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.
Similar content being viewed by others
Change history
04 February 2019
The authors attributed on this article should be listed as ?Kim Desmarais and Erin Barker.? Therefore, Jean-Philippe Gouin should be removed from the author list.
04 February 2019
The authors attributed on this article should be listed as “Kim Desmarais and Erin Barker.” Therefore, Jean-Philippe Gouin should be removed from the author list.
04 February 2019
The authors attributed on this article should be listed as “Kim Desmarais and Erin Barker.” Therefore, Jean-Philippe Gouin should be removed from the author list.
References
Papers of particular interest, published recently, have been highlighted as: • Of importance •• Of major importance
• 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.
American Psychiatric Association. Diagnostic and statistical manual of mental disorders, 5th ed. Arlington, VA: American Psychiatric Publishing; 2013.
•• 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.
• 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.
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.
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.
Mount N, Dillon G. Parents’ experiences of living with an adolescent with an autism spectrum disorder. Educ Child Psychol. 2014;31:72–81.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
• 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.
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.
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.
•• 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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
•• 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.
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.
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.
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.
Santelli B, Turnbull AP, Marquis J, Lerner E. Statewide parent to parent programs: partners in early intervention. Infant Young Child. 2000;13:74–88.
• 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.
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.
• 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.
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.
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.
• 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.
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.
Bronfenbrenner U. Toward an experimental ecology of human development. Am Psychol. 1977;7:513–31.
Author information
Authors and Affiliations
Corresponding author
Ethics declarations
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.
Additional information
This article is part of the Topical Collection on Autism Spectrum
Rights and permissions
About this article
Cite this article
Desmarais, K., Barker, E. & Gouin, JP. Service Access to Reduce Parenting Stress in Parents of Children with Autism Spectrum Disorders. Curr Dev Disord Rep 5, 116–123 (2018). https://doi.org/10.1007/s40474-018-0140-7
Published:
Issue Date:
DOI: https://doi.org/10.1007/s40474-018-0140-7