Fetal Alcohol Spectrum Disorder Assessment Research Articles

Advancing social work curriculum to challenge FASD-related stigma and promote strengths-based family engagement

ABSTRACT The need for professionals to become educated in fetal alcohol spectrum disorder (FASD) has emerged as a critical topic in child and family settings. FASD is sometimes described as being entirely preventable implying blame toward mothers and negative attitudes toward people with FASD. Without preservice education to address stigma associated with FASD, social workers are at risk of exacerbating deficit-based models of FASD care. Guided by an Australian study with health professionals who have skills in FASD assessment and care, this paper advances an agenda for social work curriculum capable of challenging FASD-related stigma to promote strengths-based family engagement.

Australian psychologists' knowledge, confidence, and practices in fetal alcohol spectrum disorder diagnostic assessment.

Fetal alcohol spectrum disorder (FASD) is a neurodevelopmental disorder caused by prenatal alcohol exposure (PAE). There are many documented barriers to FASD diagnostic assessment, including a limited number of trained clinicians. This study aimed to establish baseline levels of Australian psychologists' knowledge and practices in FASD assessment to develop training and improve future diagnostic capacity. An online survey was completed by 106 Australian psychologists. The survey elicited respondents' demographics, knowledge about FASD, confidence in various aspects of assessment and perceived future training needs. Respondents reported a broad understanding of the FASD diagnostic term and potential harm of prenatal alcohol exposure (PAE). However, most respondents were not confident in their ability to conduct the psychometric assessments that provide a diagnostic assessment of FASD or ask about PAE. There was a significant positive correlation between the number of correct knowledge items and the psychologists' confidence in conducting FASD assessments. The clinical neuropsychologists demonstrated significantly greater knowledge and confidence in applying FASD diagnostic criteria and assessing PAE than school, clinical, and other psychologists. Most psychologists were more confident in their ability to apply the diagnostic criteria for other neurodevelopmental disorders. Recognition of FASD is growing in Australia, however, further work is required to improve clinicians' understanding of and confidence in completing FASD assessments. Most participants indicated a preference for online training to learn more about FASD assessment.

Exploring resource implications and models of care for assessment and diagnosis of fetal alcohol spectrum disorder: A scoping review.

Previous reviews have examined annual mean costs of care for individuals with fetal alcohol spectrum disorder (FASD), costs of the health burden, costs to the justice system, productivity losses for caregivers, and both the monetary and nonmonetary costs of reduced quality of life. However, because there have been no published reviews focused on understanding the resource implications and specific service features for the assessment and diagnostic process for FASD, the current scoping review investigated the available evidence on these topics. Eligible studies were identified through a systematic search of six databases and included if they contained information on the potential costs or models of care associated with undertaking an assessment for FASD. Data were charted, underwent content analysis, and were reported according to the PRISMA extension for scoping reviews. Eleven studies were included in the final qualitative synthesis. The primary patient costs were attributed to the lengthy time required for diagnosis (up to 47 h). The primary service costs were attributed to costs of clinicians and support personnel and the involvement of multidisciplinary teams in the assessment process. Estimates of the specific dollar values of diagnostic costs were limited and varied between studies. Several models of care were explored, primarily in Canadian clinics, which aimed to capitalize on available services to improve accessibility and patient care and reduce service costs. This study provides important preliminary insights into the resource implications and models of care involved in the diagnostic assessment of FASD. However, the low number of available studies and variability in available data highlight the need for formal costing studies and detailed information gathering on available models of care to inform future clinical practice and policy development.

Client Perceptions of an FASD-Informed Indigenous Restorative Justice Program

Individuals with fetal alcohol spectrum disorder (FASD) can experience multiple layers of adversity that increase vulnerability to justice involvement. Given the systemic overrepresentation of Indigenous Peoples in the justice system, community-based interventions are important for supporting Indigenous individuals with FASD who are justice-involved, yet little is known about individual experiences with such interventions. In this community-based study, we conducted interviews with 12 adults in an FASD-informed Indigenous justice program, revealing stories of coping, growth, and hope. Findings suggest that blending FASD assessment with restorative justice approaches can contribute to physical, human, family/social, and community/cultural resources that support wellbeing. We describe tangible strengths and processes to leverage in practice and policy for supporting justice-involved individuals with FASD across settings and communities.

