Journal of Fetal Alcohol Spectrum Disorder

Message from the Editors

Kelly D. Harding, Jacqueline Pei — Wed, 21 Sep 2022 00:00:00 -0400

This special issue was created to reflect the evolving approaches to conducting and conceptualizing research in the FASD field.

Fetal Alcohol Spectrum Disorder

Wed, 21 Sep 2022 00:00:00 -0400

Background and Objective
The manner in which language is used reflects how people in a society view one another. Historically, individuals with disabilities have experienced discrimination through the use of stereotypic or demeaning language. Individuals with Fetal Alcohol Spectrum Disorder (FASD) may be particularly susceptible to these negative impacts, particularly given the stigma associated with the disability. We discuss how individuals with disabilities may be affected by our use of language.

Materials and Methods
Current definitions of FASD from Canadian provincial/territorial, national, and international governments and organizations were collated. Recent academic definitions found in the peer-reviewed literature were also reviewed. All definitions were independently coded by the two authors to identify definitions which were based upon current and emerging evidence and which included factual information about FASD. A standard definition of FASD was developed through an iterative process, including expert consultation and feedback from the larger FASD community

Results
We propose an evidence-based, lay-language standard definition of FASD to be used in a Canadian context, intended to reflect the range of strengths and challenges of individuals with FASD as well as the whole-body implications of the disability.

Conclusion
Our standard definition of FASD provides an opportunity to ensure consistency in language, increase awareness of FASD, promote dignity, and reduce stigma upon people with FASD and their families. We encourage governments, policy makers, service providers, and researchers to adopt the authors standard definition of FASD, with the goal of increasing awareness of FASD, reducing stigma, and improving communication and consistent messaging about the disability.

Nothing About Us Without Us

Wed, 21 Sep 2022 00:00:00 -0400

Background and objective
Historically, Fetal Alcohol Spectrum Disorder (FASD) research has been conducted on individuals with lived experience rather than with them. This article draws on feedback from workshops with individuals with lived experience, in which a collaborative approach was followed, drawing on patient-oriented and participatory action research methods. We provide an overview of the feedback, including barriers to participation alongside strategies to address these barriers, facilitating meaningful involvement in the research process. The writing team includes those with lived experience and research backgrounds. In addition, we make a distinction between the experience of those with FASD (what is called “in-body lived experience”) and those that have caregiver experience (what is called “in-home lived experience”). By lowering barriers, the goal is to bring in the many different perspectives of those with lived experience.

Material and methods
A keynote presentation and two workshops were held in 2018 at an international FASD conference bring-ing together individuals, families, agencies, and researchers. Participants were asked what they required to participate in FASD research more thoroughly. The goal was to understand barriers to participating in FASD research. In the first workshop (n=65), imagined for general conference participants including caregivers, service providers, policymakers, and researchers but primarily attended by caregivers and service providers, participants were asked to rank barriers through a “dotmocracy” process. Dotmocracy (or dot-voting) is a collaborative prioritization technique commonly used in group facilitation. A tally of the number of dots assigned to each barrier by participants was used to rank the importance of the barriers identified. Small groups discussed strategies to address the top 10 barriers. In the second workshop, composed of adolescents and adults with FASD (n=60), the participants were asked to share the obstacles they faced in research as a collaborator or as a research participant and their suggestions for future research area priorities.

Results
Participants in the first workshop noted core concerns, including the need for financial support, barriers to informed participation, unconscious bias of researchers, lack of a common language, lack of time and support to participate, absence of shared leadership in the research, perceived absence of benefits for participants, lack of accommodation for the unique needs of individuals with lived experience, scarcity of resources to accommodate those needs and insufficient communication on current FASD research projects. The information from individuals with FASD was similar and focused on the unique needs and barriers to fully participating in FASD research either as a collaborator or research participant. For example, participants identified the need for researchers to accommodate language comprehension differences, memory issues, anxiety, and sensory issues experienced by individuals with FASD. In addition, they identified barriers to participation such as finances, lack of transportation, insecure housing, and childcare demands. Finally, participants noted that FASD is a spectrum disorder and people on all ends of the spectrum need to have a voice.

Discussion
The workshops provided a wealth of information regarding research areas on which to focus, unique needs and barriers to participation, and their need to have a voice. Research that is attentive to each of these groups’ unique needs will allow for the inclusion of the widest group of individuals that identify as having lived experience relative to FASD. As a result, patient-oriented and participatory action research can be better represented in the field of FASD.

