Fetal Alcohol Research Articles

‘Trying differently’ towards improving school experiences: Systematically reviewing research on school experiences for students with Fetal Alcohol Spectrum Disorder (FASD) and their teachers

Fetal alcohol spectrum disorder is a complex brain-based developmental disability. Research on the experiences of children with Fetal Alcohol Spectrum Disorder (FASD) and their caregivers consistently highlights the difficulties and frequent exclusion they experience with the education system as one of the most stressful aspects of their lives. Previous studies have identified the need for more integrated approaches to support and learning for children with FASD that recognize the integral role of positive teacher-student relationships on student outcomes. A systematic review of existing research on the school experiences of children and youth with FASD and their teachers was conducted, and a critical iterative approach was used to interpret the data. Key findings are discussed, and important recommendations are made for researchers, policymakers, and educators to address the longstanding gaps in research and practice regarding the complex care and support needs of those with FASD from an anti-oppressive, destigmatized, and holistic framework.

Alcohol exposure during pregnancy induces cardiac mitochondrial damage in offspring mice.

Prenatal alcohol exposure (PAE) has been linked to congenital heart disease and fetal alcohol syndrome. The heart primarily relies on mitochondria to generate energy, so impaired mitochondrial function due to alcohol exposure can significantly affect cardiac development and function. Our study aimed to investigate the impact of PAE on myocardial and mitochondrial functions in offspring mice. We administered 30% alcohol (3 g/kg) to pregnant C57BL/6 mice during the second trimester. We assessed cardiac function by transthoracic echocardiography, observed myocardial structure and fibrosis through staining tests and electron transmission microscopy, and detected cardiomyocyte apoptosis with dUTP nick end labeling assay and real-time quantitative PCR. Additionally, we measured the reactive oxygen species content, ATP level, and mitochondrial DNA copy number in myocardial mitochondria. Mitochondrial damage was evaluated by assessing the level of mitochondrial membrane potential and the opening degree of mitochondrial permeability transition pores. Our findings revealed that PAE caused cardiac systolic dysfunction, ventricular enlargement, thinned ventricular wall, cardiac fibrosis in the myocardium, scattered loss of cardiomyocytes, and disordered arrangement of myocardial myotomes in the offspring. Furthermore, we observed a significant increase in mitochondrial reactive oxygen species content, a decrease in mitochondrial membrane potential, ATP level, and mitochondrial DNA copy number, and sustained opening of mitochondrial permeability transition pores in the heart tissues of the offspring. These results indicated that PAE had adverse effects on the cardiac structure and function of the newborn mice and could trigger oxidative stress in their myocardia and contribute to mitochondrial dysfunction.

Community Frontline Care Staff Perspectives on Covid-19 Restrictions: “It’s not what I was hired to do.”

The Covid-19 pandemic presented numerous challenges and changes for all frontline providers, but the impacts on care staff in community service agencies is less understood. The current study involving secondary data analysis explored how frontline care staff with a fetal alcohol spectrum disorder (FASD) program describe their work during the public health restrictions. Semi-structured focus groups were conducted with frontline care staff (N = 20). Inductive thematic analysis resulted in three themes: shifting procedures, adapting interactions, and declining motivation. Changes in work because of Covid-19 and feelings in response to those changes shed light on the as yet unknown cost of the pandemic on these services and the FASD community.

Alcohol intake during pregnancy reduces offspring bone epiphyseal growth plate chondrocyte proliferation through transforming growth factor β-1 inhibition in the Sprague Dawley rat humerus.

Intrauterine alcohol exposure delays bone maturation and intensifies osteoporosis and fracture risk. As most studies emphasize the neurological aspects of intrauterine alcohol exposure, there is a lack of research on the implications pertaining to osseous tissue. Previous studies investigated these effects in fetuses, with limited studies on postnatal life. Postnatal studies are crucial since peak bone growth occurs during adolescence. This study aimed at assessing the effects of prenatal alcohol exposure on the humerus proximal and distal growth plate chondrocytes in 3-week-old rats. Sprague Dawley rats (n=9) were assigned to either the ethanol group (n=3), saline (n=3), and untreated (n=3) group and time-mated. Once pregnant, as confirmed by the presence of a copulation plug, the former 2 groups were treated with 0.015 ml/g of 25.2% ethanol and 0.9% saline. The untreated group received no treatment. The left humeri belonging to 6 pups per group were used. Serial sections were cut with a microtome at 5 μm thickness. These sections were stained with haematoxylin and eosin for assessment of normal morphology or immunolabeled with anti-Ki-67 and transforming growth factor β-1 (TGFβ-1) antibody. Prenatal alcohol exposure adversely effected the growth plate sizes and the number of cells in the proliferative zone. Fewer TGFβ-1 immunopositive and proliferative chondrocytes were found using the anti-Ki-67 antibody. This may explain the growth retardation in offspring exposed to gestational alcohol, showing that gestational alcohol exposure inhibits cell proliferation, aiding the diminished stature.

