My Path into Research on and Advocacy of FASD

My Path into Research on and Advocacy of FASD 
​Adrienne Peters, PhD

Fetal alcohol spectrum disorder (FASD) was first introduced to me as a young person growing up in Newfoundland and Labrador.  In over 25 years, however, I have discovered that FASD is still not a part of our common language or discussions today, and perhaps more alarmingly, it is not a noticeable part of our discussions around health and well-being, particularly when someone(s) is/are thinking about becoming or is pregnant.  ​

I received a very introductory overview of fetal alcohol spectrum disorder (then known/understood as FAS) by chance when my mother, an educator, had obtained information about FASD to support a young person in her class.  My mum did her best to sensitively explain to me (and herself) the complexity of pregnancy and the possible challenges that could arise if a developing fetus were exposed to certain environmental elements.  There was emphasis unfortunately, but expectantly at that time, on some of the “signs” of FASD that included the once prominently emphasized facial features, which we now know occur in only a very small percentage of those impacted by FASD and do not reflect its severity.  To this day, I remember feeling very mixed emotions upon learning all of this, from sadness and confusion to curiosity and hope. 
 
These feelings were very warranted then and remain warranted today.  And the curiosity around the lack of available resources, combined with my interest in the adversarial nature of our “criminal justice” system, led to my current work building capacity and advocating for the recognition and support of FASD, neurodiversity, as well as health, well-being, and substance use needs more broadly, in the justice system. 
 
Research is being done in Canada and around the world to better understand FASD and its prevalence.  While still acknowledging the vast un-/under-/mis-diagnosis of FASD, research suggests that approximately 4% of the general population has FASD (Popova et al., 2019), with higher estimated prevalence rates found among certain groups, including children involved in the social welfare/foster care system and individuals in the justice system (Popova et al., 2011; Popova et al., 2019).  My youth justice research from Western Canada, for example, has shown that FASD is significantly overrepresented within certain community-based youth justice populations, with 12 to 46 percent of youth on “high needs/specialist” probation caseloads having FASD (Peters, 2017, 2018). Once an individual with FASD becomes involved in the justice system, they are also more likely to have continued involvement in this system through a process of repeated administrative/conditional breaches and new, often minor, charges (Peters & Winsor, 2017, in preparation). This can all be attributed to a combination of several factors, including some of the unique challenges these young people experience in their daily lives, such as being drawn to and engaging in impulsive exploits and decision-making; not foreseeing the outcomes of actions and not linking actions to consequences; being easily led by/a follower of others while trying to “fit in”; the over-policing/over-surveillance of individuals and behaviours perceived to be “high risk” that are often part of neurodiversity/being neurodiverse; and several other systemic and environmental factors that contribute to misunderstanding of the law(s) and/or legal processes and expectations (Peters & Winsor, 2017). Another obstacle for individuals with FASD to overcome within the justice system, which is as important and as pronounced, is the limited familiarity and experience of and resources for legal/justice system personnel and professionals related to FASD (Winsor, 2018).
 
An important point to emphasize, however, is that pregnancy, alcohol use, addiction, and thus in effect, FASD, occur among all age groups, all socio-demographic backgrounds, all cultures and religions, all educational/vocational/professional levels and groups, all experiences, subcultures, communities, and societies.  
 
 
So, where do we begin?  Much of my present research and advocacy work related to fetal alcohol spectrum disorder is examining how FASD is understood by and impacts individuals with lived experiences, parents/caregivers, and various professional persons/groups in the province of Newfoundland and Labrador.  This is part of fasdNL’s ongoing Mitacs-funded NL FASD Needs Assessment (supported as well by the Government of Newfoundland and Labrador, Department of Health and Community Services).  I am also looking at the experiences and supports/supervision of youth on probation in the justice system to understand how FASD uniquely impacts these experiences, from initial contact/entry into this system and then once within the system.  This research was referenced above with further investigation and analyses taking place this summer.
 
Based on my work thus far, it is evident that in the absence of adequate awareness and training about FASD/neurodiversity, our institutions and the support networks within them do not always offer safe spaces for individuals seeking support.  Due to deeply entrenched and often unconsciously embedded structural and social stigmas, healthcare, social work, educational, legal/criminal justice, and other professionals may (inadvertently) use language, both verbal and non-verbal, that can evoke feelings of judgment and shame in persons/families impacted by FASD.  They may also rely on once commonly-accepted practices that lack a patient-/family-centred and trauma-informed focus, or that overlook the principles of harm reduction.  This may result in individuals feeling silenced when accessing services, which can result in heightened fears that prevent persons from seeking further assistance or resources on their own.  They may instead feel a need to protect themselves by avoiding making use of some of the very services and organizations that were intended to support them.  Known as “system avoidance” (Brayne, 2014), this can occur due to feelings of being judged and stigmatized and/or having developed mistrust in and concerns about how/why certain information about them is being collected and used by the organization (and/or others). Various system players may then feel the need to step in to make decisions about the family’s needs, rather than working collaboratively with the family, after first (re-)instilling feelings of trust, safety, and supportiveness. 
 
Canada fortunately, unlike some parts of the United States (see Subbaraman & Roberts, 2019), does not have legislation that criminalizes substance use while pregnant.  Still there is much more work to do in breaking down stigma and barriers to care for individuals impacted by FASD.  Primary healthcare providers (e.g., physicians, nurses), other healthcare professionals (e.g., psychologists, SLPs, OTs, PTs), and social workers, play a significant role in not only identifying, referring for, and assessing FASD, but also in first ensuring patients/clients feel comfortable speaking with and potentially confiding in them.  These professionals, and later educators, play a central role in talking to families/units about their diverse (e.g., social, health, cultural, educational/vocational, financial, spiritual) needs, so as to prevent the potential involvement of child protection services and/or responses from law enforcement, by providing adequate and appropriate health and educational supports early.  
 
