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Facial features of a child with a full FAS diagnosis
Source publication
This article describes work undertaken in connection with an ongoing research project funded by the Training and Development Agency for Schools. It illustrates the educational implications of foetal alcohol spectrum disorders (FASD) and its implications for the educational workforce in seeking to meet the needs of those children who are affected.
Contexts in source publication
Context 1
... facial anomalies that are a distinctive hallmark of FAS (see Figure 1) are formed only when there is maternal alcohol consumption at a particular stage of the pregnancy. The three core features are: short palpebral fissures, thin upper lip and philtrum elongation. ...
Context 2
... facial anomalies that are a distinctive hallmark of FAS (see Figure 1) are formed only when there is maternal alcohol consumption at a particular stage of the pregnancy. The three core features are: short palpebral fissures, thin upper lip and philtrum elongation. Other characteristic fea- tures include: a flattened midface; epicanthal folds; a short upturned nose; receding forehead and chin; asymmetrical ears. However, this facial dysmorphology, which typically makes the syndrome noticeable in the post-birth period and infancy, can dissipate with age, thus reducing the likelihood of diagnosis as the child grows older (Greenbaum et al., ...
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Citations
... Sue's experiences reflect what existing studies (Blackburn, Carpenter, & Egerton, 2010;Green, 2007;Job et al., 2013;Koren, Fantus, & Nulman, 2010;OCECYMH, 2014) have said about educators in the school system lacking knowledge about FASD. There is a lack of systematic training and preparation for teachers at the pre-service and in-service levels to work with children affected by FASD (Job et al., 2013). ...
Fetal alcohol spectrum disorder (FASD) is a significant cause of cognitive and developmental disability among children in Canada, with accompanying lifelong risks to independent living. Previous studies have called for improved home–school collaboration to support children with FASD, but barriers remain for parents seeking collaborative involvement. Using a narrative approach, this article presents one parent’s experiences advocating for children with FASD within a school system in central Canada. Emerging narrative themes were schools’ lack of knowledge and awareness of FASD, the difficulty of choosing a school or program, and the importance of listening to parents and families. Within the context of previous findings, this parent’s narrative confirms and makes urgent key areas of need for improved support of children with FASD. These include improved training for teachers and administrators, flexible accommodations including specialized environments when needed, and above all an active commitment to trusting collaborations and encouragement of parental involvement.
... In recent history, educational institutions have generally acknowledged a duty to support students with complex disabilities by equipping educators with the tools necessary to meet their needs (Ryan and Ferguson 2006). In attempting to fulfill this obligation, educators face the challenge of navigating a constantly growing array of new and emerging disorders (Blackburn et al. 2010). Accordingly, there is a need for programs and services that address the needs of specific target populations of students with complex disorders. ...
... Students with FASD present with unique learning difficulties that necessitate specially designed educational approaches. General theories of learning often fall short in understanding the learning strategies employed by these students (Blackburn et al. 2010). For example, students with FASD often have well-developed short term verbal recall and are able to Bparrot back^items that have been taught to them without a full understanding of the item's meaning (Mattson et al. 1996). ...
... Furthermore, depending on the severity and nature of impairment, FASD may have little effect on students' cognitive functioning or learning abilities (Streissguth et al. 1991). Challenges to educational success often present in other ways such as hyperactivity, poor social functioning, or disruptive behaviors (Blackburn et al. 2010). ...
The purpose of this study was to identify services that caregivers of youth with fetal alcohol spectrum disorder believe would help youth with FASD succeed in school. Sixteen caregivers participated in telephone interviews that included the question: “What services would help youth be successful in school?” A concept mapping technique was employed, in which responses were grouped together by participants and the grouping data was analyzed using multidimensional scaling and cluster analysis. Six concepts emerged from the question about services, including the following: (1) being heard by educators, (2) FASD-informed educators, (3) involvement in child’s education, (4) resources and accommodations, (5) supportive knowledge base, and (6) support and understanding at home. Concepts were compared to the existing literature.
... Scotland as a devolved nation has developed some procedures regarding FASD (Watts 2015) but this has yet to be replicated in the other home nations of the UK. Educational assessment and research have been conducted in the UK to identify strategies for the classroom (Blackburn, Carpenter, and Egerton 2010), but again, the implementation of these recommendations widely is unclear. Once again, that lack of consistent central coordination has left the situation unresolved. ...