Use and effectiveness of musical social story therapy in children with developmental disorders (down syndrome, autism spectrum disorder, fragile x syndrome, fetal alcohol spectrum disorder, cerebral palsy and adhd)

When human nature is examined, we find evidence that humans have created themselves through art since prehistoric times. Man has always used art as a form of self-expression. The pictures drawn on cave walls in the lightless periods of the world are the biggest proof that people always use art as a means of self-expression. Experimental studies in the field of neuroart and neuroaesthetics in recent years clearly show how the human brain reaches a developmental line with artistic stimuli. At this point, it is important to support children in neurodevelopmental sense and to bring them together with artistic stimuli. Activation of the orbitofrontal cortex with the stimulations of art creates tremendous results in terms of increasing synaptic connectivity in the child's brain. One of the most effective methods that can be used on the subject is Musical Social Stories Therapy in this sense. Studies show the important outputs of the method in children with developmental disorders (down syndrome, autism spectrum disorder, fragile x syndrome, fetal alcohol spectrum disorder, cerebral palsy and ADHD). In this sense, the method in question is especially suitable for children to increase motivation, to gain experience in creative expression and emotional reactions, to express emotions, thoughts and experiences comfortably, to develop self-esteem, to calm down and rest, to increase self-worth, to develop listening skills, to develop auditory perception, attention span. It is effective in the development of language use, development in language, motor, cognitive, self-care, social development, effective and permanent learning processes. Our related research aims to make positive contributions to the dissemination of the related method by addressing the history and usage areas of musical social stories therapy.

Prenatal Exposures, Diagnostic Outcomes, and Life Experiences of Children and Youths with Fetal Alcohol Spectrum Disorder.

Children and youths diagnosed with FASD may experience a range of adverse health and social outcomes. This cross-sectional study investigated the characteristics and outcomes of children and youths diagnosed with FASD between 2015 and 2018 at the Sunny Hill Centre in British Columbia, Canada and examined the relationships between prenatal substance exposures, FASD diagnostic categories, and adverse health and social outcomes. Patient chart data were obtained for 1187 children and youths diagnosed with FASD and analyzed. The patients (mean age: 9.7 years; range: 2-19) had up to 6 physical and 11 mental health disorders. Prenatal exposure to other substances (in addition to alcohol) significantly increased the severity of FASD diagnosis (OR: 1.18): the odds of FASD with sentinel facial features (SFF) were 41% higher with prenatal cigarette/nicotine/tobacco exposure; 75% higher with exposure to cocaine/crack; and two times higher with exposure to opioids. Maternal mental health issues and poor nutrition also increase the severity of FASD diagnosis (60% and 6%, respectively). Prenatal exposure to other substances in addition to alcohol significantly predicts involvement in the child welfare system (OR: 1.52) and current substance use when adjusted for age (aOR: 1.51). Diagnosis of FASD with SFF is associated with an increased number of physical (R2 = 0.071, F (3,1183) = 30.51, p = 0.000) and mental health comorbidities (R2 = 0.023, F (3,1185) = 9.51, p = 0.000) as compared to FASD without SFF adjusted for age and the number of prenatal substances. Screening of pregnant women for alcohol and other substance use, mental health status, and nutrition is extremely important.