Fetal Alcohol Spectrum Disorders and Social Work Practice in Australia: A Narrative Literature Review

ABSTRACT In Australia, it has been well documented that the leading preventable cause of nongenetic neurodevelopmental disability (NDD) is Fetal Alcohol Spectrum Disorder (FASD). This review explores literature informing Australian social work in the context of FASD. It highlights the need for increased social work research to inform evidence-based practice (EBP) in FASD diagnosis and management using the biopsychosocial-spiritual-cultural (BPSSC) framework. Social workers are often first to identify children's emotional, behavioural, and learning difficulties that may be a characteristic of FASD. Nonetheless, there is limited knowledge and understanding about how social workers in Australia address FASD. We argue that research about FASD and social work practice can improve social workers’ understanding of the BPSSC characteristics and management of FASD across the life course and contribute to EBP development in these areas in Australian social work. IMPLICATIONS Social workers have an emerging role in the holistic assessment, diagnosis, and management of FASD in Australia. Social workers are well placed in being first to recognise and identify an individual’s emotional, behavioural, sociocultural, and learning difficulties that are characteristics of FASD. Social workers can contribute to ongoing care in a tailored FASD management plan that links the caregivers to appropriate local community resources, service provision, and disability supports.

Fetal Alcohol Spectrum Disorder and Neuropsychology: Exploring the implications of new NICE quality standards (2022) for neuropsychologists through a pilot assessment service

Recently released NICE Quality Standards for the assessment and diagnosis of Fetal Alcohol Spectrum Disorder (FASD) in children and young people emphasise neuropsychological assessment as an important part of the process. However, for many areas of England & Wales this may not be in line with current service provision. We conducted a scoping study of services within Oxfordshire to understand the current support available for children with possible FASD. In addition, we offered a pilot neuropsychology assessment service for seven children referred by a Community Paediatrician. We found that many services across Oxfordshire work with children who they suspect to have FASD, but no service offers FASD assessment or specific intervention. A trial neuropsychology service confirmed evidence for significant heterogeneity within this population, and therefore the need for careful, hypothesis driven assessment, to which neuropsychologists are well-placed to contribute.

Development of an Australian FASD Indigenous Framework: Aboriginal Healing-Informed and Strengths-Based Ways of Knowing, Being and Doing.

Aboriginal culture intuitively embodies and interconnects the threads of life that are known to be intrinsic to human wellbeing: connection. Therefore, Aboriginal wisdom and practices are inherently strengths-based and healing-informed. Underpinned by an Indigenist research methodology, this article presents findings from a collaboration of Aboriginal and non-Aboriginal peoples to develop an Australian Fetal Alcohol Spectrum Disorder (FASD) Indigenous Framework during 2021 to 2023. The FASD Indigenous Framework unfolds the changes that non-Aboriginal clinicians and Aboriginal peoples each need to make in their respective ways of knowing, being and doing in order to facilitate access to healing-informed, strengths-based and culturally responsive FASD knowledge, assessment, diagnosis and support services among Aboriginal peoples. Drawing on the Aboriginal practices of yarning and Dadirri, written and oral knowledges were gathered. These knowledges were mapped against Aboriginal cultural responsiveness and wellbeing frameworks and collaboratively and iteratively reflected upon throughout. This article brings together Aboriginal wisdom (strengths-based, healing-informed approaches grounded in holistic and integrated support) and Western wisdom (biomedicine and therapeutic models) in relation to FASD. From a place of still awareness (Dadirri), both forms of wisdom were drawn upon to create Australia's first FASD Indigenous Framework, a new practice in the assessment and diagnosis of FASD, which offers immense benefit to equity, justice, support and healing for Aboriginal families with a lived experience of FASD.

