BACKGROUND:Caregivers of individuals with fetal alcohol spectrum disorder (FASD) experience unique challenges, stressors, and strengths, and there is growing understanding of the needs of these caregivers. However, less is known about how the broader caregiver context, including sociodemographic and ecological factors, may be associated with well-being. METHODS:Data for this study were collected between 2021 and 2025, gathered at baseline as part of an ongoing international longitudinal survey about caregiver experiences and perspectives of raising people with FASD (N = 234). Information on sociodemographic factors, family characteristics, and caregiver well-being was analyzed. RESULTS:Participants predominantly identified as women (95%) and had a mean age of 54 years (range 26-82); most (69%) were adoptive caregivers of children and adults with FASD and 67% were living in Canada. Family structure and composition varied across participants, and many caregivers reported financial challenges. Overall, caregivers reported high levels of stress and limited social support, along with strengths in their relationships with spouses/partners and relatives. Self-reported well-being was highest among parents who were retired, did not experience employment disruptions because of parenting responsibilities, cared for adults (as opposed to young children) with FASD, and had only one (as opposed to multiple) dependent(s) with FASD. CONCLUSIONS:This study provides insight into broad contextual factors (i.e., employment status, life stage) that may influence well-being among caregivers of people with FASD. Understanding these factors can lead to more tailored and effective responses, interventions, and policies that support stability and thriving among caregivers, families, and communities of people with FASD.

BACKGROUND:We address the question: If you wanted to start a fetal alcohol spectrum disorder (FASD) diagnostic clinic, what would you need to do, think about, and plan for, from a policy perspective? Our aims were to understand how clinics are developed and established and the key factors that facilitate their success. METHOD:Within a pragmatist epistemology, we conducted a basic qualitative study using semistructured interviews. Interviews were conducted with 12 key informants from 10 diagnostic clinics. Data were analysed using iterative thematic analysis. RESULTS:We derived five themes pertaining to our objectives: (i) listening and responding to your community; (ii) community buy-in and practical steps; (iii) multidisciplinary team trust, respect, and collaboration; (iv) the clinic coordinator; and (v) promoting uniqueness and learning from each other. CONCLUSIONS:Our findings demonstrated the importance of local, community-based planning, team cohesion, and opportunities for mentorship in the development of new FASD clinical services.

BackgroundThe Canadian fetal alcohol spectrum disorder (FASD) diagnostic guideline provides clinicians with the process and procedure to reach an accurate diagnosis. However, organisational structure, culture, and resource utilisation vary. The objectives of this study were to identify the key challenges and strengths of successful FASD diagnostic clinics.MethodQualitative interviews were conducted with 12 key informants from 10 clinics representing different regions, populations served, and clinic structures. Data analysis was performed using iterative thematic inquiry.ResultsThree themes related to challenges and four themes related to strengths were identified. Human resources were identified as both a challenge and strength. Additional challenges were diagnostic capacity and system level support. Additional strengths were clinic adaptability, relational connections, and culturally responsive approaches.ConclusionsFASD clinics are more alike than not in their approach to assessment and diagnosis. Some clinics are facing similar challenges that others have overcome, supporting the need for mentorship and consistent operating standards.

This study investigated the diagnostic capacity for Fetal Alcohol Spectrum Disorder (FASD) in multidisciplinary clinics across several provincial and one territorial jurisdictions of Canada: Alberta, British Columbia, Manitoba, Ontario and Northwest Territories. The data were collected directly from clinics capable of providing diagnoses of FASD and examined annual capacity for the assessment and diagnosis of FASD per year from 2015 to 2019. In total, 58 FASD diagnostic clinics were identified and 33 clinics participated in this survey. The study identified inadequate FASD diagnostic capacity in all participating jurisdictions. Based on the findings and the current population sizes, it is estimated that 98% of individuals with FASD are undiagnosed or misdiagnosed in Canada. Wait times for FASD diagnosis ranged from 1 month to 4.5 years across participating jurisdictions. The annual FASD diagnostic capacity in the select provinces and territories require at least a 67-fold increase per year.