Prenatal exposure to alcohol and its impact on reward processing and substance use in adulthood

Heavy maternal alcohol drinking during pregnancy has been associated with altered neurodevelopment in the child but the effects of low-dose alcohol drinking are less clear and any potential safe level of alcohol use during pregnancy is not known. We evaluated the effects of prenatal alcohol on reward-related behavior and substance use in young adulthood and the potential sex differences therein. Participants were members of the European Longitudinal Study of Pregnancy and Childhood (ELSPAC) prenatal birth cohort who participated in its neuroimaging follow-up in young adulthood. A total of 191 participants (28–30 years; 51% men) had complete data on prenatal exposure to alcohol, current substance use, and fMRI data from young adulthood. Maternal alcohol drinking was assessed during mid-pregnancy and pre-conception. Brain response to reward anticipation and reward feedback was measured using the Monetary Incentive Delay task and substance use in young adulthood was assessed using a self-report questionnaire. We showed that even a moderate exposure to alcohol in mid-pregnancy but not pre-conception was associated with robust effects on brain response to reward feedback (six frontal, one parietal, one temporal, and one occipital cluster) and with greater cannabis use in both men and women 30 years later. Moreover, mid-pregnancy but not pre-conception exposure to alcohol was associated with greater cannabis use in young adulthood and these effects were independent of maternal education and maternal depression during pregnancy. Further, the extent of cannabis use in the late 20 s was predicted by the brain response to reward feedback in three out of the nine prenatal alcohol-related clusters and these effects were independent of current alcohol use. Sex differences in the brain response to reward outcome emerged only during the no loss vs. loss contrast. Young adult men exposed to alcohol prenatally had significantly larger brain response to no loss vs. loss in the putamen and occipital region than women exposed to prenatal alcohol. Therefore, we conclude that even moderate exposure to alcohol prenatally has long-lasting effects on brain function during reward processing and risk of cannabis use in young adulthood.

Fetal Brain-Derived Exosomal miRNAs from Maternal Blood: Potential Diagnostic Biomarkers for Fetal Alcohol Spectrum Disorders (FASDs).

Fetal alcohol spectrum disorders (FASDs) are leading causes of neurodevelopmental disability but cannot be diagnosed early in utero. Because several microRNAs (miRNAs) are implicated in other neurological and neurodevelopmental disorders, the effects of EtOH exposure on the expression of these miRNAs and their target genes and pathways were assessed. In women who drank alcohol (EtOH) during pregnancy and non-drinking controls, matched individually for fetal sex and gestational age, the levels of miRNAs in fetal brain-derived exosomes (FB-Es) isolated from the mothers' serum correlated well with the contents of the corresponding fetal brain tissues obtained after voluntary pregnancy termination. In six EtOH-exposed cases and six matched controls, the levels of fetal brain and maternal serum miRNAs were quantified on the array by qRT-PCR. In FB-Es from 10 EtOH-exposed cases and 10 controls, selected miRNAs were quantified by ddPCR. Protein levels were quantified by ELISA. There were significant EtOH-associated reductions in the expression of several miRNAs, including miR-9 and its downstream neuronal targets BDNF, REST, Synapsin, and Sonic hedgehog. In 20 paired cases, reductions in FB-E miR-9 levels correlated strongly with reductions in fetal eye diameter, a prominent feature of FASDs. Thus, FB-E miR-9 levels might serve as a biomarker to predict FASDs in at-risk fetuses.

Evaluation of the Fetal Alcohol Spectrum Disorder Hub Australia website.

To evaluate use and utility of the Fetal Alcohol Spectrum Disorder (FASD) Hub Australia website. Online REDCap user survey incorporating the Website Evaluation Questionnaire, open ended questions, Google metrics data and an accessibility audit. Seventy-six participants: researchers (32%), health professionals (29%) and policymakers/advocates (16%) completed the survey. Most were from Australia (95%) and were likely or very likely to recommend the FASD Hub to colleagues (92%), friends (74%) and patients (72%). The mean Website Evaluation Questionnaire score was at least 3.45/5 for all dimensions (ease of use, hyperlinks, structure, relevance, comprehension, completeness, layout, search option); range 3.45 (search option) to 4.04 (relevance). Participants found the content trustworthy (92%) but wanted more information for, and to support, Aboriginal and Torres Strait Islander peoples, and improved search capacity. Google metrics identified 25,534 unique users over 6 months (82% new users); 83% aged 18-44 years, 72% female and 35% international. Users found the FASD Hub accessible, authoritative and useful and suggested improvements.

