A content analysis of caregiver perspectives on strengths and protective factors in youth with FASD and criminal legal system involvement

An updated systematic review of the literature on fetal alcohol spectrum disorder and the criminal legal system.

Youth with fetal alcohol spectrum disorder (FASD) are overrepresented in the criminal legal system (CLS). There is greater recognition among scholars, policymakers, and professionals of the importance of strengths-based approaches for this population. The current scoping review (preregistered on the Center for Open Science; DOI: 10.17605/OSF.IO/6WAZE) aimed to determine what strengths and protective factors have been investigated for youth with FASD in the CLS, and how these have been identified, defined, and measured. Results identified an emerging body of literature of 16 peer reviewed articles. Strengths were often nested within deficit-based conversations and included individual (e.g. kindness), relational (e.g. caregiver support), and broader contextual level strengths (e.g. early diagnosis). To foster consistency, understanding, and better support this group, future research should purposefully incorporate strengths and protective factors into research and intervention frameworks and improve conceptual clarity when describing strengths and protective factors in this population.

People with fetal alcohol spectrum disorder (FASD) present challenges to those who work in the criminal legal system. Prenatal exposure to alcohol can cause physical, neurological, and psychological impairments. It is vital to understand the individual offender in order to address the underlying reasons for criminal behavior. Individuals with FASD often come from dysfunctional backgrounds, and may have mental illnesses and substance use disorders. A comprehensive medical-legal report, prepared by a professional experienced with FASD, can help judges and lawyers understand how complex the interactions are among brain damage, genetics, and the environment. The person with FASD can be misunderstood in court, victimized in jails, and mismanaged in the transition back to the community, unless those working with the individual are aware of FASD and its implications.

Criminal legal system contact in fetal alcohol spectrum disorders (FASD): Experiences and support needs.

Caregivers supporting adults with fetal alcohol spectrum disorder (FASD) report concerns regarding living arrangements and services for their adult children with FASD. Best practices for living support for adults with FASD are under-researched, and few studies have explored the experiences of caregivers whose children are adults. This study examined the perspectives of caregivers who support adults (18+) with FASD regarding: (1) current ways adults with FASD are supported with daily life activities; and (2) ideal future living arrangements and supports. This article presents findings from the perspective of caregivers who support adults with FASD, as part of a broader project involving both adults with FASD and caregivers. Semi-structured interviews were conducted with 11 Canadian caregivers who live at home with an adult with FASD (aged 18+). Responses were examined using framework analysis, a structured approach to analyzing qualitative data. Caregivers described their experiences and perspectives regarding: (1) current ways adults with FASD are supported in their daily activities; (2) strategies for successful support; (3) ideal future living arrangements and supports; and (4) concerns for the future. Notably, almost every participant raised pressing concerns regarding the future living arrangements for the person they support once they are no longer able to provide care. This study explores caregivers' perspectives regarding living support needed by adults with FASD, which can inform support programs and housing services. Findings demonstrate an urgent need for policy change directed toward developing available, affordable, and appropriate housing for adults with FASD.

INTRODUCTION: International studies and New Zealand publications note that care groups, as well as youth and adult justice populations, have high rates of fetal alcohol spectrum disorder (FASD) and other neuro-disabilities, alongside mental health problems and adverse childhood experiences. This research explores justice practitioner views of helping young people living with FASD, especially when they come into contact with the youth justice system in Aotearoa New Zealand. METHODS: Semi-structured interviews were undertaken with 11 practitioners that included social workers, disability advocates, police, legal professionals, and others working in the justice space with youth living with FASD. Stakeholders were asked what practices might help youth do well in the justice space, but also what changes need to happen in systems of health, care, justice or disability in order to ensure those living with FASD have wellbeing. FINDINGS: Practitioners noted widespread ignorance about FASD, resulting in delays in getting appropriate supports for youth living with FASD. Practitioners spoke of the importance of early diagnosis leading to early intervention but how rare that was. Wellbeing of youth was vital but there were too many barriers to fair and equal participation for youth living with FASD in all aspects of society. All systems needed to understand FASD and provide specialist FASD services and supports. PRACTICE IMPLICATIONS: Urgent training and practice guidance is required for all professionals working in the youth justice space. Practice needs to ensure disability rights are upheld to enable flourishing and participation by young people often on the margins of society.