Professionals should therefore be highly skilled in and respectful of ensuring confidential, empathetic communication in all of their interactions to encourage a safe and welcoming environment in which women and families feel comfortable responding to clear questions about their health, which for any patient, should always include open and honest conversations about alcohol and other substance use (before, during, and after pregnancy with families; and ongoing for any individuals with noted substance use concerns/needs).  
 
Our healthcare systems should recognize and celebrate the immense role they play in individual and community health by adequately preparing and supporting their employees, so that they can effectively provide appropriate care to individuals and families while not denouncing or labelling anyone, and not reporting cases involving more complex social matters to social/law enforcement services.
 
Our police organizations and larger justice system (and society) should stop criminalizing certain behaviours and setbacks that are very human experiences and may be more pronounced among individuals who are neurodiverse.  This can be accomplished by first limiting the justice system’s application and enforcement of unrealistic conditions.  Rather than protecting the public or supporting the individual in their rehabilitation, court-imposed conditions often instead lead to repeated “breaches,” return to court, and oftentimes a return/stay in custody/jail for the individual, despite them posing no true risk/threat to society.  
 
We can all begin opening the conversation around alcohol and other substance use, addiction, and family/community/public health and well-being to encourage enhanced understanding, prevention, and supports around these themes, including FASD and other substance/health-related needs.  As part of this discussion, we should ensure we are using non-judgmental language and strengths-based, harm reduction approaches to addiction and health.
 
Critical resources should also outline and use non-judgmental, non-stigmatizing communication, approaches, and responses, and include the voices of individuals with lived experience.  
Please check out some of our ongoing work at fasdNL and our latest resources with information about and contact info for some of our partner / related community organizations in NL. 
 
fasdNL
http://www.fasdnl.ca/what-we-do.html
http://www.fasdnl.ca/prevention.html
http://www.fasdnl.ca/research.htmlFacebook: https://www.facebook.com/fasdnl
Twitter: @FASDNL
Instagram: @fasdNL
 
 
Managed Alcohol Program (The St. John’s Status of Women Council; @SJSOWC): A harm reduction approach for women and nonbinary people in St. John’s who drink. 
Email: becky@sjwomenscentre.ca
Phone: 709.725.8700
 
Planned Parenthood is a non-profit, pro-choice sexual health centre that promotes  positive sexual health and 2SLGBTQIA+ inclusion through education, community  partnership, information and services within an environment  that  supports and respects individual choice. 
Website: https://www.plannedparenthoodnlshc.com/  
Phone: 709.579.1009
 
Momma Moments (Choices for Youth; @choicesforyouth) groups meet once a week for programming that emphasises overall wellness – mental, physical, spiritual, and social – for both mother and child. 
Website: https://www.choicesforyouth.ca/family
Phone: 709.754.0446
 
Right Here, Right Now counselling is a drop-in counselling program that provides single session therapy to women and non-binary people (18 and over) in the St. John’s area about anything at all that is impacting their lives.  
Website: https://sjwomenscentre.ca/2016/09/21/right-right-now-drop-counseling-program-women/
Phone: 709.753.0220
 
Lifewise (formerly CHANNEL) offers a Warmline, which people can call into for a safe (confidential and anonymous) space to talk and ask questions. Lifewise is the only provincial organization in Newfoundland & Labrador created by and for individuals living with mental health and addictions issues. 
Website: https://lifewisenl.ca/
Phone: 1.855.753.2560 (EN) ; 1.833.753.5460 (FR)
 
Perinatal Mental Health Alliance Newfoundland and Labrador (PMHANL) is a community group dedicated to providing better health care and supports for parents, infants/children, and families, to enhance mothers’/families’ mental health around the perinatal period, just before and after birth. 
Website: https://www.pmhanl.com/
Email: pmhanlconnect@gmail.com
 
 
ReferencesBrayne, A. (2014). Surveillance and system avoidance: Criminal justice contact and institutional attachment. American Sociological Review, 79(3) 367–391. 10.1177/0003122414530398
 
Peters, A. (2017, March). FASD and the criminal and juvenile justice system:  Major new insights and developments in Canada, New Zealand and the United States. Invited panel participant at the 7th International Conference on Fetal Alcohol Spectrum Disorder, Vancouver, BC, Canada.
 
Peters, A. M. F., & Corrado, R. (2019, November). Youth probationer risk profiles and supervision practices.  Paper presented at the Canadian Congress on Criminal Justice, The Canadian Criminal Justice Association 100th Anniversary, Quebec City, QC, Canada.
 
Peters, A., & Winsor, K. (in preparation). The cumulative impact of socio-demographic factors, psychological health, and FASD on re-conviction in a sample of youth on probation.
 
Popova, S., Lange, S., Bekmuradov, D., Mihic, A., & Rehm, J. (2011). Fetal alcohol spectrum disorder prevalence estimates in correctional systems: A systematic literature review. Canadian Journal of Public Health, 102, 336-340.
 
Popova, S., Lange, S., Shield, K., Burd, L., & Rehm, J. (2019). Prevalence of fetal alcohol spectrum disorder among special subpopulations: A systematic review and meta-analysis. Addiction, 114(7), 1150-1172.
 
Subbaraman, M. S., & Roberts, S. C. M. (2019). Costs associated with policies regarding alcohol use during pregnancy: Results from 1972-2015 Vital Statistics. PLOS ONE. https://doi.org/10.1371/journal.pone.0215670
 
Winsor, K. J. D. (2018). “If we get beyond the stereotype”: Professionals' experiences attending to FASD, social supports and stigma in Newfoundland and Labrador. [Masters thesis]. Memorial University of Newfoundland and Labrador.