Contribution of ferritin and zinc to adverse infant outcomes among pregnancies with prenatal alcohol exposure in South Africa

Nutritional status during pregnancy can impact fetal development, yet less is known about how alcohol may interact with nutritional status to influence infant outcomes. Pregnant women (n=196) completed 2, 24-hour dietary recalls and provided a venous blood sample to be analyzed for liver enzymes (GGT –gamma-glutamyl transferase; ALT –alanine transaminase; and AST –aspartate transferase), iron, ferritin, and zinc concentrations. Infants were assessed at 6 weeks of age. Women who consumed alcohol had significantly higher ferritin levels compared to non-drinkers (51.8 vs. 34.2). While 44% of women had ferritin <30 ug/L (an indicator of iron deficiency), and 24% of women were low in serum iron, and 72% were low in serum zinc. All six drinking measures for 1st trimester and previous week were significantly correlated with GGT and AST levels while 4 out of 6 alcohol measures were associated with levels of ALT and ferritin. At six weeks of age, nearly all physical measures differentiated infants with alcohol exposure from infants without exposure. Controlling for six covariates, maternal ferritin was significantly and inversely associated with infant head circumference (OFC) centile among infants with alcohol exposure. GGT was inversely associated with infant height and weight centile among unexposed infants. Seventy-four percent (74%) of mothers who consumed alcohol were found to be low in serum zinc, yet higher maternal zinc was associated with more dysmorphology. This may indicate that higher zinc status is not protecting the fetus from the teratogenic effects of alcohol. Prenatal alcohol exposure, ferritin, and zinc status influence infant growth and neurodevelopment.

Effects of Developmental Timing on Cognitive and Behavioral Profiles in Fetal Alcohol Spectrum Disorder: Considerations for Education.

Associations and families demand the need to raise awareness of the implications in the cognitive and behavioral development of children with Fetal Alcohol Spectrum Disorder (FASD) that affect their learning and school participation. This study aims to generate a profile of executive and behavioral functioning in children and adolescents diagnosed with FASD. A probabilistic sampling by clusters (associations for individuals with FASD) is applied. The sample is composed of 66 families from three associations. The BRIEF-2 and SENA tests were administered to assess executive and behavioral functioning domains. Data analysis found that the executive and behavioral functioning profile of individuals with FASD varies with age, with greater impairment in middle and late adolescence. Likewise, the domain of executive functioning most affected in any of the developmental stages is working memory. Finally, cognitive impairment in the executive functioning domains has a direct impact on the social and adaptive functioning of people with FASD.

Qualitative study of the lived experience of methylphenidate prescribed for children with a fetal alcohol spectrum disorder.

Fetal Alcohol Spectrum Disorders (FASD) refer to physical, cognitive, and behavioural symptoms in an individual whose mother consumed alcohol during pregnancy. It is the leading cause of non-genetic avoidable mental disability, with an estimated worldwide prevalence of 1%. Attention Deficit Hyperactivity Disorder (ADHD) diagnostic criteria are met for 50-80% of patients with FASD. Methylphenidate (MPH) is the first-line pharmacological treatment for ADHD. This study aims to explore the lived experience of children with FASD taking MPH and their caregivers to adapt prescribing modalities by considering different ways to administer the drugs. We hope to improve the therapeutic alliance between the children and their caregivers by gaining an insiders' view of the medication perception. Semi-structured interviews with children and their caregivers were conducted in this qualitative study. Data collection by purposive sampling continued until we reached theoretical sufficiency. Data were analysed using interpretative phenomenological analysis. We conducted 16 semi-structured interviews: 8 with the children aged 7-12, 5 boys and 3 girls and 8 with their caregivers. The analysis showed that inadequate palatability and capsule form experiences were the leading causes of children's non-adherence to the treatment. MPH appeared to be a valuable aid for caregivers even if they had concerns about its potential toxicity. However, it is necessary to identify caregivers' expectations concerning MPH to adapt the prescription in terms of choice of specialty and intake modalities. Regular support was required to reduce caregivers' fears of dependence, personality transformation and long-term adverse effects. Information on palatability should be given when prescribing MPH to children with ADHD as well as its possible side effects or toxicity. It highlights the need for further studies of the experience of palatability of drugs prescribed to children. When prescribing a treatment, children should be more involved in medical counselling and it is necessary to understand the child's perspectives to co-construct common representations for better therapeutical adherence.

Effects of prenatal alcohol exposure on the olfactory system development.