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.

Another Step Forward in Relating Facial and Brain Dysmorphologies Associated with Prenatal Alcohol Exposure

Alcohol and tobacco are known teratogens. Historically, more severe prenatal alcohol exposure (PAE) and prenatal tobacco exposure (PTE) have been examined as the principal predictor of neurodevelopmental alterations, with little incorporation of lower doses or ecological contextual factors that can also impact neurodevelopment, such as socioeconomic resources (SER) or adverse childhood experiences (ACEs). Here, a novel analytical approach informed by a socio-ecological perspective was used to examine the associations between SER, PAE and/or PTE, and ACEs, and their effects on neurodevelopment. N = 313 mother-child dyads were recruited from a prospective birth cohort with maternal report of PAE and PTE, and cross-sectional structural brain neuroimaging of child acquired via 3T scanner at ages 8-11 years. In utero SER was measured by maternal education, household income, and home utility availability. The child's ACEs were measured by self-report assisted by the researcher. PAE was grouped into early exposure (<12 weeks), continued exposure (>=12 weeks), and no exposure controls. PTE was grouped into exposed and non-exposed controls. Greater access to SER during pregnancy was associated with fewer ACEs (maternal education: β = -0.293,p = 0.01; phone access: β = -0.968,p = 0.05). PTE partially mediated the association between SER and ACEs, where greater SER reduced the likelihood of PTE, which was positively associated with ACEs (β = 1.110,p = 0.01). SER was associated with alterations in superior frontal (β = -1336.036, q = 0.046), lateral orbitofrontal (β = -513.865, q = 0.046), caudal anterior cingulate volumes (β = -222.982, q = 0.046), with access to phone negatively associated with all three brain volumes. Access to water was positively associated with superior frontal volume (β=1569.527, q = 0.013). PTE was associated with smaller volumes of lateral orbitofrontal (β = -331.000, q = 0.033) and nucleus accumbens regions (β = -34.800, q = 0.033). Research on neurodevelopment following community-levels of PAE and PTE should more regularly consider the ecological context to accelerate understanding of teratogenic outcomes. Further research is needed to replicate this novel conceptual approach with varying PAE and PTE patterns, to disentangle the interplay between dose, community-level and individual-level risk factors on neurodevelopment.

