An examination of executive functioning in adolescents with FASD in a self-regulation intervention.

Adolescents with Fetal Alcohol Spectrum Disorder (FASD) often have challenges with executive functioning (EF), which impacts their ability to self-regulate. In this study, 23 adolescents with FASD completed a self-regulation intervention. The intervention was a manualized Teen Adaptation of the Alert Program®. A nonrandomized waitlist control design was used, and participants completed pre- and post-testing using performance-based measures of EF, and rating scales of EF were completed by caregivers. Results were analyzed three ways; 1) intervention and waitlist control group comparison, 2) whole sample pre-and post- test comparison, and 3) using Reliable Change Indexes to examine individual-level clinically relevant changes. No significant intervention effects were found when comparing the intervention and waitlist control groups. A significant difference was found on a measure of verbal inhibition when total sample pre-and post-test scores were compared. Using Reliable Change Index analysis, 30% participants showed reliable change in the direction of improvement on direct measures of EF, and 57% demonstrated reliable change in the direction of improvement on rating scales. This research study underscores the importance of investigating both individual and group level changes when analyzing data, as well as using reliable change to understand clinically meaningful effects that may be otherwise masked. These findings highlight the potential of the SR intervention to positively impact EF in adolescents with FASD. This study contributes to the growing literature that demonstrates the potential of individuals with FASD to benefit from direct intervention.

Screening and identification of fetal alcohol spectrum disorder in criminal legal settings: A realist review.

BACKGROUND: Screening for fetal alcohol spectrum disorder (FASD) has been identified as a promising approach to improve recognition, understanding and effective response to the unique needs of those with FASD in criminal legal settings. However, to date, there has been limited synthesis of relevant screening tools, indicators, or implementation considerations in this context. AIMS: The present review aimed to synthesise evidence and develop a conceptual framework for understanding how, when, why, for whom and by whom FASD screening tools, items and/or indicators and characteristics serve to accurately identify people with FASD in criminal legal contexts, with consideration of individual and system needs relevant to effective implementation and response. METHODS: A preregistered search was conducted using a modified realist review framework for both peer-reviewed articles and grey literature. Included sources were available in English, which focused on individuals with prenatal alcohol exposure and/or FASD with criminal legal involvement and offered new empirical evidence. Sources were reviewed using the Quality Control Tool for Screening Titles and Abstracts by Second Reviewer framework, extracted using a structured coding form and narratively synthesised. RESULTS: The search yielded 52 sources, 11 FASD screening tools designed for or applied in criminal legal settings and 38 potential FASD indicators or characteristics relevant to identifying people who may have FASD in criminal legal settings, organised into six conceptually related domains. There was limited evidence supporting the psychometric properties of screening tools across populations or settings, though growing evidence highlights the promise of some instruments. Although few studies characterised potential considerations to be made when implementing a screening tool or approach, both system and individual level needs related to recognising and effectively responding to FASD in criminal legal contexts were identified, and findings revealed strong support among legal and clinical professionals regarding the need for FASD screening in these settings. CONCLUSIONS: Findings of this review can be used to inform the development, selection, implementation and evaluation of FASD screening tools in criminal legal settings and underscore a continued need for enhanced resources, policy and cross-sectoral response to better support the needs of people with FASD in the criminal legal contexts.

Integrated Supports for Women and Girls Experiencing Substance Use and Complex Needs.