An investigation of the utility of the Australian Guide to the diagnosis of fetal alcohol spectrum disorder in young children.

Early diagnosis of children with fetal alcohol spectrum disorder (FASD) assists in implementing critical early support. The challenge lies in having a diagnostic process that enables valid and reliable assessment of domains of functioning in young children, with the added complexity that many children will also have co-occurring exposure to childhood adversity that is likely to impact these domains. The aim of this study was to test a diagnostic assessment of FASD in young children using the Australian Guide to the Diagnosis of FASD. Ninety-four children (aged 3 to 7 years) with confirmed or suspected prenatal alcohol exposure were referred to two specialist FASD clinics for assessment in Queensland, Australia. There was a significant risk profile with 68.1% (n=64) children having had contact with child protection services, and most children living in kinship (n=22, 27.7%) or foster (n=36, 40.4%) care. Forty-one percent of the children were Indigenous Australians. The majority (64.9%, n=61) of children met criteria for FASD, 30.9% were classified as "At Risk" for FASD (n=29), and 4.3% received no FASD diagnosis (n=4). Only 4 (4%) children were rated as severe for the brain domain. Over 60% of children (n=58) had two or more comorbid diagnoses. Sensitivity analyses indicated that the removal of comorbid diagnoses in the Attention, Affect Regulation, or Adaptive Functioning domains resulted in a change in 7 of 47 cases (15%) to an "At Risk" designation. These results highlight the complexity of presentation and the extent of impairment in the sample. The use of comorbid diagnoses to substantiate a "severe" designation in specific neurodevelopmental domains raises the question of whether there were false-positive diagnoses. The complexity of determining causal relationships between exposure to PAE and early life adversity on developmental outcomes continues to be a challenge in this young population.

Preventing Drift through Continued Co-Design with a First Nations Community: Refining the Prototype of a Tiered FASD Assessment.

As part of the broader Yapatjarrathati project, 47 remote health providers and community members attended a two-day workshop presenting a prototype of a culturally-safe, tiered neurodevelopmental assessment that can identify fetal alcohol spectrum disorder (FASD) in primary healthcare. The workshop provided a forum for broad community feedback on the tiered assessment process, which was initially co-designed with a smaller number of key First Nations community stakeholders. Improvement in self-reported attendee knowledge, confidence, and perceived competence in the neurodevelopmental assessment process was found post-workshop, assessed through self-report questionnaires. Narrative analysis described attendee experiences and learnings (extracted from the workshop transcript), and workshop facilitator experiences and learnings (extracted from self-reflections). Narrative analysis of the workshop transcript highlighted a collective sense of compassion for those who use alcohol to cope with intergenerational trauma, but exhaustion at the cyclical nature of FASD. There was a strong desire for a shared responsibility for First Nations children and families and a more prominent role for Aboriginal Health Workers in the assessment process. Narrative analysis from workshop facilitator reflections highlighted learnings about community expertise, the inadvertent application of dominant cultural approaches throughout facilitation, and that greater emphasis on the First Nation’s worldview and connection to the community was important for the assessment process to be maintained long-term. This study emphasised the benefit of continued co-design to ensure health implementation strategies match the needs of the community.

Fetal alcohol spectrum disorder resources for health professionals: a scoping review protocol

IntroductionPeople with fetal alcohol spectrum disorder (FASD) encounter a range of health and allied health providers and require specialised support to ensure health services are provided safely and effectively. Not...

Canadian clinical capacity for fetal alcohol spectrum disorder assessment, diagnosis, disclosure and support to children and adolescents: a cross-sectional study

ObjectiveCanadian fetal alcohol spectrum disorder (FASD) guidelines encourage an age-specific interdisciplinary diagnostic approach. However, there is currently no standard-of-care regarding FASD diagnosis disclosure and few studies document Canadian FASD clinical...

Key Stakeholder Priorities for the Review and Update of the Australian Guide to Diagnosis of Fetal Alcohol Spectrum Disorder: A Qualitative Descriptive Study.

