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Research Articles

Representations of parenting autistic children: A critical interpretive synthesis

ORCID Icon, ORCID Icon, ORCID Icon & ORCID Icon
Pages 1209-1223 | Received 27 Jul 2022, Accepted 02 May 2023, Published online: 10 May 2023

References

  • Eaton K, Ohan JL, Stritzke WGK, et al. Failing to meet the good parent ideal: self-Stigma in parents of children with mental health disorders. J Child Fam Stud. 2016;25:3109–3123.
  • Tabatabai A. Mother of a person: neoliberalism and narratives of parenting children with disabilities. Disabil Soc. 2019;35:1–21.
  • Chiaraluce CA. Narratives on the autism journey: “doing family” and redefining the caregiver self. J Fam Issues. 2018;39:2883–2905.
  • Solomon O, Bagatell N. Introduction: autism: rethinking the possibilities. Ethos. 2010;38:1–7.
  • Feudtner C, Walter JK, Faerber JA, et al. Good-parent beliefs of parents of seriously ill children. JAMA Pediatr. 2015;169:39–47.
  • Namkung EH, Greenberg JS, Mailick MR, et al. Lifelong parenting of adults with developmental disabilities: growth trends over 20 years in midlife and later life. Am J Intellect Dev Disabil. 2018;123:228–240.
  • Gappmayer G. Disentangling disablism and ableism: the social norm of being able and its influence on social interactions with people with intellectual disabilities. J Occup Sci. 2021;28:102–113.
  • Bonsall A. Fathering occupations: an analysis of narrative accounts of fathering children with special needs. J Occup Sci. 2014;21:504–518.
  • Rudman DL. Occupational terminology: occupational possibilities. J Occup Sci. 2010;17:55–59.
  • Boyd BA, McCarty CH, Sethi C. Families of children with autism: a synthesis of family routines literature. J Occup Sci. 2014;21:322–333.
  • Ludlow A, Skelly C, Rohleder P. Challenges faced by parents of children diagnosed with autism spectrum disorder. J Health Psychol. 2012;17:702–711.
  • DePape A-M, Lindsay S. Parents’ experiences of caring for a child with autism spectrum disorder. Qual Health Res. 2015;25:569–583.
  • Brewer A. “We were on our own”: mothers’ experiences navigating the fragmented system of professional care for autism. Soc Sci Med. 2018;215:61–68.
  • Dixon-Woods M, Cavers D, Agarwal S, et al. Conducting a critical interpretive synthesis of the literature on access to healthcare by vulnerable groups. BMC Med Res Methodol. 2006;6:35.
  • Dunn DS, Andrews EE. Person-first and identity-first language: developing psychologists’ cultural competence using disability language. Am Psychol. 2015;70:255–264.
  • Njelesani J, Gibson BE, Nixon S, et al. Towards a critical occupational approach to research. Int J Qual Meth. 2013;12:207–220.
  • Haegele JA, Lee J, Chang SH. Physical activity of parents of children with autism spectrum disorder. Int J Disabil Dev Educ. 2016;64:1–10.
  • Association AP. Diagnostic and statistical manual of mental disorders. 5th ed. Arlington (VA): American Psychiatric Association; 2013.
  • Rizk S, Pizur-Barnekow K, Darragh AR. Leisure and social participation and health-related quality of life in caregivers of children with autism. OTJR Occup Participation Heal. 2011;31(4):164–171.
  • Anderson J, Marley C, Gillespie-Smith K, et al. When the mask comes off: mothers’ experiences of parenting a daughter with autism spectrum condition. Autism. 2020;24:1546–1556.
  • Hodgetts S, McConnell D, Zwaigenbaum L, et al. The impact of autism services on mothers’ occupational balance and participation. OTJR Occup Participation Heal. 2013;34:81–93.
  • Kim K, Kim J, Voight A, et al. Listening to the screaming whisper: a voice of mother caregivers of children with autistic spectrum disorder (ASD). Int J Qual Stud Health Well-Being. 2018;13:1479585.