Back to table of contents Previous article Next article Clinical & ResearchFull AccessPatients With Prenatal Alcohol Exposure Frequently Misdiagnosed, Face Multiple ChallengesMansfield Mela, M.B.B.S., M.Sc.Psych.Mansfield MelaSearch for more papers by this author, M.B.B.S., M.Sc.Psych.Published Online:22 Dec 2022https://doi.org/10.1176/appi.pn.2023.01.1.12AbstractThere is a high prevalence of diagnosable mental disorders in youth and adults who were exposed prenatally to alcohol. More than 80% of those identified in studies as adversely affected by prenatal alcohol exposure were misdiagnosed with other mental diagnoses.iStock/nattrassMultiple organs of the fetus are at risk of damage from the teratogenic effects of alcohol crossing the placenta. Disorders of the skin and endocrine, renal, and cardiac systems are overrepresented among those affected by prenatal alcohol exposure (PAE).The trajectory and long-term outcomes of those with PAE were initially shrouded in mystery. Practitioners in the field then adopted the term invisible disorder for the consequences of PAE. According to the DSM-5, the diagnostic terms fetal alcohol spectrum disorder (FASD) or neurodevelopmental disorder associated with prenatal alcohol exposure (ND-PAE) describe the combined challenges and strengths common in people whose mothers consumed sufficient alcohol at the threshold known to be associated with adverse neurobehavioral effects. Individuals diagnosed with ND-PAE suffer primarily from cognitive and intellectual deficits, including the areas of learning and memory, language, attention, executive functioning, and adaptive and social functioning.Emanating from these primary cognitive deficits are more debilitating secondary disabilities such as psychiatric and behavioral disorders. Characteristically, these individuals present with irritability, impulsivity, poor awareness of risk, and poor communicative functioning. Comorbid conditions include mood, anxiety, substance use, and trauma-related disorders.Rigors of Diagnosis?Early confirmation of FASD/ND-PAE is a protective factor across the lifespan. Multiple schemes for diagnosis endorse a multidisciplinary team approach to identify the clinical features for a FASD/ND-PAE diagnosis. Diagnosis depends on the presence of and threshold criteria for neuropsychological deficits, facial dysmorphic features, growth restriction associated with PAE, and confirmation of alcohol exposure during gestation. Complicating the diagnosis of PAE in children, youth, and adults is the high prevalence (40% to 90%) of diagnosable mental disorders, making it difficult to differentiate the effects of alcohol exposure only. More than 80% of those identified in studies as adversely affected by PAE had previously been labeled with other mental diagnoses. Due to a deficiency in training curricula, the best chance for trainees (especially medical students) to see individuals with PAE is a rotation with a neonatologist interested in dysmorphology.PAE interacts with biosocial factors to produce disease. These genetic, nutritional, and socioeconomic factors combine with childhood adversity to inform the health trajectory of many individuals with PAE. While genetically high rates of mental disorders are common in individuals with PAE, social challenges—namely, substance use disorders, criminality, social exclusion, school failure, unemployment, and suicidality—tend to plague these patients at rates higher than that found in the general population.Role of Clinicians and New Interventions to Streamline TherapyBecause of the inherent gap in clinicians’ knowledge and expertise to diagnose those with PAE, they need a guide to raise their awareness of the complex presentation of FASD/ND-PAE. Clinical blind spots are, therefore, not due to ignorance or a source of blame. Because many patients go undiagnosed, clinical vignettes and other practical clinical strategies for detection and intervention are essential for clinicians.PAE predisposes to brain-based abnormal functioning and bodily defects. Gaps in care and delay in diagnosis are the recognized factors that are associated with negative outcomes in the trajectory of those with PAE. Mislabeling is a consequence of such negative outcomes. As no organ is spared, multiple complaints and symptoms are present in those diagnosed with the consequences of PAE. Multiple factors like shame, guilt, fear of losing offspring, poor memory, and death of the mother limit the information on PAE, which leads to a plethora of diagnoses in PAE patients. Consequently, multiple medications are prescribed to target the many symptoms usually not conceptualized to align with the unifying explanation of PAE. Research depicts the patients as unnecessarily overmedicated, prone to experiencing side effects, and highly dysfunctional. In some studies, the average number of psychotropic medications taken by those with PAE compared with neurotypical patients was three to four times and more.To address this disparity and source of inadequate care, a psychotropic medication algorithm was developed to aid prescribing. The neurocognitive and behavioral manifestations can be divided into four clusters (hyperarousal, affect dysregulation, hyperactive/cognitive, and cognitive inflexibility); different classes of psychotropic medications target each cluster. The algorithm provides psychotropic medication options to help streamline decisions; the risk-benefit ratio of rational pharmacology supports prescription and reduces polypharmacy, a well-intended and necessary outcome.There are specific evidence-based interventions that enhance mood regulation and improve cognition and math skills (see second resource noted at the end of this article). Other treatments target competence in communication, social skills, and self-awareness for socialization and safety and may include traditional group sessions but also individualized programs since learning in a group interferes with skills acquisition.ConclusionFASD/ND-PAE is a multifaceted, lifelong disorder. Early diagnosis and treatment are critical to ensure the best clinical and social outcomes. Because FASD/ND-PAE is not central in medical curricula, clinicians must now take an inquisitive approach to diagnose people affected by prenatal alcohol exposure. Exercising attentive and rigorous efforts to prevent misdiagnosis offer individuals the best chance to receiving appropriate supports early in life. Optimal functioning of individuals instead of labels should be each clinician’s goal and focus in supporting those diagnosed with FASD/ND-PAE. ■“Treatment Algorithm for the Use of Psychopharmacological Agents in Individuals Prenatally Exposed to Alcohol and/or With Diagnosis of Fetal Alcohol Spectrum Disorder (FASD)”“FASDs: Treatments”Mansfield Mela, M.B.B.S., M.Sc.Psych., is director of the Centre for Forensic Behavioral Science and Justice Studies and the diagnostic research lead of the Canada Fetal Alcohol Spectrum Disorder Research Network. He is the author of Prenatal Alcohol Exposure: A Clinician’s Guide from APA Publishing. APA members may purchase the book at a discount. ISSUES NewArchived