Since the 2016 release of the Australian Guide to the Diagnosis of Fetal Alcohol Spectrum Disorder (FASD), considerable progress has been made in the identification and diagnosis of the disorder. As part of a larger process to review and update the Guide, the aim of this study was to identify review priorities from a broad range of stakeholders involved in the assessment and diagnosis of FASD. Sixty-two stakeholders, including healthcare practitioners, researchers, other specialists, individuals with cultural expertise, lived experience and consumer representatives completed an online survey asking them to describe up to five priorities for the review of the Australian Guide to the Diagnosis of FASD. A total of 267 priorities were described. Content analysis of responses revealed priority areas relating to diagnostic criteria (n = 82, 30.7%), guideline content (n = 91, 34.1%), guideline dissemination (n = 15, 5.6%) and guideline implementation (n = 63, 23.6%). Other considerations included prevention and screening of FASD (n = 16, 6%). Engaging stakeholders in setting priorities will ensure the revised Australian Guide can be as relevant and meaningful as possible for the primary end-users and that it meets the needs of individuals with lived experience who will be most affected by the diagnosis.

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

ObjectiveIndividuals 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.MethodA 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.ResultsIn 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.ConclusionsWith 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.

69 Acceptability of a Virtual Model for Diagnosis for Fetal Alcohol Spectrum Disorder (FASD)

Abstract Primary Subject area Community Paediatrics Background A multidisciplinary team is required for diagnosis and recommendations of fetal alcohol spectrum disorder (FASD). The process involves assessments of growth and facial features, a caregiver interview with the physician, assessment of the patient by a psychologist, speech language pathologist and occupational therapist, and a multidisciplinary meeting of the above clinicians, clinic coordinators, school personnel and other support workers. A final meeting is held with the caregiver to debrief on the team findings, diagnosis, and recommendations. A literature search supported the feasibility of a reliable and accurate assessment of patients that adhere to the recommended Canadian FASD diagnostic guideline. As a result, a “Virtual Model for FASD Diagnosis” was developed. Objectives 1. Pilot a project to assess a Virtual Model of FASD Diagnosis; 2. Promote the model, by webinars, to FASD diagnostic teams nationally and internationally; 3. Survey acceptability of the model among webinar attendees. Design/Methods A literature search revealed that teams used virtual platforms for some components of FASD diagnostic process, but a complete virtual process does not exist. Virtual assessment of motor skills domain was not completed because, in the project team’s experience, this domain is rarely impaired. The project leaders developed a model and partnered with two diagnostic teams to complete a small pilot project of 6 patients, using Telehealth and Gotomeetings as a virtual platform to accommodate patients. Patients were scheduled as per the waitlist for each team. Support workers were trained to be with the patient and the caregiver to support any technological aspects, present testing materials, complete growth measurements and photographs for the photographic software for facial measurements. The coordinator scheduled clinician assessments and caregiver interviews; a multidisciplinary team meeting to discuss findings, diagnoses, and recommendations, and a meeting with the caregiver to debrief. A project member analyzed the photographs to measure the sentinel facial features. A survey of the caregivers, clinicians, support workers, and diagnostic team members was conducted to assess the experience, reliability, and feasibility of the virtual model. Webinars of the model were held (one in Alberta, and one for all of Canada, New Zealand, and Australia). A survey of participants’ pre- and post-webinar use of virtual platforms for part or all of the FASD assessment was completed. Results The results of the pilot project survey (Table 1) confirmed the feasibility, acceptability, and reliability of the virtual model of assessment. The caregivers confirmed that the process was rigorous and acceptable. 40% of team members indicated they would not have been present for an in-person meeting, indicating that the virtual format enabled attendance. Webinar surveys indicated a significantly increased interest in completing at least some portions of the assessment virtually. Conclusion Results indicate that a Virtual Model for FASD diagnosis is feasible, reliable, and acceptable. Increased interest in parts of or the whole project was indicated by teams nationally and internationally. Endorsements increased member attendance for team deliberations when virtual.