Fetal alcohol spectrum disorder (FASD) is a complex neurodevelopmental disability characterized by a range of brain- and body-based difficulties which, when left unsupported, can lead to experiences of significant adversity across the lifespan. Caregivers of individuals with FASD play a critical role in advocating and supporting healthy outcomes for individuals with FASD, and most caregiver research to date has been focused on stressors and challenges. Very few studies have been conducted to systematically capture the full experience of caring for someone with FASD across the lifespan, including perspectives, concerns, as well as strengths and successes of caregivers and their families. Collaborative research with individuals with living experience is essential for understanding needs and supporting healthy outcomes for individuals with FASD and their families, and caregivers are in a unique and important position to provide perspectives and share living expertise. Therefore, the current study was developed collaboratively with caregivers and researchers to capture the many aspects of caregivers’ contexts, concerns, needs, and successes in raising individuals with FASD. In this study protocol paper, we describe the rationale, development, design, and anticipated impacts of this research. The goal of this paper is to share information about why and how this study is being done, and potentially guide other teams in developing similar projects to better understand caregivers’ experiences, needs, and successes. Documenting and giving voice to the breadth and depth of caregiver experiences will help us to tailor services and supports, develop resources, stimulate knowledge translation based in resilience and protective factors, guide future studies, and inform evidence-based policy initiatives.

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 defi-nition of FASD, with the goal of increasing awareness of FASD, reducing stigma, and improving communication and consistent messaging about the disability.

Fetal alcohol spectrum disorder (FASD) is a multifaceted disability, characterized not only by brain- and body-based challenges, but also high rates of environmental adversity, lifelong difficulties with daily living, and distinct sociocultural considerations. FASD is one of the most common neurodevelopmental disabilities in the Western world and associated with significant social and economic costs. It is important to understand the complexities of FASD and the ways in which FASD requires unique consideration in research, practice, and policy. In this article, we discuss our perspectives on factors that distinguish FASD from other disabilities in terms of complexity, co-occurrence, and magnitude. We provide an overview of select literature related to FASD as a socially rooted disability with intergenerational impacts and multiple layers of stigma. These social issues are intertwined with notable experiences of adversity across the lifespan and high rates of co-occurring health concerns for individuals with FASD, all of which present unique challenges for individuals, caregivers, families, service providers, and policy makers. Understanding these factors is the first step in developing and implementing specialized initiatives in support of positive outcomes for individuals with FASD and their families. Future directions are proposed for advancing research, practice, and policy, and responding to the unique complexities of FASD.

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 defi-nition of FASD, with the goal of increasing awareness of FASD, reducing stigma, and improving communication and consistent messaging about the disability.

Fetal alcohol spectrum disorder (FASD) is the leading known cause of developmental disability in Canada and is a major public health and social issue. FASD affects approximately 4% of Canadians, yet we still do not have standardized data on individuals with prenatal alcohol exposure, including medical diagnoses, functional diagnoses, and treatment recommendations. This information will provide evidence related to prevalence, risk factors, interventions, and short- and long-term outcomes. For the last 10 years, researchers have been working with FASDFetal alcohol spectrum disorder (FASD) diagnostic centers to define meaningful data fields and to develop and implement a standardized database for online data collection. The National FASDFetal alcohol spectrum disorder (FASD) Database currently has over 3500 records of information captured from individuals who have been assessed for FASDFetal alcohol spectrum disorder (FASD) in 30 diagnostic clinics from across Canada. Not only does this Database provide an infrastructure to capture information about the physical, developmentalDevelopmental, and mental health issues of individuals with prenatal alcohol exposurePrenatal alcohol exposure (PAE) but also about their adverse experiences and recommended interventionsInterventions, supports, and services. This database is the first of its kind, extending beyond the medical aspect of the FASD diagnosisFASD diagnoses and into capturing adverse experiences and outcomes of individuals with prenatal alcohol exposurePrenatal alcohol exposure (PAE), regardless of the diagnosis. Data confirms the complexity of the health, prenatal, and postnatal environments of individuals living with FASDFetal alcohol spectrum disorder (FASD) across the life spanLife span.

This field report summarizes and advances key learnings for leveraging community–university partnerships addressing housing service gaps for high-risk, marginalized populations with complex needs. We describe our navigation of existing and forged intersections to develop a strength-based and individualized approach to humanizing housing service delivery for individuals with fetal alcohol spectrum disorder (FASD). Our account is framed by four questions: why community and university partners came together to develop a responsive approach through the CanFASD network; who became key stakeholders in the partnership; how our humanizing housing approach is guiding the navigation of complexities inherent in service delivery for individuals with FASD; and what insights about creating intersections are we applying to our community-university partnerships.