Fetal Alcohol Spectrum Disorders (FASD), resulting from maternal alcohol consumption during pregnancy, are a prominent non-genetic cause of physical disabilities and brain damage in children. Alongside common symptoms like distinct facial features and neurocognitive deficits, sensory anomalies, including olfactory dysfunction, are frequently noted in FASD-afflicted children. However, the precise mechanisms underpinning the olfactory abnormalities induced by prenatal alcohol exposure (PAE) remain elusive. Utilizing rodents as a model organism with varying timing, duration, dosage, and administration routes of alcohol exposure, prior studies have documented impairments in olfactory system development caused by PAE. Many reported a reduction in the olfactory bulb (OB) volume accompanied by reduced OB neuron counts, suggesting the OB is a brain region vulnerable to PAE. In contrast, no significant olfactory system defects were observed in some studies, though subtle alterations might exist. These findings suggest that the timing, duration, and extent of fetal alcohol exposure can yield diverse effects on olfactory system development. To enhance comprehension of PAE-induced olfactory dysfunctions, this review summarizes key findings from previous research on the olfactory systems of offspring prenatally exposed to alcohol.

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.

Reduction of APOE accounts for neurobehavioral deficits in fetal alcohol spectrum disorders.

A hallmark of fetal alcohol spectrum disorders (FASD) is neurobehavioral deficits that still do not have effective treatment. Here, we present that reduction of Apolipoprotein E (APOE) is critically involved in neurobehavioral deficits in FASD. We show that prenatal alcohol exposure (PAE) changes chromatin accessibility of Apoe locus, and causes reduction of APOE levels in both the brain and peripheral blood in postnatal mice. Of note, postnatal administration of an APOE receptor agonist (APOE-RA) mitigates motor learning deficits and anxiety in those mice. Several molecular and electrophysiological properties essential for learning, which are altered by PAE, are restored by APOE-RA. Our human genome-wide association study further reveals that the interaction of PAE and a single nucleotide polymorphism in the APOE enhancer which chromatin is closed by PAE in mice is associated with lower scores in the delayed matching-to-sample task in children. APOE in the plasma is also reduced in PAE children, and the reduced level is associated with their lower cognitive performance. These findings suggest that controlling the APOE level can serve as an effective treatment for neurobehavioral deficits in FASD.

Adaptive, Externalizing, and Internalizing Behavior of Children with Prenatal Alcohol Exposure: A Comparison of Three Parent-Report Questionnaires

ABSTRACT This study compared the Behavior Assessment System for Children-Third Edition (BASC-3) to the Child Behavior Checklist (CBCL) and the Vineland Adaptive Behavior Scales-Third Edition (VABS-3) in children with and without histories of prenatal alcohol exposure. Data were collected from Collaborative Initiative on Fetal Alcohol Spectrum Disorders Phase 4 sites. Caregivers rated their child’s behavior using three questionnaires: BASC-3, CBCL, and VABS-3. BASC-3 Adaptive Skills, Externalizing Problems, and Internalizing Problems scores were correlated with comparable scores from the CBCL (Externalizing and Internalizing Problems) and VABS-3 (Adaptive Skills) both within and across groups. Sensitivity, specificity, and positive and negative predictive values were calculated for the BASC-3. BASC-3 sensitivity rates were 78.1%, 80.5%, and 47.0% and specificity rates were 79.4%, 80.4%, and 81.5% for Adaptive Skills, Externalizing Problems, and Internalizing Problems, respectively. Positive predictive values were 87.1%, 88.0%, and 81.9% and negative predictive values were 67.0%, 69.8%, and 46.3% for Adaptive Skills, Externalizing Problems, and Internalizing Problems, respectively. Results replicated previous reports of behavioral and adaptive difficulties in children with prenatal alcohol exposure. These findings provide support for using the BASC-3 in this population.

Risk and Resilience Variants in the Retinoic Acid Metabolic and Developmental Pathways Associated with Risk of FASD Outcomes.

Fetal Alcohol Spectrum Disorder (FASD) is a common neurodevelopmental disorder that affects an estimated 2-5% of North Americans. FASD is induced by prenatal alcohol exposure (PAE) during pregnancy and while there is a clear genetic contribution, few genetic factors are currently identified or understood. In this study, using a candidate gene approach, we performed a genetic variant analysis of retinoic acid (RA) metabolic and developmental signaling pathway genes on whole exome sequencing data of 23 FASD-diagnosed individuals. We found risk and resilience alleles in ADH and ALDH genes known to normally be involved in alcohol detoxification at the expense of RA production, causing RA deficiency, following PAE. Risk and resilience variants were also identified in RA-regulated developmental pathway genes, especially in SHH and WNT pathways. Notably, we also identified significant variants in the causative genes of rare neurodevelopmental disorders sharing comorbidities with FASD, including STRA6 (Matthew-Wood), SOX9 (Campomelic Dysplasia), FDG1 (Aarskog), and 22q11.2 deletion syndrome (TBX1). Although this is a small exploratory study, the findings support PAE-induced RA deficiency as a major etiology underlying FASD and suggest risk and resilience variants may be suitable biomarkers to determine the risk of FASD outcomes following PAE.