There is strong research to support integrated and gender-sensitive harm reduction approaches for supporting women, girls, and gender diverse people. For individuals who are pregnant, flexible and integrated treatment approaches may be especially important. In this study, we report on an integrated program in rural Canada designed to support pregnant women, girls, and gender diverse people experiencing substance use and other complex needs. Program data (N = 393) from the 2nd Floor Women's Recovery Centre (2nd Floor) at the Lakeland Centre for Fetal Alcohol Spectrum Disorder (LCFASD) was analyzed with several aims. Study goals were to (1) describe characteristics and needs of clients, (2) identify factors associated with program completion, and (3) for a subset of clients, examine resources, wellbeing, and social and behavioral outcomes after treatment. Clients (Mage = 27.4 years, range 15-64) presented at the 2nd Floor with complex medical and mental health needs, and experiences of significant socioenvironmental adversity. However, almost two-thirds (63.4%) successfully completed the program, which was more likely for clients who had stable housing at intake and a possible or confirmed diagnosis of FASD. After treatment, clients reported high levels of wellbeing, and most were connected to health care and community resources. In the year after program completion, clients who were contacted for follow-up maintained strong connection to resources and reported notable improvements in social and behavioral functioning. Many were working or volunteering, most were in stable home environments, rates of substance use and legal involvement were substantially reduced, and many clients were actively caring for their children. This study offers important findings to inform future research, practice, and policy for supporting health and wellbeing for women, children, families, and communities.

Sex-related differences among individuals assessed for fetal alcohol spectrum disorder in Canada.

BACKGROUND: Consideration of sex- and gender-related factors is critical for understanding and supporting health and wellbeing. Although both sex and gender influence people with developmental disabilities, there is relatively little research on these factors and their influences among individuals with fetal alcohol spectrum disorder (FASD), a complex neurodevelopmental disability impacting an estimated 4%-5% of the population. Understanding sex- and gender-related differences in FASD is needed to facilitate evidence-informed assessment, treatment planning, and advocacy. To begin unpacking these factors, we investigated sex-based differences in clinical presentation and experiences among individuals assessed for FASD across the lifespan. METHODS: We analyzed 2574 clinical records from 29 FASD diagnostic centers in Canada. Participants ranged in age from 1 to 61 years (mean 15.2 years), and more than half (58.3%) were male at birth. Study variables included participant demographics, physical indicators of prenatal alcohol exposure (PAE), neurodevelopmental impairment, FASD diagnosis, co-occurring physical and mental health diagnoses, and environmental adversity. RESULTS: There were no significant differences between males and females with respect to FASD diagnostic outcome or physical indicators of PAE. However, males experienced significantly more neurodevelopmental impairment. Females experienced higher rates of endocrine problems, anxiety, and depressive/mood disorders, whereas males had higher rates of attention deficit-hyperactivity disorder, conduct disorder, and oppositional defiant disorder. Adversity also differed by sex, with females experiencing higher rates of trauma and legal problems with victimization/custody, and males having more difficulties with school and offending/incarceration. Sex-based differences were most apparent in adolescents (13-17 years) and adults (≥25 years). CONCLUSIONS: Individuals with PAE/FASD experience notable sex-related differences in clinical presentation and experiences across the lifespan. Findings from this study should help to guide researchers, service providers, and policy makers to improve FASD screening, diagnosis, and intervention and better address the needs of individuals with PAE/FASD of all genders.

Complementary therapies in substance use recovery with pregnant women and girls.

OBJECTIVES: Supporting women and girls who are pregnant and experiencing substance use challenges is a high priority for researchers, clinicians, and policymakers. Complementary therapies (CTs) can be effective forms of treatment in some contexts and populations; however, research on the use of CTs in substance use recovery with pregnant women and girls is scarce. To fill this gap, we conducted a mixed methods study using survey data collected at a women's recovery center in Canada. Our objectives were to describe CTs provided at the program; identify what CTs are perceived by participants as most/least positive; and explore factors that may impact participant experiences with CTs. METHODS: We analyzed feedback responses from 255 women and girls (Mage = 27.5 years, range 15-64) using Pearson chi-square tests, logistic regression, and inductive content analysis. RESULTS: The most frequently provided CTs were yoga, energy-related activities (e.g. reiki, reflexology), and meditation. Among the most common CTs, participants provided the highest endorsements for massage and physical activity, and the lowest endorsements for yoga and drumming. Across CTs, whether participants looked forward to an activity contributed significantly to whether they found it helpful, would like to do it again, and planned to continue engaging in the activity after leaving the program. Four broad contextual factors were identified that may impact experiences and perspectives about CTs: (1) goodness of fit, (2) self-awareness, (3) growth, and (4) healing and holistic wellbeing. CONCLUSIONS: This study provides novel evidence on the potential impacts of CTs in substance use treatment for pregnant women and girls, and important contextual factors to consider when implementing these approaches.

