Commentary

By Nivetha Chandran

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Earlier this year, a new workshop emphasizing disability accommodation rather than the usual practice of behaviour correction for people living with Fetal Alcohol Spectrum Disorder (FASD) was introduced in Yellowknife, Northwest Territories, Canada (1).

This workshop, with over 150 attendees, focused on recognizing the day-to-day barriers faced by people with FASD and sought to address and account for the needs of this group (1). The fundamental shift in understanding (i.e., from behaviour correction to disability accommodation) is one step towards a barrier-free society for people with FASD.

However, more needs to be done to diminish barriers for Canadians living with FASD. This article provides education on FASD and recommendations to reduce the barriers encountered by these individuals, and specifically, for Canadian children living with FASD.

What Is Fetal Alcohol Spectrum Disorder (FASD)?  

Fetal Alcohol Spectrum Disorder is a group of conditions that occur when a mother consumes alcohol during pregnancy (2). Different terms are used to describe FASD based on the type of symptoms; these terms include Fetal Alcohol Syndrome, Alcohol-Related Neurodevelopmental Disorder, Alcohol-Related Birth Defects, and Neurobehavioral Disorder Associated with Prenatal Alcohol Exposure (3). The estimated number of people globally living with FASD is 14.6 per 100 000 people (4). In Canada, the prevalence of FASD ranges from 1.4–4.4% of the general population (5).

Some FASD symptoms include those related to: (a) physical deficits, such as distinctive facial features including small eyes, thin lips; (b) brain and central nervous system problems, such as trouble with attention and processing information; and (c) social and behavioural issues, such as difficulty with planning or working toward a goal and difficulties with cognitive and emotional functions (3).

Cognitive-based difficulties include following daily routines and trouble with subjects like mathematics and memory-based tasks (6,7). Emotion-related difficulties include acting before thinking and challenges with interpersonal relationships (7,8).

There is no cure for FASD; there is no way to reverse the effect alcohol had on a child’s development. However, studies show that early interventions in children can reduce the effects of FASD (3,9). Despite this promising evidence, people living with FASD face many barriers leading to negative experiences.

Recommendations to Diminish Barriers 

Interventions and programs can be created and improved for children living with FASD. Through the development of FASD programs and frameworks in education systems, such as the one mandated in Manitoba, educators and parents will have guidance on supporting and assisting children with FASD to achieve high distinction in schools (10). With better academic performance, these children can have a more positive trajectory regarding their education and self-esteem (11,12). Additionally, pairing FASD programs with mental health support can reduce the mental health burden experienced by children with FASD.

Another recommendation is to increase awareness through civic engagement regarding FASD since lack of FASD awareness is a major barrier faced by children with FASD. The first step is to generate a foundational understanding of FASD in the general population. This awareness-raising could be done through initiatives like the Bell Let’s Talk campaign, as 87% of Canadians feel more educated about mental illness since it was initiated (13,14).

The next step would be to increase education and training for professionals who work with children with FASD. The focus can be to address primary interactions between professionals and those affected by FASD, where stigma is explicit towards children with FASD and their caregivers. Through active dialogue among children, caregivers, educators, and healthcare professionals, there is the possibility to reduce barriers—especially stigma (13).

Finally, Canada will need to enact structural-level changes to reduce barriers regarding FASD. Policy-level changes have been at work for several years. In Canada, focus has been on increasing awareness, diagnostic and preventative capacity, knowledge synthesis of research evidence, and support for people living with FASD (15). Although FASD costs the government around $5.3 billion annually, there is still a lack of action toward outlined goals (16).

With appropriate policy level changes, people with FASD can integrate more fully into society. Through the creation of programs that allow employment opportunities for people living with FASD and other disabilities, the Canadian government can address job security, social inclusion, and access to rehabilitation services. Most importantly, the inclusion into society of people living with FASD will play a significant role in reducing stigma.

Most importantly, the inclusion into society of people living with FASD will play a significant role in reducing stigma.

Returning to the recent FASD workshop in Yellowknife, it is encouraging to see a paradigm shift towards accommodating people living with FASD. The purpose of the workshop was to reduce barriers by creating awareness and supporting people with FASD, which on a larger scale has the potential to reduce stigma.