The association between fetal alcohol spectrum disorder (FASD), residential schools and subsequent assimilatory policies in Canada is of such significance that it was included in the groundbreaking Truth and Reconciliation Commission of Canada’s Final Report through Call to Action #33, which focuses on collaboratively developing FASD prevention programs in Indigenous communities. A consensus statement with eight tenets for enacting Call to Action #33 was co-developed in May 2017 using a Two-Eyed Seeing approach during and after a meeting on Indigenous approaches to FASD prevention held in Canada. The consensus statement provides guidance for creating community-based, culture-led FASD prevention programs in Indigenous communities. The eight tenets reflect the diverse perspectives of Indigenous and non-Indigenous participants, are grounded in available research evidence, and align with Indigenous worldviews and wellness models. This paper uses the consensus statement and eight exemplary FASD prevention programs from Indigenous communities and organizations across Canada to highlight identity, culture, and relationships as central elements of FASD prevention in Indigenous communities. The consensus statement provides guidance for developing community- and culture-led FASD prevention programs and highlights the importance of Indigenous knowledge systems in developing and researching FASD prevention in, and with, Indigenous communities.

Early intervention for individuals with FASD is paramount, thus exploring factors that affect the diagnostic process is critical. This process can be complicated by challenges gathering background information, accurately evaluating higher-level cognitive skills across ages, and teasing apart the impact of life adversities from the effects of prenatal alcohol exposure. This study is a retrospective file review of 154 children (44% female; mean age 8.4 years, range 1.0 to 16.9) deferred at their first FASD assessment, and 51 (43% female; mean 9.9 years, range 2.7 to 17.2) who returned for a second assessment. Data was collected from three Canadian FASD clinics to explore reasons for deferral, the clinical profile of deferred children, why some returning children were diagnosed while others were not, and changes between assessments. Results suggest that deferred children initially lacked evidence of abnormalities sufficient for a diagnosis, presented with areas of relative neurobehavioral strength and difficulty, and children eventually diagnosed with FASD showed significantly more impaired brain function (p < 0.001, eta p2 = 0.547), postnatal risk (p = 0.021, eta p2 = 0.121), and comorbidities (p = 0.038, eta p2 = 0.085) than undiagnosed children. These findings provide important insights into the process of clinical assessment for FASD.

1The Society of Obstetricians and Gynaecologists of Canada (SOGC), 2Canada FASD Research Network, Department of Obstetrics and Gynaecology, University of Ottawa, Ottawa, Ontario 3Compass Clinic, Vancouver, British Columbia 4National Institutes of Health, Bethesda, Maryland, USA 5Fetal Alcohol Spectrum Disorders Clinic, Child Development Services, Alberta Children’s Hospital, Calgary, Alberta 6Department of Pediatrics, University of Manitoba, Winnipeg, Manitoba 7Emerita University of British Columbia, Vancouver, British Columbia 8Dr. Georges-L.-Dumont University Hospital Centre, Moncton, New Brunswick 9FASD Centre of Excellence, Université de Moncton and Université de Sherbrooke, Moncton, New Brunswick 10Department of Pediatrics, University of British Columbia, Vancouver, British Columbia 11Glenrose Rehabilitation Hospital, Alberta Health Services, Edmonton, Alberta 12Lakeland Centre for FASD, Cold Lake, Alberta 13Surrey Place Centre, Toronto, Ontario

Children and adolescents with fetal alcohol spectrum disorder (FASD) experience significant impairments in cognitive functioning, though substantial within-group heterogeneity is often observed. The purpose of this study was to characterize the cognitive profile of children and adolescents with FASD with a special focus on examining moderators of functioning and cognitive strengths. Children and adolescents with FASD (n = 87) and controls (n = 110), ages 5 to 18 years completed a cognitive test battery. MANOVA was used to evaluate between-group cognitive differences, as well as the role of age and gender as potential moderators. Relative strengths were evaluated using both within-subject and between-group methods. Participants with FASD were found to show significant impairment on all cognitive tasks relative to controls, with substantial deficits evident on a measure of mathematical skill. Though neither age nor gender emerged as moderators, significant three-way interactions between age, gender, and group were evident on measures of executive functioning (inhibition), verbal memory, and word identification. Tasks measuring higher-order complex attention and visuospatial processing emerged as possible relative strengths in the FASD group. Children and adolescents with FASD had significant cognitive impairment across multiple domains confirming high need for interventions. Differences in the cognitive functioning for boys and girls with FASD at different developmental periods, along with relative strengths, may serve to inform interventions and future longitudinal research.