Caregivers' experiences and perceptions of suicidality among their children and youth with fetal alcohol spectrum disorder.

Individuals with Fetal Alcohol Spectrum Disorder (FASD) experience a range of biopsychosocial vulnerabilities that can increase the possibility of adverse life outcomes, including a heightened risk of suicidality. In this study, we explored the lived experiences of caregivers of children and youth with FASD and suicidality, including their perceptions of their child and youth's suicidal experiences. Between March and June 2021, six comprehensive, semi-structured interviews were conducted with five caregivers of children and youth with FASD (Mage = 14.5 years, range 11-22) who were currently experiencing suicidality or had a history of suicidality. Data were analyzed using interpretative phenomenological analysis and then developed into a composite vignette informed and organized by the social-ecological suicide prevention model (SESPM). The composite vignette revealed the narratives of families living with and caring for children and youth with FASD who experience suicidality in relation to the complex and intersectional individual, relational, community, and societal level contextual and protective factors. Findings from this study highlight the critical need for comprehensive FASD-informed suicide prevention and intervention approaches to promote the mental health and wellbeing of children and youth with FASD and their caregivers.

Suicidality and Associated Factors Among Individuals Assessed for Fetal Alcohol Spectrum Disorder Across the Lifespan in Canada.

OBJECTIVE: Individuals with fetal alcohol spectrum disorder (FASD) experience a range of complex neurodevelopmental, psychological, and socioenvironmental vulnerabilities. There is growing evidence that suicidal ideation, attempts, and death by suicide are significant concerns within this population. In this study, we (1) determined the rate of suicidal ideation/attempts in a large group of individuals with prenatal alcohol exposure (PAE) who were assessed for FASD in Canada and (2) investigated the associations between suicidal ideation/attempts and select demographic and biopsychosocial factors in this group. METHOD: A secondary analysis of data from Canada's National FASD Database, a national repository of clinical information gathered through FASD assessment and diagnostic clinics across the country, was conducted. Descriptive analyses, chi-square/Fisher's exact tests, and binary logistic regression were used to examine demographic and biopsychosocial variables and their associations with suicidality. RESULTS: In our sample of 796 participants (Mage = 17.7 years, range = 6-59; 57.6% male) assessed for FASD, 25.9% were reported to experience suicidal ideation/attempts. Numerous demographic and biopsychosocial factors were found to be significantly associated with suicidal ideation/attempts. The strongest associations with suicidal ideation/attempts were substance use, history of trauma/abuse, and impaired affect regulation. CONCLUSIONS: With this study, we contribute to the emerging evidence of elevated risk of suicidality among individuals with PAE/FASD and improve our understanding of factors that may exacerbate this risk. Findings have relevance for improving screening, prevention, and proactive treatment approaches for individuals with PAE and FASD, their families, and wider support systems.

Understanding the needs of justice-involved adults with fetal alcohol spectrum disorder in an Indigenous community.

Individuals with fetal alcohol spectrum disorder (FASD) experience a range of neurodevelopmental challenges, often compounded by social and environmental adversity. One of the most concerning outcomes that can be associated with FASD is involvement in the justice system, where individuals with FASD are vastly over-represented. Individuals with FASD who are both justice-involved and Indigenous experience added layers of marginalization. In this community-based study, we explored the needs of 16 adults who participated in an FASD-informed restorative justice program in an Indigenous community in Alberta, Canada. Clinical record reviews and client interviews were used to gather information. Diverse needs were identified, including pervasive neurodevelopmental difficulties, notable physical and mental health challenges, complex experiences of psychosocial trauma, and varied criminogenic needs. This study increases our understanding of the unique and complex biopsychosocial and criminogenic needs of Indigenous justice-involved adults with FASD. Such an understanding is a first step in developing tailored interventions for individuals with FASD and has important practice and policy implications for supporting positive outcomes. For Indigenous individuals with FASD, intervention efforts should be integrated within the community context to promote collective healing.