Review of Fetal Alcohol Spectrum Disorder (FASD) among Aboriginal and Torres Strait Islander people

Fetal Alcohol Spectrum Disorder (FASD) is a preventable, lifelong disability that disproportionately affects Aboriginal and Torres Strait Islander people. This review provides a comprehensive synthesis of the available information on FASD among Aboriginal and Torres Strait Islander people, with reference to the limitations on population-based data and evaluated programs. The review outlines; the harms of alcohol use in the context of colonisation, cultural perspectives on assessment and diagnosis, effective prevention programs and a summary of state and national policies. Health impacts, educational outcomes and the effects of FASD on vulnerable populations such as children in protection and young people in the justice system, are also discussed. Specific perspectives on why women drink during pregnancy and the role of Aboriginal women in preventing FASD are explored. Recommendations include that there be greater focus on the benefits of involving men in the prevention and management of FASD and that future FASD prevention strategies for Aboriginal and Torres Strait Islander people should be community identified, led, and driven. FASD assessment, treatment and public health programs must also consider the history of trauma incurred by Aboriginal and Torres Strait Islander communities as a result of colonisation.

Ten years of evidence for the diagnostic assessment of preschoolers with prenatal alcohol exposure

The assessment of preschoolers with prenatal alcohol exposure (PAE) is challenging for many diagnostic teams and clinicians. The 2016 Canadian Fetal Alcohol Spectrum Disorder (FASD) diagnostic guidelines describe the assessments recommended for individuals with PAE in various age groups. Interpretation of brain domains constituting global impairment in preschoolers is not well described in the literature, and there has been clinical reluctance to consider the interpretation of clinical assessments as definitively diagnostic in this age group. This study describes the results of 10-year retrospective clinical data of over 300 preschoolers with PAE referred to the Manitoba FASD Centre for assessment of FASD. Preschoolers who met the criteria for a diagnosis of FASD showed significantly greater global developmental impairment, compared with those with PAE alone. They also demonstrated poorer receptive and expressive language abilities when compared with preschoolers who were not diagnosed. Preschoolers with FASD were rated as having more difficulties with executive functioning skills and adaptive functioning skills, compared to their counterparts. Significant deficits were found in fine-motor, visual-motor, and components of gross-motor skills. Importantly, significant sensory processing differences are particularly evident in preschoolers and are important in understanding behavior and in intervention planning. Together, standardized assessment of motor and sensory processing skills, with a comprehensive assessment of language, are significant predictors of FASD diagnosis for preschoolers with PAE.

Connecting People with People: Diagnosing Persons with Fetal Alcohol Spectrum Disorder Using Telehealth.

Fetal alcohol spectrum disorder (FASD) is a diagnostic term used to describe an array of structural, neurocognitive, and behavioral effects that result from prenatal alcohol exposure. While ongoing efforts have been made to increase the capacity of communities to provide early FASD diagnosis, there continues to be on-going challenges, particularly for remote and rural communities. Telehealth is the use of technology to connect communities at a distance and has been effectively used in medicine for several decades. This literature review describes the use of telehealth in FASD and other developmental disabilities and makes recommendations for how telehealth can be used to facilitate the assessment and diagnosis of FASD in rural and remote communities.

Community-based child development service fetal alcohol spectrum disorder assessment: A retrospective clinic audit.

The aims of the current study were to: (i) report on the diagnostic profile of a group of children assessed for fetal alcohol spectrum disorder (FASD) using the Australian Guide to the Diagnosis of FASD; and (ii) to provide information and recommendations for paediatricians and/or multidisciplinary teams conducting FASD assessments, including utilising the Australian Guide to the Diagnosis of FASD, and details of how to do FASD assessment. A retrospective chart review was conducted using relevant demographic and diagnostic data from children assessed for FASD within a community child development service. Results showed the widespread impact of FASD on the brain, with all children showing some level of impairment in at least 5 out of 10 of the neurodevelopmental domains assessed for FASD. Majority of children were diagnosed with co-morbid attention deficit hyperactivity disorder, however, many additional co-morbid diagnoses were evident. The current study detailed the profile of children assessed for FASD and was the first to report the diagnostic profile of children assessed using the Australian Guide to the Diagnosis of FASD within a community child development service. Several recommendations are provided to assist paediatricians and multidisciplinary teams involved in child development assessments.

