on the autism spectrum. Autism. 2017;1–14.  https://doi.org/10.1177/1362361316687989. Article provides an interesting qualitative account from the perspective of parents with regard to helpful and less helpful professional practices in promoting well-being.
  19. 19.
    Cadman T, Eklund H, Howley D, Hayward H, Clarke H, Findon J, et al. Caregiver burden as people with autism spectrum disorder and attention-deficit/hyperactivity disorder transition into adolescence and adulthood in the United Kingdom. J Am Acad Child Adolesc. 2012;51:879–88.  https://doi.org/10.1016/j.jaac.2012.06.017.
  20. 20.
    Preece D. A matter of perspective: the experience of daily life and support of mothers, fathers and siblings living with children on the autism spectrum with high support needs. Good Autism Prac (GAP). 2014;15:81–90.Google Scholar
  21. 21.
    •• Hodgetts S, McConnell D, Zwaigenbaum L, Nicholas D. The impact of autism services on mothers' psychological wellbeing. Child Care Health Dev. 2017;43:18–30.  https://doi.org/10.1111/cch.12398. Article studies the influence of formal service on maternal well-being. Provides information about aspects that could be potential points of intervention in promoting and supporting parental well-being. PubMedCrossRefGoogle Scholar
  22. 22.
    DePape AM, Lindsay S. Parents’ experiences of caring for a child with autism spectrum disorder. Qual Health Res. 2015;25:569–83.  https://doi.org/10.1177/1049732314552455.PubMedCrossRefGoogle Scholar
  23. 23.
    Gray DE. Ten years on: a longitudinal study of families of children with autism. J Intellect Dev Dis. 2002;27:215–22.  https://doi.org/10.1080/1366825021000008639.CrossRefGoogle Scholar
  24. 24.
    Chawarska K, Paul R, Klin A, Hannigen S, Dichtel LE, Volkmar F. Parental recognition of developmental problems in toddlers with autism spectrum disorders. J Autism Dev Disord. 2007;37:62–72.  https://doi.org/10.1007/s1803-006-0330-8.PubMedCrossRefGoogle Scholar
  25. 25.
    Siperstein R, Volkmar F. Brief report: parental reporting of regression in children with pervasive developmental disorders. J Autism Dev Disord. 2004;34:731–4.  https://doi.org/10.1007/s10803-004-5294-y.PubMedCrossRefGoogle Scholar
  26. 26.
    Davidovitch M, Glick L, Holtzman G, Tirosh E, Safir MP. Developmental regression in autism: maternal perception. J Autism Dev Disord. 2000;30:113–9.  https://doi.org/10.1023/A:1005403421141.PubMedCrossRefGoogle Scholar
  27. 27.
    Luyster R, Richler J, Risi S, Hsu WL, Dawson G, Bernier R, et al. Early regression in social communication in autism spectrum disorders: a CPEA Study. Dev Neuropsychol. 2005;27:311–36.Google Scholar
  28. 28.
    Avdi E, Griffin C, Brough S. Parents' constructions of professional knowledge, expertise and authority during assessment and diagnosis of their child for an autistic spectrum disorder. Br J Med Psychol. 2000;73(3):327–38.  https://doi.org/10.1348/000711200160543.PubMedCrossRefGoogle Scholar
  29. 29.
    Martínez-Pedraza FDL, Carter AS. Autism spectrum disorders in young children. Child Adolesc Psychiatr Clin N Am. 2009;18:645–63.  https://doi.org/10.1016/j.chc.2009.02.002.PubMedCentralCrossRefGoogle Scholar
  30. 30.
    Sices L, Feudtner C, McLaughlin J, Drotar D, Williams M. How do primary care physicians manage children with possible developmental delays? A national survey with an experimental design. Pediatrics. 2004;113:274–82.  https://doi.org/10.1542/peds.113.2.274.PubMedCrossRefGoogle Scholar
  31. 31.
    Howlin P, Asgharian A. The diagnosis of autism and Asperger syndrome: findings from a survey of 770 families. Dev Med Child Neurol. 1999;41:834–9.PubMedCrossRefGoogle Scholar
  32. 32.
    Mandell DS, Novak MM, Zubritsky CD. Factors associated with age of diagnosis among children with autism spectrum disorders. Pediatrics. 2005;116(6):1480–6.  https://doi.org/10.1542/peds.2005-0185.PubMedPubMedCentralCrossRefGoogle Scholar
  33. 33.