At a Juncture: Exploring Patterns and Trends in FASD Prevention Research from 2015 – 2021 Using the Four-Part Model of Prevention

Lindsay Wolfson, Nancy Poole, Kelly D. Harding, Julie Stinson — Wed, 21 Sep 2022 00:00:00 -0400

Background and Objective: FASD prevention efforts have been expanded in the last 25 years to go beyond the moral panic that guided early public awareness campaigns and policy responses. In Canada, a Four-Part Model of FASD Prevention has been developed and used that describes a continuum of multi-sectoral efforts for women, girls, children, and their support networks, including broad awareness campaigns, safe and respectful conversations around pregnancy and alcohol use, and holistic and wraparound support services for pregnant and postpartum women with alcohol and other health and social concerns. The purpose of this article is to describe the state of the evidence on FASD prevention from 2015 – 2021, including the prevalence and influences on alcohol use during pregnancy, interventions at each of the four levels of the Four-Part Model, as well as systemic, destigmatizing, and ethical considerations.

Materials and Methods: Using EBSCO Host, seven academic databases were annually searched for articles related to FASD prevention from 2015 – 2021. English language articles were screened for relevance to alcohol use in pregnancy and FASD prevention. Using outlined procedures for thematic analysis, the findings were categorized within the following key themes: prevalence and influences on women’s drinking; Level 1 prevention; Level 2 prevention; Level 3 prevention; Level 4 prevention; and systemic, destigmatizing, and ethical considerations.

Results: From January 2015 – December 2020 n = 532 articles were identified that addressed the prevalence and influences on alcohol use during pregnancy, interventions at each of the four levels, and systemic, destigmatizing, and ethical considerations. The most recent research on FASD prevention published in English was generated in the United States (US; n = 216, 40.6%), Canada (n = 91, 17.1%), the United Kingdom (UK; n = 60, 11.3%), and Australia (n = 58, 10.9%). However, there was an increase in studies published from other countries over the last six years. The literature heavily focused on prevalence and influences on alcohol use during pregnancy (n = 182, 34.2%), with an increase of prevalence research from countries outside of Canada, the US, Australia, and the UK, and on Level 2 prevention efforts (n = 174, 32.7%), specifically around the efficacy and implementation of brief interventions. Across Level 1 and Level 2 prevention efforts, there was an increase in literature published on the role of technology in supporting health promotion, education, screening, and brief interventions. Attention to Levels 3 and 4 demonstrated nuanced multi-service, trauma-informed, relational, and holistic approaches to supporting women and their children. However, efforts are needed to address stigma, which acted as a systemic barrier to care across each level of prevention.

Conclusion: Research and practice on FASD prevention has continued to expand. Through our generated deductive themes, this review synthesized the findings and demonstrated how the work on FASD prevention has been amplified in recent years and how efforts to support women and children’s health are complex and interconnected. The findings highlight opportunities for prevention through research and evidence-informed policy and practice.

Toward Effective Identification of FASD:

Kaitlyn McLachlan, Bianka Dunleavy, Melissa Grubb — Wed, 21 Sep 2022 00:00:00 -0400

The need to improve identification and understanding of individuals who have fetal alcohol spectrum disorder (FASD), including their strengths and challenges, is being increasingly recognized. Identification of FASD via screening is an important system-level intervention that may serve to improve early and accurate recognition of individuals who may have FASD, facilitate the provision of appropriately tailored support and interventions, and in doing so, foster healthy and positive outcomes for individuals and families. Effective and ethical implementation of FASD screening practices requires consideration of several factors for success, ensuring that resulting benefits outweigh potential harms. Using an implementation science framework, this topical review aims to provide an overview of these key considerations in order to guide further research and support practice and decision-making for service providers, organizations, and policy makers in the implementation of FASD identification and screening practices. These include prioritizing partnerships with stakeholders; taking a person-centered and ethical approach to FASD identification and screening; applying rigorous methodological research approaches to screening tool development, validation, and evaluation; increasing broader FASD awareness and response capacity at the system level; and advocating for continued policy reform and resources to enhance effective community-based support and
interventions following identification.

Psychotropic Medication Usage in Individuals with Fetal Alcohol Spectrum Disorders (FASD) and Psychiatric Co-morbidities in Canada

Wed, 21 Sep 2022 00:00:00 -0400

Background and objective
Individuals with Fetal Alcohol Spectrum Disorder (FASD) tend to be prescribed a high number of psychotropic medications to treat high rates of comorbid psychiatric disorders. A lack of guidance regarding best practices for prescribing psychotropic medications to individuals with FASD probably accounts for this reliance on polypharmacy. The objective of this study is to describe the types of medications prescribed to individuals with prenatal alcohol exposure, comparing rates between individuals diagnosed with FASD and individuals without FASD as well as how medications are prescribed based on age, sex, and comorbid psychiatric disorders.