Prenatal alcohol history \u2013 setting a threshold for diagnosis requires a level of detail and accuracy that does not exist

BackgroundThe revised 2015 Canadian Guidelines requires a more specific prenatal alcohol exposure (PAE) threshold for a Fetal Alcohol Spectrum Disorder (FASD) diagnosis. The unintended consequences of adhering to the suggested PAE threshold for an FASD diagnosis and the challenges professionals face in obtaining an accurate PAE history were explored.MethodsUsing a mixed methods study design, the study was carried out in two parts (Quantitative and Qualitative). PAE history and FASD diagnosis was reviewed retrospectively from 146 patient charts referred for an FASD assessment between 2011 and 2016. The challenges experienced when collecting the PAE history were explored through interviews with 23 professionals. Statistical analysis was performed using SPSS (IBM SPSS Statistics 20.0).ResultsOf 146 assessments, only 21.9% met the revised 2015 PAE guidelines while 79.4% met the previous 2005 PAE criteria. Of 146 clients, 54.1% met brain criteria for FASD yet of those only 29.1% met the revised PAE criteria whereas 70.9% did not and therefore could lose their FASD diagnosis under a diligent application of PAE level suggested in the 2015 Guidelines. Thematic analysis of the interview data indicated that obtaining a reliable PAE history was challenging and a combination of methods are employed to get credible information.ConclusionConfirming PAE history can be difficult, but ensuring reliable and accurate details on quantity, frequency, and timing of exposure is impossible in a clinical setting. Three out of every four individuals in the present study lost their FASD diagnosis following implementation of 2015 Canadian FASD Guidelines. A threshold might also imply that alcohol consumption below threshold is safe. The 2015 Canadian Guidelines need further refinement regarding the PAE criteria.

Challenges in Accurately Assessing Prenatal Alcohol Exposure in a Study of Fetal Alcohol Spectrum Disorder in a Youth Detention Center.

BackgroundPrenatal alcohol exposure (PAE) can result in permanent disability, including physical, neurodevelopmental, and cognitive impairments, known as fetal alcohol spectrum disorder (FASD). Individuals with FASD are more likely to engage with the law, including being placed in detention, than individuals without FASD. Young people who were sentenced to detention participated in a FASD prevalence study in Western Australia. The diagnosis of FASD requires a multidisciplinary assessment and confirmation of maternal alcohol consumption during pregnancy. Obtaining accurate assessment of PAE for young people participating in the study was challenging.MethodsAn interview with the birth mother or other responsible adult for young people sentenced to detention in Western Australia was conducted as part of the FASD assessment. The Alcohol Use Disorders Identification Test consumption subset (AUDIT‐C), other relevant questions, and documentary evidence were used to assess PAE. PAE was categorized according to the Australian Guide to the Diagnosis of FASD: no PAE reported, confirmed or confirmed high‐risk, or unknown.ResultsAmong the 101 participants, information on PAE was unable to be obtained for 13 (13%) young people. Of the remaining 88 participants with information of PAE, 41 reported no PAE and 47 had confirmed PAE.ConclusionsAccurately assessing prenatal alcohol consumption is challenging in any setting, but it is exceptionally challenging when assessed 13 to 17 years retrospectively as part of a FASD assessment for a young person sentenced to detention. Recording and recoding detailed qualitative responses was required to provide an accurate assessment of PAE using the AUDIT‐C. Standardized recording of PAE in antenatal and birth records would facilitate later assessments for FASD and provide opportunities for advice and support for women who continue to drink during pregnancy.