Background Individuals diagnosed with Fetal Alcohol Spectrum Disorder (FASD) have a heterogeneous range of neurodevelopmental impairments with lifelong impacts on functioning. In Canada, a FASD diagnosis is made through a multidisciplinary team assessment, using the 2015 Canadian FASD Diagnostic Guidelines. Studies show that early diagnosis and intervention reduces secondary FASD related disabilities and improves outcomes in adulthood. However, little has been published about accessibility of services and intervention for children diagnosed with FASD in Canada. Objectives The current study explores the lived experiences of caregivers in (1) undergoing a diagnostic assessment for FASD and (2) obtaining services and interventions for their child in the first two years following diagnosis. Using a qualitative approach, the study aimed to identify strengths and gaps in the system with respect to supporting Canadian children with FASD and their families. Design/Methods Seventy one (71) children were diagnosed with FASD/At Risk for FASD over a one year period at a tertiary Developmental Assessment Center in Canada. Through non-random convenience sampling, 18 caregivers (the child’s legal guardians: 1 biological parent, 9 adoptive parents, 6 family guardians and 2 social workers) consented to participate in semi-structured interviews. Interviews explored caregiver experiences with the FASD diagnostic process as well as access to supports and intervention services after diagnosis. Interviews were transcribed and analyzed using reflexive thematic analysis. Results The following overarching themes were identified: (1) The journey of raising a child with FASD is overwhelming for caregivers; (2) The assessment process was both affirming and disheartening for caregivers; (3) There are significant, multi-level, systemic barriers to accessing supports for children with FASD, and their caregivers; (4) Equity deserving caregivers and their children are particularly vulnerable to falling through the cracks of the medical, educational, and social systems. Within each theme, subthemes further highlight protective factors and specific gaps in the system in supporting children and their families with respect to early intervention, educational/vocational, community and family support. Conclusion Children newly diagnosed with FASD are falling through the cracks of our healthcare system. There are clear disparities in the accessibility of intervention and support for children with developmental differences, even with a diagnosis. Wrap around support is needed for children with FASD and their families, as soon as functional impairments are recognized. A formal funding and support system, based on function, is essential for all children with developmental differences - including children with FASD.

People with fetal alcohol spectrum disorders (FASD) experience significant behavioral and academic challenges and high rates of exclusionary discipline practices (EDP). This study investigated teachers' perspectives on barriers and facilitators to recognizing students with FASD in the classroom, and how teachers develop and use preventative strategies to support students with FASD. Qualitative interviews were conducted with 23 teachers with experience educating students with FASD. Data analysis used a phenomenological approach and content analysis. Teachers identified barriers to recognition of students with FASD, including lack of diagnosis, stigma and discrimination, variability and inconsistency in skills, and compensatory strategies. Experienced teachers could recognize students with FASD and effectively supported students by tailoring existing strategies to the student's profile, building a positive relationship with the student, reframing their understanding of the student's behavior, and collaborating with others. Results indicate experienced teachers' potential to reduce adverse outcomes and EDP for students with FASD.

Considering Prenatal Alcohol Exposure in a Developmental Origins of Health and Disease Framework.

Information for Readers

Fetal Alcohol Spectrum Disorders: An Overview for Pediatric and Adolescent Care Providers