1,887
Views
12
CrossRef citations to date
0
Altmetric
Review

From ‘Refrigerator Mothers’ to Empowered Advocates: The Evolution of the Autism Parent

, RN, PhDORCID Icon, , PhDORCID Icon & , BA, MBBS (Hons), FRANZCP, PhD, Dip Psychodynamic Psychotherapy, Cert ATPORCID Icon

References

  • Altiere, M. J., & von Kluge, S. (2009). Searching for acceptance: Challenges encountered while raising a child with autism. Journal of Intellectual & Developmental Disability, 34(2), 142–152. https://doi.org/10.1080/13668250902845202
  • Amaze. (2022). What we do. https://www.amaze.org.au/about-amaze/what-we-do/
  • Bekhet, A. K., Johnson, N. L., & Zauszniewski, J. A. (2012). Resilience in family members of persons with autism spectrum disorder: A review of the literature. Issues in Mental Health Nursing, 33(10), 650–656. https://doi.org/10.3109/01612840.2012.671441
  • Bent, C. A., Barbaro, J., & Dissanayake, C. (2017). Change in autism diagnoses prior to and following the introduction of DSM-5. Journal of Autism and Developmental Disorders, 47(1), 163–171. https://doi.org/10.1007/s10803-016-2942-y
  • Black, D. W., & Grant, J. E. (2014). DSM-5® guidebook: The essential companion to the Diagnostic and Statistical Manual of Mental Disorders. (5th ed.) American Psychiatric Publishing.
  • Bonis, S. (2016). Stress and parents of children with autism: A review of literature. Issues in Mental Health Nursing, 37(3), 153–163. https://doi.org/10.3109/01612840.2015.1116030
  • Boshoff, K., Gibbs, D., Phillips, R. L., Wiles, L., & Porter, L. (2016). 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 and Development, 42(6), 784–797. https://doi.org/10.1111/cch.12383
  • Bowlby, J. (1988). A secure base: Parent-child attachment and healthy human development. Basic Books.
  • Cairney, P. (2007). A ‘Multiple Lenses’ approach to policy change: The case of tobacco policy in the UK. British Politics, 2(1), 45–68. https://doi.org/10.1057/palgrave.bp.4200039
  • Centers for Disease Control and Prevention. (2007). Prevalence of autism spectrum disorder—autism and developmental disabilities monitoring network, six sites, United States, 2000. Morbidity and Mortality Weekly Report. Surveillance Summaries, 56(1), 1–11. https://pubmed.ncbi.nlm.nih.gov/17287714/
  • Christensen, D. L., Braun, K., Baio, J., Bilder, D., Charles, J., Constantino, J. N., Daniels, J., Durkin, M. S., Fitzgerald, R. T., Kurzius-Spencer, M., Lee, L. C., Pettygrove, S., Robinson, C., Schulz, E., Wells, C., Wingate, M. S., Zahorodny, W., & Yeargin-Allsopp, M. (2018). Prevalence and characteristics of autism spectrum disorder among children aged 8 years – Autism and developmental disabilities monitoring network, 11 sites, United States, 2012. Morbidity and Mortality Weekly Report. Surveillance Summaries, 65(13), 1–23. https://doi.org/10.15585/mmwr.ss6513a1
  • Clifford, T., & Minnes, P. (2013). Logging on: Evaluating an online support group for parents of children with autism spectrum disorders. Journal of Autism and Developmental Disorders, 43(7), 1662–1675. https://doi.org/10.1007/s10803-012-1714-6
  • Cook, K. A., & Willmerdinger, A. N. (2015). The history of autism. Narrative Documents. Book 1. https://scholarexchange.furman.edu/schopler-about/1
  • Dawson-Squibb, J.-J., Davids, E. L., Harrison, A. J., Molony, M. A., & de Vries, P. J. (2020). Parent education and training for autism spectrum disorders: Scoping the evidence. Autism, 24(1), 7–25. https://doi.org/10.1177/1362361319841739