Balancing the story of fetal alcohol spectrum disorder: A narrative review of the literature on strengths.

For many years, researchers have explored the complex challenges experienced by individuals with fetal alcohol spectrum disorder (FASD). This research has been important for documenting the brain- and body-based impacts of prenatal alcohol exposure and the psychosocial vulnerabilities and environmental adversities frequently associated with FASD. It has also supported advocacy efforts and highlighted the necessity of providing FASD services and supports. However, with the focus on deficits and needs, there is a considerable gap in the literature on the strengths and successes of individuals with FASD. The lack of strengths-based FASD research has likely perpetuated the stress and stigma experienced by individuals with FASD and their families. Thus, there is a critical need to shift the direction of the field. Here we provide a narrative review of the literature on strengths in FASD. Our goals are to: (1) understand the state of strengths-based research related to individuals with FASD across the lifespan, and (2) describe positive characteristics, talents, and abilities of individuals with FASD that may be cultivated to promote their fulfillment and well-being. We identified a total of 19 studies, most of which were conducted to explore the lived experiences of adults with FASD. This preliminary but critical body of evidence highlights the intrinsic strengths of individuals with FASD, including strong self-awareness, receptiveness to support, capacity for human connection, perseverance through challenges, and hope for the future. Despite the importance of this emerging evidence, appraisal of the literature indicates a need for more intentional, methodologically rigorous, participatory, and theory-driven research in this area. Findings from this study, including the identified gaps in the literature, can be used to inform research, practice, and policy to meaningfully advance the field of FASD and promote positive outcomes in this population.

Characterising fetal alcohol spectrum disorder in Canada: a national database protocol study.

INTRODUCTION: Fetal alcohol spectrum disorder (FASD) is one of the most common neurodevelopmental disorders in North America. It is a complex disability, associated with challenges in cognitive, behavioural and socialemotional functioning, as well as an increased risk of physical and mental health comorbidities, and difficulties in daily living across the lifespan. Previous attempts to characterise the profile of this population have been hampered by differences in data collected across studies, regional discrepancies in terminology and definitions, and a lack of tools to integrate comprehensive datasets. METHODS AND ANALYSIS: The goals of this study are to use the Canadian National FASD Database, a national repository of FASD assessment-related information, to better understand the functional profile, comorbidities, intervention needs and difficulties in daily living experienced by individuals assessed for FASD across the lifespan. We will also examine what factors may be the most sensitive predictors of receiving an FASD diagnosis. Data will be analysed from over 3500 records collected between 2010 and 2021 (ongoing) from 26 FASD diagnostic clinics in seven provinces and territories. Data collection is ongoing, and analysis will be performed on a biannual basis to continue to hone our understanding of the profiles, needs and outcomes of individuals assessed for FASD in Canada. This research is critical for refining FASD assessment and diagnostic practice, enabling accurate and early identification of individuals with FASD, and connecting individuals with FASD and their families to comprehensive and effective services and resources to support healthy developmental trajectories. ETHICS AND DISSEMINATION: Ethics approval for the National FASD Database Project was obtained from the Ottawa Health Science Network Research Ethics Board. As new knowledge is gained from this project, findings will be disseminated through publications, presentations and feedback to participating clinics, with the ultimate goal of informing FASD research, practice and policy.

Characterizing adverse childhood experiences among children and adolescents with prenatal alcohol exposure and Fetal Alcohol Spectrum Disorder.

