Abstract
One of the earliest theories about the causes of autism is that it occurs from poor parenting or more specifically from the parents’ failure to form an attachment or bond with their child in the early months of his/her life. Known as the “refrigerator mother” myth, this theory gained widespread popularity in the 1960s and led many parents and professionals to believe that parents of autistic children were negligent and responsible for their child’s autistic symptomology. This chapter will explore the origins of the “refrigerator mother” myth, unpack the current research on interactions and attachment between parents and autistic children, and assess its current impact on autistic individuals, their parents and families. In particular, the resulting stress and isolation experienced by parents will be discussed. The chapter will conclude with recommendations for making the transition from placing the blame and burden on parents for their child’s difficulties, towards creating supportive structures so that parents can build their child’s competence.
This is a preview of subscription content, log in via an institution to check access.
Access this chapter
Tax calculation will be finalised at checkout
Purchases are for personal use only
References
Abbott, M., Bernard, P., & Forge, J. (2012). Communicating a diagnosis of Autism Spectrum Disorder-a qualitative study of parents’ experiences. Clinical Child Psychology and Psychiatry, 18(3), 370–382. https://doi.org/10.1177/1359104512455813.
Argumedes, M., Lanovaz, M. J., & Larivee, S. (2018). Brief report: Impact of challenging behavior on parenting stress in mothers and fathers of children with autism spectrum disorders. Journal of Autism and Developmental Disorders. https://doi.org/10.1007/s10803-018-3513-1.
Baker, J. P. (2010). Autism in 1959: Joey the mechanical boy. Pediatrics, 125(6), 1101–1103. https://doi.org/10.1542/peds.2010-0846.
Banach, M., Iudice, J., Conway, L., & Couse, L. J. (2010). Family support and empowerment: Post autism diagnosis support group for parents. Social Work With Groups, 33, 69–83. https://doi.org/10.1080/01609510903437383.
Barnett, D., Clements, M., Kaplan-Estrin, M., & Fialka, J. (2003). Building new dreams: Supporting parents’ adaptation to their child with special needs. Infants and Young Children, 16(3), 184–200.
Bettelheim, B. (1959). Joey: A “mechanical boy”. Scientific American, 200(3), 116–120.
Bettelheim, B. (1967). The empty fortress: Infantile autism and the birth of the self. New York: Simon and Schuster.
Brown, A. S. (2012). Epidemiologic studies of exposure to prenatal infection and risk of schizophrenia and autism. Developmental Neurobiology, 72(10), 1272–1276. https://doi.org/10.1002/dneu.22024.
Bruinsma, Y., Koegel, R. L., & Koegel, L. K. (2004). Joint attention and children with autism: A review of the literature. Developmental Disabilities Research Reviews, 10(3), 169–175. https://doi.org/10.1002/mrdd.20036.
Carpenter, L., & Austin, H. (2007). Silenced, silence, silent: Motherhood in the margins. Qualitative Inquiry, 13(5), 660–674. https://doi.org/10.1177/1077800407301179.
Christensen, J., Grønborg, T. K., Sørensen, M. J., Schendel, D., Parner, E. T., Pedersen, L. H., et al. (2013). Prenatal valproate exposure and risk of autism spectrum disorders and childhood autism. JAMA, 309(16), 1696–1703. https://doi.org/10.1001/jama.2013.2270.
Clifford, T., & Minnes, P. (2013). Who participates in supportgroups for parents of children with autism spectrum disorders? The role of beliefs and coping style. Journal of Autism and Developmental Disorders, 43(1), 179–187. https://doi.org/10.1007/s10803-012-1561-5.
Corcoran, J., Berry, A., & Hill, S. (2015). The lived experience of US parents of children with autism spectrum disorders: A systematic review and meta-synthesis. Journal of Intellectual Disabilities, 19(4), 356–366. https://doi.org/10.1177/1744629515577876.
Courcy, I., & des Rivières, C. (2017). “From cause to cure”: A qualitative study on contemporary forms of mother blaming experienced by mothers of young children with autism spectrum disorder. Journal of Family Social Work, 20(3), 233–250. https://doi.org/10.1080/10522158.2017.1292184.