  • Docherty, A. R., Shabalin, A. A., DiBlasi, E., Monson, E., Mullins, N., Adkins, D. E., Bacanu, S.-A., Bakian, A. V., Crowell, S., Chen, D., Darlington, T. M., Callor, W. B., Christensen, E. D., Gray, D., Keeshin, B., Klein, M., Anderson, J. S., Jerominski, L., Hayward, C., … Coon, H. (2020). Genome-wide association study of suicide death and polygenic prediction of clinical antecedents. American Journal of Psychiatry, 177(10), 917–927. https://doi.org/10.1176/appi.ajp.2020.19101025
  • Douglas, P. (2014). Refrigerator Mothers. Journal of the Motherhood Initiative for Research and Community Involvement, 5(1), 94–114. https://jarm.journals.yorku.ca/index.php/jarm/article/view/39328
  • Dreuth Zeman, L., Swanke, J., & Doktor, J. (2011). Strengths classification of social relationships among cybermothers raising children with autism spectrum disorders. The School Community Journal, 21, 37–51.
  • Evans, C. A., & Porter, C. L. (2009). The emergence of mother-infant co-regulation during the first year: Links to infants’ developmental status and attachment. Infant Behavior & Development, 32(2), 147–158. https://doi.org/10.1016/j.infbeh.2008.12.005
  • Fellowes, S. (2017). Putting the present in the history of autism. Studies in History and Philosophy of Science Part C: Studies in History and Philosophy of Biological and Biomedical Sciences, 61, 54–58. https://doi.org/10.1016/j.shpsc.2016.11.002
  • Frances, A. (2014). Resuscitating the biopsychosocial model. The Lancet. Psychiatry, 1(7), 496–497. https://doi.org/10.1016/S2215-0366(14)00058-3
  • Gernsbacher, M. A., Dawson, M., & Goldsmith, H. H. (2005). Three reasons not to believe in an autism epidemic. Current Directions in Psychological Science, 14(2), 55–58. https://doi.org/10.1111/j.0963-7214.2005.00334.x
  • Gulsrud, A. C., Jahromi, L. B., & Kasari, C. (2010). The co-regulation of emotions between mothers and their children with autism. Journal of Autism and Developmental Disorders, 40(2), 227–237. https://doi.org/10.1007/s10803-009-0861-x
  • Harris, J. (2018). Leo Kanner and autism: A 75-year perspective. International Review of Psychiatry, 30(1), 3–17. https://doi.org/10.1080/09540261.2018.1455646
  • Harris, J. C. (2016). The origin and natural history of autism spectrum disorders. Nature Neuroscience, 19(11), 1390–1391. https://doi.org/10.1038/nn.4427
  • Herman, J. (1992). Trauma and recovery. Basic Books.
  • 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. https://doi.org/10.1016/j.pedn.2012.06.002
  • Howlin, P. (2021). Adults with autism: Changes in understanding since DSM-111. Journal of Autism and Developmental Disorders, 51(12), 4291–4308. https://doi.org/10.1007/s10803-020-04847-z
  • Hyman, S. L., Levy, S. E., & Myers, S. M. (2020). Identification, evaluation, and management of children with autism spectrum disorder. Pediatrics, 145(1), e20193447. https://doi.org/10.1542/peds.2019-3447
  • Jackson, L., Keville, S., & Ludlow, A. K. (2020). Mothers’ experiences of accessing mental health care for their child with an autism spectrum disorder. Journal of Child and Family Studies, 29(2), 534–545. https://doi.org/10.1007/s10826-019-01662-8
  • Jones, L., Totsika, V., Hastings, R. P., & Petalas, M. A. (2013). Gender differences when parenting children with autism spectrum disorders: A multilevel modeling approach. Journal of Autism and Developmental Disorders, 43(9), 2090–2098. https://doi.org/10.1007/s10803-012-1756-9
  • Kanner, L. (1941). In defense of mothers: How to bring up children in spite of the more zealous psychologists. Charles C Thomas Publisher.
  • Kanner, L. (1942). Exoneration of the feebleminded. American Journal of Psychiatry, 99(1), 17–22. https://doi.org/10.1176/ajp.99.1.17
  • Kanner, L., Eisenberg, L. (1954). Notes on the follow-up studies of autistic children. Proceedings of the Annual Meeting of the American Psychopathological Association, 227–289.