Until then, the question remains: how long until FASD enters our mainstream consciousness like other mental illnesses have, and how can we work towards making this goal a reality?

Acknowledgements

Featured illustration by Cassie Hillock-Watling for rehabINK.

To refer to this article, it can be cited as:

Chandran, N. Diminishing barriers for Canadians living with fetal alcohol spectrum disorder. rehabINK 2020:9. Available from https://rehabinkmag.com

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References

1. Strong W. New approach to FASD in N.W.T. focuses on accommodation, not behaviour [Internet]. Toronto, Canada: CBC News; 2020 Mar 6. Available from: https://www.cbc.ca/news/canada/north/new-approach-fasd-nwt-1.5487851 
2. Fetal alcohol spectrum disorders (FASD) [Internet]. Toronto, Canada: CAMH (Centre for Addiction and Mental Health); 2020. Available from: https://www.camh.ca/en/health-info/mental-illness-and-addiction-index/fetal-alcohol-spectrum-disorder
3. Basics about FASDs [Internet]. USA: Centers for Disease Control and Prevention; 2020 May 7. Available from: https://www.cdc.gov/ncbddd/fasd/facts.html
4. Popova S, Lange S, Probst C, Gmel G, Rehm J. Estimation of national, regional, and global prevalence of alcohol use during pregnancy and fetal alcohol syndrome: a systematic review and meta-analysis. The Lancet Global Health. 2017;5(3):e290-9.
5. Flannigan K, Unsworth K, Harding KD. The prevalence of fetal alcohol spectrum disorder. CanFASD Issue Paper. Canada FASD Research Network. 2018 Jul.
6. Kalberg WO, Buckley D. FASD: what types of intervention and rehabilitation are useful? Neuroscience and Biobehavioral Reviews. 2007;31(2):278-85.
7. Petrenko CL, Alto ME. Interventions in fetal alcohol spectrum disorders: an international perspective. European Journal of Medical Genetics. 2017;60(1):79-91.
8. Masotti P, Longstaffe S, Gammon H, Isbister J, Maxwell B, Hanlon-Dearman A. Integrating care for individuals with FASD: results from a multi-stakeholder symposium. BMC Health Services Research. 2015;15(1):457.
9. Olson HC, Montague RA. An innovative look at early intervention for children affected by prenatal alcohol exposure. In: Adubato SA, Cohen DE, editors. Prenatal alcohol use and FASD: assessment and new directions in research and multimodal treatment. Sharjah: Bentham Science Publishers; 2011. p. 64-107.
10. What educators need to know about FASD: Working together to educate children in Manitoba with fetal alcohol spectrum disorder [Internet]. Healthy Child Manitoba; 2018. Available from: https://www.gov.mb.ca/healthychild/fasd/fasdeducators_en.pdf
11. Bell E, Andrew G, Di Pietro N, Chudley AE, Reynolds JN, Racine E. It’s a shame! Stigma against fetal alcohol spectrum disorder: examining the ethical implications for public health practices and policies. Public Health Ethics. 2016;9(1):65-77.
12. Support for fetal alcohol spectrum disorder (FASD) [Internet]. Government of Canada, Public Health Agency of Canada; 2017 Jun 28. Available from: https://www.canada.ca/en/public-health/services/diseases/fetal-alcohol-spectrum-disorder/support.html
13. Green CR, Cook JL, Racine E, Bell E. Stigma, discrimination and fetal alcohol spectrum disorder. CanFASD Issue Paper. Canada FASD Research Network. 2016.
14. Results and impact: Bell Let’s Talk [Internet]. Bell Canada; 2020. Available from: https://letstalk.bell.ca/en/results-impact/
15. Fetal alcohol spectrum disorder (FASD): A framework for action [Internet]. Ottawa, Canada: Public Health Agency of Canada; 2005. Available from: https://www.canada.ca/content/dam/phac-aspc/migration/phac-aspc/publicat/fasd-fw-etcaf-ca/pdf/fasd-fw_e.pdf
16. Jones M, Graham K, Moore Hepburn C. 33: Mapping the Canadian policy landscape of fetal alcohol spectrum disorder: a national scan of government strategies. Paediatrics and Child Health. 2015;20(5):e45.