Extant literature is sparse with regards to the relationship between caregiver reports and neuropsychological tests of executive functioning in Fetal Alcohol Spectrum Disorders (FASD). The goal of this paper was determining the clinical utilities of executive functioning measures used in the United Kingdom national FASD clinic. We examined relationships between outcomes on the Behavior Rating Inventory of Executive Function (BRIEF) and the Delis-Kaplan Executive Function System (D-KEFS), as part of an ongoing service evaluation. Profiles of executive functioning measures were reported in order to contribute to delineating a profile of executive dysfunction in FASD. Caregivers of 49 people with FASD completed the Parent BRIEF, and 61 people with FASD were administered the D-KEFS. Pearson’s Correlations between all 11 BRIEF scales and the 18 selected D-KEFS subscales showed little relationship. The BRIEF showed a profile of clinically significant elevations in all three Index scores and seven out of the eight Scale scores. Several D-KEFS tests showed below average executive functioning. Both executive function measures have separate clinical utility in demonstrating executive function deficits in FASD. The sample population used in this study also show a similar pattern to FASD populations internationally, suggesting a similar neuropsychological profile is seen in the United Kingdom. However, caregiver reports display little relationship to neuropsychological tests. These measures likely monitor different aspects of executive functioning in different settings. Future research should focus on identifying tests that better relate findings from clinical settings to behavior in daily life.
... Scotland as a devolved nation has developed some procedures regarding FASD (Watts 2015) but this has yet to be replicated in the other home nations of the UK. Educational assessment and research have been conducted in the UK to identify strategies for the classroom (Blackburn, Carpenter, and Egerton 2010), but again, the implementation of these recommendations widely is unclear. Once again, that lack of consistent central coordination has left the situation unresolved. ...
Fetal alcohol spectrum disorder (FASD) is a common disorder, yet one that is still under recognised in the UK. Both the public and professionals in the UK have a limited amount of knowledge about the subject, with the neuropsychological profiles and subtleties of presentation causing confusion. This often means that many people are mislabelled or not diagnosed. We report findings from the UK National FASD behavioural clinic and how these presentations lead to challenges in improving the clinical and research situation in the UK. The UK has the potential to improve research, recognition, provision and behavioural management strategies for this group quickly; however, this will need a more structured approach than is currently in existence.
... Participants indicated that open-door policies, open communication, and collaboration with school personnel supported their efforts to regulate their relationships with their children (stay intertwined to fit in). The importance of relationships between parents of children with FASD and school personnel has also been documented by other researchers (e.g., Blackburn, Carpenter, & Egerton, 2010; Green, 2007; Malbin, 2002 ); however, they only emphasized forms of engagement that promoted children's success . Our study links open communication to positive long-term outcomes for caregivers who are trying to regulate and maintain their relationships with their children, and has implications for educators and others working with children with FASD in school. ...
In this article we describe a grounded theory study of how caregivers of school-aged children with fetal alcohol spectrum disorder (FASD) managed their children's schooling. We completed 30 interviews with 17 caregivers residing in a western Canadian province, as well as document analysis and 25 hours of participant observation. We used constant comparative analysis to construct our substantive theory: intertwining to fit in. The core variable is an iterative cycle caregivers used to resolve their main concerns: preventing their children from failing academically and in social interactions and preventing themselves from being regarded as unacceptable parents. To intertwine to fit in, caregivers used two strategies: orchestrating schooling and keeping up appearances. They also regulated their relationships with their children. "Intertwining to fit in" contributes to the literature on attachment and parenting and extends explanations about caregivers' advocacy for their children with FASD. The theory has implications for school personnel and practitioners, as well as researchers.
... For high-needs populations such as children with FASDs, consistency in assessment process and practice has been revealed in the literature as being key to implementing well-suited interventions . Ensuring all individuals involved in caring for children with FASDs have the same information and understanding, and considering their suggestions and feedback in the assessment and intervention processes is crucial (Blackburn, Carpenter, & Egerton, 2010). Similar to the call for the inclusion of multiple sources in assessment , participants across all four roles indicated a desire for the incorporation of information useful to strengths-based programming . ...
The present study begins to address the need for evidence-based approaches for guiding the psychological assessment of children with Fetal Alcohol Spectrum Disorders (FASD). This project represents an important step toward increasing links between research and practice in the communication and use of assessment results for informing intervention decisions. Using a qualitative research approach, the current study contributes to knowledge about concerns with current psychological assessment practices and offers suggestions for optimization based on conversations with teachers, administrators, caregivers and allied professionals. Thematic analysis of 11 focus groups and 3 interviews (N = 60) yielded 3 major findings: the need to focus on the whole child, the necessity of an assessment process that is responsive, and building capacity in the school. This study increases the links between research and practice as we move toward a model of assessment for intervention. Such a model has a strong potential for optimizing assessment practices to better meet the needs of children with FASDs as it promotes a shift that focuses on successful child outcomes regardless of diagnosis.
Persons with FASD: Disability and Sexuality
Darlene Brackenreed
Abstract
Sexuality is an essential component of human beings that may be difficult for some people with disabilities to express in satisfying ways. A disability that is often overlooked, partly due to the fact that The Diagnostic and Statistical Manual of Mental Disorders (DSM-V) does not list it as a clinical disorder, is Fetal Alcohol Spectrum Disorder (FASD). Although Lemoine, Harousseau, Borteyrun, and Menuet first identified Fetal Alcohol Syndrome (FAS) in 1968, it is now recognized to be part of a greater Fetal Alcohol Spectrum Disorder (FASD), which refers to a range of effects that can occur in an individual whose mother consumed alcohol during pregnancy (Ryan, 2006, p. 1). These effects can be physical, mental, behavioural, and cognitive (Pelech, Badry, & Daoust, 2013, p. 121). The most common traits that are present in all children with FASD are cognitive confusion, learning and memory impairment, as well as the inability to understand the consequences of their actions (Blackburn, Carpenter, & Egerton, 2009, p. 141). For the purpose of this study adults with FASD and their partners or parents were interviewed to learn of the impacts of the condition of FASD. Their responses to the interview questions identified key areas of concern and needs that are largely not being met. An unexpected finding was the difficulties they have with relationships and sexuality. This article discusses that portion of the results that dealt with disability and sexuality.