Dabrowska, A., & Pisula, E. (2010). Parenting stress and coping styles in mothers and fathers of pre-school children with autism and Down syndrome. Journal of Intellectual Disability Research, 54(3), 266–280. https://doi.org/10.1111/j.1365-2788.2010.01258.x.
de Alba, M. J. G., & Bodfish, J. W. (2011). Addressing parental concerns at the initial diagnosis of autism spectrum disorders. Research in Autism Spectrum Disorders, 5(1), 633–639. https://doi.org/10.1016/j.rasd.2010.07.009.
Farrugia, D. (2009). Exploring stigma: Medical knowledge and the stigmatisation of parents of children diagnosed with autism spectrum disorder. Sociology of Health & Illness, 31(7), 1011–1027. https://doi.org/10.1111/j.1467-9566.2009.01174.x.
Feinstein, A. (2011). A history of autism: Conversations with the pioneers. West Sussex, U.K.: Wiley & Sons.
Finke, E. H., Drager, K. D. R., & Ash, S. (2010). Pediatricians’ perspectives on identification and diagnosis of autism spectrum disorders. Journal of Early Childhood Research, 8(3), 254–268. https://doi.org/10.1177/1476718x10366773.
Fleischmann, A. (2004). Narratives published on the internet by parents of children with autism: What do they reveal and why is it important? Focus on Autism and Other Developmental Disabilities, 19(1), 35–43. https://doi.org/10.1177/10883576040190010501.
Fleming, B., Hurley, E., & Goth, T. (2015). Choosing autism interventions: A research-based guide. Brighton, UK: Pavilion Publishing and Media.
Freedman, B. H., Kalb, L. G., Zablotsky, B., & Stuart, E. A. (2012). Relationship status among parents of children with autism spectrum disorders: A population-based study. Journal of Autism and Developmental Disorders, 42(4), 539–548. https://doi.org/10.1007/s10803-011-1269-y.
Gau, S. S.-F., Chou, M.-C., Chiang, H.-L., Lee, J.-C., Wong, C.-C., Chou, W.-J., et al. (2012). Parental adjustment, marital relationship, and family function in families of children with autism. Research in Autism Spectrum Disorders, 6(1), 263–270. https://doi.org/10.1016/j.rasd.2011.05.007.
Gill, J., & Liamputtong, P. (2011). Being the mother of a child with Asperger’s syndrome: Women’s experiences of stigma. Health Care for Women International, 32(8), 708–722. https://doi.org/10.1080/07399332.2011.555830.
Gray, D. E. (2002). “Everybody just freezes. Everybody is just embarrassed”: Felt and enacted stigma among parents of children with high functioning autism. Sociology of Health and Illness, 24(6), 734–749. https://doi.org/10.1111/1467-9566.00316.
Greydanus, D. E., & Toledo-Pereyra, L. H. (2012). Historical perspectives on autism: Its past record of discovery and its present state of solipsism, skepticism, and sorrowful suspicion. Pediatric Clinics of North America, 59(1), 1–11. https://doi.org/10.1016/j.pcl.2011.10.004.
Hall, H. R., & Graff, J. C. (2010). Parenting challenges in families of children with autism: A pilot study. Issues in Comprehensive Pediatric Nursing, 33(4), 187–204. https://doi.org/10.3109/01460862.2010.528644.
Hallmayer, J., Cleveland, S., Torres, A., Phillips, J., Cohen, B., Torigoe, T., et al. (2011). Genetic heritability and shared environmental factors among twin pairs with autism. Archives of General Psychiatry, 68(11), 1095–1102. https://doi.org/10.1001/archgenpsychiatry.2011.76.
Happe, F., & Ronald, A. (2008). The “fractionable autism triad”: A review of evidence from behavioural, genetic, cognitive and neural research. Neuropsychology Review, 18(4), 287–304. https://doi.org/10.1007/s11065-008-9076-8.
Hassan, K., & Inam, A. (2013). Factors contributing to stress among parents of children with autism. Nurture, 7(1), 1–8.
Ho, H. S., Yi, H., Griffiths, S., Chan, D. F., & Murray, S. (2014). “Do It Yourself” in the parent-professional partnership for the assessment and diagnosis of children with autism spectrum conditions in Hong Kong: A qualitative study. Autism, 18(7), 832–844. https://doi.org/10.1177/1362361313508230.
