PNAT: The Experience of Mothers of Children with FASD

The Prevention Network Action Team (pNAT) recently had an inquiry from an ally about what research is available that informs us about the experience of mothers whose children have been diagnosed with a FASD (sometimes called “birth” mothers). While three researchers associated with the pNAT have undertaken research with mothers for their Master’s or PhD theses (Dr. Amy Salmon, Dr. Dorothy Badry and Dr. Kelly Coons-Harding) we realize that this is a significant gap in the available published research!

We have relied (and will continue to rely!) on the wisdom of mothers who have presented with us at FASD conferences, people such as Pip Williams (UK), Elizabeth Russell (AU), Lisa Lawley and Janet Christie (CA) and Kathy Mitchell (US). Their courageous and thoughtful work as addiction coaches, spokespersons and organizers of networks has contributed so much to our understanding of the issues they have faced, and to the benefits of peer support for mothers who deserve such wise and kind mentors. 

In addition to the wisdom of mothers, to answer the request for information, we gathered – see the list below – the academic literature specifically about biological mothers of children with FASD, and welcome readers to send us further links. Here are a few key ideas that emerge from these articles.

  • Stigmatizing attitudes prevail – Mothers who have been interviewed by researchers describe societal and service provider ignorance about FASD, and harsh judgements directed to women who drink in pregnancy.  This perpetuates the reluctance of women to access support. When mothers do access care for themselves and their children, they report additional unintended stigma from physicians and diagnostic teams.
  • Addiction and other overwhelming influences – Most often in the studies, mothers describe having a family history of alcohol problems and/or mental illness, addiction problems themselves and histories of intimate partner violence. And they note that services which are welcoming, non-judgemental and integrate support on trauma/violence, substance use/addiction and women’s/maternal health are not usually readily available.
  • Transformation – Some women described that having a child with FASD gave them a reason to stay sober and in effect saved them from a life of addiction and possible death. In essence, it caused a major shift to a recovery trajectory for them.  A part of the transformation is empowerment related to knowing they are helping to break the generational cycle of trauma and addiction in their family. The courage and ongoing effort involved, and the external challenges encountered related to recovery, stigma and parenting a child with FASD are formidable.
  • Adapting to motherhood and becoming advocates – The journey of becoming a mother, addressing an addiction problem, and raising a child with a disability is a very special path. Often mothers noted that they shifted gears to be the best advocate they can be for their child, and to become advocates on the issue to help other women by increasing awareness of FASD, and of how mothers can and do make adaptations and become advocates.

Studies about the perspectives of mothers who have given birth to a child with FASD

Badry, D.E. (2008), “Becoming a birth mother of a child with fetal alcohol syndrome”. Dissertation

Stewart, M., Lawley, L., Tambout, R., & Johnson, A. (2018). Listening in a Settler State: (Birth) Mothers as Paraprofessionals in a Response to FASD. In D. Badry, H. Montgomery, D. Kikulwe, M. Bennett, & D. Fuchs (Eds.), Imagining Child Welfare in the Spirit of Reconciliation: Voices from the Prairies (pp. 117-138): University of Regina Press.

Salmon, J. (2008). FASD: New Zealand Birth Mothers’ Experiences. Canadian Journal of Clinical Pharmacology, 15(2), e191-213. 

Thomas, R., & Mukherjee, R. (2019). Exploring the experiences of birth mothers whose children have been diagnosed with fetal alcohol spectrum disorders: a qualitative study. Advances in Dual Diagnosis, 12(1/2), 27-35. doi:10.1108/ADD-10-2018-0014

Studies about mothers of children with FASD (birth, foster, adoptive), societal attitudes and research engagement

Salmon, A. (2007). Walking the talk: how participatory interview methods can democratize research. Qual Health Res, 17(7), 982-993. doi:10.1177/1049732307305250

Coons, K. D., Watson, S. L., Schinke, R. J., & Yantzi, N. M. (2016). Adaptation in families raising children with fetal alcohol spectrum disorder. Part I: What has helped. Journal of Intellectual & Developmental Disability, 41(2), 150-165. doi:10.3109/13668250.2016.1156659

Corrigan, P. W., Lara, J. L., Shah, B. B., Mitchell, K. T., Simmes, D., & Jones, K. L. (2017). The Public Stigma of Birth Mothers of Children with Fetal Alcohol Spectrum Disorders. Alcohol Clin Exp Res, 41(6), 1166-1173. doi:10.1111/acer.13381

Shahram, S. Z., Bottorff, J. L., Kurtz, D. L., Oelke, N. D., Thomas, V., & Spittal, P. M. (2017). Understanding the Life Histories of Pregnant-Involved Young Aboriginal Women with Substance Use Experiences in Three Canadian Cities. Qual Health Res, 27(2), 249-259. doi:10.1177/1049732316657812

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