  • Kezelman, C., Stavropoulos, P. (2012). ‘The last frontier’ – Practice guidelines for treatment of complex trauma and trauma informed care and service delivery: Adults Surviving Child Abuse. https://www.childabuseroyalcommission.gov.au/sites/default/files/IND.0521.001.0001.pdf
  • King, G., Baxter, D., Rosenbaum, P., Zwaigenbaum, L., & Bates, A. (2009). Belief systems of families of children with autism spectrum disorders or Down syndrome. Focus on Autism and Other Developmental Disabilities, 24(1), 50–64. https://doi.org/10.1177/1088357608329173
  • Kozlowska, K., Walker, P., McLean, L., & Carrive, P. (2015). Fear and the defense cascade: Clinical implications and management. Harvard Review of Psychiatry, 23(4), 263–287. https://doi.org/10.1097/HRP.0000000000000065
  • Lai, W. W., Goh, T. J., Oei, T. P. S., & Sung, M. (2015). Coping and well-being in parents of children with autism spectrum disorders (ASD). Journal of Autism and Developmental Disorders, 45(8), 2582–2593. https://doi.org/10.1007/s10803-015-2430-9
  • Lalvani, P. (2012). Parents’ participation in special education in the context of implicit educational ideologies and socioeconomic status. Education and Training in Autism and Developmental Disabilities, 47(4), 474–486. http://www.jstor.org/stable/23879640
  • Laugeson, E. A., Frankel, F., Mogil, C., & Dillon, A. R. (2009). Parent-assisted social skills training to improve friendships in teens with autism spectrum disorders. Journal of Autism and Developmental Disorders, 39(4), 596–606. https://doi.org/10.1007/s10803-008-0664-5
  • 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. https://doi.org/10.1177/1359105311422955
  • Luong, J., Yoder, M. K., & Canham, D. (2009). Southeast Asian parents raising a child with autism: A qualitative investigation of coping styles. The Journal of School Nursing, 25(3), 222–229. https://doi.org/10.1177/1059840509334365
  • Lutz, H. R., Patterson, B. J., & Klein, J. (2012). Coping with autism: A journey toward adaptation. Journal of Pediatric Nursing, 27(3), 206–213. https://doi.org/10.1016/j.pedn.2011.03.013
  • Maunder, R., & Hunter, J. (2021). Damaged: Childhood trauma, adult illness, and the need for a health care revolution. University of Toronto Press.
  • Mesibov, G. B., Shea, V., & Schopler, E. (2005). The TEACCH approach to autism spectrum disorders. Springer.
  • Nealy, C. E., O'Hare, L., Powers, J. D., & Swick, D. C. (2012). The impact of autism spectrum disorders on the family: A qualitative study of mothers’ perspectives. Journal of Family Social Work, 15(3), 187–201. https://doi.org/10.1080/10522158.2012.675624
  • Papadopoulos, D. (2021). Mothers’ experiences and challenges raising a child with autism spectrum disorder: A qualitative study. Brain Sciences, 11(3), 309. https://doi.org/10.3390/brainsci11030309
  • Park, C. C. (1967). The siege: A family's journey into the world of an autistic child. Little Brown & Co Inc.
  • Phelps, K. W., Hodgson, J. L., McCammon, S. L., & Lamson, A. L. (2009). Caring for an individual with autism disorder: A qualitative analysis. Journal of Intellectual & Developmental Disability, 34(1), 27–35. https://doi.org/10.1080/13668250802690930
  • Porges, S. W. (2001). The polyvagal theory: Phylogenetic substrates of a social nervous system. International Journal of Psychophysiology, 42(2), 123–146. https://doi.org/10.1016/S0167-8760(01)00162-3
  • Rios, C., & Costa Andrada, B. (2015). The changing face of autism in Brazil. Culture, Medicine and Psychiatry, 39(2), 213–234. https://doi.org/10.1007/s11013-015-9448-5