Material and methods
Data were drawn from Canada’s national FASD database. This database includes information collected during an FASD assessment related to diagnostic outcomes, secondary challenges, and medical and mental health information. Descriptive statistics were calculated for four diagnostic groups (FASD with sentinel facial features [FASD + SFF], FASD without sentinel facial features [FASD - SFF], at risk for FASD [“at risk”], and no FASD). Group demographics were compared using Chi-Square, Fisher’s Exact Test, and ANOVA, as appropriate. Differences in the proportion of individuals between these four diagnostic groups were calculated using each of the following six classes of psychotropic medications—antipsychotics, antidepressants/anxiolytic, anticonvulsants/mood stabilizers, stimulants, melatonin, and others—using ANOVA. Considering just the individuals with FASD by combining the FASD + SFF and FASD - SFF groups, independent sample tests were used to compare differences in the proportion of males and females prescribed different medications. Chi-Square and Fisher’s Exact Test were used to compare the proportion of individuals using psychotropic medications, according to category, within the FASD group based on the presence or absence of 13 comorbid psychiatric disorders.

Results
The overall sample included 2349 participants (mean value = 18.1 years, SD = 10.3). The sample included 1453 participants with an FASD diagnosis (n = 218, FASD + SFF, mean = 23.7 years, SD = 15.8, and n = 1235, FASD - SFF, mean = 19.5 years, SD = 10.0 years) and 896 participants who were assessed but did not receive an FASD diagnosis (n = 653, no FASD, mean = 16.1 years and n = 261, “at risk” for FASD, mean = 12.2 years). The FASD groups had a significantly higher rates of anxiety disorders, depressive disorders, and the presence of at least one comorbid psychiatric disorder compared to the no FASD and the “at risk” groups. Both FASD groups had a higher proportion of individuals taking antipsychotic and antidepressant/anxiolytic medications compared to the no FASD and “at risk” groups. Females with FASD were more often prescribed antidepressants/anxiolytics compared to males with FASD, while males with FASD were more often prescribed stimulants than females with FASD. The prevalence of antidepressants/anxiolytics, stimulants, and melatonin use by individuals with FASD differed across the lifespan. The prevalence of the prescription of six medication categories was found to differ according to psychiatric disorder.

Conclusion
Compared to individuals assessed as not fulfilling criteria for FASD, those with FASD had higher rates of psychiatric disorders and were prescribed significantly more antidepressants/anxiolytics and antipsychotics. The class and rate of prescriptions may support efforts in devising treatment guidelines for a complex disorder with known high comorbidity such as FASD.

An Intersectionality-Based Policy Analysis of Canadian Child Advocate Reviews of Infants, Children and Youth with Prenatal Substance Exposure and Fetal Alcohol Spectrum Disorder in Child Welfare Care

Dorothy Badry, Lenora Marcellus, Peter Choate — Wed, 21 Sep 2022 00:00:00 -0400

Background and Objective
Care providers in the child welfare system often support children with Fetal Alcohol Spectrum Disorder (FASD). Women who give birth to children with FASD face many multi-dimensional socio-structural challenges, including prenatal substance use, that lead to their children being placed in care. Alcohol use disorders have strong associations to trauma histories, psychiatric problems, adverse experiences in life, and other substance use. Children with FASD experience abuse and neglect along with other forms of adversities in childhood and adolescence at higher rates than other children, and are often kept in the care of the child welfare system. Risks of harm for children and youth with FASD exist due to distinct vulnerabilities associated with the disability. Even with child welfare intervention, adverse outcomes remain for children and youth with FASD. Our objective was to examine reports generated from Child Advocate offices in Canada on deaths and serious injuries where FASD was identified to gain a deeper understanding of the experiences of this population in the child welfare system.

Material and methods
We employed an intersectionality-based policy analysis (IBPA) framework to analyze child welfare reports from 1989 to 2019 available online publicly from Child Advocate (or equivalent jurisdiction) Offices across Canada. An underpinning theoretical framework in this research was life course theory, as it is critical to rec-ognize the connection that exists between early decisions made for infants and children with FASD and later outcomes in life. Reports were included when there was evidence of FASD or prenatal substance exposure in the report. Sequential Excel spreadsheets were employed for data extraction, and individual word documents were generated for each report specific to the IBPA framework. Thematic analysis was employed to identify themes related to serious injuries or deaths in child and youth, report summaries, and recommendations.