Full Text: PDF DOI: 10.15640/jehd.v4n2_1a5
Persons with FASD: Disability and Sexuality
Darlene Brackenreed
Abstract
Sexuality is an essential component of human beings that may be difficult for some people with disabilities to express in satisfying ways. A disability that is often overlooked, partly due to the fact that The Diagnostic and Statistical Manual of Mental Disorders (DSM-V) does not list it as a clinical disorder, is Fetal Alcohol Spectrum Disorder (FASD). Although Lemoine, Harousseau, Borteyrun, and Menuet first identified Fetal Alcohol Syndrome (FAS) in 1968, it is now recognized to be part of a greater Fetal Alcohol Spectrum Disorder (FASD), which refers to a range of effects that can occur in an individual whose mother consumed alcohol during pregnancy (Ryan, 2006, p. 1). These effects can be physical, mental, behavioural, and cognitive (Pelech, Badry, & Daoust, 2013, p. 121). The most common traits that are present in all children with FASD are cognitive confusion, learning and memory impairment, as well as the inability to understand the consequences of their actions (Blackburn, Carpenter, & Egerton, 2009, p. 141). For the purpose of this study adults with FASD and their partners or parents were interviewed to learn of the impacts of the condition of FASD. Their responses to the interview questions identified key areas of concern and needs that are largely not being met. An unexpected finding was the difficulties they have with relationships and sexuality. This article discusses that portion of the results that dealt with disability and sexuality.
Full Text: PDF DOI: 10.15640/jehd.v4n2_1a5
Must Inclusion be Special? examines the discord between special and inclusive education and why this discord can only be resolved when wider inequalities within mainstream education are confronted. It calls for a shift in our approach to provision, from seeing it as a conglomeration of individualised needs to identifying it as a conglomeration of collective needs. The author examines the political, medical and cultural tendency of current times to focus upon the individual and contrasts this with the necessity to focus on context. This book distinguishes the theoretical perspectives that are often associated with special or inclusive education and the broad range of interests which depend upon their ongoing development. This examination leads to a problematisation of mainstream education provision, our understanding of why social inequities emerge and how additional support can overcome these inequities. Further chapters explore the underlying challenges which emerge from our use and understanding of the notions of special and inclusive, outlining an alternative approach based upon a community of provision. This approach recognises the interconnectedness of services and the significance of context, and it encapsulates the aspiration of much international legislation for participation and inclusion for all. But it also assumes that we tend towards diffuse practices, services, policies, settings and roles, spread across provision which is variously inclusive and exclusionary. In seeking to create equitable participation for all, support needs to shift its focus from the individual to this diffuse network of contexts. Must Inclusion be Special? emerges from the research base which problematises inclusion and special education, drawing upon examples from many countries. It also refers to the author's research into pedagogy, language and policy, and his experiences as a teacher and the parent of a child identified with special educational needs.
The value of research-informed classroom practices is well recognized and thus this qualitative study was designed to explore, from multiple perspectives, the experiences and influences of classroom practices for students with Fetal Alcohol Spectrum Disorders (FASD). The inductive analysis of 11 focus groups and three interviews involving 60 individuals working closely with this student population—31 teachers, seven administrators, 16 allied professionals, and six caregivers—generated three themes: understanding the whole student, responding within dynamic environments, and optimizing student-centered programming. This study provides an essential step toward better-prepared educators for meeting the learning and developmental needs of students with FASD as well as other complex populations. The implications for developing professional learning opportunities reflective of intentional, reflective, and assimilative classroom practices are discussed.
Foetal alcohol spectrum disorder (FASD) is the most common non-genetic cause of learning disability, affecting around 1% of live births in Europe, and costing an estimated $2.9 million per individual across their lifespan. In adulthood, non-reversible brain damage is often compounded by secondary disabilities in adulthood, such as mental health problems and drug addiction. The challenge for today's educators is: ‘How do we teach children with FASD?’ Their unusual style of learning and their extreme challenging behaviour is out of the experience of many teachers. This article, written by Professor Barry Carpenter, OBE, National Director of the Specialist Schools & Academies Trust Complex Learning Difficulties and Disabilities Research Project, considers the status of FASD in the UK, and provides an overview of the author's recent research into effective educational strategies within the framework of Every Child Matters. Only government-led approaches can lead to improvements in the quality of teaching and learning for children with FASD and their future life chances.