  • Ruiz-Robledillo, N., De Andrés-García, S., Pérez-Blasco, J., González-Bono, E., & Moya-Albiol, L. (2014). 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. https://doi.org/10.1016/j.ridd.2013.12.007
  • Sarrett, J. (2015). Is the changing definition of autism narrowing what we think of as ‘normal'? The Conversation. https://theconversation.com/is-the-changing-definition-of-autism-narrowing-what-we-think-of-as-normal-47310
  • Shtayermman, O., & Zhang, Y. (2021). Attachment style and mental health profiles of parents caring for a child with autism: Suicidal ideation, depression and anxiety. Journal of Autism and Developmental Disorders. https://doi.org/10.1007/s10803-021-05355-4
  • Siller, M., Hutman, T., & Sigman, M. (2013). A parent-mediated intervention to increase responsive parental behaviors and child communication in children with ASD: A randomized clinical trial. Journal of Autism and Developmental Disorders, 43(3), 540–555. https://doi.org/10.1007/s10803-012-1584-y
  • Silva, L. M., & Schalock, M. (2012). Autism Parenting Stress Index: Initial psychometric evidence. Journal of Autism and Developmental Disorders, 42(4), 566–574. https://doi.org/10.1007/s10803-011-1274-1
  • Silverman, C., & Brosco, J. P. (2007). Understanding autism: Parents and pediatricians in historical perspective. Archives of Pediatrics & Adolescent Medicine, 161(4), 392–398. https://doi.org/10.1001/archpedi.161.4.392
  • Smith-Young, J., Chafe, R., Audas, R., & Gustafson, D. L. (2022). “I know how to advocate": Parents’ experiences in advocating for children and youth diagnosed with autism spectrum disorder. Health Services Insights, 15, 11786329221078803. https://doi.org/10.1177/11786329221078803
  • Sousa, A. C. (2011). From refrigerator mothers to warrior‐heroes: The cultural identity transformation of mothers raising children with intellectual disabilities. Symbolic Interaction, 34(2), 220–243. https://doi.org/10.1525/si.2011.34.2.220
  • Ting, V., & Weiss, J. A. (2017). Emotion regulation and parent co-regulation in children with autism spectrum disorder. Journal of Autism and Developmental Disorders, 47(3), 680–689. https://doi.org/10.1007/s10803-016-3009-9
  • Woodgate, R. L., Ateah, C., & Secco, L. (2008). Living in a world of our own: The experience of parents who have a child with autism. Qualitative Health Research, 18(8), 1075–1083. https://doi.org/10.1177/1049732308320112
  • Wright, A. C., & Taylor, S. (2014). Advocacy by parents of young children with special needs: Activities, processes, and perceived effectiveness. Journal of Social Service Research, 40(5), 591–605. https://doi.org/10.1080/01488376.2014.896850
  • Zablotsky, B., Bradshaw, C. P., & Stuart, E. A. (2013). The association between mental health, stress, and coping supports in mothers of children with autism spectrum disorders. Journal of Autism and Developmental Disorders, 43(6), 1380–1393. https://doi.org/10.1007/s10803-012-1693-7

Reprints and Corporate Permissions

Please note: Selecting permissions does not provide access to the full text of the article, please see our help page How do I view content?

To request a reprint or corporate permissions for this article, please click on the relevant link below:

Academic Permissions

Please note: Selecting permissions does not provide access to the full text of the article, please see our help page How do I view content?

Obtain permissions instantly via Rightslink by clicking on the button below:

If you are unable to obtain permissions via Rightslink, please complete and submit this Permissions form. For more information, please visit our Permissions help page.