Children with fetal alcohol spectrum disorder (FASD) or prenatal alcohol exposure (PAE) frequently exhibit impairment on tasks measuring inhibition. The objective of this study was to determine if a performance-based relationship exists between psychometric tests and eye movement tasks in children with FASD. Participants for this dataset were aged 5-17 years and included those diagnosed with an FASD (n=72), those with PAE but no clinical FASD diagnosis (n=21), and typically developing controls (n=139). Participants completed a neurobehavioral test battery, which included the NEPSY-II subtests of auditory attention, response set, and inhibition. Each participant completed a series of saccadic eye movement tasks, which included the antisaccade and memory-guided tasks. Both the FASD and the PAE groups performed worse than controls on the subtest measures of attention and inhibition. Compared with controls, the FASD group made more errors on the antisaccade and memory-guided tasks. Among the combined FASD/PAE group, inhibition and switching errors were negatively correlated with direction errors on the antisaccade task but not on the memory-guided task. There were no significant correlations in the control group. These data suggests that response inhibition deficits in children with FASD/PAE are associated with difficulty controlling saccadic eye movements which may point to overlapping brain regions damaged by prenatal alcohol exposure. The results of this study demonstrate that eye movement control tasks directly relate to outcome measures obtained with psychometric tests that are used during FASD diagnosis, and may therefore help with early identification of children who would benefit from a multidisciplinary diagnostic assessment. (C) 2013 Elsevier B.V. All rights reserved.

Previous studies have demonstrated that children with Fetal Alcohol Spectrum Disorder (FASD) exhibit deficits in measures of eye movement control that probe aspects of visuospatial processing and working memory. The goal of the present study was to examine, in a large cohort of children with FASD, prenatal alcohol exposure (PAE) but not FASD, and typically developing control children, the relationship between performance in eye movement tasks and standardized psychometric tests that assess visuospatial processing and working memory. Participants for this dataset were drawn from a large, multi-site investigation, and included children and adolescents aged 5-17 years diagnosed with an FASD (n=71), those with PAE but no clinical FASD diagnosis (n=20), and typically developing controls (n=111). Participants completed a neurobehavioral test battery and a series of saccadic eye movement tasks. The FASD group performed worse than controls on the psychometric and eye movement measures of working memory and visuospatial skills. Within the FASD group, digit recall, block recall, and animal sorting were negatively correlated with sequence errors on the memory-guided task, and arrows was negatively correlated with prosaccade endpoint error. There were no significant correlations in the control group. These data suggest that psychometric tests and eye movement control tasks may assess similar domains of cognitive function, and these assessment tools may be measuring overlapping brain regions damaged due to prenatal alcohol exposure. The results of this study demonstrate that eye movement control tasks directly relate to outcome measures obtained with psychometric tests and are able to assess multiple domains of cognition simultaneously, thereby allowing for an efficient and accurate assessment.

BackgroundDiagnosis of fetal alcohol spectrum disorder (FASD) is relevant for the reduction of long term adverse sequalae. However, the diagnostic guidelines require a multidisciplinary approach which may hinder access to diagnostic and management services. Most diagnostic clinics are located in urban areas. There is less emphasis on the operations, capacities, and outcomes from rural diagnostic clinics.MethodsOver a ten and half years of clinic operations to diagnose children and subsequently adults, all consenting adults provided answers to interviews, participated in measurements and other diagnostic procedures. Information was collected on their contact with mental health services. Comparison of the findings with those from other established clinics included variables relevant to outcome measures.Results375 individuals were referred, assessed and diagnosed according to the existing guidelines for FASD diagnosis. Alcohol-related neurodevelopmental disorder (ARND), which was closely associated with age, was the most prevalent FASD diagnosis. One third of those diagnosed had IQ above the average range and ADHD was the most relevant clinical correlate. The diagnostic clinic was able to complete diagnosis on potentially 37.5% of likely affected individuals.ConclusionFASD can be diagnosed in children and adults in a rural setting. ADHD and other mental disorders should be a focus for treatment in affected individuals especially adults. It is important to consider the impact of age on the outcome of FASD. To increase diagnostic capacity, clinic operations could be modelled similarly.

Access to diagnostic and assessment services for fetal alcohol spectrum disorder in adults is relatively rare in the world. Since 2002, the Lakeland Centre for Fetal Alcohol Spectrum Disorder (LCFASD) in northeastern Alberta has been providing community-based, mobile diagnostic and assessment services for adults prenatally exposed to alcohol. This article describes the community-based model developed by the LCFASD, the clinical findings of the diagnostic team and the successes and challenges experienced by the team.