Development and psychometric evaluation of a questionnaire to measure university students' knowledge on the effects of alcohol use during pregnancy.

Alcohol consumption during pregnancy can lead to fetal alcohol spectrum disorders. This study developed and validated a questionnaire to assess university students' knowledge regarding the effects of alcohol during pregnancy. We designed an instrument with true-false-I do not know statements. Initially, 45 true statements were formulated and subjected to content validation by 19 experts. Based on the Content Validity Index (CVI), 17 items were selected. The instrument, called the Fetal Alcohol Consequences Test (FACT), was first assessed by 31 university students for the level of understanding. Then, the questionnaire was administered to a national Brazilian sample of university students, and an Exploratory Factor Analysis (EFA) was conducted. Each correct FACT answer was worth 1 point, and the knowledge was categorized as high (total score ≥ 80%), moderate (score between 60 and 79%), and low (score ≤ 59%). When the questionnaire was being designed, the CVI values ranged from 0.779 to 1.0, and all statements were considered suitable by the target audience. For psychometric evaluation, 768 students from 24 Brazilian states participated. In the EFA, five statements were removed, revealing a tool with 12 items and two latent factors: "fetal alcohol spectrum disorders" and "conceptions and guidance on alcohol consumption during pregnancy." The KMO index (0.76426) and Bartlett's sphericity test (6362.6, df = 66, p < 0.00001) both supported the final EFA model. The goodness-of-fit indices for the factor structure were adequate: χ2 = 119.609, df = 43, p < 0.00001; RMSEA = 0.048; CFI = 0.977; TLI = 0.965. The mean total FACT score among participants was 7.71 ± 2.98, with a median of 8; 32.03% of the students had high (10-12 points), 24.09% moderate (8-9 points), and 43.88% low knowledge (<8 points). The questionnaire proved reliable, with a floor effect of 1.17%, a ceiling effect of 9.25%, and a Cronbach's alpha index of 0.798. The FACT can be utilized in university students' health education processes, contributing to greater knowledge and information dissemination about the effects of alcohol during pregnancy, in addition to the formulation of policies on the subject directed to this group of young adults.

FASD: The Living Experience of People with Fetal Alcohol Spectrum Disorder—Results of an Anonymous Survey

Fetal Alcohol Spectrum Disorder (FASD) is considered a lifelong disability that has been framed with neurobiological descriptions focused on the brain. These are important features but fail to tell the story of living with FASD. By surveying those with FASD, this work expanded upon prior survey work which illustrated a multitude of early-onset physiological issues occurring at rates much higher than is typical of the general population. The current project, again using an anonymous survey methodology, sought to open up other direct experiences to better understand the complexity of living with FASD. An anonymous online survey was used to gather data on adversity in childhood, schooling, employment, housing and finances, and involvement with the criminal justice system, as well as relationships and parenting. Results indicate high levels of adversity throughout the life span; vulnerability to manipulation, which is connected to involvement in the criminal justice system; struggles with housing; economic instability; and struggles maintaining employment, as well as difficulties with social and familial relationships. Systemic stigma was also identified. Suggestions are offered to inform others on how support can be enhanced and targeted with a goal of improving quality of life, as well as dealing with self-imposed stigma. The survey was developed by adults living with FASD who have served as a long-standing advocacy and educational group influencing policy and practice in the field.

Innovating Services for Justice-Involved Individuals with Fetal Alcohol Spectrum Disorder: The In Reach Project

ABSTRACT Fetal Alcohol Spectrum Disorder (FASD) is a term describing the range of neurocognitive, physical, behavioral, and learning difficulties resulting from prenatal alcohol exposure. Individuals with FASD are at an increased risk, relative to those without FASD, for justice system involvement. To address this concern, the Willow Winds Support Network developed and implemented the In Reach project to provide FASD-specific services and supports to residents and staff of justice facilities in Alberta, Canada. Semi-structured interviews revealed facilitators of the project’s success, emerging outcomes, and the perceived need for FASD-specific services in justice facilities. Research, practice, and policy implications are discussed.