Results
A total of 61 reports were reviewed, and deaths of 17 children or adolescents with FASD were reported. Four categories of reports existed, including investigative death reports, investigative serious injury reports, special reports, and annual reports. Key themes from these reports for this population included: (1) challenges to stability and permanency, (2) challenges to FASD-informed service provision, (3) over-representation of Indigenous children and youth, and (4) presence of concurrent mental health challenges. Recommendations within reports addressed needs of individuals, families, care providers, systems, and policies. There were many consistencies across time and jurisdictions. One notable concern was that FASD, while possible, was often not diagnosed, and therefore supports and services specific to this disability were not provided. It is critical to note that these reports served to document both a child’s history and make key policy and practice recommendations to inform a differential response in the child welfare system in the case of FASD.

Conclusion
This analysis illuminated the risks and vulnerabilities for this population in the child welfare system and has implications for assessment, diagnosis, and practice interventions in responding to the needs of this population. This analysis also identified that many opportunities exist to improve practice and service delivery for individuals with FASD and their families. It is critical to recognize that a connection exists between early decisions made for infants and children with FASD and later outcomes in life.

Longitudinal Evaluation of Mathematics Achievement in Children and Adolescents with FASD

Kathleen Kennedy, Jacqueline Pei, Gail Andrew, Carmen Rasmussen — Wed, 21 Sep 2022 00:00:00 -0400

Background and Objectives
Mathematics achievement as a particular area of difficulty for individuals with fetal alcohol spectrum disorder (FASD) has been a robust finding in the literature. However, existing longitudinal data are outdated and do not consider mathematics performance across time during critical periods of transition such as adolescence. Longitudinal data on the developmental trajectory of mathematics and factors that may influence outcomes can inform the development of effective educational intervention strategies for youth with prenatal alcohol exposure (PAE)/FASD to promote academic success in the area of mathematics. In the present study, we aimed to add to the existing literature through the examination of mathematics performance at two time-points at both the group and individual levels. We also examined the impact of various demographic and environmental factors on mathematics skills over time.

Materials and Methods
Fifteen children and youth with PAE/FASD were assessed at time 1 (M age = 13.0 years, range 9–17 years), and at time 2 approximately 5 years later (M age = 18.5 years, range 15–23 years) using a standardized measure of math achievement.

Results
At the group level, mean normative math achievement scores significantly decreased over time. At the indi-vidual level, reliable change indices indicated that 13.3% (n = 2) of participants’ scores demonstrated clin-ically significant change across time. No demographic or environmental factor variables were correlated with changes in scores across time.

Conclusion
With recognition that the results need to be considered in the context of the limited power and generalizability that our small sample size offers, our results highlight the importance of considering both group and individual change. Without such information, there is the potential to overgeneralize the extent to which mathematics scores for individuals with PAE/FASD are decreasing across time. Our descriptive findings acknowledge the critical need for adolescent mathematics interventions which consider the complexity and diversity of the deficits present in PAE/FASD because existing services may be buffering some difficulties in the area of mathematics, but are not necessarily promoting longer-term impacts.

“You Don’t Want to Drink? What Are You, Pregnant?!”

Kelly Harding, Alexandre Dionne, Eric Harding — Wed, 21 Sep 2022 00:00:00 -0400

Background and objective
Pregnant women, women of childbearing age, and their partners frequently report obtaining information about alcohol use during pregnancy from the mass media. Relying on mainstream media sources, such as television, can be problematic when the information presented is inaccurate, contributing to inconsistent messaging about the ‘safety’ of alcohol use during pregnancy. In the current study, we aimed to explore the portrayal of alcohol (and substance) use (e.g., tobacco, opioids) during pregnancy in North American, English speaking mainstream prime time and streaming television shows (N = 25). To the authors’ knowledge, no previous study has explored the representations of alcohol (and/or substance use) during pregnancy in this context.

Materials and methods
The following inclusion criteria guided the show selection: (1) top 100 shows on cable/streaming services targeting women aged 18 to 49 years, and (2) shows suggested by targeted social media posts. Using ethno-graphic content analysis (ECA), the content and role of television media narratives in the social construc-tion of alcohol meanings concerning the safety of alcohol use during pregnancy were explored.