BACKGROUND: Individuals with Fetal Alcohol Spectrum Disorder (FASD) and prenatal alcohol exposure (PAE) face elevated rates of postnatal environmental adversity across the lifespan. OBJECTIVE: We explored early adversity among children and adolescents with PAE. PARTICIPANTS AND SETTING: Our sample included 333 children and adolescents with PAE assessed at a Canadian FASD diagnostic clinic, 66% of whom were diagnosed with FASD. METHODS: Data were collected retrospectively via record review, and adversity was measured using the Adverse Childhood Experiences Questionnaire (ACE-Q). RESULTS: Participants experienced high levels of adversity (mean ACE score of 3.4), which increased with age, mental health comorbidity, and number of living placements. Common ACEs included: not being raised by both biological parents (97.3%), caregiver disruption (88.5%), and exposure to household substance use (69.7%). Females had significantly higher rates of sexual abuse than males (p < .001, ø = -0.18). There was no difference in total ACE scores between participants diagnosed with FASD versus those not diagnosed, but participants with FASD were less likely to live with both biological parents (p < .001, ø = .19) or to have been exposed to household mental health problems (p = .007, ø = -0.15). CONCLUSIONS: Children and adolescents with PAE experience high rates of early adversity. Practice and policy initiatives are needed to improve early detection of ACEs among children with PAE, and of PAE among children with ACEs. Targeted supports are needed to strengthen the early caregiving environment and mitigate the risks of adversity to support healthy outcomes for individuals with PAE and FASD.

Responding to the Unique Complexities of Fetal Alcohol Spectrum Disorder.

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.

A Systematic Review of Interventions to Improve Mental Health and Substance Use Outcomes for Individuals with Prenatal Alcohol Exposure and Fetal Alcohol Spectrum Disorder.

Individuals with fetal alcohol spectrum disorder (FASD) experience remarkably high rates of mental health and substance use challenges, beginning early in life and extending throughout adulthood. Proactive intervention can help to mitigate some of these negative experiences. Although the literature on FASD intervention is growing, there is currently a lack of consolidated evidence on interventions that may improve mental health and substance use outcomes in this population. Informed by a life course perspective, we undertook a systematic review of the literature to identify interventions that improve mental wellness through all developmental stages for people with prenatal alcohol exposure (PAE) and FASD. A total of 33 articles were identified, most of which were focused on building skills or strategies that underlie the well-being of children with PAE and FASD and their families. Other interventions were geared toward supporting child and family wellness and responding to risk or reducing harm. There was a notable lack of interventions that directly targeted mental health and substance use challenges, and a major gap was also noted in terms of interventions for adolescents and adults. Combined, these studies provide preliminary and emerging evidence for a range of intervention approaches that may support positive outcomes for individuals with FASD across the life course.

Difficulties in Daily Living Experienced by Adolescents, Transition-Aged Youth, and Adults With Fetal Alcohol Spectrum Disorder.

BACKGROUND: Individuals with fetal alcohol spectrum disorder (FASD) experience a range of problems in their cognitive, affective, and physical functioning following prenatal alcohol exposure (PAE), in addition to multiple complex difficulties in daily living that impact well-being. Using the Canadian National FASD Database, we sought to profile a range of difficulties in daily living, along with risk factors, in a large cross-sectional cohort of adolescents, transition-aged youth, and adults with PAE, of which a subset was ultimately diagnosed with FASD. METHODS: We summarized data for 9 current difficulties in daily living reported at the time of diagnostic assessment for 726 individuals with PAE assessed at 26 FASD diagnostic clinics across Canada, including 443 adolescents (12 to 17 years), 135 transition-aged youth (18 to 24 years), and 148 adults (25 to 60 years). Difficulties included problems related to school disruption, employment, independent living needs, supportive or sheltered housing, legal problems with victimization, legal problems with offending, incarceration, alcohol misuse, and other substance misuse. Risk factors included age, gender, living placement, postnatal trauma, and neurodevelopmental impairment. RESULTS: Across the full PAE sample, adolescents, transition-aged youth, and adults presented with high rates of difficulties in daily living, including independent living support needs (63%), alcohol misuse (38%), other substance misuse (46%), employment problems (37%), legal problems with offending (30%), assisted or sheltered housing (21%), school disruption (18%), legal problems with victimization (4%), and incarceration (3%). Difficulty rates were similar for those with FASD irrespective of diagnosis (e.g., with or without sentinel facial features), but rates greater for adults, and those with low overall intellectual functioning (IQ < 70). Controlling for age and IQ, cumulative difficulty was independently associated with gender, living placement, and neurodevelopmental impairment. CONCLUSIONS: Adolescents, transition-aged youth, and adults with FASD experienced a range of substantial and complex difficulties at the time of their diagnostic assessment, signaling a high level of service needs. These findings underscore the importance of developmentally informed assessment continued through childhood, as well as ongoing functional and needs-based service provision as youth with FASD transition to adulthood and beyond.