Hurlbutt, K., & Chalmers, L. (2002). Adults with autism speak out: Perceptions of their life experiences. Focus on Autism and Other Developmental Disabilities, 17(2), 103–111. https://doi.org/10.1177/10883576020170020501.
Hutton, A. M., & Caron, S. L. (2005). Experiences of families with children with autism in rural New England. Focus on Autism and Other Developmental Disabilities, 20(3), 180–189. https://doi.org/10.1177/10883576050200030601.
Jaarsma, P., & Welin, S. (2012). Autism as a natural human variation: Reflections on the claims of the neurodiversity movement. Health Care Analysis, 20(1), 20–30. https://doi.org/10.1007/s10728-011-0169-9.
Jones, T. L., & Prinz, R. J. (2005). Potential roles of parental self-efficacy in parent and child adjustment: A review. Clinical Psychology Review, 25(3), 341–363. https://doi.org/10.1016/j.cpr.2004.12.004.
Joosten, A. V., & Safe, A. P. (2014). Management strategies of mothers of school-age children with autism: implications for practice. Australian Occupational Therapy Journal, 61(4), 249–258. https://doi.org/10.1111/1440-1630.12116.
Kanner, L. (1943). Autistic disturbances of affective contact. Nervous Child, 2(3), 217–250.
Kanner, L. (1949). Problems of nosology and psychodynamics of early infantile autism. American Journal of Orthopsychiatry, 19(3), 416–426. https://doi.org/10.1111/j.1939-0025.1949.tb05441.x.
Karst, J. S., & Van Hecke, A. V. (2012). Parent and family impact of autism spectrum disorders: A review and proposed model for intervention evaluation. Clinical Child and Family Psychology Review, 15(3), 247–277. https://doi.org/10.1007/s10567-012-0119-6.
Keen, D., Couzens, D., Muspratt, S., & Rodger, S. (2010). The effects of a parent-focused intervention for children with a recent diagnosis of autism spectrum disorder on parenting stress and competence. Research in Autism Spectrum Disorders, 4(2), 229–241. https://doi.org/10.1016/j.rasd.2009.09.009.
Keenan, M., Dillenburger, K., Doherty, A., Byrne, A., & Gallagher, S. (2010). The Experiences of parents during diagnosis and forward planning for children with autism spectrum disorder. Journal of Applied Research in Intellectual Disabilities, 23(4), 390–397. https://doi.org/10.1111/j.1468-3148.2010.00555.x.
Kinney, D. K., Miller, A. M., Crowley, D. J., Huang, E., & Gerber, E. (2008). Autism prevalence following prenatal exposure to hurricanes and tropical storms in Louisiana. Journal of Autism and Developmental Disorders, 38(3), 481–488. https://doi.org/10.1007/s10803-007-0414-0.
Kroncke, A. P., Willard, M., & Huckabee, H. (2016). What is autism? History and foundations. In Assessment of autism spectrum disorder (pp. 3–9). New York: Springer Cham.
Laidler, J. R. (2004). Through the looking glass: My involvement with autism quackery. Autism Watch. https://www.autism-watch.org/about/bio2.shtml.
Landrigan, P. J. (2010). What causes autism? Exploring the environmental contribution. Current Opinion in Pediatrics, 22(2), 219–225. https://doi.org/10.1097/MOP.0b013e328336eb9a.
Langan, M. (2011). Parental voices and controversies in autism. Disability & Society, 26(2), 193–205. https://doi.org/10.1080/09687599.2011.544059.
Lester, J. N., Karim, K., & O’Reilly, M. (2015). “Autism itself actually isn’t a disability”: Negotiating a “normal” versus “abnormal” autistic identity. Communication & Medicine, 11(2), 139–152. https://doi.org/10.1558/cam.v11i2.20371.
Ludlow, A., Skelly, C., & Rohleder, P. (2011). 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.
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.
Martins, R., Bonito, I., Andrade, A., Albuquerque, C., & Chaves, C. (2015). The impact of the diagnosis of autism in parents of children. Procedia—Social and Behavioral Sciences, 171, 121–125. https://doi.org/10.1016/j.sbspro.2015.01.097.
McDonald, M. E., Pace, D., Blue, E., & Schwartz, D. (2012). Critical issues in causation and treatment of autism: Why fads continue to flourish. Child and Family Behavior Therapy, 34(4), 290–304. https://doi.org/10.1080/07317107.2012.732849.