Results and conclusion
In line with ECA, the results and conclusion are discussed together. The results and discussion are presented under an overarching narrative, the dichotomy of women’s alcohol and substance use, which illustrates the sociocultural construction of alcohol and substance use during pregnancy. Within this overarching narrative, we focus on two sub-narratives: (1) women’s acceptable use and (2) women’s villainous use. Our analysis indicates misrepresentations regarding the safety of alcohol use during conception (e.g., Friends from College) and pregnancy (e.g., How I Met Your Mother, The Mindy Project). In addition, a narrative was identified relating to the difficulty of keeping a pregnancy private when not drinking socially (e.g., Friends, The Office). These narratives reinforced a dichotomy between the types of women who drink during pregnancy, including some for whom it was okay to have ‘just a little bit’ (e.g., How I Met Your Mother, The Big Bang Theory, Black Mirror) in contrast to others who were portrayed as villains who engaged in binge drinking behaviour and/or other comorbid substance use (e.g., Grey’s Anatomy, Private Practice, Chicago Med, Law & Order). These results demonstrate the need to provide a clear, consistent messaging about the risks of alcohol use during pregnancy, as mixed messages from television can contribute to misinformation. The recommendations for messaging, as well as changing our approaches to fetal alcohol spectrum disorder prevention in the light of these findings are discussed.

What If? Incorporating the Voices of Those with Lived Experience to Change the Focus of Fetal Alcohol Spectrum Disorder Research

Dorothy Reid, Wanda Beland, Lauren Richardson, Katherine Flannigan — Wed, 21 Sep 2022 00:00:00 -0400

How would our understanding of fetal alcohol spectrum disorder (FASD) be different if FASD research was done in collaboration with individuals with lived experience? We speculate that there would be a better balance between basic science and applied research, focusing on effective interventions and strengths. As members of the Canada FASD Research Network Family Advisory Committee and the Adult FASD Expert Collaboration Team, we provide lived experience perspectives on FASD research and assist in knowledge translation of research results. This article, written by individuals with both in-home and in-body lived experience, in collaboration with researchers, explore the importance and unique contributions of partic-ipatory approaches in broadening and shifting the focus of FASD research. We use the term “in-body” to describe the experience of individuals with FASD, and the term “in-home” refers to the experience of those who live with individuals with FASD such as caregivers, siblings, and spouses. The collaboration between researchers and people with lived experience has not only expanded the scope of FASD research, but has also helped to disseminate the information obtained through research into the hands of those who need it most: individuals with FASD and their caregivers, frontline service providers, and FASD policy makers. We believe that participatory research with individuals with lived experience will lead to the development of more effective intervention strategies, encourage strengths and resilience, and facilitate better outcomes and an enhanced feeling of support from the FASD research community for individuals living with FASD. This will, in turn, identify successes and reduce stigmatization for individuals with FASD and their caregivers.

Towards Healthy Outcomes for Individuals with FASD

Vannesa Joly, Kelly Harding, Jacqueline Pei — Wed, 21 Sep 2022 00:00:00 -0400

Background and objective
Individuals with Fetal Alcohol Spectrum Disorder (FASD) may experience a range of behavioral, cognitive, and physiological difficulties that can result from prenatal alcohol exposure. Intervention approaches for individuals with FASD are required to respond to evolving strengths and needs throughout their lifespan.

Material and methods
In response to these evolving unique needs, best practices were developed by integrating current research findings with the experiences of individuals with FASD and their caregivers. The “Towards Healthy Outcomes” approach has been developed to provide an evidence-informed framework to support intervention for individuals with FASD throughout their lifespan.

Results
This framework was developed based on core philosophies that create opportunities for individualized intervention support, including development throughout the lifespan, impact of interacting systems, and a strengths-based approach. These underlying philosophies and core beliefs are actioned throughout the lifespan around the following 12 domains: (1) physical health; (2) attachment; (3) family cohesion; (4) social functioning; (5) mental health and regulation; (6) education; (7) identity development; (8) community engagement; (9) adaptive skills; (10) housing; (11) employment; and (12) parenting skills. To establish its potential use, each of these domains is considered broadly within the context of FASD field, including the new ideas put forward by the studies included in this issue.

Conclusion
The “Towards Healthy Outcomes” framework is an intervention approach that facilitates proactive and evidence-informed approaches to foster the development of individuals with FASD. It provides developmental considerations that are specific to the 12 domains and reflect the whole person. Furthermore, the “Towards Healthy Outcomes” framework allows for the integration of research with the lived experiences of caregivers and individuals with FASD that bridges existing research gaps.