Neurocognitive Function and Fetal Alcohol Spectrum Disorder in Offenders with Mental Disorders.

Individuals with a history of offending behavior show high rates of mental disorder as well as fetal alcohol spectrum disorder (FASD). Neurocognitive impairments are common in both mental disorders and FASD and may interface with offending behavior. Understanding these impairments could effectively inform clinical considerations among this population. The purpose of this study was to characterize the life experiences and examine the neurocognitive profile of a group of adult forensic psychiatric outpatients. We also investigated potential differences between offenders with FASD and the rest of the sample. Data were collected on 45 subjects on numerous variables, including demographics, background information, offending histories, and comorbidities. Subjects also completed extensive neurocognitive testing. The sample was primarily male (82.2%) with a mean age of 42 years. There was a high prevalence of lifetime adversity and varied offense histories. Subjects showed the most significant neurocognitive impairment in executive function, visual memory (immediate and delayed recall), and full-scale IQ. The FASD group (n = 12) did not differ significantly from the No-FASD group (n = 33) on any background variables. The FASD group showed significantly lower neurocognitive scores in the areas of verbal IQ, full-scale IQ, working memory, processing speed, and expressive vocabulary.

Assessing for Fetal Alcohol Spectrum Disorder.

Background The recommended "gold standard" for Fetal Alcohol Spectrum Disorder (FASD) assessment involves a multidisciplinary diagnostic team and comprehensive battery of neuropsychological tests to evaluate functioning across 10 brain domains. The current Canadian Guideline for diagnosis of FASD outlines a list of test measures for assessment; however, very little research exists to explore which specific tools are being used in clinical practice. Objectives The purpose of the current study was to gain a better understanding of the testing measures used by FASD clinicians in Alberta, Canada.   Methods A survey was sent to coordinators of 23 Alberta FASD clinics requesting them to distribute the survey to their diagnostic team members, including physicians, psychologists, speech-language pathologists (SLPs), and occupational therapists (OTs).   Results A wide range of measures (both direct and indirect; n = 173) to assess brain domains were reported by clinics. Many tests were used to assess function across multiple brain domains. Most of the commonly used tests aligned with those suggested in the Canadian Guideline; however, there were many additional measures being used that were that were not listed in the Guideline.   Conclusions This study revealed important information about the use of testing measures in FASD assessment and sheds light on the commonalities in practice across clinics in Alberta. Results demonstrate strong convergence of direct and indirect measures to assess brain function. Ultimately, identifying a comprehensive, reliable, and usable testing battery of measures for FASD assessment will improve the clarity and accuracy of the diagnostic process and facilitate advancements in the field, as well as enable comparisons across clinics.

Deferred diagnosis in children assessed for fetal alcohol spectrum disorder.

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, ηp2 = 0.547), postnatal risk (p = 0.021, ηp2 = 0.121), and comorbidities (p = 0.038, ηp2 = 0.085) than undiagnosed children. These findings provide important insights into the process of clinical assessment for FASD.