Mercer, J. (2013a). Holding therapy in Britain: Historical background, recent events, and ethical concerns. Adoption & Fostering, 37(2), 144–156. https://doi.org/10.1177/0308575913490498.
Mercer, J. (2013b). Holding therapy: A harmful mental health intervention. Focus on Alternative and Complementary Therapies, 18(2), 70–76. https://doi.org/10.1111/fct.12024.
Mercer, J. (2013c). International concerns about holding therapy. Research on Social Work Practice, 24(2), 188–191. https://doi.org/10.1177/1049731513497518.
Moh, T. A., & Magiati, I. (2012). Factors associated with parental stress and satisfaction during the process of diagnosis of children with autism spectrum disorders. Research in Autism Spectrum Disorders, 6(1), 293–303. https://doi.org/10.1016/j.rasd.2011.05.011.
Mohd Roffeei, S. H., Abdullah, N., & Basar, S. K. (2015). Seeking social support on Facebook for children with autism spectrum disorders (ASDs). International Journal of Medical Informatics, 84(5), 375–385. https://doi.org/10.1016/j.ijmedinf.2015.01.015.
Myers, B. J., Mackintosh, V. H., & Goin-Kochel, R. P. (2009). “My greatest joy and my greatest heart ache:” Parents’ own words on how having a child in the autism spectrum has affected their lives and their families’ lives. Research in Autism Spectrum Disorders, 3(3), 670–684. https://doi.org/10.1016/j.rasd.2009.01.004.
Neely-Barnes, S. L., Hall, H. R., Roberts, R. J., & Graff, J. C. (2011). Parenting a Child With an autism spectrum disorder: Public perceptions and parental conceptualizations. Journal of Family Social Work, 14(3), 208–225. https://doi.org/10.1080/10522158.2011.571539.
Nissenbaum, M. S., Tollefson, N., & Reese, R. M. (2002). The interpretative conference: Sharing a diagnosis of autism with families. Focus on Autism and Other Developmental Disabilities, 17(1), 30–43. https://doi.org/10.1177/108835760201700103.
Oppenheim, D., Koren-Karie, N., D’olev, S., & Yimiya, N. (2009). Maternal insightfulness and resolution of the diagnosis are associated with secure attachment in preschoolers with autism spectrum disorders. Child Development, 80(2), 519–527. https://doi.org/10.1111/j.1467-8624.2009.01276.x.
Osborne, L. A., & Reed, P. (2008). Parents’ perceptions of communication with professionals during the diagnosis of autism. Autism, 12(3), 309–324. https://doi.org/10.1177/1362361307089517.
Pellicano, E., Dinsmore, A., & Charman, T. (2014). What should autism research focus upon? Community views and priorities from the United Kingdom. Autism, 18(7), 756–770. https://doi.org/10.1177/1362361314529627.
Phetrasuwan, S., & Shandor Miles, M. (2009). Parenting stress in mothers of children with autism spectrum disorders. Journal for Specialists in Pediatric Nursing, 14(3), 157–165. https://doi.org/10.1111/j.1744-6155.2009.00188.x.
Rao, P. A., & Beidel, D. C. (2009). The impact of children with high-functioning autism on parental stress, sibling adjustment, and family functioning. Behavior Modification, 33(4), 437–451. https://doi.org/10.1177/0145445509336427.
Rimland, B. (1965). Infantile autism: The syndrome and its implications for a neural theory of behavior. London: Methuen.
Rutgers, A. H., Bakermans-Kranenburg, M. J., van IJzendoorm, M. H., & Bercklelaer-Onnes, I. A. (2004). Autism and attachment: A meta-analytic review. Journal of Child Psychology and Psychiatry, 45(6), 1123–1134. https://doi.org/10.1111/j.1469-7610.2004.t01-1-00305.x.
Ryan, S., & Cole, K. R. (2009). From advocate to activist? Mapping the experiences of mothers of children on the autism spectrum. Journal of Applied Research in Intellectual Disabilities, 22(1), 43–53. https://doi.org/10.1111/j.1468-3148.2008.00438.x.
Safe, A., Joosten, A., & Molineux, M. (2012). The experiences of mothers of children with autism: Managing multiple roles. Journal of Intellectual and Developmental Disability, 37(4), 294–302. https://doi.org/10.3109/13668250.2012.736614.