    Soke GN, Maenner MJ, Christensen D, Kurzius-Spencer M, Schieve LA. Brief report: estimated prevalence of a community diagnosis of autism spectrum disorder by age 4 years in children from selected areas in the United States in 2010: evaluation of birth cohort effects. J Autism Dev Disord. 2017;47:1917–22.  https://doi.org/10.1007/s10803-017-3094-4.PubMedPubMedCentralCrossRefGoogle Scholar
  34. 34.
    Howlin P, Alcock J, Burkin C. An 8 year follow-up of a specialist supported employment service for high-ability adults with autism or Asperger syndrome. Autism. 2005;9:533–49.  https://doi.org/10.1177/1362361305057871.PubMedCrossRefGoogle Scholar
  35. 35.
    Taylor JL, Seltzer MM. Employment and post-secondary educational activities for young adults with autism spectrum disorders. J Autism Dev Disord. 2011;41:566–74.  https://doi.org/10.1007/s10803-010-1070-3.PubMedPubMedCentralCrossRefGoogle Scholar
  36. 36.
    Esbensen AJ, Seltzer MM, Krauss MW. Stability and change in health, functional abilities, and behavior problems among adults with and without Down syndrome. Am J Ment Retard. 2008;113:263–77. https://doi.org/10.1352/0895-8017(2008)113[263:SACIHF]2.0.CO;2.Google Scholar
  37. 37.
    Shea V, Mesibov GB. Adolescents and adults with autism. In: Volkmar FR, Paul R, Klin A, Cohen DJ, editors. Handbook of autism and pervasive developmental disorders. Third ed. Hoboken: John Wiley & Sons; 2005.Google Scholar
  38. 38.
    Hastings RP, Beck A. Practitioner review: stress intervention for parents of children with intellectual disabilities. J Child Psychol Psychiatry. 2004;45(8):1338–49.  https://doi.org/10.1111/j.1469-7610.2004.00357.x.PubMedCrossRefGoogle Scholar
  39. 39.
    Weiss JA, Cappadocia MC, MacMullin JA, Viecili M, Lunsky Y. The impact of child problem behaviors of children with ASD on parent mental health: the mediating role of acceptance and empowerment. Autism. 2012;16:261–74.  https://doi.org/10.1177/1362361311422708.PubMedCrossRefGoogle Scholar
  40. 40.
    Costa AP, Steffgen G, Ferring D. Contributors to well-being and stress in parents of children with autism spectrum disorder. Res Autism Spectr Disord. 2017;37:61–72.  https://doi.org/10.1016/j.rasd.2017.01.007.CrossRefGoogle Scholar
  41. 41.
    Rayan A, Ahmad M. Effectiveness of mindfulness-based intervention on perceived stress, anxiety, and depression among parents of children with autism spectrum disorder. Mindfulness. 2017;8:677–90.  https://doi.org/10.1007/s12671-016-0595-8.CrossRefGoogle Scholar
  42. 42.
    Blackledge JT, Hayes SC. Using acceptance and commitment training in the support of parents of children diagnosed with autism. Child Fam Behav Ther. 2006;28:1–8.  https://doi.org/10.1300/J019v28n01_01.CrossRefGoogle Scholar
  43. 43.
    Ekas NV, Timmons L, Pruitt M, Ghilain C, Alessandri M. The power of positivity: predictors of relationship satisfaction for parents of children with autism spectrum disorder. J Autism Dev Disord. 2015;45:1997–2007.  https://doi.org/10.1007/s10803-015-2362-4.PubMedCrossRefGoogle Scholar
  44. 44.
    Kabat-Zinn J. Mindfulness-based interventions in context: past, present, and future. Clin Psychol Sci Pract. 2003;10:144–56.  https://doi.org/10.1093/clipsy.bpg016.CrossRefGoogle Scholar
  45. 45.
    Lunsky Y, Hastings RP, Weiss JA, Palucka AM, Hutton S, White K. Comparative effects of mindfulness and support and information group interventions for parents of adults with autism spectrum disorder and other developmental disabilities. J Autism Dev Disord. 2017;47:1–11.  https://doi.org/10.1007/s10803-017-3099-z.CrossRefGoogle Scholar
  46. 46.
    •• Hartley SL, Schultz HM. Support needs of fathers and mothers of children and adolescents with autism spectrum disorder. J Autism Dev Disord. 2015;45:1636–48.  https://doi.org/10.1007/s10803-014-2318-0. Article provides insight on the needs of fathers of children with ASD, a group often hard to find in ASD literature. Demonstrates the overlap of support needs between both parents, as well as father specific needs. PubMedPubMedCentralCrossRefGoogle Scholar
  47. 47.