  • McAuliffe T, Thomas Y, Vaz S, et al. The experiences of mothers of children with autism spectrum disorder: managing family routines and mothers’ health and wellbeing. Aust Occup Ther J. 2019;66:68–76.
  • Sedgley D, Pritchard A, Morgan N, et al. Tourism and autism: journeys of mixed emotions. Ann Tourism Res. 2017;66:14–25.
  • Ausderau K, Juarez M. The impact of autism spectrum disorders and eating challenges on family mealtimes. ICAN Infant Child Adolesc Nutrition. 2013;5:315–323.
  • Cohen SR, Miguel J, Guerra AW. Child-rearing routines among Mexican-heritage children with autism spectrum disorder. Autism. 2020;24:80–94.
  • Mitchell J, Lashewicz B. More than a pal: the generative leisure work of fathers raising children with autism spectrum disorder. Fathering. 2015;2:130–145.
  • Frye L. Fathers’ experience with autism spectrum disorder: nursing implications. J Pediatr Health Care. 2016;30:453–463.
  • Keller T, Ramisch J, Carolan M. Relationships of children with autism spectrum disorders and their fathers. Qual Rep. 2014;19:1–15.
  • Potter CA. Father involvement in the care, play, and education of children with autism. J Intellect Dev Dis. 2017;42:375–384.
  • Bagatell N. The routines and occupations of families with adolescents with autism spectrum disorders. Focus Autism Other Dev Disabl. 2016;31:49–59.
  • Ho H, Fergus K, Perry A. Looking back and moving forward: the experiences of canadian parents raising an adolescent with autism spectrum disorder. Res Autism Spect Dis. 2018;52:12–22.
  • Stoner JB, Stoner CR. Career disruption: the impact of transitioning from a full-time career professional to the primary caregiver of a child with autism spectrum disorder. Focus Autism Other Dev Disabl. 2016;31:104–114.
  • Boshoff K, Gibbs D, Phillips RL, et al. Parents’ voices: ‘why and how we advocate’. A meta-synthesis of parents’ experiences of advocating for their child with autism spectrum disorder. Child Care Health Dev. 2016;42:784–797.
  • Marsack CN, Perry TE. Aging in place in every community: social exclusion experiences of parents of adult children with autism spectrum disorder. Res Aging. 2018;40:535–557.
  • Angell AM, Frank G, Solomon O. Latino families’ experiences with autism services: disparities, capabilities, and occupational justice. OTJR (Thorofare N J). 2016;36(4):195–203.
  • Hines M, Balandin S, Togher L. The stories of older parents of adult sons and daughters with autism: a balancing act. J Appl Res Intellect Disabil. 2014;27(2):163–173.
  • Hoogsteen L, Woodgate RL. Centering autism within the family: a qualitative approach to autism and the family. J Pediatr Nurs. 2013;28:135–140.
  • Walton KM. Leisure time and family functioning in families living with autism spectrum disorder. Autism. 2019;23:1384–1397.
  • Runswick-Cole K, Ryan S. Liminal still? Unmothering disabled children. Disabil Soc. 2019;34:1–15.
  • Jaarsma P, Welin S. Autism as a natural human variation: reflections on the claims of the neurodiversity movement. Health Care Anal. 2012;20:20–30.
  • McGuire A. War on autism: on the cultural logic of normative violence. Ann Arbor (MI): University of Michigan Press; 2016.
  • Iadarola S, Pérez-Ramos J, Smith T, et al. Understanding stress in parents of children with autism spectrum disorder: a focus on under-represented families. Int J Dev Disabil. 2019;65:20–30.
  • Gerlach AJ, Teachman G, Laliberte-Rudman D, et al. Expanding beyond individualism: engaging critical perspectives on occupation. Scand J Occup Ther. 2017;25:1–9.
  • Gibson BE. Rehabilitation: a Post-Critical approach. 1st ed. Boca Raton: CRC Press; 2016.

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