Seskin, L., Feliciano, E., Tippy, G., Yedloutschnig, R., Sossin, K. M., & Yasik, A. (2010). Attachment and autism: Parental attachment representations and relational behaviors in the parent-child dyad. Journal of Abnormal Child Psychology, 38(7), 949–960. https://doi.org/10.1007/s10802-010-9417-y.
Sharpe, D. L., & Baker, D. L. (2007). Financial issues associated with having a child with autism. Journal of Family and Economic Issues, 28(2), 247–264. https://doi.org/10.1007/s10834-007-9059-6.
Silverman, C. (2012). Understanding autism: Parents, doctors, and the history of a disorder. Princeton, NJ: Princeton University Press.
Simpson, R. L. (2005). Evidence-based practices and students with autism spectrum disorders. Focus on Autism and Other Developmental Disabilities, 20(3), 140–149. https://doi.org/10.1177/10883576050200030201.
Tehee, E., Honan, R., & Hevey, D. (2009). Factors contributing to stress in parents of individuals with autistic spectrum disorders. Journal of Applied Research in Intellectual Disabilities, 22(1), 34–42. https://doi.org/10.1111/j.1468-3148.2008.00437.x.
Thompson, G., & McFerran, K. S. (2013). “We’ve got a special connection”: Qualitative analysis of descriptions of change in the parent–child relationship by mothers of young children with autism spectrum disorder. Nordic Journal of Music Therapy, 24(1), 3–26. https://doi.org/10.1080/08098131.2013.858762.
Tick, B., Bolton, P., Happe, F., Rutter, M., & Rijsdijk, F. (2016). Heritability of autism spectrum disorders: A meta-analysis of twin studies. Journal of Child Psychology and Psychiatry, 57(5), 585–595. https://doi.org/10.1111/jcpp.12499.
Valentine, K., Rajkovic, M., Dinning, B., & Thompson, D. (2010). Occasional paper no. 35: Post-diagnosis support for children with autism spectrum disorder, their families and carers. Canberra: Research Publications Unit.
van IJzendoorn, M. H., Rutgers, A. H., Bakermans-Kranenburg, M. J., Swinkels, S. H., van Daalen, E., Dietz, C., et al. (2007). Parental sensitivity and attachment in children with autism spectrum disorder: Comparison with children with mental retardation, with language delays, and with typical development. Child Development, 78(2), 597–608. https://doi.org/10.1111/j.1467-8624.2007.01016.x.
Verhoeff, B. (2012). What is this thing called autism? A critical analysis of the tenacious search for autism’s essence. BioSocieties, 7(4), 410–432. https://doi.org/10.1057/biosoc.2012.23.
Wan, M. W., Green, J., Elsabbagh, M., Johnson, M., Charman, T., Plummer, F., et al. (2013). Quality of interaction between at-risk infants and caregiver at 12-15 months is associated with 3-year autism outcome. Journal of Child Psychology and Psychiatry, 54(7), 763–771. https://doi.org/10.1111/jcpp.12032.
Webster, A. A., & Garvis, S. (2017). The importance of critical life moments: An explorative study of successful women with autism spectrum disorder. Autism, 21(6), 670–677. https://doi.org/10.1177/1362361316677719.
Wing, L., & Gould, J. (1979). Severe impairments of social interaction and associated abnormalities in children: Epidemiology and classification. Journal of Autism and Developmental Disorders, 9(1), 11–29. https://doi.org/10.1007/BF01531288.
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.
Author information
Authors and Affiliations
Corresponding author
Rights and permissions
Copyright information
© 2018 Springer Nature Singapore Pte Ltd.
About this chapter
Cite this chapter
Bennett, M., Webster, A.A., Goodall, E., Rowland, S. (2018). Establishing Contexts for Support: Undoing the Legacy of the “Refrigerator Mother” Myth. In: Life on the Autism Spectrum. Springer, Singapore. https://doi.org/10.1007/978-981-13-3359-0_4
Download citation
DOI: https://doi.org/10.1007/978-981-13-3359-0_4
Published:
Publisher Name: Springer, Singapore
Print ISBN: 978-981-13-3358-3
Online ISBN: 978-981-13-3359-0
eBook Packages: Behavioral Science and PsychologyBehavioral Science and Psychology (R0)