    Hartley SL, Barker ET, Baker JK, Seltzer MM, Greenberg JS. Marital satisfaction and life circumstances of grown children with autism across 7 years. J Fam Psychol. 2012;26:688–707.  https://doi.org/10.1037/a0029354.PubMedPubMedCentralCrossRefGoogle Scholar
  48. 48.
    Navot N, Jorgenson AG, Vander Stoep A, Toth K, Webb SJ. Family planning and family vision in mothers after diagnosis of a child with autism spectrum disorder. Autism. 2016;20:605–15.  https://doi.org/10.1177/1362361315602134.PubMedCrossRefGoogle Scholar
  49. 49.
    Hall HR, Neely-Barnes SL, Graff JC, Krcek TE, Roberts RJ, Hankins JS. Parental stress in families of children with a genetic disorder/disability and the resiliency model of family stress, adjustment, and adaptation. Issues Compr Pediatr Nurs. 2012;35:24–44.  https://doi.org/10.3109/01460862.2012.646479.PubMedCrossRefGoogle Scholar
  50. 50.
    Santelli B, Turnbull AP, Marquis J, Lerner E. Statewide parent to parent programs: partners in early intervention. Infant Young Child. 2000;13:74–88.CrossRefGoogle Scholar
  51. 51.
    • Benson PR. The longitudinal effects of network characteristics on the mental health of mothers of children with ASD: the mediating role of parent cognitions. J Autism Dev Disord. 2016;46:1699–715.  https://doi.org/10.1007/s10803-016-2699-3. Article investigates the different aspects of social networks that hinder or support maternal self-efficacy and perceived support. PubMedCrossRefGoogle Scholar
  52. 52.
    DaWalt LS, Greenberg JS, Mailick MR. Transitioning together: a multi-family group psychoeducation program for adolescents with ASD and their parents. J Autism Dev Disord. 2017;48:1–3.  https://doi.org/10.1007/s10803-017-3307-x.Google Scholar
  53. 53.
    • Krakovich TM, McGrew JH, Yu Y, Ruble LA. Stress in parents of children with autism spectrum disorder: an exploration of demands and resources. J Autism Dev Disord. 2016;46:2042–53.  https://doi.org/10.1007/s10803-016-2728-2. Article examines a new intervention that supports parents through their child’s transition to adulthood. PubMedCrossRefGoogle Scholar
  54. 54.
    Johnson NL, Simpson PM. Lack of father involvement in research on children with autism spectrum disorder: maternal parenting stress and family functioning. Issues Ment Health Nurs. 2013;34:220–8.  https://doi.org/10.3109/01612840.2012.745177.PubMedCrossRefGoogle Scholar
  55. 55.
    Da Paz NS, Wallander JL. Interventions that target improvements in mental health for parents of children with autism spectrum disorders: a narrative review. Clin Psychol Rev. 2017;51:1–14.  https://doi.org/10.1016/j.cpr.2016.10.006.PubMedCrossRefGoogle Scholar
  56. 56.
    • Shawler PM, Sullivan MA. Parental stress, discipline strategies, and child behavior problems in families with young children with autism spectrum disorders. Focus Autism Dev Dis. 2017;32:142–51.  https://doi.org/10.1177/1088357615610114. Article examines association between stress, discipline strategies, and child behavior problems. Impact of discipline strategies could especially important as a target for intervention that would help reduce stress and improve child’s behavioral issues. CrossRefGoogle Scholar
  57. 57.
    Kuhlthau K, Payakachat N, Delahaye J, Hurson J, Pyne JM, Kovacs E, et al. Quality of life for parents of children with autism spectrum disorders. Res Autism Spect Dis. 2014;8:1339–50.  https://doi.org/10.1016/j.rasd.2014.07.002.
  58. 58.
    Bronfenbrenner U. Toward an experimental ecology of human development. Am Psychol. 1977;7:513–31.CrossRefGoogle Scholar

Copyright information

© Springer International Publishing AG, part of Springer Nature 2018

Authors and Affiliations

  • Kim Desmarais
    • 1
    • 2
  • Erin Barker
    • 1
    • 2
  • Jean-Philippe Gouin
    • 2
    • 3
  1. 1.Center for Research in Human Development (CRDH)Concordia UniversityMontrealCanada
  2. 2.Department of PsychologyConcordia UniversityMontrealCanada
  3. 3.Center for Clinical Research in Health (CCRH)Concordia UniversityMontrealCanada

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